Level-Up: Part 40

When I started writing this series I hoped it would achieve two things. Primarily I wanted it to be a timeline for myself that I could reflect on when I felt I wasn’t achieving anything. I always am, but it’s easy to forget when you’re living it every day. It really has been successful in that sense. I don’t read back as much as I should, but I have no doubt that writing a weekly record of my highs and lows has spurred me on to do more.

I also wanted it to be a way of helping my friends and family understand what I’m going through so that the confusion and occasional misunderstanding it brings about is less of a burden to them. One of the biggest problems with having an invisible chronic illness is that people assume you’re fine because you look fine. A lot of the time, all you really have the energy for is crawling up in a ball on the couch. Trying to get that across without just seeming like a lazy oaf is tricky. I guess you’d have to ask them if I’ve been successful in making chronic illness understandable, but many of them have told me they hadn’t realised how much impact it’s had on my everyday life until I broke it down.

The third result of this series was a nice surprise. So many people living with similar illnesses to mine have been in touch to thank me for finding the words to express what they feel too. I’m never entirely sure how unique my experience is and I’d never wish it upon anyone, but there’s a lot of comfort in someone saying ‘me too’. So if I’ve helped them feel less alone in the process of speaking for myself, that’s great.

Sometimes it’s hard to know how to explain to someone who hasn’t lived with illness how you’re feeling on days like I had yesterday. It’s such a raw, exhausted state of mind, it’s almost impossible to express. But having made a video this week on how one of my special professional skills is transferring feelings into words, I’ll do my best.

I’ve struggled physically this week. The past few weeks have been big, physically and emotionally, and I think they’d started taking their toll on my stamina stores. A lot of those big things were positive, but they’ve all been stuff I had to push for and push through. Just going through counselling alone can leave you a little winded, so add on top of that the things that I’ve achieved and an illness that makes me feel like I’m being shaken 24/7, I was running my body on a skeleton staff.

I went out during the start of the week but I really wasn’t feeling well. Come Wednesday, the only reason I went out is because I had a counselling session, which was quite the rollercoaster in itself. Thursday and Friday I stayed home and worked. I was just too wobbly and shaky to attempt walking anywhere. Yesterday morning a little cabin fever was setting in. It’s bizarre. There were whole years where I could walk and be in busy environments so little that all I could do was go to work and come home again. To preserve what little sanity I had left, I let it become normal. Nowadays, it only takes a couple of days before I’m desperate to get back out again. Which, as a friend commented yesterday, shows how I’ve probably got more normality in my life than I feel I do at times.

I kind of knew I wasn’t up to a walk yesterday, but I went for it anyway for the sake of getting some fresh air. It didn’t go well. I spent the entire walk stumbling over myself, stopping, reaching for walls and forgetting to breathe because I felt like I was falling so regularly. Even before reaching the shops I felt like I didn’t have enough stability to go on. I had to have a stern word with myself and stop myself from crying in the street. I knew if I let emotion steal the little puff I had left it was game over. I got everything I needed and slowly made my way home. At that point it really was game over.

I was hit with a crashing wave of exhaustion and failure so intense that I felt like giving up and giving in. It was such a terrible walk and felt like such an enormous step backward that I couldn’t even remember what I’d spent the past four and a half years fighting for. It didn’t feel worth it. I was completely defeated for the first time in quite a while. As I remarked on Twitter during yesterday afternoon, when you have a chronic illness, you spend an awful lot of time fighting, pushing and trying to make the best of bad situations. There’s no rest from illness. It never goes away. Some days are just better than others. You don’t mention it to people every day because you don’t want to get boring. I bore myself with it. Sometimes you lose sight of why you’re fighting, simply because you’re out of juice and can’t imagine where you’re going to find the next injection of moxie.

I spent the rest of the afternoon parked in an armchair watching Curb Your Enthusiasm and Oprah interviews, trying not to be freaked out by a sensation I thought I’d banished. The fact that it’s been so long since I’d felt like I was losing to illness is actually a very good thing. It means the expanses of time between those episodes are getting bigger. In all honesty, there were years when feeling like I would never get a handle on the illness and gain some control over it was pretty much my default setting. Knowing I should try not to let myself get freaked out by it was important too. Counselling and experience have taught me how crucial it is to be able to sit with the bad days (or weeks) without assuming they’re here to stay. But still, yesterday was scary. When you’ve been able to chase that level of negativity and failure away for a while and it suddenly appears to smack you in the face, the punch feels that much harder and takes longer to recover from.

Today I don’t feel entirely out of the woods. Partly because my body’s still tired and because the muggy weather’s making just sitting in this chair feel like I’m being violently spun, but also because it takes a while to build up the emotional strength to start fighting again. Knowing I had to write this post today is helping. Nobody wants to sit and read a thousands words of me whining about being a loser any more than I want to write it. So maybe this series has a fourth purpose. Knowing that once a week I’m accountable to myself and to you here means I don’t want to let either myself or the people reading this down. So I guess the fight’s back on if you’ll all help to prop me up while I can’t do it myself. And for the next time I feel defeated, I have new dinosaur pyjamas on the way. Dinosaurs make everything better. Rawr!


Every Sunday I record my health achievements and discoveries for the week here. To find out why I decided to start doing this, you can read an explanation in the first post of the series here.



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