Level-Up: Part 54

Since posting Part 53 of Level-Up I’ve also written a separate but related post that you may wish to read if you missed it. It’s about kindness, how not to reject it when it feels overwhelming and how other people’s compliments on my own illness journey shocked me, in the nicest way, into recognising how far I’ve come. If you’d like to read that I’ll link it here.

Physically, the past couple of weeks have been pretty tough. I’ve tried not to complain too much and I probably kept it to myself more than I should have, but sometimes making a big deal of it actually makes it a bigger deal than you want it to be, if that makes any sense at all. Sometimes you don’t want to pay it too much attention or give yourself time to feel sorry for yourself.

It could just be the gradual change in seasons and temperature, my vestibular system is sensitive to even the smallest changes, or it could just be one of those bad spells, but I’ve been feeling extra dizzy and as a result more nauseous than my usual baseline. The dizzier I am, the more pain I end up in. When your body’s constantly trying to move to react to that falling feeling, your muscles get tight, particularly around the neck, face and eyes. I’ve got quite weak jaw muscles too (I had surgery a few years ago) so it doesn’t take much to send them into spasm. The middle of last week was incredibly painful. It hurt enough to make me cry. Of course, all this extra-everything has been interrupting my sleep which, in turn, leaves you with less energy during the day, less strength to stay upright etc. So you end up getting on a bit of a hamster wheel of feeling dreadful and not being able to break the cycle.

By the middle of last week I was being reminded how physical illness can wear you down mentally. I didn’t get struck with another big bout of brain fog, thankfully. Although that can drift in and out for a few minutes every day to a certain point. But over a few days I could feel my mood dropping as I got more tired and couldn’t stop the pain in my neck. It can be hard to stay cheerful. What I was most proud of though, was that even when my spirit felt crushed, I knew it wasn’t going to last. I could so easily have let it keep pressing me down, but I knew from experience that it could only keep me down if I allowed it to. I don’t know if I fully knew that, maybe even six months ago. I put out a hopeful call to the universe for a nicer day, reminded myself that I was allowed to be unhappy about being unwell, then started looking for some positives. It didn’t make the physical stuff any easier, but it stopped me sinking further. I let myself have a day off work on Friday to enjoy Halloween. That helped in regaining some energy.

IMG_7159

The other thing I’ve been pleased about is that I haven’t skipped any classes from my university course yet. I’ve noticed that at least half the other students have missed at least one, for one reason or another, but I’ve made it through without having to duck out so far. During the first hour of the class two weeks ago I felt so incredibly dizzy that I was mentally flipping a coin to decide whether to leave early or not. It was bad enough that I could feel the colour draining out of my face and I needed to count myself through blocks of 10 minutes at a time. Thankfully, it eased off enough during the second hour for me to stay. I was so pleased. I love the topic and didn’t want to miss anything.

I also employed the same sort of stamina the following Saturday. It struck me that I hadn’t been on the train since going to Plymouth, which had been about a month. I’d made plans to take two one-stop train journeys on that Saturday, but I’d woken up feeling exhausted and thought I might have to scrap the idea entirely. After spending all morning flipping the same mental coin trying to decide what would be best, I got a taxi to the university, where I needed to go to collect my ID card. I slowly walked across the bridge, bought myself a drink, sat down for a short time to consider whether I could make it the four minutes home on the train and manage the walk from the station to my house, then decided to go for it. Here follows the most boring picture ever taken on a train.

train_saturday

Learning how to work with my body, make adjustments and accept them as achievements even when they’re not what I originally wanted to do is still a tricky concept to wrap my head around, but I’m getting better at it. The temptation to berate yourself for a change of plans is always there, even when it wasn’t something you could control. But to put it into perspective, on a day when I felt like I was more dragging myself around than walking, I still pushed myself to complete one train journey. That’s big.

Initially every Sunday and now every second Sunday (I know this is Monday) I record my health achievements and discoveries for that period 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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