About Me
- Gembles
- I love finding new worlds through writing and reading. I am excited by creating new flavours and tastes in the kitchen. I am fascinated by nutrition and healthy lifestyle choices. I adore my my dog, family and friends.
Monday, 9 September 2013
Glimpse into Chronic Fatigue Syndrome
A couple of weeks ago, I went to see my doctor, and came out feeling like we had had a break though. I have been seeing him for close to a year now, and he has tested me for so many conditions in an attempt to explain my symptoms. I have had several tests come back out of whack, and now, along with a new result showing that I have had Ebstein Barr Virus in the past, combined with my symptoms and ruling out other similar conditions, he has officially diagnosed Myalgic Encephalitis/Chronic Fatigue Syndrome. Along with that I already knew I also have Hashimoto's Thyroiditis (an autoimmune condition), multiple food intolerances, Fructose Malabsorption, low parathyroid function, and a couple of other things I will have to monitor.
Tuesday, 6 August 2013
Glimpse into defining ourselves through chronic illness
I read some advice recently about not letting your illness define you. This initially sounded logical, and quite a basic instinct. However upon mulling it over, I started questioning the feasibility of this concept, when you are deep in the throws of a chronic condition.
Glimpse into the misconceptions surrounding pushing through chronic illness
This morning, my mum and I were talking about people's perceptions of you when you have a chronic health problem. I know that I have touched on this before, but when you are living with an ongoing issue, it is tough enough without having to deal with people's misconceptions and judgements. We came to the conclusion that no one can really understand the situation unless they actually live through it, or are very close to someone living with it. Mum is the closest person to me in this process, and she even admits to sometimes not understanding, but she truly gets the roller coaster, the hard times, and the frustrations.
The most difficult thing I find that people don't understand, is that some days I can push through, and others I can't. I am one of the lucky ones. Some people with chronic fatigue, pain and fainting issues are in bed all day, every day, and basic things become mammoth tasks. Yes, I can sometimes have a couple of hours where I can put on a brave face, smile, and have fun, or do gentle chores. But what some people don't see, or don't choose to acknowledge, is that the process of getting myself ready, out of the house and to that point was a huge effort. They also do not see that during those smiles I am often feeling bad, and afterwards, I rest on the couch or in bed for hours or days. Sometimes, I do have to cancel plans, because I just feel too bad that there is no pushing through. But on days I can manage to push through, and hide my paleness and dark eyes with makeup, I don't miraculously feel 100%! Maybe that is part of the problem, because I do not voice and make known the invisible symptoms to people around me, or I will say that I am feeling better than I actually am. But I don't want to be "that sick girl who is always complaining"!
Glimpse into a life transformation
As I deal with a chronic illness that prevents me from taking part in activities that I once loved to do, I take inspiration from people who have managed to change their bodies into something amazing. Whether it is due to chronic illness, a busy and hectic lifestyle, poor choices, or a lack of resources and opportunity, there are so many reasons why people can find themselves in a body that they are less than happy with. I believe that we can all work with what we have and improve the fantastic homes that we live in - after all, it is the only one we will ever get! Whether this means that you will be able to get out of bed for a few hours a day, or whether it means taking part in an ironman, there is a level for everyone that we can aim for, and do everything in our power to reach.
I was lucky enough to interview a woman who has turned her body and life around. She describes her health in the past to have been appalling. She spent years heavily binge drinking two to three times a week, as well as smoking two to seven cigarettes a day, plus an extra pack on a night out. She ate fast and processed foods regularly and took no notice of what was in the food, such as additives and sugars. Her name is Gabrielle, and she decided, while sitting in the smoking area of a pub, intoxicated, that it was time to make a change. She is not only improving her body for her health, but will be competing in the INBA 2013 QLD State Championships for Body Building. What a goal!
This is where Gabe found her body to be when she decided enough was enough! These are photos that have motivated her to keep going with her change.
I was lucky enough to interview a woman who has turned her body and life around. She describes her health in the past to have been appalling. She spent years heavily binge drinking two to three times a week, as well as smoking two to seven cigarettes a day, plus an extra pack on a night out. She ate fast and processed foods regularly and took no notice of what was in the food, such as additives and sugars. Her name is Gabrielle, and she decided, while sitting in the smoking area of a pub, intoxicated, that it was time to make a change. She is not only improving her body for her health, but will be competing in the INBA 2013 QLD State Championships for Body Building. What a goal!
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This is where Gabe found her body to be when she decided enough was enough! These are photos that have motivated her to keep going with her change.
Glimpse into chronic illness guilt; it's a fine line
This chronic illness thing can really get you feeling ticked off at times! I feel like I get a grasp on how to handle things, and then something happens and bam, I am back to feeling alone, and unsure of how to get out of this never ending tunnel. I am not writing this for pity. I want people in similar situations to hear this and know they aren't alone. And maybe our shared experiences can come up with a way of dealing with it all.
Wednesday, 12 June 2013
Glimpse into socialising with chronic illness
I had an invitation to join a not to be missed, important and happy family celebration in the form of a high tea at a hotel on Sunday. This posed many problems for my body...preparation to get ready for a fancy tea, a long train trip to get to the hotel, an unknown in terms of the food, and hours spent away from my rest inducing couch. I was however, determined and optimistic to make it to this special do.
Glimpse into the briefest of updates
The redo of my parathyroid hormone level came back on Friday super low again. However, the other levels that usually are effected with this problem were not as out of whack as you might expect. So today, after advice from my specialist, I had more bloods taken, and will test my parathyroid level again...third time is a charm! I have even stumped the endocrinologist specialist! More waiting...more tests...more unknowns...
On the upside, the test for arthritis of the spine came back negative, so that is a win right there.
Friday, 17 May 2013
Glimpse into the chronic illness rollercoaster
I have had another week riding the rollercoaster that is chronic illness and the hunt for answers and treatment.
Glimpse into smiling from the inside
(Published May 6th)
I have had postural hypotension for so long that for the majority of the time, I can be losing my vision or feeling dizzy and lightheaded, and people around me do not know! In the same sense, I am realising that I can be feeling nauseous, aching, and exhausted inside these days, but people will comment on how well I am managing a task, and that I am having such a good day! I give them a shocked reaction, thinking "what?! But I feel gross!"
Today, I am thinking that this may indicate:
1.) That I am getting a little better, slowly slowly! Yay!
2.) That I am dealing with what I am faced with, and learning how to manage my gentle activities without giving into the discomfort (because I am so lucky and have so much help and support throughout the day).
3.) That I am risking slipping back into my old thinking of pushing myself so that I can do the things I want to do, and so the things that will make others happy are done, and I could overdo it.
4.) That my positivity and attempt to keep my attitude strong and happy is starting to take effect.
I have had postural hypotension for so long that for the majority of the time, I can be losing my vision or feeling dizzy and lightheaded, and people around me do not know! In the same sense, I am realising that I can be feeling nauseous, aching, and exhausted inside these days, but people will comment on how well I am managing a task, and that I am having such a good day! I give them a shocked reaction, thinking "what?! But I feel gross!"
Today, I am thinking that this may indicate:
1.) That I am getting a little better, slowly slowly! Yay!
2.) That I am dealing with what I am faced with, and learning how to manage my gentle activities without giving into the discomfort (because I am so lucky and have so much help and support throughout the day).
3.) That I am risking slipping back into my old thinking of pushing myself so that I can do the things I want to do, and so the things that will make others happy are done, and I could overdo it.
4.) That my positivity and attempt to keep my attitude strong and happy is starting to take effect.
Glimpse into working on a good attitude for the week
(Published May 5th.)
The past couple of weeks have been filled with more bad health days than good. I have, however, been able to meet a friend's gorgeous newborn son, managed to treat myself to a beautiful new dress, sat in the sun with a good friend who I have not seen in months, and had some relaxed girl time with the bestie, and Mum. These lovely events broke up the hours of nausea, stiffness, head aches, fatigue, brain fog, some personal sadness, and blood tests.
The past couple of weeks have been filled with more bad health days than good. I have, however, been able to meet a friend's gorgeous newborn son, managed to treat myself to a beautiful new dress, sat in the sun with a good friend who I have not seen in months, and had some relaxed girl time with the bestie, and Mum. These lovely events broke up the hours of nausea, stiffness, head aches, fatigue, brain fog, some personal sadness, and blood tests.
Monday, 13 May 2013
Glimpse into insomnia
Lying in bed, exhausted but wide eyed. Tossing and turning. Waking at 4am and not returning to sleep. Rising in the morning feeling exhausted and unrefreshed.
Whichever way it is that you are effected, being unable to sleep properly is a horrendous experience for everyone. And believe it or not, chronic fatigue and insomnia can coexist!
Ironically, I have tried to write this post several times, and have been too tired and brain foggy to think about it properly, so have put it off!
Insomnia...why can't it start in the morning?
Wednesday, 1 May 2013
Glimpse into our driving forces
I have a post, about dealing with insomnia, ready to put up on my blog, but right now, as I lie on the couch feeling very unwell, and needing to distract myself from my body, I find myself writing another.
I am worried that I am not reacting well to the latest medication addition. I really hope not. It is hard to tell sometimes, whether I am just having a particularly bad week in the life of being in this body, or whether the symptoms are caused by something else! So it will be off to get blood tests done soon, to see if anything can be identified.
Days like these make me think about what gets us going. What pulls our eyelids open, enables us to swing our aching legs around to the side of the bed, and put one slow foot in front of another?
For me, it is definitely my family at the moment. I could quite easily hide under the mounds of warm blankets and wallow in the grossness my body is feeling. However, I enjoy talking to my parents, and am trying to make the most of the time that I am living with them while I am unwell. They look after me so well, and we try to do nice things together when my body will allow. I also am aware that if I let myself mope and hide, it makes them feel worried and sad, and I do not want to be the cause of that.
Some times, my getting going is slightly more enforced than others! My Mum will come in and open the curtains, despite loud and miserable protests coming from underneath the blankets! She will pester until I go outside and sit in the sun. Some days I realise that I haven't even walked downstairs, let alone outside! I keep in my little bubble of couch, bed, computer desk, kitchen, and bathroom. If Mum wasn't helping me along, some days I probably wouldn't make it that far! Sometimes I resent it, but it always makes something better. Today, I feel horrible, but she took me for a little walk in the warm and sunny park, and even though I felt ridiculously nauseous and achy the whole time, when we got back to the car, I felt about 3% better, and that is 3% better which I would not have felt without her love!
Days that I have friends coming to visit also help me get going. I do have some very special people in my life, and for that, I am very grateful and lucky. Sometimes I think to myself that my friends probably think I am making this whole health thing up; it is amazing how the pleasure of being with friends can make your whole body feel a little bit better!
There are several people that I miss dreadfully, and some days this really does not help me deal with my situation, but other days, the thought of possibly speaking to them or getting a message from them makes me intrigued in the day.
It seems silly, but some days, just the idea of a bowl of my favourite breakfast (quiona, chia seeds, rice milk and raspberry sauce) with a mug of tea, excites me enough to begin the day! - Obviously, I currently lead a fairly simple life!!
The desire to get better and fix my body is also a driving force for me. I know that ignoring the world all day will not help my health, despite how right it might feel at the time! Every little bit counts, so I know that I need to keep moving, keep eating, keep taking my medications, keep smiling, and one day, my body will improve.
My current lifestyle is teaching me that the small things can really be the big things, as corny as that might sound. Knowing that you are loved is by no means a small thing, but the supportive little acts that come from a loved one, or even an acquaintance, can really make the discomfort a little more bearable. A happy, simple note or message from a friend, a person willing to spend time with you on the couch, someone bringing in a bowl of breaky and a mug of tea to your bed, a good book, or some sunshine spilling in through the window; it all helps!
I think that we all have those moments at some point in our lives where we wonder what is the point. It is unrealistic to expect otherwise. But sometimes, when we are at our lowest, grimly hanging onto optimism is all we have, and giving in and hiding ourselves away would only hurt others, and ourselves. If we keep plodding along, find those little things that push us along, I am sure that one day we will find the reward.
What gets you moving? I don't mean you get up because otherwise the alarm that you tortuously placed on the other side of the bedroom won't get turned off. Or the kids are fighting each other and begging for breakfast. I mean, what is that special thing that makes you feel like the effort will be worth it?
We all need to stop once in a while in this crazy, hectic world we live in, and take stock of what makes us tick, and be grateful to those things. I hope that you do not ever have to be in a situation of sickness to notice these acts, moments, and driving forces. Tomorrow morning, before you open your eyes on the world, acknowledge those things that enable you to welcome the day.
I am worried that I am not reacting well to the latest medication addition. I really hope not. It is hard to tell sometimes, whether I am just having a particularly bad week in the life of being in this body, or whether the symptoms are caused by something else! So it will be off to get blood tests done soon, to see if anything can be identified.
Days like these make me think about what gets us going. What pulls our eyelids open, enables us to swing our aching legs around to the side of the bed, and put one slow foot in front of another?
For me, it is definitely my family at the moment. I could quite easily hide under the mounds of warm blankets and wallow in the grossness my body is feeling. However, I enjoy talking to my parents, and am trying to make the most of the time that I am living with them while I am unwell. They look after me so well, and we try to do nice things together when my body will allow. I also am aware that if I let myself mope and hide, it makes them feel worried and sad, and I do not want to be the cause of that.
Some times, my getting going is slightly more enforced than others! My Mum will come in and open the curtains, despite loud and miserable protests coming from underneath the blankets! She will pester until I go outside and sit in the sun. Some days I realise that I haven't even walked downstairs, let alone outside! I keep in my little bubble of couch, bed, computer desk, kitchen, and bathroom. If Mum wasn't helping me along, some days I probably wouldn't make it that far! Sometimes I resent it, but it always makes something better. Today, I feel horrible, but she took me for a little walk in the warm and sunny park, and even though I felt ridiculously nauseous and achy the whole time, when we got back to the car, I felt about 3% better, and that is 3% better which I would not have felt without her love!
Days that I have friends coming to visit also help me get going. I do have some very special people in my life, and for that, I am very grateful and lucky. Sometimes I think to myself that my friends probably think I am making this whole health thing up; it is amazing how the pleasure of being with friends can make your whole body feel a little bit better!
There are several people that I miss dreadfully, and some days this really does not help me deal with my situation, but other days, the thought of possibly speaking to them or getting a message from them makes me intrigued in the day.
It seems silly, but some days, just the idea of a bowl of my favourite breakfast (quiona, chia seeds, rice milk and raspberry sauce) with a mug of tea, excites me enough to begin the day! - Obviously, I currently lead a fairly simple life!!
The desire to get better and fix my body is also a driving force for me. I know that ignoring the world all day will not help my health, despite how right it might feel at the time! Every little bit counts, so I know that I need to keep moving, keep eating, keep taking my medications, keep smiling, and one day, my body will improve.
My current lifestyle is teaching me that the small things can really be the big things, as corny as that might sound. Knowing that you are loved is by no means a small thing, but the supportive little acts that come from a loved one, or even an acquaintance, can really make the discomfort a little more bearable. A happy, simple note or message from a friend, a person willing to spend time with you on the couch, someone bringing in a bowl of breaky and a mug of tea to your bed, a good book, or some sunshine spilling in through the window; it all helps!
I think that we all have those moments at some point in our lives where we wonder what is the point. It is unrealistic to expect otherwise. But sometimes, when we are at our lowest, grimly hanging onto optimism is all we have, and giving in and hiding ourselves away would only hurt others, and ourselves. If we keep plodding along, find those little things that push us along, I am sure that one day we will find the reward.
What gets you moving? I don't mean you get up because otherwise the alarm that you tortuously placed on the other side of the bedroom won't get turned off. Or the kids are fighting each other and begging for breakfast. I mean, what is that special thing that makes you feel like the effort will be worth it?
We all need to stop once in a while in this crazy, hectic world we live in, and take stock of what makes us tick, and be grateful to those things. I hope that you do not ever have to be in a situation of sickness to notice these acts, moments, and driving forces. Tomorrow morning, before you open your eyes on the world, acknowledge those things that enable you to welcome the day.
Saturday, 27 April 2013
Glimpse into listening to the lessons
Illness, be my mentor.
I have gradually become more unwell over a period of 10 years, and I was often not well prior to that growing up. I have now reached a point where I can not work, I can not drive, I often rely on others to do basic chores for me, such as cooking, shopping and house work, and I spend a lot of time just taking it easy. As a twenty nine year old, this is definitely not what I currently want to be doing. I would much rather be travelling, working, socialising, starting a family, and generally living life! However, since I had to give into being unwell about six months ago, after years of pushing through, I have slowly started to notice the things that it is teaching me. These include:
- Gratitude. I am forever grateful for the things that my body still enables me to do. I sometimes have good days, and take these opportunities to see friends and family, and do things that I enjoy. I read other people's stories who are in so much more pain and discomfort than me every day, and they have so much courage and enthusiasm to keep going. I am thankful for becoming aware of their stories as it gives me strength and perspective. I am also noticing and enjoying the small things in life that you often don't have time for when life is busy and hectic. The moment of relaxation and anticipation with a hot mug of tea in my hands; the smell of a new book; being joined on the couch by a friend to just chat; to have a hug by a family member; to sit in the sun and enjoy the warmth; to sit quietly alone and just think. I am also so thankful to all the people who have provided me with love and help, particularly over the past few months. Granted, it is a small group, but the quantity of loved ones is not what is important, it is by far the quality.
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- Hang on to the people who count. I am so thankful for the people who have stuck around and continued to support and love me despite my inability to give them all that they deserve. I have truly learnt that the people who matter, don't mind, and the people who mind, don't matter. Dwelling on disappointment uses up your meagre and valuable energy supplies when unwell.
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- Remember that it is ok to feel sad and angry; giving into it is a part of healing. Saying that you can't feel sad because someone else has it worse than you, is like saying you can't be happy because someone has it better than you. When it hits you, feel it, be thankful for how it puts other things into perspective, and let it go.
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- Forgiveness is vital to happiness and health. Living with an illness which robs you of your desired lifestyle temporarily or permanently, teaches you that you need to learn to forgive your body, yourself, the universe, and people around you. So often I have found myself asking my body "why are you doing this to me?", and "who would want to be around you when you're so broken?'', and asking the universe "why do you hate me, what did I ever do to you?" I am starting to realise that this thinking just makes hate, anger and sadness fester. Understanding that you are not being punished is fundamental to your recovery. Also, even though I see that you have to let people who are holding you back go, I also believe that forgiving them and yourself as you do so is also crucial, and maybe one day they will find their way back into your life.
- Do what is important. Being unable to do certain things has made me aware of what I really want to do in my life. Things that I had brushed aside as unrealistic before, are now making their way on to future to do lists. We rush along in life doing what we are expected to do; what we think will make us and the people around us happy. But maybe, when our bodies crumble into shadows of their former glory and surrender to illness, we should take this warning and see that we are not leading our lives as we should. Choose to do what makes you happy and healthy; we only get one shot at this life.
"Life is better when you're laughing."
- Listen; to ourselves and to each other. I pushed myself so hard for so long, even though my body was screaming at me to stop. I did this because no one could tell me what was wrong, and I was made to feel like I was overreacting, and just had to keep going. Now that I look back, knowing something was actually wrong, I can't believe what I forced myself through, and the things I put up with from other people because we didn't understand that I was sick. It has taught me that we really do need to listen to our bodies, and we shouldn't have to defend ourselves when we know something is amiss. When we have a cold, or a stomach bug, we know we should give into it, ride it out and rest. Whereas when something arises which is debilitating yet harder to see, without the excessive out flowing of bodily fluids (like chronic fatigue, orthostatic hypotension, thyroid issues, or other invisible chronic illnesses), we insist on struggling through, or don't recognise that others are unwell due to the less visible symptoms. Someone used to regularly ask me "what's wrong?" and get angry at me because I might start out with energy and be upbeat, but then descend into lethargy, and they mistook this as me being upset at them or bored by them. Because I did not understand what was going on, I didn't know how to explain to them, and they would continue to get upset at me. This used to make me feel so useless and desperate, because inside my body felt so heavy and it took everything in me to give as much as I could, and it felt like that never was enough. Now that I know something is wrong, it has become easier to give into it, and stand up for myself. If someone around you is not themselves, understand that it is important to support and love them, whether they can put a name or reason to the cause or not.
- Enjoy where you are in life. Sure, I am not out partying every weekend, a trip to the shops can leave me in bed all afternoon, and lunch with friends sees me struggling to keep up with them. But I try to enjoy what I am able to do because of this illness. I can not work, so I do not have the stress that comes with full time nursing shifts. I am currently living with my parents, so I have a lot of help and do not need to worry about cooking and shopping and cleaning. I have tried to push away the feelings of guilt at not doing these activities; I need to make the most of being able to read a book all day if I choose. Sometimes we need to be selfish, to look after ourselves, and then we will be able to look after others when we have healed. I have gone through mind numbingly boring days, where the minutes painfully tick past so slowly that I feel like insanity will smack me off the couch. But I can not do anything about my situation more than I already am. I can see when I do a couple of hours of gentle activity, that my body is not anywhere near where it needs to be to return to work, so I should be enjoying the time I have, rather than resenting it. How many times do we say "if only I could stay in bed today and watch movies," when we are on our way to work?! Even though it is not as good as it seems, I need to give into the fact that this is where my path is leading me for the time being, and I should make the most of it, and let the healing take place. Even though it is not the life I want to currently be living, it is still ultimately my life, and if I spend these months full of resentment and boredom, I have wasted precious moments.
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There is so much that we can learn from being unwell, or from other people's struggles. It is so important that we do not fill our minds and bodies with bitterness, anger and sadness when we find ourselves in a situation that we can not control. This will slow the healing process, push people away, waste our time, and continue the vicious circle of unhealthiness. Embrace the unique opportunity you have been given to slow down and see what is important, recalibrate, start afresh, and make the best life that you were born to have.
"You were given this life because you are strong enough to live it."
Friday, 19 April 2013
Glimpse into movement; every bit helps!
During the evening of Tuesday April 16th, Mum and I went to a two hour seminar held at the Hilton Hotel by Gwinganna Lifestyle Retreat. The topic of the talk was the concept of using movement to be healthy.
The main message of the evening was perhaps an obvious one, but very overlooked due to our society's current mindset; move. Push, pull, bend, lift, take the stairs, park further away, stand when answering the phone, move, move, move. We have had it drilled into us over the past few years that if we do a session of exercise most days, we will be fit, a healthy weight and live longer, despite sitting at a computer all day, and carrying out tasks in the most convenient, time and energy efficient way. However, the research that is now coming out is that people who do this do not beat the health benefits (hip and waist measurments, lifespan, fitness) gained by the people who just keep moving throughout the day. It does not have to be much; just incidental movement, as much as possible throughout the day.
It struck me that this is not only more beneficial to us and potentially more conveniently attained, it is also easier for people with chronic health issues to warrant as feasible.
On days when the bed or the couch is moulding to the shape of your body, stretching your arms and legs, or turning your pelvic floor muscles on with a gentle clench, is much less confronting than the idea of going for a walk for an hour! I know that I have definitely fallen into the trap of thinking that because I have such poor exercise tolerance and can't do my beloved gym or swimming sessions, that I have to give up on the notion of having any type of fitness or strength, and can sit on the couch and eat cookies, almost guilt free. However this idea that incidental movement every 20 mins or so is more beneficial than a big session once a day, means I am motivated, and am not let off so lightly!
Obviously, some health issues still make this difficult. On days when I am severely fatigued and dizzy, it would be dangerous to not ask for someone else to fill up my water. But on days you can safely do it, use the incidental things that need to be done as a form of exercise. Noone else can go to the bathroom for you, so when you walk there, go the long way! Maybe that means walking around your couch twice on the way out of the lounge room! While you wait for the kettle to boil, clasp your hands together and stretch your arms out in front of you, stretching out your arms and back.
For people who are healthy and going about their day, keep in mind this concept of incidental movemement. If you move every 20 minutes, it does more good for you than an hour at the gym. So, if you're parked at a desk all day, come up with ways that fit your job routine so that you are able to move every 20 minutes. Put the printer further away so that you are forced to walk to it. Physically visit your collegues down the hall rather than emailing them about work issues. Take the stairs instead of the lift (Do you work on floor 28? Don't make excuses!...walk down to floor 27 and take the lift from there, and then next week go to floor 26, and then floor 25....).
A move that the speakers really encouraged was the Asian squat. Sitting in chairs is so bad for us and it is a move that humans are not designed to do. Way back in the beginning, we did not have chairs. Our body design has changed so minutely over those thousands of years, that we should not be doing things too differently from what our first ancestors did. However, our lives are massively different. Bringing one thing back to our day's routine, the Asian squat, could help us to realign our bodies to where they should be. We were advised to do this move for one minute in two sessions a day, but if you can get up to ten minutes, all the better.
Take a look at this great video that I found that has fun with the Asian Squat! http://youtu.be/gWTmg4dHiKg
One speaker said that he eats his breakfast cereal this way each day. There are a lot of daily activities that could be done in this position; cleaning your teeth, watching the tv, drinking your cup of tea, the list goes on! It may take time to build up to being able to keep your heels on the floor, but as you loosen your tight muscles, your legs, hips, back, core and pelvic muscles will all become so much happier. It also massages your insides, so your gut is happier too, and your blood circulation is improved. Studies have shown that communities that practise this move as part of their daily routine, live a lot longer than those that do not.
Do not give up on your one hour session at the gym; that is still a great thing for your body. Just make sure that you do not fall into the misguided thinking that you can be stationary all day, be active for an hour, and be slim and healthy! And if you have a low exercise tolerance due to health issues, be motivated by the notion that every little movement has been proven to greatly improve your level of fitness, maintain a healthy weight, improve your mood, blood flow and so much more!
Just so you know....While I have been sitting here writing this blog post, I have been bouncing my legs under the table, walking to the tap to refill my water (and taking the long way back to my seat), pausing to do Asian squats, stretching my arms and clenching my stomach muscles!
The main message of the evening was perhaps an obvious one, but very overlooked due to our society's current mindset; move. Push, pull, bend, lift, take the stairs, park further away, stand when answering the phone, move, move, move. We have had it drilled into us over the past few years that if we do a session of exercise most days, we will be fit, a healthy weight and live longer, despite sitting at a computer all day, and carrying out tasks in the most convenient, time and energy efficient way. However, the research that is now coming out is that people who do this do not beat the health benefits (hip and waist measurments, lifespan, fitness) gained by the people who just keep moving throughout the day. It does not have to be much; just incidental movement, as much as possible throughout the day.
It struck me that this is not only more beneficial to us and potentially more conveniently attained, it is also easier for people with chronic health issues to warrant as feasible. On days when the bed or the couch is moulding to the shape of your body, stretching your arms and legs, or turning your pelvic floor muscles on with a gentle clench, is much less confronting than the idea of going for a walk for an hour! I know that I have definitely fallen into the trap of thinking that because I have such poor exercise tolerance and can't do my beloved gym or swimming sessions, that I have to give up on the notion of having any type of fitness or strength, and can sit on the couch and eat cookies, almost guilt free. However this idea that incidental movement every 20 mins or so is more beneficial than a big session once a day, means I am motivated, and am not let off so lightly!
Obviously, some health issues still make this difficult. On days when I am severely fatigued and dizzy, it would be dangerous to not ask for someone else to fill up my water. But on days you can safely do it, use the incidental things that need to be done as a form of exercise. Noone else can go to the bathroom for you, so when you walk there, go the long way! Maybe that means walking around your couch twice on the way out of the lounge room! While you wait for the kettle to boil, clasp your hands together and stretch your arms out in front of you, stretching out your arms and back.
A move that the speakers really encouraged was the Asian squat. Sitting in chairs is so bad for us and it is a move that humans are not designed to do. Way back in the beginning, we did not have chairs. Our body design has changed so minutely over those thousands of years, that we should not be doing things too differently from what our first ancestors did. However, our lives are massively different. Bringing one thing back to our day's routine, the Asian squat, could help us to realign our bodies to where they should be. We were advised to do this move for one minute in two sessions a day, but if you can get up to ten minutes, all the better.
Take a look at this great video that I found that has fun with the Asian Squat! http://youtu.be/gWTmg4dHiKg
One speaker said that he eats his breakfast cereal this way each day. There are a lot of daily activities that could be done in this position; cleaning your teeth, watching the tv, drinking your cup of tea, the list goes on! It may take time to build up to being able to keep your heels on the floor, but as you loosen your tight muscles, your legs, hips, back, core and pelvic muscles will all become so much happier. It also massages your insides, so your gut is happier too, and your blood circulation is improved. Studies have shown that communities that practise this move as part of their daily routine, live a lot longer than those that do not.
Sure, she might not look too happy, but for all we know, she is 152, and is babysitting her 83 descendents!!
Do not give up on your one hour session at the gym; that is still a great thing for your body. Just make sure that you do not fall into the misguided thinking that you can be stationary all day, be active for an hour, and be slim and healthy! And if you have a low exercise tolerance due to health issues, be motivated by the notion that every little movement has been proven to greatly improve your level of fitness, maintain a healthy weight, improve your mood, blood flow and so much more!
Just so you know....While I have been sitting here writing this blog post, I have been bouncing my legs under the table, walking to the tap to refill my water (and taking the long way back to my seat), pausing to do Asian squats, stretching my arms and clenching my stomach muscles!
Glimpse into dizziness; my hypotension progress
I have been playing the waiting game for the past few weeks, so have not posted about my personal health progress lately. I have been monitoring to see if the new medication would assist me. It has been six weeks since I started it so it is still a little too early to tell, but it is possible that I am having some positive effects from it! I have had some bad side effects from the drug; headaches and nausea most days, and trouble sleeping, but hopefully they will ease.
On Monday, I went for another regular check up with my GP. We decided to start the next planned medication; Fludrocortisone. It has been a big decision, weighing up the pros and cons. This drug is a type of steroid, similar to the type that is naturally produced by the body, and it will hopefully assist in increasing my blood pressure. Obviously, this is not something to go into lightly. However, next to fatigue, the light headiness, dizziness and loss of vision that I get regularly is having such a huge impact on my life. I have suffered from chronic postural/orthostatic hypotension for as long as I can remember, but at the moment it is at the point where it is dangerous for me to work or drive, and I am rarely let out alone because my family worry that I will end up in a heap by myself! I have experienced becoming lightheaded and blacking out 3 times when driving over the past year or so, and let me tell you, it is an extremely scary situation to be in, and has made me very nervous (hence I have not driven in almost 5 months!). I miss my freedom, so it is one reason pushing me to take the medication.
When Mum tried to fill the script she was told by the pharmacist that they only get a couple of requests for this medication a year, so don't stock it! So we have waited for a delivery and I will start today.
If I am starting a steroid, I wonder if it means that I can not compete at an elite athlete level now? Damn, and I was so close! ;-) But if the alternative is a full body inflatable body suit (these are actually available!), I will take the medication!
I really do hope there is some improvement with this next medication. If this doesn't help, there are not that many options left for my hypotension, if any at all. The doctor would like me to put on weight, as I have lost some lately due to my illness, and he thinks that will help, but at the moment, that is not happening, despite eating regularly! A moment on the lips, and rarely on my hips currently!! Teflon genetics a friend calls it!!
Apart from this, I am just keeping on keeping on. I have been able to get out and do a few things lately, though my stamina is still not fantastic. However, after such a long road, I am happy with small steps! I am feeling positive, and keeping my eye on the prize!
Do you have any experience with Fludrocortisone? I would love to hear any advice anyone has!
On Monday, I went for another regular check up with my GP. We decided to start the next planned medication; Fludrocortisone. It has been a big decision, weighing up the pros and cons. This drug is a type of steroid, similar to the type that is naturally produced by the body, and it will hopefully assist in increasing my blood pressure. Obviously, this is not something to go into lightly. However, next to fatigue, the light headiness, dizziness and loss of vision that I get regularly is having such a huge impact on my life. I have suffered from chronic postural/orthostatic hypotension for as long as I can remember, but at the moment it is at the point where it is dangerous for me to work or drive, and I am rarely let out alone because my family worry that I will end up in a heap by myself! I have experienced becoming lightheaded and blacking out 3 times when driving over the past year or so, and let me tell you, it is an extremely scary situation to be in, and has made me very nervous (hence I have not driven in almost 5 months!). I miss my freedom, so it is one reason pushing me to take the medication.
When Mum tried to fill the script she was told by the pharmacist that they only get a couple of requests for this medication a year, so don't stock it! So we have waited for a delivery and I will start today.
I am well and truly down in the blue section of this graph!
If I am starting a steroid, I wonder if it means that I can not compete at an elite athlete level now? Damn, and I was so close! ;-) But if the alternative is a full body inflatable body suit (these are actually available!), I will take the medication!
I really do hope there is some improvement with this next medication. If this doesn't help, there are not that many options left for my hypotension, if any at all. The doctor would like me to put on weight, as I have lost some lately due to my illness, and he thinks that will help, but at the moment, that is not happening, despite eating regularly! A moment on the lips, and rarely on my hips currently!! Teflon genetics a friend calls it!!
Apart from this, I am just keeping on keeping on. I have been able to get out and do a few things lately, though my stamina is still not fantastic. However, after such a long road, I am happy with small steps! I am feeling positive, and keeping my eye on the prize!
Do you have any experience with Fludrocortisone? I would love to hear any advice anyone has!
Monday, 25 March 2013
Glimpse into remedies for autoimmune symptoms PART ONE
I am always on the look out for new ideas, inspirations, plans, techniques and tricks to make a difference to my many and varied symptoms. I get lost reading articles about exciting and interesting topics; I love blogs, books and magazines about well being, food and health. I also am quite open to experimenting and playing trial and error with myself to find out what works best for me.
Today, I will concentrate on what I find helpful when I have symptoms stemming from having an autoimmune disease. Another day, I will write about what I do when I react to foods.
I am currently having regular acupuncture, moxibustion and massage. I guess you do wonder how much it is actually doing but one session a few weeks ago confirmed to me that yes, it is helping! I walked in feeling pretty gross. I was fairly sure I was developing hyperthyroidism again because I was feeling shaky, achy and stiff, light headed and woozy. As I lay on the table with the acupuncture needles, I could actually feel it all easing up. After a gentle massage too I felt so relaxed, and I walked out with only remnants of the feelings I had come in with. It was exciting, and definitely makes the weekly fork out of $150+ seem worthy and justifiable. I have read that other people with thyroid issues get a lot of relief from this type of treatment too, so give a go; it could work for you! Massage is great as it not only eases the stiffness and aches, but it can help with your mind set too. And it doesn't always have to be a paid session with a trained therapist! It is even more soothing when it is a loved one that is massaging you; it provides a feeling of being loved, supported and understood too!
When I am aching and stiff, I do find that heat can help. Sometimes I avoid it, because it can then also make me feel light headed and weak, but when I can manage it, it does ease things up and it takes my mind off the pain. Run a warm bath, use a hot pack or use a warming rub (I was given Zheng Gu Shui sports liniment from my natural therapist).
One of my most hindering symptoms currently is chronic fatigue. Having suffered from fatigue, it is amazing how you come to understand the difference between being tired and being fatigued. My acupuncturist asked me the other day if I had had a bad sleep the night before and I said yes I had, and that I felt quite tired. He then asked if my energy levels were improving any. I said that today I did feel more energised. He clarified with me, "'So you feel sleepy because you did not sleep well, but you feel quite energised today?" It sounded funny and contradicting, but it was a revelation moment, when someone else understood that they are two separate components. Even having been very active all day and feeling exhausted, is a different feeling to that of fatigue.
Chronic fatigue is a nasty, vicious circle. I wake feeling exhausted, so I lay in bed until hunger takes over. I get up and do a few things, and inevitably end up resting on the couch. If I try to live life and do something fun, or do some chores, I am knocked out for the next few days. I crawl into bed exhausted at the granny bedtime of 8 or 9pm. Sometimes, I have the added joy that is insomnia, and lie there, wide awake for up to six frustrating hours.
My fitness is beyond non existent. Which, for someone who used to go to the gym up to 5 times a week, is disheartening to say the least. I know that if I were able to improve my fitness, it would help my overall feeling of health, as I wouldn't be fighting with being out of shape on top of fatigue. The catch 22 problem there is, of course, trying to drag yourself off the couch, when everything feels heavy, and going for a walk (and then, not fainting when on said walk!). When I do manage to go for a walk, or do a yoga or tai chi session, I do feel the benefits. Even if I end up feeling exhausted, it does help me feel a little more invigorated usually, and at the least, it blows a few of the cobwebs away that have gathered from the couch! I am trying to motivate myself to do some gentle form of activity as regularly as possible (or let others motivate me and drag me kicking and screaming off the couch!). I do encourage and recommend that you try to find something that your body will let you do, because every bit counts.
For more tips on relieving symptoms, read on in Part Two of this blog :-)
Today, I will concentrate on what I find helpful when I have symptoms stemming from having an autoimmune disease. Another day, I will write about what I do when I react to foods.
I am currently having regular acupuncture, moxibustion and massage. I guess you do wonder how much it is actually doing but one session a few weeks ago confirmed to me that yes, it is helping! I walked in feeling pretty gross. I was fairly sure I was developing hyperthyroidism again because I was feeling shaky, achy and stiff, light headed and woozy. As I lay on the table with the acupuncture needles, I could actually feel it all easing up. After a gentle massage too I felt so relaxed, and I walked out with only remnants of the feelings I had come in with. It was exciting, and definitely makes the weekly fork out of $150+ seem worthy and justifiable. I have read that other people with thyroid issues get a lot of relief from this type of treatment too, so give a go; it could work for you! Massage is great as it not only eases the stiffness and aches, but it can help with your mind set too. And it doesn't always have to be a paid session with a trained therapist! It is even more soothing when it is a loved one that is massaging you; it provides a feeling of being loved, supported and understood too!
When I am aching and stiff, I do find that heat can help. Sometimes I avoid it, because it can then also make me feel light headed and weak, but when I can manage it, it does ease things up and it takes my mind off the pain. Run a warm bath, use a hot pack or use a warming rub (I was given Zheng Gu Shui sports liniment from my natural therapist).
One of my most hindering symptoms currently is chronic fatigue. Having suffered from fatigue, it is amazing how you come to understand the difference between being tired and being fatigued. My acupuncturist asked me the other day if I had had a bad sleep the night before and I said yes I had, and that I felt quite tired. He then asked if my energy levels were improving any. I said that today I did feel more energised. He clarified with me, "'So you feel sleepy because you did not sleep well, but you feel quite energised today?" It sounded funny and contradicting, but it was a revelation moment, when someone else understood that they are two separate components. Even having been very active all day and feeling exhausted, is a different feeling to that of fatigue.
Chronic fatigue is a nasty, vicious circle. I wake feeling exhausted, so I lay in bed until hunger takes over. I get up and do a few things, and inevitably end up resting on the couch. If I try to live life and do something fun, or do some chores, I am knocked out for the next few days. I crawl into bed exhausted at the granny bedtime of 8 or 9pm. Sometimes, I have the added joy that is insomnia, and lie there, wide awake for up to six frustrating hours.
My fitness is beyond non existent. Which, for someone who used to go to the gym up to 5 times a week, is disheartening to say the least. I know that if I were able to improve my fitness, it would help my overall feeling of health, as I wouldn't be fighting with being out of shape on top of fatigue. The catch 22 problem there is, of course, trying to drag yourself off the couch, when everything feels heavy, and going for a walk (and then, not fainting when on said walk!). When I do manage to go for a walk, or do a yoga or tai chi session, I do feel the benefits. Even if I end up feeling exhausted, it does help me feel a little more invigorated usually, and at the least, it blows a few of the cobwebs away that have gathered from the couch! I am trying to motivate myself to do some gentle form of activity as regularly as possible (or let others motivate me and drag me kicking and screaming off the couch!). I do encourage and recommend that you try to find something that your body will let you do, because every bit counts.
For more tips on relieving symptoms, read on in Part Two of this blog :-)
Glimpse into remedies for autoimmune symptoms PART TWO
Another impeding element for me is regular light headiness and dizziness. Obviously this can be quite dangerous. Along with fatigue, it is one of the main things stopping me currently from working as a nurse. It also means that I do not drive. My feeling of independence is equal to that of a fourteen year old! Not only do I rely on people to shop, cook and clean for me, but I can't even leave the house when I want to! I am so appreciative of the abilities I do have, because there are so many people out there that have so much less than I do. Of course, at 29 years of age however, having experienced independence and self reliance, to find yourself unable to work, drive or do most of the usual things that one does when looking after themselves, it is by no means an easy task to come to a place of acceptance of this situation! In theory, it sounds great to not have to work, or do house work or groceries, or cook dinner. It all adds up though, and those simple things that you take for granted and even begrudge, are groundings to what makes our lives interesting and filled with opportunity.
I am quite good at coping with my light headiness in that a lot of the time, people around me don't even know that I am blacking out. I have dealt with it for as along as I can remember, so I can often keep walking or carrying out what I am doing, while my vision goes black. I know when I am having an episode that requires me to sit, and so far I have not hit the ground that I can remember! (I have certainly come close, and looked like a drunk staggering along, but I have managed to safely get myself down). I do try the usual recommendations: I drink water regularly, I include salt in my diet, I try to not get too hot and I eat regularly. These techniques don't seem to make a huge difference, but then again, without doing it, it all could be a lot worse. Sometimes I have a feeling of ''not being here." It is a peculiar sensation in which my body keeps moving but my mind feels like it has turned off, so for a brief while I feel like I am flying on auto and the pilot has leaped out with the parachute. I find that the only thing I can do when this happens is press my nails into my palms and try to force myself to concentrate on my surroundings, and I eventually come out of it. I have been aware of this feeling since I was a child.
Other solutions to dizziness can include making sure the people with you regularly are aware. It is so helpful when you don't need to make a big deal of what is happening, and you can just nudge someone and they know that you just need some help; they can hold you up and help you to a seat, without a lengthy explanation of what is happening. I also keep an emergency pack of nibbles with me always, and try to have water on standby too.
Another problem when dealing with a long term illness, is cabin fever. Boredom can send you insane!! Sometimes I am struck by the fact I have no idea what I could do with the upcoming hours stretching before me. I am trying to find things that interest me that are within my current physical ability level. I have been attempting to learn more about my digital SLR camera. Upkeep of this blog gives me something to think about. I read as much as I can. My close friends are great; they understand that I can't plan a certain activity on a certain day now, and are always flexible and accepting of a last minute change. They are also willing to sit with me in my couch world if that is all that I am up to.
It is easy to slip into a feeling of missing out and being left out, but I take strength from knowing that I at least have the ability to do some things, and I have supportive family and friends, and I have the financial ability to look after my health as best as possible. Sometimes it feels like I am at a complete dead end, and nothing is happening for me. Lately though, I have started to look at it like this: My life is a blank canvas. I have the ability to start afresh with the knowledge of who and what is important to me and I can paint it with whichever colours I choose.
I am quite good at coping with my light headiness in that a lot of the time, people around me don't even know that I am blacking out. I have dealt with it for as along as I can remember, so I can often keep walking or carrying out what I am doing, while my vision goes black. I know when I am having an episode that requires me to sit, and so far I have not hit the ground that I can remember! (I have certainly come close, and looked like a drunk staggering along, but I have managed to safely get myself down). I do try the usual recommendations: I drink water regularly, I include salt in my diet, I try to not get too hot and I eat regularly. These techniques don't seem to make a huge difference, but then again, without doing it, it all could be a lot worse. Sometimes I have a feeling of ''not being here." It is a peculiar sensation in which my body keeps moving but my mind feels like it has turned off, so for a brief while I feel like I am flying on auto and the pilot has leaped out with the parachute. I find that the only thing I can do when this happens is press my nails into my palms and try to force myself to concentrate on my surroundings, and I eventually come out of it. I have been aware of this feeling since I was a child.
Other solutions to dizziness can include making sure the people with you regularly are aware. It is so helpful when you don't need to make a big deal of what is happening, and you can just nudge someone and they know that you just need some help; they can hold you up and help you to a seat, without a lengthy explanation of what is happening. I also keep an emergency pack of nibbles with me always, and try to have water on standby too.
Another problem when dealing with a long term illness, is cabin fever. Boredom can send you insane!! Sometimes I am struck by the fact I have no idea what I could do with the upcoming hours stretching before me. I am trying to find things that interest me that are within my current physical ability level. I have been attempting to learn more about my digital SLR camera. Upkeep of this blog gives me something to think about. I read as much as I can. My close friends are great; they understand that I can't plan a certain activity on a certain day now, and are always flexible and accepting of a last minute change. They are also willing to sit with me in my couch world if that is all that I am up to.
It is easy to slip into a feeling of missing out and being left out, but I take strength from knowing that I at least have the ability to do some things, and I have supportive family and friends, and I have the financial ability to look after my health as best as possible. Sometimes it feels like I am at a complete dead end, and nothing is happening for me. Lately though, I have started to look at it like this: My life is a blank canvas. I have the ability to start afresh with the knowledge of who and what is important to me and I can paint it with whichever colours I choose.
Thursday, 7 March 2013
Glimpse into the new plan and standing up for yourself
Doctors can really mess with your head, can't they?!
After the 4 weeks without medication as planned by the endocrinologist, I was awaiting a definite answer and a structured plan with meds and return to work set out when he rang me on Saturday. Instead, he happily told me that my thyroid hormones are normal at the moment, so he didn't want me on any thyroid meds at the moment, and to regularly monitor my levels from now on. Then, after my prompting, he said I could start the medication to increase my blood pressure as dizziness is still a major issue for me. He wanted to leave it at that! In disbelief, I said that I have been fatigued for two years; something has to be done! He said that as my levels were normal, it wasn't my thyroid causing it. So, as all doctors before him, he hung up having given me no answers and leaving the door open on that frequently mentioned but never answered phrase "something else is going".
I was absolutely devastated because it felt like I was back to square one.
Thankfully, I was able to see my GP on Monday. After feeling so frustrated by him last time I saw him, he turned everything around this time and I left feeling much more hopeful than on Saturday!
He said that autoimmune disease can cause symptoms even though your hormone levels are in the normal range. This makes sense as the antibodies remain no matter what amount of hormone your thyroid is releasing. I may have to live with these symptoms, or we may be able to look at more drastic treatments down the track if the upcoming new medications don't help enough. At the moment, I will monitor my blood levels every two months, and medicate when and if necessary to normalise the levels. I have started this week a medication that will hopefully help with my concentration, brain fog, and possibly my energy levels. Then in a few weeks, I will start the medication to increase my blood pressure. These meds can take a few months to take full effect, so the waiting game continues, but hopefully the gradual improvements will start soon. I already take quite a few supplements too that hopefully help given my restricted diet. Then there may be more tests to look for the "something else" to explain the chronic fatigue syndrome. At this point, it doesn't look possible for my return to work for a few more months.
As a patient, you really do have to keep pushing and pushing. As much as doctors want to help, they have time limits and busy work loads, they're tired, and they don't see you in your day to day life. It really is up to you to keep going, and to stand up for yourself and fight to be seen. My advice is to keep all records of results and plans, and keep up to date with all that is going on, and read as much as possible about your conditions and medications. You are the best person to advocate for you! (and supportive family members are good too!)
So the waiting game continues, but now I have some hope that these medications will help to some degree, which after weeks of incorrect medication or none at all, that is something to hold on to. Come on body, let's do this thing!
"It's ok not to be ok, as long as you're not giving up."
After the 4 weeks without medication as planned by the endocrinologist, I was awaiting a definite answer and a structured plan with meds and return to work set out when he rang me on Saturday. Instead, he happily told me that my thyroid hormones are normal at the moment, so he didn't want me on any thyroid meds at the moment, and to regularly monitor my levels from now on. Then, after my prompting, he said I could start the medication to increase my blood pressure as dizziness is still a major issue for me. He wanted to leave it at that! In disbelief, I said that I have been fatigued for two years; something has to be done! He said that as my levels were normal, it wasn't my thyroid causing it. So, as all doctors before him, he hung up having given me no answers and leaving the door open on that frequently mentioned but never answered phrase "something else is going".
I was absolutely devastated because it felt like I was back to square one.
Thankfully, I was able to see my GP on Monday. After feeling so frustrated by him last time I saw him, he turned everything around this time and I left feeling much more hopeful than on Saturday!
He said that autoimmune disease can cause symptoms even though your hormone levels are in the normal range. This makes sense as the antibodies remain no matter what amount of hormone your thyroid is releasing. I may have to live with these symptoms, or we may be able to look at more drastic treatments down the track if the upcoming new medications don't help enough. At the moment, I will monitor my blood levels every two months, and medicate when and if necessary to normalise the levels. I have started this week a medication that will hopefully help with my concentration, brain fog, and possibly my energy levels. Then in a few weeks, I will start the medication to increase my blood pressure. These meds can take a few months to take full effect, so the waiting game continues, but hopefully the gradual improvements will start soon. I already take quite a few supplements too that hopefully help given my restricted diet. Then there may be more tests to look for the "something else" to explain the chronic fatigue syndrome. At this point, it doesn't look possible for my return to work for a few more months.
As a patient, you really do have to keep pushing and pushing. As much as doctors want to help, they have time limits and busy work loads, they're tired, and they don't see you in your day to day life. It really is up to you to keep going, and to stand up for yourself and fight to be seen. My advice is to keep all records of results and plans, and keep up to date with all that is going on, and read as much as possible about your conditions and medications. You are the best person to advocate for you! (and supportive family members are good too!)
So the waiting game continues, but now I have some hope that these medications will help to some degree, which after weeks of incorrect medication or none at all, that is something to hold on to. Come on body, let's do this thing!
"It's ok not to be ok, as long as you're not giving up."
Thursday, 28 February 2013
A glimpse into being in my shoes
This morning, after reading tweets written by other people with long term illnesses, I read again the story of "The Spoon Theory." This is a well written explanation of what it is like to not have a body that is firing on all cylinders. You can find the story here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Even the people who spend a lot of time with me, do not understand what it is truly like to live with an illness that robs you of your true capability. They try to, they think they do, but ultimately they let you down when they expect more from you than you can physically give, and then feel disappointed or hurt by you because you can not give it, when you are just trying your best. I think my mum is really the only person who comes close to truly getting it, without actually going through it herself.
I don't want to use excuses. I want to increase people's awareness of these issues, so there is a better understanding. I have it so much better than a lot of people by far, and I do count my blessings. I do understand the struggle however, and I want to improve people's knowledge of the subject.
As the spoon theory lays out, when you have limited energy reserves, and issues such as pain and dizziness are a frequent occurrence, you have to choose which battles to fight. Sometimes, I will have a shower and it will make me feel better. But a lot of the time, the simple process of getting ready in the morning is so exhausting, that by the time I am ready to leave the house, I could do with a nap! Sometimes, I choose to do something slightly physical, like go to the shops, or do a photography workshop for a few hours. These tasks are gentle, and involve only slow walking, and can even be broken up with regular breaks. However, they completely drain me. I have to choose to do something like that, knowing that I will be physically and mentally spent by the end. I would rather do that than always rest and do nothing; I want to get out there and live! But the thing that disappoints people, is you do something like that, and then they want you to keep giving more, and you can't. Every bone in my body comes to feel like lumps of hot and heavy stone, and I can barely keep my eyes open, and the dizziness and nausea set in, and as much as I would absolutely love to keep going, the only option is to sleep. I get frustrated by this, but I can feel it, so I know I just have to give into it. People who can't feel it, try as they might, don't know why you can't just push a little more, because their bodies allow them to.
It took me a really long time to learn to give into it. When doctors kept telling me there was nothing wrong, I kept pushing myself. So many days at work, I felt like I had to just concentrate on getting through. That upsets me because I couldn't give my best. Trips to the grocery store were usually a downright horrible experience, and then going home to cook dinner every night was a nightmare! By the end of night, I felt absolutely broken. But then people expect you to keep giving, so you can't stop.
Now that I have been told there is something going on with my body, I have been able to ease off myself a little. I am getting better at accepting help, and asking for it. I am better at saying no, I can not do it. I am better at knowing I need to rest, and fitting it into my day.
What would help now would be more people who understand that just because I can't, it doesn't mean I don't want to. More people who understand that I am trying my absolute best, and yes, it isn't equal to what other people can give at their best, and yes it doesn't fit into what people normally do at my age, but it is my current best. So many people have moved out of my life because I can't keep up with them or give them what they want; you definitely learn who you're true friends are when you decline social offers and the like, and then never hear from them again! This time in my life is bloody hard, and I just don't need people giving up on me; it makes me weaker and the struggle is so much harder. People in my situation come to rely on other people, and when that network gets smaller, although it leaves you with the people you can really trust and count on, it makes you feel insignificant, misunderstood, let down and thrown aside. I am a very forgiving person though! I do understand how it would feel for other people, and I would forgive and welcome them back into my life!!
I am (hopefully!) getting really close to finding a solution to my health problems. I am confident that soon I will be more of the me that I used to be. I really hope so. I will have gone through this, and learnt so much. Who is important to me, who I am important to, what my goals are for my life, where my strength comes from. So many people do not have the prospect of getting better, and their motivation to keep going is truly inspiring. Everyone can help eachother, with a little trust and understanding, with love and support, everyone can keep people who are struggling going.
Even the people who spend a lot of time with me, do not understand what it is truly like to live with an illness that robs you of your true capability. They try to, they think they do, but ultimately they let you down when they expect more from you than you can physically give, and then feel disappointed or hurt by you because you can not give it, when you are just trying your best. I think my mum is really the only person who comes close to truly getting it, without actually going through it herself.
I don't want to use excuses. I want to increase people's awareness of these issues, so there is a better understanding. I have it so much better than a lot of people by far, and I do count my blessings. I do understand the struggle however, and I want to improve people's knowledge of the subject.
As the spoon theory lays out, when you have limited energy reserves, and issues such as pain and dizziness are a frequent occurrence, you have to choose which battles to fight. Sometimes, I will have a shower and it will make me feel better. But a lot of the time, the simple process of getting ready in the morning is so exhausting, that by the time I am ready to leave the house, I could do with a nap! Sometimes, I choose to do something slightly physical, like go to the shops, or do a photography workshop for a few hours. These tasks are gentle, and involve only slow walking, and can even be broken up with regular breaks. However, they completely drain me. I have to choose to do something like that, knowing that I will be physically and mentally spent by the end. I would rather do that than always rest and do nothing; I want to get out there and live! But the thing that disappoints people, is you do something like that, and then they want you to keep giving more, and you can't. Every bone in my body comes to feel like lumps of hot and heavy stone, and I can barely keep my eyes open, and the dizziness and nausea set in, and as much as I would absolutely love to keep going, the only option is to sleep. I get frustrated by this, but I can feel it, so I know I just have to give into it. People who can't feel it, try as they might, don't know why you can't just push a little more, because their bodies allow them to.
It took me a really long time to learn to give into it. When doctors kept telling me there was nothing wrong, I kept pushing myself. So many days at work, I felt like I had to just concentrate on getting through. That upsets me because I couldn't give my best. Trips to the grocery store were usually a downright horrible experience, and then going home to cook dinner every night was a nightmare! By the end of night, I felt absolutely broken. But then people expect you to keep giving, so you can't stop.
Now that I have been told there is something going on with my body, I have been able to ease off myself a little. I am getting better at accepting help, and asking for it. I am better at saying no, I can not do it. I am better at knowing I need to rest, and fitting it into my day.
What would help now would be more people who understand that just because I can't, it doesn't mean I don't want to. More people who understand that I am trying my absolute best, and yes, it isn't equal to what other people can give at their best, and yes it doesn't fit into what people normally do at my age, but it is my current best. So many people have moved out of my life because I can't keep up with them or give them what they want; you definitely learn who you're true friends are when you decline social offers and the like, and then never hear from them again! This time in my life is bloody hard, and I just don't need people giving up on me; it makes me weaker and the struggle is so much harder. People in my situation come to rely on other people, and when that network gets smaller, although it leaves you with the people you can really trust and count on, it makes you feel insignificant, misunderstood, let down and thrown aside. I am a very forgiving person though! I do understand how it would feel for other people, and I would forgive and welcome them back into my life!!
I am (hopefully!) getting really close to finding a solution to my health problems. I am confident that soon I will be more of the me that I used to be. I really hope so. I will have gone through this, and learnt so much. Who is important to me, who I am important to, what my goals are for my life, where my strength comes from. So many people do not have the prospect of getting better, and their motivation to keep going is truly inspiring. Everyone can help eachother, with a little trust and understanding, with love and support, everyone can keep people who are struggling going.
Tuesday, 26 February 2013
Glimpse into a brief update
The next few days make up the last of my month with no meds, and then I get bloods taken...again. I am starting to get apprehensive about what the doctor will say, because of the niggling worry that this next step may not work either. I am interested to hear whether I have Hashimoto's or Graves' though, and I am keen to try out medications that suit. I really, really need to see some improvement soon. I will never give up, but something good needs to happen for me sometime soon! It feels like a never ending battle that is in slow motion. I am stuck in a repetitive cycle of resting, trying to do something, becoming exhausted, resting... Everything that is important to me has been effected because of all these stupid health problems. It can't be said that I lack motivation to get better!!
"To keep the body in good health is a duty...otherwise we shall not be able to keep our mind strong and clear." -Buddha.
"To keep the body in good health is a duty...otherwise we shall not be able to keep our mind strong and clear." -Buddha.
Tuesday, 12 February 2013
Glimpse into the specialist appointment
I haven't written for a while. Basically, I was a little lost for words after my specialist appointment!! But today I find myself lying on the bed feeling pretty gross, reading motivational articles, books and blogs about good health, clean eating and wellness, and I feel inspired to find those words!
The much anticipated and nerve wracking specialist appointment was for the most part worthwhile and helpful. The doctor was very keen to listen and help, and although not that much older than me he seemed to know his stuff (though I do have to remember I am getting old and having a doctor my age is more likely now!). I do feel frustrated because he said he doesn't think all my symptoms are from the autoimmune disease, so yet again another doctor raises the possibility of something else going on, but can't bring an answer with that suggestion! My blood boils when I hear a doctor say "something else is going" because it is never followed by "and that something else is...."!
He did a thorough examination, and listened to my lengthy list of symptoms. Much to my relief he has ruled out arthritis or other autoimmune joint related disorders, which I was concerned I was developing.
He wants to improve my dizziness and light headeness, which is such an issue for me. Over the years, doctors have mentioned the availability of drugs to improve my low blood pressure to help this (I generally sit on a BP of about 90/60mmHg, and drop to a systolic pressure of about 80 or lower when I stand, which makes for staying upright or seeing through black vision a tad interesting!!). So he has suggested starting Fludrocortisone, which is a steroid that causes fluid and salt retention so as to increase the blood pressure, and hopefully result in more upright-ness and less starry vision!! (though maybe I will become a big puffy ball of oedema! Attractive!). It seems like a fairly hardcore drug with many potential side effects, but I think I have decided that I will give it a go, taking in the fact that being light headed and dizzy has caused me to leave work countless times over the years, and is the main reason I haven't driven for the past 3 months.
The part of the consultation that left me speechless was the bit where he suggested I may have Grave's Disease, not Hashimoto's disease!! This is the same as Hashimoto's in that it is an autoimmune disease that attacks the thyroid, but it causes too much thyroid hormone production, as opposed to too little. I had queried this myself in my weeks of reading, but I don't fit some of the symptoms, and in trusting my GP, I had discounted it. (But I don't fit all the Hashimoto's symptoms either, and most patients rarely fit all the symptoms on a list). It turns out that I was right to fight for a specialist appointment, because a test to check for Grave's disease, that could have easily been done during the multiple blood tests I have had done, hasn't been done!!
So, just in case I hadn't been frustrated enough by the painfully slow progress so far, I have been taken off the carbizamole for a month to see what happens!! So another 4 weeks of getting nowhere, and potentially getting unwell again (how does one look forward to a month like that?!). At the end of the month, I will have more blood tests to reveal whether I do have Grave's, or to confirm the Hashimoto's diagnosis, and then we will decided whether I need Carbizamole or Thyroid Hormone replacement. Comical really! I remember my GP saying, "you have an autoimmune disease that is affecting your thyroid. We will call it Hashimoto's; it could be something else, but we will call it Hashimoto's'.''!!!! Excuse me, if there was a test to decide whether it is Hashimoto's or Grave's, why didn't we do it?! Ok, rant over ;-)
Fortuntately, I haven't got suddenly and severly unwell like the first time I came off the Carbizamole. However, I have slowly developed more symptoms or had symptoms increase in intensity in the past 2 weeks that I had less of on the Carbizamole, such as a pounding and racing heart, nausea, a sensitive stomach, weakness and lack of stamina, light headedness and today's new sensation of too much blood in my eyes, as if I am hanging upside down! I have my fingers and toes crossed that I am not developing hyperthryoidism again, but I have to look at it positively that it is more controlled this time and if it happens, at least we will know why.
I am so glad that I stood up to my GP and requested a specialist appointment despite his adamant determination to keep me on. GPs do a fantastic job, particularly my GP who was the first person to look at my symptoms from a different angle and discovered the autoimmune disease, but they might miss something in the more specific areas (it would be impossible to even contemplate that they would know everything about everything!). I am so glad I had people encouraging me to push for it.
Unfortunatately when I have a good day and do a few things, it is inevitably followed up with a day feeling wiped out and miserable (an indication that work would just about kill me at the moment! It definetly got close to doing so for most of 2012!). Yesterday I managed a nice day out with Mum, and even though we took it very easy and had lots of rests and cups of tea, today I feel like even sitting up is too uncomfortable. So I have resigned to my comfy bed with a relaxing playlist on my iPad, an array of books, including the new ''I Quit Sugar" by Sarah Wilson and I feel a nap coming on! (Sarah Wilson is my inspiration as she avoids fructose like me, and she has autoimmune disease too -she has had Grave's and now has Hashimoto's, yet she has it controlled and is for the most part healthy and leads a busy life!).
So I will finish up now, but will aim to update with some new recipes etc soon!
The much anticipated and nerve wracking specialist appointment was for the most part worthwhile and helpful. The doctor was very keen to listen and help, and although not that much older than me he seemed to know his stuff (though I do have to remember I am getting old and having a doctor my age is more likely now!). I do feel frustrated because he said he doesn't think all my symptoms are from the autoimmune disease, so yet again another doctor raises the possibility of something else going on, but can't bring an answer with that suggestion! My blood boils when I hear a doctor say "something else is going" because it is never followed by "and that something else is...."!
He did a thorough examination, and listened to my lengthy list of symptoms. Much to my relief he has ruled out arthritis or other autoimmune joint related disorders, which I was concerned I was developing.
He wants to improve my dizziness and light headeness, which is such an issue for me. Over the years, doctors have mentioned the availability of drugs to improve my low blood pressure to help this (I generally sit on a BP of about 90/60mmHg, and drop to a systolic pressure of about 80 or lower when I stand, which makes for staying upright or seeing through black vision a tad interesting!!). So he has suggested starting Fludrocortisone, which is a steroid that causes fluid and salt retention so as to increase the blood pressure, and hopefully result in more upright-ness and less starry vision!! (though maybe I will become a big puffy ball of oedema! Attractive!). It seems like a fairly hardcore drug with many potential side effects, but I think I have decided that I will give it a go, taking in the fact that being light headed and dizzy has caused me to leave work countless times over the years, and is the main reason I haven't driven for the past 3 months.
The part of the consultation that left me speechless was the bit where he suggested I may have Grave's Disease, not Hashimoto's disease!! This is the same as Hashimoto's in that it is an autoimmune disease that attacks the thyroid, but it causes too much thyroid hormone production, as opposed to too little. I had queried this myself in my weeks of reading, but I don't fit some of the symptoms, and in trusting my GP, I had discounted it. (But I don't fit all the Hashimoto's symptoms either, and most patients rarely fit all the symptoms on a list). It turns out that I was right to fight for a specialist appointment, because a test to check for Grave's disease, that could have easily been done during the multiple blood tests I have had done, hasn't been done!!
So, just in case I hadn't been frustrated enough by the painfully slow progress so far, I have been taken off the carbizamole for a month to see what happens!! So another 4 weeks of getting nowhere, and potentially getting unwell again (how does one look forward to a month like that?!). At the end of the month, I will have more blood tests to reveal whether I do have Grave's, or to confirm the Hashimoto's diagnosis, and then we will decided whether I need Carbizamole or Thyroid Hormone replacement. Comical really! I remember my GP saying, "you have an autoimmune disease that is affecting your thyroid. We will call it Hashimoto's; it could be something else, but we will call it Hashimoto's'.''!!!! Excuse me, if there was a test to decide whether it is Hashimoto's or Grave's, why didn't we do it?! Ok, rant over ;-)
Fortuntately, I haven't got suddenly and severly unwell like the first time I came off the Carbizamole. However, I have slowly developed more symptoms or had symptoms increase in intensity in the past 2 weeks that I had less of on the Carbizamole, such as a pounding and racing heart, nausea, a sensitive stomach, weakness and lack of stamina, light headedness and today's new sensation of too much blood in my eyes, as if I am hanging upside down! I have my fingers and toes crossed that I am not developing hyperthryoidism again, but I have to look at it positively that it is more controlled this time and if it happens, at least we will know why.
I am so glad that I stood up to my GP and requested a specialist appointment despite his adamant determination to keep me on. GPs do a fantastic job, particularly my GP who was the first person to look at my symptoms from a different angle and discovered the autoimmune disease, but they might miss something in the more specific areas (it would be impossible to even contemplate that they would know everything about everything!). I am so glad I had people encouraging me to push for it.
Unfortunatately when I have a good day and do a few things, it is inevitably followed up with a day feeling wiped out and miserable (an indication that work would just about kill me at the moment! It definetly got close to doing so for most of 2012!). Yesterday I managed a nice day out with Mum, and even though we took it very easy and had lots of rests and cups of tea, today I feel like even sitting up is too uncomfortable. So I have resigned to my comfy bed with a relaxing playlist on my iPad, an array of books, including the new ''I Quit Sugar" by Sarah Wilson and I feel a nap coming on! (Sarah Wilson is my inspiration as she avoids fructose like me, and she has autoimmune disease too -she has had Grave's and now has Hashimoto's, yet she has it controlled and is for the most part healthy and leads a busy life!).
So I will finish up now, but will aim to update with some new recipes etc soon!
Tuesday, 22 January 2013
Glimpse into a motivating perspective
I began having minor symptoms of a misbehaving body towards the end of my teens (although I had spent my entire childhood and teens picking up every bug and infection, and Mum always thought something wasn't quite right with me). These symptoms didn't overly affect my life, apart from frequent colds and infections meaning I would cancel on some social events, and miss uni from time to time. However, on the whole, I remember being happy with my body. I would think how my body would put up with anything I did to it when Mum would complain about reactions to face creams and makeup. I noticed that if I put a kilo or two on after a couple weeks of holidaying gluttony, I would quickly and easily lose it when I went back to being healthy. Although I had eye bad sight and a weak ankle, my dodgy immune system was my only real issue, but I got used to it (an immune system which, til my mid twenties seemed weak against any enemy, has now turned on me and is attacking me!!).
Since I started experiencing more severe and frequent symptoms about 4-5 years ago (which then really hit hard in the past 2.5 years), my life seems to have become just about being sick. Up until my mid twenties, I was really happy with what I had done with my life thus far. When I had finished school, I travelled for a year, and then I went to uni. I worked for two years and then travelled, lived and worked overseas. Then after meeting my partner from Adelaide, I moved there for 1.5 years and experienced living and working in a different Australian city. I felt I had done a fair bit for a 26 year old!
But now, almost 3 years later, apart from a bit of travel, I feel like I have just plodded along. I am in the same job and position I was in prior to leaving for overseas, I barely do any of the fun, social events I used to love, I am not married, or starting to have kids, or studying new courses, or travelling the world, or anything I thought I would be doing by the time I was getting closer to 30! That is just not me! I am enthusiastic, and keen to learn and experience new things, I want to start a family, I love to have fun, and take on new responsibilities and make the most of life!!
Being unwell so frequently really does impact on you so much. It can be quite upsetting, frustrating and disheartening. My support network is really my saving grace. I have had so much help and understanding and love from so many people, that I can't imagine giving up and not trying to get to all those things I crave to do eventually.
Although it seems bleak sometimes, it is really a driving and motivating factor. I am off work at the moment for quite some time because of my health, but I am making the most of this time to do the little things that could help in some way to improve things (eating healthily, having accupuncture and massage, resting etc. I may even start yoga soon!). One thing that having a dodgy body teaches you is to fight for the things you really want. I am determined to do everything I can do to look after my body, and to seek out any medical help and advice that can change things. I know I can get back on track, and when I do, it will make all the things I want to do that much better when I do do them! I think I will become a gym junkie for a start!
Since I started experiencing more severe and frequent symptoms about 4-5 years ago (which then really hit hard in the past 2.5 years), my life seems to have become just about being sick. Up until my mid twenties, I was really happy with what I had done with my life thus far. When I had finished school, I travelled for a year, and then I went to uni. I worked for two years and then travelled, lived and worked overseas. Then after meeting my partner from Adelaide, I moved there for 1.5 years and experienced living and working in a different Australian city. I felt I had done a fair bit for a 26 year old!
But now, almost 3 years later, apart from a bit of travel, I feel like I have just plodded along. I am in the same job and position I was in prior to leaving for overseas, I barely do any of the fun, social events I used to love, I am not married, or starting to have kids, or studying new courses, or travelling the world, or anything I thought I would be doing by the time I was getting closer to 30! That is just not me! I am enthusiastic, and keen to learn and experience new things, I want to start a family, I love to have fun, and take on new responsibilities and make the most of life!!
Being unwell so frequently really does impact on you so much. It can be quite upsetting, frustrating and disheartening. My support network is really my saving grace. I have had so much help and understanding and love from so many people, that I can't imagine giving up and not trying to get to all those things I crave to do eventually.
Although it seems bleak sometimes, it is really a driving and motivating factor. I am off work at the moment for quite some time because of my health, but I am making the most of this time to do the little things that could help in some way to improve things (eating healthily, having accupuncture and massage, resting etc. I may even start yoga soon!). One thing that having a dodgy body teaches you is to fight for the things you really want. I am determined to do everything I can do to look after my body, and to seek out any medical help and advice that can change things. I know I can get back on track, and when I do, it will make all the things I want to do that much better when I do do them! I think I will become a gym junkie for a start!
Glimpse into the road to diagnosis
Written 17/01/2013
I have been thinking today about how important it is to keep pushing for answers when you know something is wrong in your body, despite being told you're healthy.
I went from doctor to doctor and had test after test for years, and everything kept coming back normal. Each doctor would eventually shrug their shoulders, tell me nothing life threatening or major was going on, and show me the door. I started to think that I was being overly dramatic, that I must be a hypochondriac and that I just had to push through and get over it. So, feeling like death warmed up, I would battle my way through shifts at work, I would struggle around the grocery store, I would do the house work and cook dinners feeling like I'd collapse any second, and I'd fight to have a social life too.
In hindsight, that is just ridiculous! Before the food intolerances were picked up, I would get pain so bad that I would be bent double in the street and my partner would have to hold me up. I would get to work and faint within an hour and be sent home. I would be so unwell that I would struggle to absorb any food for days at a time. Even since I have had my diet sorted, my energy levels have been non existent, the dizziness continues on a regular basis, my muscles and joints ache and feel stiff, and I only occasionally get a day of feeling good. I can't believe that doctors can just send you on your way and make you feel like it is all in your head when you are that unwell on such a regular basis! When I finally got a diagnosis, it was like I'd smashed through a wall and I could yell, I'm not crazy, see?!!
Doctors can't know everything. You have to keep at it and keep at it until you walk into a room with someone who will crack the mystery. It won't necessarily mean everything will be solved (I definitely have a long way still to go), but you can get there! Things can get better.
I have been thinking today about how important it is to keep pushing for answers when you know something is wrong in your body, despite being told you're healthy.
I went from doctor to doctor and had test after test for years, and everything kept coming back normal. Each doctor would eventually shrug their shoulders, tell me nothing life threatening or major was going on, and show me the door. I started to think that I was being overly dramatic, that I must be a hypochondriac and that I just had to push through and get over it. So, feeling like death warmed up, I would battle my way through shifts at work, I would struggle around the grocery store, I would do the house work and cook dinners feeling like I'd collapse any second, and I'd fight to have a social life too.
In hindsight, that is just ridiculous! Before the food intolerances were picked up, I would get pain so bad that I would be bent double in the street and my partner would have to hold me up. I would get to work and faint within an hour and be sent home. I would be so unwell that I would struggle to absorb any food for days at a time. Even since I have had my diet sorted, my energy levels have been non existent, the dizziness continues on a regular basis, my muscles and joints ache and feel stiff, and I only occasionally get a day of feeling good. I can't believe that doctors can just send you on your way and make you feel like it is all in your head when you are that unwell on such a regular basis! When I finally got a diagnosis, it was like I'd smashed through a wall and I could yell, I'm not crazy, see?!!
Doctors can't know everything. You have to keep at it and keep at it until you walk into a room with someone who will crack the mystery. It won't necessarily mean everything will be solved (I definitely have a long way still to go), but you can get there! Things can get better.
Glimpse into the waiting game
Written 16/01/2013
Time is just plodding along at the moment.
I am not working. I rarely leave the house. Apart from a couple of friends, my main points of human contact are with my parents (who are indeed awesome human contacts!). If I do find the motivation and energy to do something for an hour or two, like bake an easy cake, or have a cuppa with a friend at a cafe, then I am tired and need to rest for a big chunk of the day, and sometimes the next.
Every facet of my life seems to be on hold, waiting for the next move.
It is a vicious circle. Not enough energy to do much....don't do anything....lose motivation to try to do anything...don't do anything....rest, lose fitness, lose energy....don't do anything.
However, as I have said before, I have decided to be positive and look to the upside of things. So though I write these things while I feel tired, and lonely and bored, I am still holding out hope for a change soon, and I will make the clouds part in a few minutes and be happy for the day.
What are the upsides?.....
**I am not overweight! Luckily, I am not one of the people with thyroid issues who have weight gain problems. When I was thyrotoxic a month or so ago, I lost a few kilos too, so now I am classed as underweight according to the BMI index. This means, although taking into account my very strict diet due to food intolerances, I can have a daily dose of treats! I just ate hash browns and sausages for breaky, and at some point soon I will have a slice of the cake I made yesterday! Guilt free! (And I have low cholesterol and low blood pressure, so bring on the yummy stuff!).
**Massages! I have decided to try and have regular massages. My first one was on Monday and it was deep, and painful, but good!! I haven't decided how regularly I will do it, but it is something that will help, I feel.
** Although I get very bored, I should enjoy the fact that I am not rushing, and stressed and caught up in the fast pace of work and general day to day living. I know when you're at work, you can't think of anything better you'd rather do than relax on the couch with a book! It isn't the same after two months of it, and countless tv shows, audiobooks, magazines and hours of web surfing, but I know I should appreciate the down time (however enforced and undesired it is!!).
I have an appointment with a natural therapy practitioner today. I have been trying to decide whether to cancel but I think I will go. Although I dread repeating my story and getting nowhere, the possibility of someone else's views and thoughts developing a new idea that might help is too intriguing to avoid. Basically I am just hoping for some new physical therapy ideas, like particular massage types and acupuncture. I don't want to start any herbal medicines at the moment, because I am waiting to see the endocrinologist. I have tried the natural therapy route with two clinics before, so hopefully, now actually knowing about the Hashimoto's and food intolerances, this one will come up with something ground breaking! (Well, I'd be happy with just ground trembling!).
Time is just plodding along at the moment.
I am not working. I rarely leave the house. Apart from a couple of friends, my main points of human contact are with my parents (who are indeed awesome human contacts!). If I do find the motivation and energy to do something for an hour or two, like bake an easy cake, or have a cuppa with a friend at a cafe, then I am tired and need to rest for a big chunk of the day, and sometimes the next.
Every facet of my life seems to be on hold, waiting for the next move.
It is a vicious circle. Not enough energy to do much....don't do anything....lose motivation to try to do anything...don't do anything....rest, lose fitness, lose energy....don't do anything.
However, as I have said before, I have decided to be positive and look to the upside of things. So though I write these things while I feel tired, and lonely and bored, I am still holding out hope for a change soon, and I will make the clouds part in a few minutes and be happy for the day.
What are the upsides?.....
**I am not overweight! Luckily, I am not one of the people with thyroid issues who have weight gain problems. When I was thyrotoxic a month or so ago, I lost a few kilos too, so now I am classed as underweight according to the BMI index. This means, although taking into account my very strict diet due to food intolerances, I can have a daily dose of treats! I just ate hash browns and sausages for breaky, and at some point soon I will have a slice of the cake I made yesterday! Guilt free! (And I have low cholesterol and low blood pressure, so bring on the yummy stuff!).
**Massages! I have decided to try and have regular massages. My first one was on Monday and it was deep, and painful, but good!! I haven't decided how regularly I will do it, but it is something that will help, I feel.
** Although I get very bored, I should enjoy the fact that I am not rushing, and stressed and caught up in the fast pace of work and general day to day living. I know when you're at work, you can't think of anything better you'd rather do than relax on the couch with a book! It isn't the same after two months of it, and countless tv shows, audiobooks, magazines and hours of web surfing, but I know I should appreciate the down time (however enforced and undesired it is!!).
I have an appointment with a natural therapy practitioner today. I have been trying to decide whether to cancel but I think I will go. Although I dread repeating my story and getting nowhere, the possibility of someone else's views and thoughts developing a new idea that might help is too intriguing to avoid. Basically I am just hoping for some new physical therapy ideas, like particular massage types and acupuncture. I don't want to start any herbal medicines at the moment, because I am waiting to see the endocrinologist. I have tried the natural therapy route with two clinics before, so hopefully, now actually knowing about the Hashimoto's and food intolerances, this one will come up with something ground breaking! (Well, I'd be happy with just ground trembling!).
Glimpse into perservering
Written 15/1/2013
Yesterday was finally massage day! Unfortunately I couldn't book in while I was really sore a week or so ago, but I still am aching so every bit helps. It was definitely not a feel good, relaxation massage! It was a try and not jump off the bed massage! However it seems to have got into some tight muscles and today I feel achey but looser. Tomorrow I am going back and talking to the clinic's practitioner for a more holistic approach and see if any new suggestions can be made. Yes, unfortunately this means recounting my whole story again, but hopefully something good comes of it.
I finally got a referral to see an endocrinologist on Friday. I had to go back to the GP for the third time in the week just to get it, but I eventually got there, after really having to push to get it (very frustrating and confusing that you have to ask several times and finally be very blunt and forceful to get a specialist referral!). I was starting to feel like my GP, although very clever and is the only one to have picked up the Hashi's after however many years, is starting to mismanage me, and I feel like we aren't getting anywhere. So much I have read from medical practitioners and from patients says how GPs, and even specialists so often don't handle Hashimoto's patients well and that you really need to keep pushing to get the treatment you need. Because my hormone levels have started to normalise this week, my GP is just keeping me on the Carbimazole and not actually treating the problem! He actually said that we wouldn't look at the antibodies anymore! If my hormone levels are ok at the moment and I still feel bad, then something else needs to be done! So many people seem to have this same problem; doctors look at the numbers on the blood reports, and don't take into account the actual symptoms. Fingers crossed that the specialist is good and gets me on to the right path!
Yesterday was finally massage day! Unfortunately I couldn't book in while I was really sore a week or so ago, but I still am aching so every bit helps. It was definitely not a feel good, relaxation massage! It was a try and not jump off the bed massage! However it seems to have got into some tight muscles and today I feel achey but looser. Tomorrow I am going back and talking to the clinic's practitioner for a more holistic approach and see if any new suggestions can be made. Yes, unfortunately this means recounting my whole story again, but hopefully something good comes of it.
I finally got a referral to see an endocrinologist on Friday. I had to go back to the GP for the third time in the week just to get it, but I eventually got there, after really having to push to get it (very frustrating and confusing that you have to ask several times and finally be very blunt and forceful to get a specialist referral!). I was starting to feel like my GP, although very clever and is the only one to have picked up the Hashi's after however many years, is starting to mismanage me, and I feel like we aren't getting anywhere. So much I have read from medical practitioners and from patients says how GPs, and even specialists so often don't handle Hashimoto's patients well and that you really need to keep pushing to get the treatment you need. Because my hormone levels have started to normalise this week, my GP is just keeping me on the Carbimazole and not actually treating the problem! He actually said that we wouldn't look at the antibodies anymore! If my hormone levels are ok at the moment and I still feel bad, then something else needs to be done! So many people seem to have this same problem; doctors look at the numbers on the blood reports, and don't take into account the actual symptoms. Fingers crossed that the specialist is good and gets me on to the right path!
Glimpse into hang in there
Written 9/1/2013
It was blood test day on Friday and then back to the doc on Monday. Things are still going very slowly. I have had to confirm more time off from work as my body is still aching, tired, weak, my gut is playing up and my brain is still dizzy, thick and cloudy.
It seems so crazy when you and your family think you have had a good day when you have been able to sit on the couch for a few hours and be on the computer, go for a 5 minute walk in the park, and chat at dinner time!! The past few days have been better than last week in that I am actually leaving my bed, but at 28 years old, I am craving the ability to do a gym class, or go to work, or go catch up with friends without stressing that I will land in a heap!!!! I think it is probably frustrating this week because there is no change in the plan with meds or anything...just keep plodding on.
However, my parents are amazing. They pull me through. My other family members keep me going from afar overseas. Friends tell me to keep going too. And I keep thinking this week, I don't have a life threatening illness. It is really frustrating at the moment, and maybe it will be for a while, but even though I can't do everything I want to do, there is hope one day that I will be able to, and I have so much love from people sent my way that I am planning to enjoy what I have, and not dwell on what I don't have.
I watched the movie 50/50 this week. It is about a young man with cancer, and I found it a really good thing for me to watch. Not only is it funny and well told/acted, it shows the frustrations of someone who is sick, how people around that person can help and how it is hard for those people too. Lots of laughs and motivation!
It was blood test day on Friday and then back to the doc on Monday. Things are still going very slowly. I have had to confirm more time off from work as my body is still aching, tired, weak, my gut is playing up and my brain is still dizzy, thick and cloudy.
It seems so crazy when you and your family think you have had a good day when you have been able to sit on the couch for a few hours and be on the computer, go for a 5 minute walk in the park, and chat at dinner time!! The past few days have been better than last week in that I am actually leaving my bed, but at 28 years old, I am craving the ability to do a gym class, or go to work, or go catch up with friends without stressing that I will land in a heap!!!! I think it is probably frustrating this week because there is no change in the plan with meds or anything...just keep plodding on.
However, my parents are amazing. They pull me through. My other family members keep me going from afar overseas. Friends tell me to keep going too. And I keep thinking this week, I don't have a life threatening illness. It is really frustrating at the moment, and maybe it will be for a while, but even though I can't do everything I want to do, there is hope one day that I will be able to, and I have so much love from people sent my way that I am planning to enjoy what I have, and not dwell on what I don't have.
I watched the movie 50/50 this week. It is about a young man with cancer, and I found it a really good thing for me to watch. Not only is it funny and well told/acted, it shows the frustrations of someone who is sick, how people around that person can help and how it is hard for those people too. Lots of laughs and motivation!
Wednesday, 9 January 2013
Glimpse into advice, love and support
I have received some great advice and support in reaction to setting up this blog. I thought I'd share some of the thoughts people have shared. I have only used comments people made public on facebook or this blog; I have not posted privately sent messages.
- I don't have the food intolerances but absolutely feel your pain with Hashimoto's. It took multiple times of months off work and getting to know how my body coped with it to get my head around it all. I hope writing your blog helps you as much as others x
- Seeing an endocrinologist who had a better understanding of the ideal blood levels (lower end of normal) was great. Apparently people can be walking around 10 times more out of range than me but I'd end up bed ridden not that far out...took my GP a while to accept it I think but now it's fine. My dose took a lot of tweaking and is a bit odd but I got there. Do your own reading and trust your instincts..even when you're sleeping 20 hours a day lol
- The first bout I was off for 3 months, then again for 2 so I had drained all my sick leave and ended up using some long service leave. Miserable!! I was always thankful I didn't have the weight gain or a hideous goitre lol. The fatigue is crazy and having to ask for so much help from others was really difficult when you are so used to being independent. (My son) was in early primary school at the time. It is a massive mental adjustment when you can't see the end it sight. I was forever grateful to those around me for their love and help - embrace what ever is offered!
- Great idea! I think it will be therapeutic for you and also great for the people around you to have a better understanding of what you are going through.
- Geez, that's full-on. when were you diagnosed, and are you happy with your endocrinologist?
- I have hashimotos! It was diagnosed in 2002 after over 12 months of massive weight gain and being told "you're a new mum, it is normal to be tired". At that stage I was needing over 14 hours sleep a day! If only they had just done a blood test earlier! It has taken forever to lose the weight and even after all these years, my levels are still all over the place. I'm currently on 200mcg oroxine per day. It is very frustrating! Good on you for setting up a blog!
- Check out your Super, you may qualify for income protection if you are running out of leave. QSuper pays 75% of your wage for up to two years.
- After reading your blog, I feel so greatful for my health & shouldn't take it for granted. I can't believe how you've been dealt a lousy card & hope that your levels stabilize asap & stay that way. Take care xx
- Geez sounds like it is absolutely knocking you for 6. You should definitely get onto an endo though ASAP... will be probably a 3mth wait to get in but it is their area of expertise. I have one or two names that are excellent. Even though there are great GP's out there, it might be a bit complex for them to totally understand but more likely they may not know the full spectrum of effects, treatments and interactions (e.g. with pituatary). Do it!!
- I basically went through 4 GP's, a neuro, an endo and then another neuro to get a diagnosis that made some sense and could be tested. Something totally different but you learn to challenge GP's, learn about the systems in the body and learn about how symptoms can lead you down a particular path... And sometimes you just need to be sitting in front of the right professional. Good luck, keep at it and keep positive!
- Although its early days, I would really encourage you to see an Endocrinologist...given you have other health issues, are so young and are pre-babies. After my second blow out I asked my GP for a referral even though i was afraid of offending her! I only had to see the Endo once but would have to have gone back if I had more babies. They also screened me for a whole range of auto immune diseases..once you have one you have a greater chance of others. Maybe you could just ask your GP what they think and when the timing seems right
- I feel very lucky as my Hashi's never ran my health off into a ditch. Hang in there! It can only improve right!! Xox
- This blog is a brilliant idea, you will have so much support and information from fellow sufferers , a very positive move . Well done you ....xxxx
- Reading your blog... You are an amazing and strong person and I hope the new year will be much much better for you xo
- Hey, great blog... though I'm so sorry to hear about the awful things you've been going through. I was diagnosed as a celiac about 10 years ago and food intolerances are no fun. I can't even imagine how difficult it must be dealing with everything. Stay strong and if you ever feel like a chat or whatever, shoot me a message x
- Sounds like a great idea to blog about and very inspirational for others like myself, who would have no idea about such a disease. Best wishes for good health, a great blog and for the treatment to work!
- Well written way of describing Hashimoto's ... I was diagnosed with Hashimoto's in 2006 and it was hell. Slowly killed my thyroid so now it doesn't do anything at all anymore but at least it's no longer a roller coaster. Hopefully now you know it's Hashimoto's they can control it for you so the roller coaster isn't as horrid! Take care!!
- Crossing fingers toes and endocrines and enzymes for you to get well in the new year xxxx
- Hope the new year brings improvements for you. Keep fighting the good fight. Happy New Year and goodnight x
- Hang in there...amazing things can happen as your body heals
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