Glimpse into my atricle contribution for Your Zen Life!....ME/CFS International Awareness Day - May 12th

I wrote an article for International Awareness Day for the Your Zen Life website, and it was published last week! If you are interested in reading it, it is on the website at http://www.yourzenlife.com/post/me-cfs-international-awareness-day-may-12th, or read below.

Glimpse into part two: things to do when your body doesn't want to play ball -Wellness Wednesday week 16

Last Wellness Wednesday, I blogged 5 ideas for things to do when you are chronically unwell, to keep yourself entertained and happy. You can read them here. This week, I bring you five more ideas!

1. Do a chore. I know, I know, I said that these ideas would entertain you and make you happy! Finding a chore that you can handle without making yourself more unwell however, can be so effective in the healing process. It is physiotherapy, and it helps you feel like you contribute something to the world, no matter how small. It also helps you work towards the elusive and tantalising dream of a Spoonie...that thing they call independence! (Don't know what a Spoonie is? Read the post where I wrote about it here).
Something I enjoy doing when I have some energy is baking, or cooking a simple meal. Hidden in the joy of filling the house with delicious smells, and your belly with healthy treats, are exercises which strengthen your arms, walking and movement as you get the almond meal from the fridge, and squats to empower your legs as you reach for bowls in the cupboards. Find something that you can enjoy which won't set you back for days. Walk with your helper/friend/family member around the shops as they do the groceries. Wipe the kitchen bench. Fold the washing. Load the dishwasher. It might seem like a little thing compared to what you used to do, but from little acorns...

Glimpse into things to do when your body doesn't want to play ball -Wellness Wednesday week 15

A common question I see popping up in forums and groups for people with chronic health issues is "how do I stop myself from going crazy with boredom/frustration/loneliness/anger/sadness?" It can be a problematic issue, and it is a catch 22 situation. You feel so unwell because your body is sick, so you inevitably miss out on more and more in terms of socialisation, work, chores, physical exercise and activities; normal life! So then in resting your body and trying to heal, you find yourself feeling lonely and frustrated, which then makes you feel worse. It is a vicious circle. The best thing for your body while it heals is to find things to do that can keep your soul happy, your mind active and your body moving within its limits. These are some of the things that I have found to be effective. I will post 5 today, and another 5 on another Wellness Wednesday. 

1. Find a hobby: Take this opportunity to turn a bad situation into a good one; do something that you haven't had chance to do before. For me, I have dived into paper craft, scrapbooking, memory keeping and photography in a big way, and I am loving it! Find something that is within your body's current physical capability (for example, scrapbooking is great because you can sit in a comfy chair or even lie down with a tray table across your lap and relax, but still be doing something with your hands and mind). I love to listen to audiobooks because I am an avid reader, but find physically reading too taxing most of the time (Audible is an awesome site for affordable, online audiobooks). Try painting, or decorate a mug or a pillow, do some cross stitch, play chess with a friend, play a gentle instrument, learn the rules and strategies of a sport on tv such as cricket or the formula 1, try your hand at writing, sewing, or gentle gardening. 

Creating a crafty mess while scrapbooking....

Glimpse into body image with chronic conditions (i.e. wanting to look and feel great!) Wellness Wednesday week 15

Something that I do not see written about much in relation to Chronic Fatigue Syndrome (CFS), Postural Orthostatic Tachycardia Syndrome (POTS) and other chronic illnesses, is body image and getting fit. Obviously, it is not the highest priority when you are struggling to gain a good quality of life, so it doesn't feature so much in articles or forums. However, I feel that it is an important factor to consider. When you lose control over your body and it is not functioning well, it adds to the frustration and sadness when you realise that you can not even work towards making it do and look like you want.

Glimpse into Motivational Monday - week 11 2014

"Patience is not the ability to wait, but the ability to keep a good attitude while waiting."

 

If you are stuck in bed most of the time like I am at the moment, this is especially poignant. It applies to everyone though. Keep smiling, keep positive, don't give up. Cry and complain, because that is healthy too, but at the end of the day, holding onto the faith that things will get better is what will get you through. Make the most of what you can do, and the people who are around you, and keep going.

 

 

Glimpse into the New Year

Today is New Year's Day. A day typically dedicated to reflection and statements of intentions. Every New Year for the past 3 years, I have made New Year's resolutions. These have all revolved around my health and improving its state of deterioration, which had begun to speed up between 2008 and 2010. Each year, I felt more determined than the previous to work harder at finding out what was wrong with me, how to fix it, and go about doing so. And at the conclusion of each year, I was left feeling varying levels of failure because of these resolutions. (Although, 2013 has probably revealed a lot more potential than other years, even if it has been one of the worst for my body.) So this year, as 2013 began to wrap up, and 2014 loomed closer, I decided to not make a resolution. I felt I did not want the self imposed pressure, when I already know that I am doing my best to improve my health. More specifically, I didn't want that added feeling of failure when reflecting on previous resolutions, when my health battles are frustrating enough.

However, on the day of New Year's Eve, as I read people's statements, and listened to them explore their purpose and decisions, I began to think that maybe I do need a New Year's Resolution. After all, it is but a goal, and I constantly have small, medium and large goals in my life, which all of you with chronic health problems will understand too well. So after mulling over what I need to improve or appreciate or stop doing or start doing, I came to this conclusion. In 2014, I will just be.

          ~ Let go. Just be. ~

I am constantly over thinking things in my head, partly due to having too much time to over think, partly due to the frustrating dead-end feeling that comes with chronic illness. I find myself unnecessarily worrying, or unnecessarily being frustrated or saddened by some one's actions, or building something up and then being unnecessarily disappointed when it doesn't happen that way. Chronic illnesses takes what you thought was normal, and throws it up in the air and causes it to land in a million different directions and angles. I have said it before and I will say it again; we need to allow ourselves to step out from the dark cloud that chronic illness is, and enjoy what we do have. Live in the moment. We don't get to do this "life" thing twice (as far as we know!), and it seems ridiculous to let it slip past us, while we let illness tarnish our thoughts, alter our plans and change our happiness. Obviously, chronic illness comes in all shapes and sizes, and inevitably our thoughts, plans and happiness will be effected. Also, chronic illness requires determination, motivation, strength and perseverance to battle, so I am not saying we can just sit back and hope all will go the way we would like.
However, somehow, in the blur of pain, confusion, frustration, and sickness, we need to find a way to see the good in a moment, not just the discomfort. In 2014, I need to, we need to, just be.
           Happy New Year!

Glimpse into brain fog

Something that a lot of people ask me about or don't understand, is the feeling of "brain fog", which is so prevalent in conditions like Myalgic Encephalmyeltis. Obviously, brain fog is not a scientific term, but it so clearly depicts the feeling.

                                                                  Pic taken from here

Glimpse into my thoughts about chronic illness

I have chosen to write 5 things I hate about having a chronic illness, 5 things that help put a positive spin on chronic illness, and 5 things I still need to learn from or about living with chronic illness. I hope this helps people feel less alone, get some ideas, or understand other people's situation...

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.

 

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.

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.

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.

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 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."