THE BLOG

Managing Chronic Illness: Why I Set Myself Weekly Challenges

10/07/2015 10:07 BST | Updated 09/07/2016 10:59 BST

Being chronically ill in your twenties (I have Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and Histamine Intolerance) is hard. Like, really hard. I don't mean to harp on about it and I don't want people to feel sorry for me, but that's just a fact. Just existing can be a struggle, especially when you've got symptoms that give you the body of an eighty year old with congestive heart failure and joints that pop out when they get bored.

Because of all that general suckiness, it's so easy to fall into deep depression, suffer from feelings of worthlessness, and harbour intense jealousy for the life you wish you could have. I tend to go through phases where I need to feel sorry for myself (which is entirely ok and normal and to feel for a bit). I try to not let myself wallow for too long, isolate myself or get into the spiral of 'this will never end'. I have a friend come over and talk at me, I go to see my mum and dad for hugs, I play a particularly vicious game of Mario Kart, I go out for a delicious meal or a beauty treatment. My mum knows that it's important for me not to be alone and will take me out in the wheelchair if I don't have the energy to do anything. And it does make a huge difference.

It's so important to try and keep myself 'brain happy' and one of my ways of doing that is to keep busy. In the past I've fallen into the trap of working non-stop, thinking that just because I was in bed I was resting. Unfortunately, part of the whole 'learning to listen to my body' thing has taught me that if I'm going to rest, it needs to be actual rest, and so doing things that make me feel better (work work work work succeed push yay) in the short term can often be detrimental to me over time.

But, I'm not the type of person that can sit around all day doing nothing. I hate resting. And I'm also not the type of person who can make myself do things if I don't really want to do them. So sometimes it can be a bit of a catch 22. Either do everything or do nothing.

The way I've recently managed to get around this (and to start also including self-care into my daily routine) is by setting myself small challenges every week. These can be as simple as committing to doing ten minutes of mindfulness every day or starting a short online course in a topic that really interests me. This week, for example, I'm trying to make sure I do the 10 minutes (I'm really bad at sticking to it for some reason), get some gentle form of exercise in, and I am doing an academic course on the science of the gut by some of the leading scientists in the field on Coursera.

I don't put pressure on myself, and if I'm not feeling up to doing anything, I won't force myself to. Sometimes, depending on how symptomatic I am, the challenge can be as small as walking around my room or having a cup of herbal tea every day. But spending maybe half an hour a day (more or less depending on how I'm feeling) doing something that makes me feel productive and not entirely useless plays a huge role in my general wellbeing and my ability to manage and cope with my health. It can be really difficult to feel a sense of accomplishment and to recognise that the things that may seem small and insignificant are actually major achievements when you feel so unwell.

While my sense of lack of satisfaction is still very much there, and I find it hard to be proud of myself for going out or 'doing' something, I'm trying to take things one step at a time and realise that I'm working my arse off, and that's worth celebrating. And setting myself small, achievable challenges is definitely one way of helping me manage that.

You can read my blog here, follow my day-to-day journey on Instagram.