Level-Up: Part 48

I wasn’t going to write this post today. I was going to leave it until tomorrow when I’m less tired. But not everything has to be crafted and seen through the eyes of hindsight all of the time.

Before my eyes were even open on Wednesday I knew it was going to be a bad day. I already felt that the bed was moving, but not in that really fun way. It was going to be an extra dizzy day. I wish there was a better word to describe it than ‘dizzy’. Dizziness is that spinny feeling that people associate with vertigo. And I do get that, but it often appears on top of the thing that never stops. What never takes a break, even for a second, is the feeling of movement. Like lots of hands on you moving you around. Again, not in the fun way. It’s that fluid, swimmy feeling you get in your body when you’re in deep water, except you’re not in water. You’re stood in your kitchen making tea or sat watching telly or attempting to focus on the words in a book or trying to walk to the shops. It’s that stumbly feeling you get in your legs when you’ve had that one pint too many. It’s the squeezed, woozy feeling you get in your head when your sinuses are compacted with gunk.

On a good day I can try to tune it out. It doesn’t stop but it’s at a level that I can at least distract myself from the feeling. After four and a half years without a break from it, it’s almost my normal now. On a not so good day it refuses to obey when I try to tune it out. I turn down its volume and it grabs the dial to switch itself back up again. For the most part, I have learnt to accept those days. They’re never pleasant, but I just do as much as I can with the stamina I’ve got and make the best of it. I used to give in straight away. If I woke up feeling like I did on Wednesday I’d assume the day was ruined and get very upset about that fact for the entire day. Counselling has taught me to fight that impulse and fight back.

So Wednesday was one of those days where doing anything felt like traipsing through a muddy bog, but I got through it. The problem came later. Having spent so much time trying to keep myself still I was exhausted, but I couldn’t sleep for the movement. I wasn’t up horribly late, but I woke up a lot during the night to find a better sleeping position. So Thursday felt much the same as Wednesday, except now I was even more tired. I still managed to concentrate on my work, but I could only do it by turning off the radio and YouTube and Spotify so that I could get some pretty words written. It’s at this point I used to get angry. So annoyed that I was losing time to this stupid, pointless thing. But I fought that off. It’s destructive. The anger steals even more time and energy.

Come Friday I was feeling more rested and the intense movement dropped back to a slightly more manageable level. I was still tired from those few days, but I at least felt more comfortable moving around, walking and sitting at my desk. When I woke up yesterday, I wanted to do something. It was Saturday and I had a few things in town that would be handy to get out the way, but I still had the weight of those more difficult days making me feel a little weary. I knew the train was out of the question. I knew I only had a short supply of energy and it’s not just the train journey I have to consider. It’s also walking to and from the station and some sitting around waiting for it too, assuming there’s a spare seat, of course. But there I was last week touting myself as some kind of positive energy guru, with my ‘just jump and see what happens’ mantra. Maybe I shouldn’t write it off completely.

I ditched the train and ordered a cab to the city centre. I had three goals: to go to WHSmith to buy my favourite American magazine, to pop into ZARA to see if the bag I was looking at online had a long enough strap for my liking, and to go into M&S to grab a few skincare bits I’ve run out of. Technically I could order those last things online, but I’m still enjoying the novelty of being able to hold things in my hands on the day I’ve payed for them. It’s funny the things you miss when you can’t walk around a shop for a few years. Thankfully, all three of these shops are only a few steps from each other, so there wouldn’t be too much walking involved.

The magazine was easy. It was right by the door and I was able to grab it, pay and leave without too much bother. ZARA, maybe three shops down, wasn’t too busy. There was a lot of space to move around, but I was beginning to struggle already. The lifts in there had made me feel very unsteady on my feet and I forfeited heading for the third floor in favour of paying for my new bag (the strap was long enough) and sitting on one of the benches out in the street for a while. I hadn’t even been there that long.

After about 10 minutes or so I looked up at M&S, which was right next to me, and thought, “How bad could it be?” It was fine at first, the lights a touch too bright and too many people oblivious to anyone around them, but just Marks & Spencer being what it always is. After maybe 15 minutes I started the feel like someone had pulled my plug out and it was taking everything I had left to stay upright and make my way to where I needed to be via yet another lift. Upstairs it was warmer, I couldn’t find any baskets and I kept dropping my stuff. Nobody helped. It’s at this stage I’d have given up in the past. Just let it take over. But I didn’t. I sat with it, paid for my stuff and got out of there.

I eventually found my way to Starbucks (of course), got a drink and a cake and just sat. By now my body was starting to pack in. All the energy I’d funnelled into making myself walk was depleting and all those times I’d felt like I was falling had left my arms and legs shaking. It’s not an anxiety kind of shake. That’s different. This is my body saying, “Nope. Can’t do any more. Too tired. Stop now.” It’s like a form of shock. I made it around the corner to the next non-pedestrianised street and called a taxi home. I didn’t really move much for the rest of the day or the evening.

photo (33)

As the clock crept closer to midnight I was still shaking. My shoulders in particular just wouldn’t stop. All day I’d been surprisingly cool about it all. It’s a nice feeling when something that used to be so distressing can now just be ‘something that happens to me’. But by now I was so tired and knew I wouldn’t be able to sleep feeling like my body was still moving so violently and it did upset me. I felt silly and a bit disappointed that it was making me cry so much, because I’d been so proud about handling myself so well for most of the day. But I just wanted it to stop so I could sleep. Thank you to the friend who answered my call for company and helped to distract me from it. I know it was late and I know you were tired, but I really appreciated the chat and the textual hug.

It was some time between 2am and 3am that I eventually dropped off, so I’m still sleepy and a touch weepy today. But the shaking is easing off now. It’s mainly just in my hands and my neck/head. A quiet day today should bring the dizziness, for want of a better word for it, back to something a little more normal by tomorrow. Then I’ll be on to another week.

This hasn’t been the most interesting story to read, I’m sure. Well done if you made it to the end. But I think it’s alright sometimes to record this illness for what it’s really like, without all the rubbish stuff blurred away. If only for myself, to remind me of all the bad days I quietly talk myself through. Because there aren’t many people who properly realise how big a jump that is from where I used to be.

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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