Level-Up: Part 55

I’m back! What do you mean you didn’t even notice I was gone?! You know last time I said that moving to posting Level-Up fortnightly was really working for me? As the weeks went on I found it wasn’t. Two weeks is a surprisingly long time and I was starting to feel really disconnected from it. I kept forgetting things I wanted to say, but then when I came to write, I didn’t know what to say. I realised that what I’d really wanted was just a short break from it. As valuable and rewarding that first year of blogging my illness had been, it was also pretty tiring. Even when I had wonderful news to share, it was always emotional. So I’ve taken a few weeks away and I’m now ready to begin again. I’m going back to weekly posting but moving from Sunday to Monday. That way, Sundays can stay a day for relaxation but I can still have weekly updates. I want the series to continue to be honest about chronic illness, but I may also take a few more breaks when needed. I’m going to try to apply what I learn from each week to a wider setting, too. That first year was absolutely about helping myself learn to live with my own disability, but so much of what I took from it can be applied to other life situations, so I’ll do my best to cast my net a little further with this second year. With that, let’s move on to Part 55.

A couple of weeks ago I had a really bad day. Physically I felt on my last legs. I was so dizzy and so exhausted. Just when I was trying to summon some strength to have a good day, a thick envelope arrived from the DWP. Just seven months after my Personal Independence Payment appeal had been approved, it was time to start the application process all over again. It seemed like I’d only just finished my initial application, which I’d only received after appealing, and now I had to start proving that I’m a disabled person all over again. I understand why it has to be done, and after making a few calls to them I found that it shouldn’t be as arduous a task this time. They were actually making a 12-month head start on my current November 2015 end date to ensure that I don’t get cut off because they’re too slow in getting the update through. But there’s something about having to continue proving your illness when you feel so unwell that breaks your heart a little. They also only gave me three weeks to resubmit my paperwork.

I cried a bit. No, a lot. I didn’t want to have to deal with it again. I didn’t want to have to face being ill at all. I wanted it just to go away. But that’s never a useful way to think. You can’t wish it away. If I could, I would have been well again after five weeks, not wishing almost five years on. I tried to talk myself into a more positive frame of mind and focus on the good stuff. I wrote a long, ranty blog post. I wrote all about how I’d forgotten to mention I’d been collecting Coffee No1 loyalty stamps for a year and had managed to fill 8 cards; making 80 short, slow, but important walks.

Coffee No1 Card

By the time I got to the end and read it back I knew I couldn’t post it. It was an honest indication of all the emotions I was feeling that day, but it wasn’t interesting or helpful. It didn’t even feel good to be writing it all down at the time. It did, however, give me an idea for a new physical challenge.

Before I developed my vestibular disorder I used to cram as much as possible into my lunch-hour. I’d dash out of my office and into the city centre. If I had nowhere specific to be I’d run into Marks & Spencer to buy sushi, then I’d pop down the road to get a Starbucks. I’d drink the coffee on my way back to work, then eat the sushi at my desk. If I was really speedy I managed to do that in under an hour. I didn’t do it every day, but when I did, it made me happy. After I became ill I couldn’t even walk across the street to use the terrible coffee machine in one of the university cafeterias. Even if I could have got in there, just standing in a queue and carrying it back would have been impossible. I used to quietly scream with joy when someone announced they were going to the good coffee shop around the corner. It sounds dumb to say that I cried over coffee, but I suppose it wasn’t really about the coffee. It was about the fact that I was losing everything. All the things I’d taken for granted were slipping away. If I couldn’t even go and get a cup of coffee when I wanted one, what was left of me?

On that bad day recently, I ran all this through my head. I thought about how I used to sit at my old desk and stare out the window, desperate to run…anywhere. But I couldn’t even walk anywhere. The fact that in the year I’d been trying to live around my disability I’d built up the ability to carry out those walks seemed insane in comparison. Yes, I’d only been able to do it because I’d made some major changes to my everyday and working life, but I had done it. I wondered if I’d be able to do the walk from my old office, into town to M&S and Starbucks, then back to the office again. It seemed like a big task and probably beyond me without some help. But if I was going to do it, I needed to do it alone. I kept waiting for a good physical day, but they were pretty hard to come by over the past few weeks, so it never seemed like a good idea.

Yesterday, I decided I needed to do something, even if I modified the challenge. Instead of starting at the office I got a taxi to the museum, about two-thirds the way down the long street into the city centre. It cut out the bulk of the walking. And as an aside, it made me smile that as I got out the taxi, Katy Perry’s Roar was booming from the nearby Winter Wonderland. I kind of needed some celestial encouragement at that moment. With a few stops to sit down along the way, I slowly made my way down the remainder of Park Place. I went into Marks & Spencer and bought some sushi. I then made my way toward Starbucks. I ogled the Italian food stall on Queen Street before finally getting into Starbucks and sitting down with my drink. I was feeling a bit shaky at this point, so the wait there was needed. When I felt ready to move off again I picked up a couple of bits on my way back past the Italian food stall and headed back toward the museum steps to call another cab home.

challenge_feet

What used to take me 30 minutes took two hours, but I didn’t let that dampen the satisfaction of what I’d done. I hadn’t completed the whole, original trip. I certainly hadn’t done it in under an hour, but on a day where I knew I didn’t have the stamina for that, the modification felt okay. There may still be so much wrong, plenty of days where I don’t feel like fighting and the frustration of being faced with the things I can’t do pokes at me, but I no longer have to stare out the window unable to cross the street every single day. In that moment, I couldn’t picture what breaking through that wall would look like, but life has a way of leading you somewhere better even if you can’t quite believe it at the time.

THREE SIMPLE TIPS FOR DEALING WITH A BAD DAY

  1. Let it out and let yourself be sad. Denying you’re struggling can sometimes make it worse. It might not feel like it’s doing any good at the time, but venting, either to a friend or just writing it down, can stop it fizzing up like a shaken bottle of pop. Writing that blog post and speaking with sister-in-law helped me air out how bad I was feeling.
  2. Once you’re done with the bad part, try to think of something that’ll make you feel better. Something relaxing can help, but even better is to find something that’ll make you feel good about yourself again and give your ego a boost. It might have taken a while to find the right day, but I kept focussing on my little trip yesterday and I felt accomplished by the end of it. 
  3. Put your trust in the future. Blind faith is almost impossible. At a low moment, you can so easily convince yourself that what’s bad now will always be that way. I know how difficult it is to believe in things you can’t see yet, but I’ve seen proof that things I didn’t think would ever be possible again can happen. And if you think your hand might slip while you’re hanging on, let someone else hold it for a while. 

Initially every Sunday and now every Monday, I record my chronic illness achievements and discoveries 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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