Level-Up: Part 16

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.

I’m not entirely sure what ‘average’ means anymore, but this was kind of an average week. I sat for longer than usual getting my hair cut short, managed a couple of good walks, and I also made one particularly poor choice in the name of getting things done that had me stumbling over myself the entire time. At the very least I managed to laugh about it afterward. I’m still not completely ruling out the suggestion that I hire some huskies and let them pull me along on roller skates. There’s a particularly cute husky puppy just a couple of streets away that its kind owners may wish to donate to my cause. One can dream.

Simulation only.

Simulation only.

To be a little more serious for a moment, I’ve been talking with a few people in the same boat on Twitter about how boring it can be to live with chronic illness. You can keep yourself busy with other activities but it’s dull sitting home while everyone else carries on with their lives. It’s boring to have to plan the minutiae of everything you do down to how many benches there might be to sit down on while you’re out, or how many hours you might be able to manage without getting some fresh air to steady yourself.  It’s the most unbelievably tedious thing to have to constantly monitor your progress under a microscope. I really don’t want to, but unfortunately I have to think about these things. At least for the time being.

When I went through counselling I learnt how to let go of my old life. I stopped trying to chase my pre-illness self because she doesn’t exist anymore. The past few weeks I’ve talked here about staying in the moment more, which I’m doing better at but it’s still a challenge. I’m trying to find out who I am again now, living with illness but not being defined by it. It’s difficult.  I’m trying to build a new normal. That’s really hard to do when everything you might normally anchor yourself to is constantly shifting, metaphorically and (for me) literally. Anchors don’t stay still in soft sand and every day is completely different to the last. It’s not routine I’m craving, but some stillness and contentment.

I’m hoping that at some point, with daily effort, everything will start falling into place and I won’t have to make note of everything I do anymore. I can’t quite imagine that time at the moment because each day is so unpredictable. But just like a science experiment, once all the variables have been investigated I’m hoping that as I figure out who this new and improved person is, there will be more normality and more enjoyment. If you think it’s monotonous hearing about this journey, I promise you it’s even less exciting trying to hack through the brambles to find the alternative path.

So I suppose this is just a callout to my friends, family and some of the new connections I’ve made lately. I know I’m rubbish company sometimes. I get it. Nobody spends more time in my company than I do and I know how uninteresting it is that everything leads back to “I’ll have to consider whether I’ll actually manage that.” If I say something spiteful, I don’t mean it. It’s just frustration. If I seem too clingy, it’s because I’m trying to give you everything I have so it’s not a one-way street. If I appear aloof, it’s because I’m trying hard to look after myself with dignity. I’m sorry that I can rarely answer “How are you doing?” with “Great!”. I really want to. It’s a lot to ask, I know, but I’m asking that you stick with me a while longer through this scary period of discovery. It’s a slow process, but I’m definitely trying my best. I know it’s stressful, but if you feel able to ride this out with me now, I promise to always repay you with love, caring, comfort and friendship.

I’m not sure what my new normal is going to look like yet, but I believe it’s got be out there. The most important thing to admit is that I know I can’t do it alone. It’s the hardest thing in the world to say when you’re proud and want to be able to look after yourself; when you want to appear strong and unbreakable. But I need you. Every single one of you. Asking for your support is my achievement this week, because it’s as scary as any physical barrier I’ve faced and overcome. Nobody wants to be a burden and even typing the request goes against my instincts, but it’s no less true.

Thank you for everything you’ve felt able to give me so far. It means more than you’ll ever understand.





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