Level-Up: Part 14

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.

In Part 3 I noted how, with a little encouragement, I managed to walk home from a doctor’s appointment after getting a cab to the surgery. It was a big deal. On that day it was raining heavily, so not only does dense air pressure make me feel dizzier, but holding an umbrella up decreases my ability to balance myself. I naturally fall to the left, so I use my right side to adjust my body position when I walk. This week I had to go back there to complete a form. On Thursday it stopped raining and the sun came out for what felt like the first time in weeks. It was the perfect day for a long walk.

The walk from my house to the doctor’s surgery and back would be a quick jaunt for most people. For me it’s what my dad called “a fair old hike.” Doing it alone with just my walking stick was a daunting prospect, but I kept in mind that there was no rush, that I could stop as many times as I needed to, and that if I didn’t feel I could make it home I could always call a taxi.

It wasn’t easy, especially going downhill without much to hold on to. I just tried to pace myself. Once I’d made it half way and sat down to fill out the form, I wrote slowly so that I could have a decent break. Without that midway rest I probably wouldn’t have made it back.  On the way back I remembered that I could use some railway steps instead of going uphill. The hand rail on the steps made it easier to climb and didn’t add more than a few minutes to the journey. I made it home!

This achievement doesn’t sound like much, but it felt like a big one for me. Few people realise the amount of physical and mental control it takes for me to complete a task like that. Managing to carry out the walk was important enough, but to have done it without trying to rush and trusting myself to deal with whatever it threw at me was just as significant. The weather helped. I’m heavily influenced by temperature and air pressure and they were all very comfortable that day. My dizziness was within a range I could cope with too. Everything just came together in the right way at the right time, and to have done something by myself that I haven’t done in almost four years was exhilarating. On another day it might be impossible, such is the unpredictability of this illness. But on that day, I did it! Here’s a little Instagram video I made while I was walking, to help distract myself.

For the rest of the day I felt tired, but in a good way. The kind of tired you feel at the end of a great gym session. Postcoital, almost. There is something quite euphoric and therefore addictive about success. The better it feels the more you naturally want. And the problem with that is you sometimes end up crashing when you can’t repeat the same feeling. On Friday I was even more tired. I tried to ignore it and pretend I wasn’t feeling too dizzy (because ignorance is how all problems are solved!) but by mid-afternoon I was exhausted. I ended up in bed by 9:30pm and so tired I could feel my mood sinking. That fatigue was so intense it came like a wave.

There is sometimes something very lonely about chronic illness. You can have the most wonderful support in the world, and I do, but at the end of the day when you crawl into bed, only you know how your broken body feels. Nobody else has to live inside it. Occasionally you can’t help but want to peel it off and step into a new one; wish you didn’t get so grumpy when you’re exhausted, wish you didn’t get this knackered at all, wish you didn’t feel like a wet blanket on everyone’s fire, wish you could spirit it away. These thoughts, though, are dangerous. Reality never grants those wishes.

Yesterday morning I didn’t feel much better. Fighting gets tiring and the urge to give up when you’re feeling wiped out rises. Staying positive takes energy and I was scraping the barrel. It made me ask all kinds of questions. Would anyone care if I just gave in to this illness? Would I care? Does all the effort I’ve been putting in even show? Can people see it? Is anyone as proud of me as I hope they are? I had to ask myself what the point of all this was. On the other hand, I also knew I wanted to keep pushing on, keep being ambitious, not let anyone down and not let myself down. It’s strange how when your body feels tired it weakens your resolve. It’s frightening to know how easy it is to get back to such a hopeless place. But I made it out again. I always do. Failure is not an option.

I spoke with a few people who reminded me what I was fighting for. They told me that they did recognise my efforts to be better and happier. I acknowledged that I felt this way because I was so tired and, even though yesterday had been a backward step, it didn’t mean I was back where I started. In the grand scheme of recovery, I’m still winning overall. I started a discussion with other chronically ill people on Twitter and the theme definitely seemed to be that most people’s emotional defences crumbled with exhaustion. I wouldn’t wish it on anyone but it’s always comforting to know your experience is common. That makes you feel less alone inside your body.

On to a new week, because while there are days where I can get out in the sun and do things for myself, hope springs eternal. Success really is a drug and I want another hit.

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