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.

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.

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?

There can be several reasons why we can be so exhausted, yet fail to sleep.

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.

Glimpse into listening to the lessons

Having a body that is not working to its full ability is frustrating beyond description. To begin to explain the feelings that it creates, the words sadness, disappointment, anger, self pity, jealousy, self loathing, and disbelief spring to mind. However, it can also have a positive side. Sometimes, in my low moments, I think of the upbeat things I say about this faulty body of mine, and I roll my eyes at my pathetic optimism! But as hard as it is to see, there has to be something good to come from these situations.

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.

• 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.

• 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.

• 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.

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."

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.

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!