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.

I have never been a big person, and though I have never had a super fit or athletic body, I always maintained a certain amount of fitness, and had always taken part in some form of regular sporting or physical activity before I got too sick to. Apart from a few months here and there in my early 20s when I gained a few extra kilos while backpacking and enjoying the glorious traditional foods of various counties, I always managed to balance my calorie input and output pretty well, and always enjoyed physical activities. So now that I can not go to the gym, or do strength exercises and can only do short walks, I find myself jealous of the runners going past, or the gym junkie posts on Facebook, and miss the feeling of working out.
I follow a lot of health, food and fitness blogs, Instagram accounts and facebook pages. They are always covered with pics of healthy, fit and toned people working out; looking and feeling great. When you follow accounts of people with chronic health issues, you see the same dark rings under the tired eyes, the dull skin, the untoned body that you see in the mirror. This all has it’s very useful place in our recovery because knowing we aren’t alone in our struggles is strengthening and reassuring. However, I find myself wishing I could see a combination of the two – but how?! 
One thing which I try to see as an advantage that has come from my dodgy body, is the fact that, due to severe food intolerances, my diet is always healthy and I don’t find weight gain an issue. I also lost a few kilos last year when I was really unwell, so I am at the lightest that I have been as an adult (though with no muscle mass to speak of!). I love eating healthily, and enjoy creating new recipes that change an old favourite into a healthy treat, which is suitable for my food intolerances. One thing that worries me is weight gain caused by medications which can not be controlled by diet or exercise. So far I have avoided this, and really hope it never is an issue!
I hate that this dodgy body of mine is not toned, and I can’t do the exercise that would make me toned. I am itching to make my body strong, and it seems so frustrating that I am lean enough to potentially have a good body, but can not work towards it! I also can’t get the other benefits from physical activity, like endorphins, a sense of  accomplishment and fun, bright, glowing skin, and social interaction.

It is so important to not decondition when unwell with a chronic illness. That is a heck of a lot easier said than done! Some research shows that CFS results in a smaller heart size, which causes worsening of a lot of the symptoms. The deconditioning of the body does not just result in soft arms or a jiggly middle, it can result in a small, weak heart and other important body parts. The stronger you can get these important organs, the better your health. Stronger leg muscles can assist with a better pumping mechanism in the legs, assisting with blood circulation in people with POTS; another motivation. But how?! It’s finding that tricky medium that is the difficult thing!

My mum got me a pedometer recently. I generally end the day with about 600-800 steps, and quite often don’t get passed 1000 steps. I have found that if I break the 1000 step barrier, I’m doing pretty well. It is a fairly average day, but it means I’ve managed to get out of bed a little and move around. If I get to 2000 steps, I’m having an active day for me. It means that I’ve managed to leave the house and do a little walking about. I know I can’t do this type of day more than 2-3 days a week. The only time so far that I broke past 3000 steps, was, ironically, when I was at the hospital for a cardiologist appointment and had to traipse over half the hospital to find the specialist rooms!! Needless to say, I can’t do that kind of day very often. Last Saturday, I managed to visit the shops to get new paper craft gear, and have a little lunch out with Mum, and I got my second best steps level…2500. However, I ended the day with fainting and vomiting, so maybe breaking past 2000 steps is not so good for my body at the moment! Having the pedometer has been good, because not only does it give me an idea of what an average day is, and when I might be pushing my limits, it also helps to motivate me to do a few extra steps if I’m lagging behind. My step count goal is way behind that of the recommended active, healthy person’s goal of 10,000 steps per day, but having my own goals gives me something to work towards, and gives me a sense of achievement, no matter how different it is from my past fitness goals.
My pedometer step count:

I also try to do some yoga when I can. I have a mat, and a program to watch so that I can do it at home, at my own speed. I don’t get to do it very often though, because I am too dizzy or tired, but I really do benefit from it when I can, because it stretches and loosens my tight, sore muscles and joints. I try to do hydrotherapy too, but am having the same problem with doing it regularly.

I am going to start tracking some of my attempts and experiences with physical activity and body image on my Instagram account (my Instagram name is: laughinthefaceofchronicillness) to try and provide a place where people with chronic illness can get ideas and motivation, and vent their fitness frustrations!
We need to take one day at a time, learn our limits, not expect too much of ourselves, and be thankful for what our body does allow us to do.

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

  1. How much of a positive imapct does yoga have on your well being Gem? I imagine the benefits would be significant though I'll admit, I'm no expert.

  2. It is really great Dean. I never thought I would enjoy yoga because I've always liked fast moving, high energy activities with music, but I went to some classes last year and loved it. Unfortunately the classes are too much for me now, but I am trying to do a bit with yoga apps like “All-In Yoga”. Once you've been taught how to appreciate the moves, it makes such a difference to your view on yoga. It is great for your wellbeing yes, you feel relaxed and refreshed afterwards, and helps with the aches and tightness!

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