Level-Up: Part 61

I hadn’t realised it had been five months since I last wrote here. Five months! It wasn’t intentional. I never made a conscious decision to stop updating Level-Up and I certainly haven’t made some miraculous recovery where my vestibular disorder has simply dispersed. It still dictates how each day plays out, though I really try my hardest not to let it have the final say on absolutely everything.

Part of it was being tired of having a microscope on myself. Chronic illness makes you have to think about yourself every day in a way you don’t when it’s not there. I missed that carelessness and writing about it started to pull me out of it. I suppose in the same way it does when you’re enjoying a film and the phone keeps ringing or someone knocks at your door to tell you about a charity they want you to donate to, or the dog barks at you for a piece of your sandwich. Those things happen with chronic illness anyway. It irritatingly pokes at everything you do to keep reminding you that you feel wholly gross the large majority of the time. I hoped that paying those jabs less attention would make them easier. At least, that was my theory for a little while.

Having said all that, that first year of writing weekly without fail no matter how I was feeling wasn’t exactly some joyous walk in the park. I rarely went a week without crying as the words poured out. It was a gruelling task, but it served an important and rewarding purpose.

Coming back to this break, the less I talked about how I was feeling, I noticed something else happening. The quieter this ‘journey’ became, the less I felt part of the chronic illness community. The journey was still going on but if I didn’t want to talk about it, neither did the people who were dealing with the same things. We never force each other to talk. This is not even a tiny criticism of the Spoonie community. It was my doing. I was the one pulling back slightly. I missed it though. I missed feeling like even on the worst days there are people who knew exactly how I felt, either physically or emotionally.

I have actually written a couple of things on my main lifestyle and entertainment site, seibiant.com, while I was away from this space. One was about how to manage playing video games when you’ve got a vestibular disorder. I don’t think I even turned my XBox on to play anything for that first year (now up to five and a half years). Over time I developed some tricks and tips so that I didn’t have to give up one of the greatest loves of my life. What’s nice is that I know people who don’t have a vestibular disorder but just generally find that video games give them motion sickness have found it helpful. If you want to read that, it’s linked here.

The second piece I wrote was longer, more serious and significantly more important. It is without doubt the most difficult piece I’ve ever written. I wanted to review Matt Haig’s book, Reasons to Stay Alive. I’ve never read anything on depression that has touched me so much while remaining so simple and unpretentious. It should be required reading for all humans. But I couldn’t really explain what made that books so wonderful without telling my own story, so I did. I talked at great length about how chronic physical illness lead me to destructive depression. I had to talk about how disgraceful my behaviour became during the lowest time. I had to apologise for how selfish depression made me and how much I hurt people who deserved the exact opposite of how depression made me treat them. I also got to talk about what it was like coming out the other side and learning to like myself again. That was much nicer.

If you only read one thing that I’ve written, read that post. I’ll link it here. It’s the most important thing I’ve written to date. There’s an audio version available on that link, too.

As well as being an incredible catharsis – saying out loud that I’d had depression as the result of chronic physical illness but was fighting back – something bigger happened. Something unexpected. Matt Haig shared my post to his thousands of followers and it got an incredible response. It was nerve-wracking, but it was completely positive. A short while later that post was shared on the Vestibular Disorder Association’s Facebook page. Targeting it down to just people who were dealing with the exact same daily trials as me made the response even more spectacular. I said things that people had wanted to say but didn’t have the words. That was a powerful and an overwhelming experience.

All of a sudden it felt like the whole world wanted to talk to me about it, ask my advice, congratulate me on being brave and beating the odds to come out the other side of the tunnel, despite no physical change. I screenshotted every single comment on that Facebook post and replied to almost all of them. Part of me loved it. Part of me was giddy with the endorphins that come with helping other people improve their lives and feel less alone. Another part was entirely freaked out by the idea that I was some kind of advocate for living well with chronic illness. What a responsibility! I cried a lot that day because I didn’t know how to handle the joy. Just too many good feelings to absorb at once and a fear that you’re responsible for maintaining that if people are looking to you for reassurance. Once I’d gotten over the shock I offered it to a much bigger chronic illness organisation to see if they wanted to share it, but they declined. Maybe that was a blessing at the time. Being in the spotlight is tougher than it sounds. I didn’t ask anyone else to share it after that but if anyone wants to, please go ahead and Tweet me so I can thank you.

I got quieter. I stopped saying how I was feeling every day, even when I felt truly terrible. I wasn’t pretending I felt awesome, just didn’t mention I felt rubbish. The thing was that the less I said, the more it felt like I was burdening people when I did talk. It made me nervous to be honest again. I felt like I was being a pest. An inconvenience. Even now I apologise for complaining and moaning online when I talk about how dreadful I’m feeling. Even though I wouldn’t dream of asking anyone else to apologise. In fact, I encourage the people who I know hold things in too much to let more out! “Nobody needs to hear this,” I said. They do though. They need to hear it and I need to say it. Not just for me to release that pressure valve but for other people to know it’s okay to do it as well. I want to lead by example. It also makes it easier for people who aren’t in the same boat to understand exactly what you’re coping with. They don’t know if you don’t tell them. The more you convince yourself dealing with things quietly and alone is the answer, the more you end up doing that. Chronic illness is lonely and isolating enough as it is. There’s no reason to exacerbate that.

One thing I have become incredibly good at though is celebrating my achievements. I very freely now say publicly that I’m proud of myself. I am dealing with a horrible illness and yet I get up every day and try to kick it back. Few people fully appreciate what a challenge seemingly small tasks are. Even buying this ice cream with just one free hand was a frustrating ordeal. Nobody gets to see that. (It was worth it, by the way.)

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 I’ve also gotten really good at taking compliments. That comes from liking myself more. If you know me personally or previously followed this series you’ll know how much I’ve wrestled with that notion of pride. In my head I was forever comparing what I achieved with the person I was before I became ill, and so everything seemed small and stupid. I learnt how to compare anything I do now with the person who couldn’t walk across the street to buy coffee. Then it feels pretty unreal and wonderful. I won’t pretend I don’t ever compare my life to the people who can do more than me and don’t feel envious of those things. Who doesn’t have people they’re envious of? I’m human. But I bring myself back quickly. I feel sorry for myself briefly, then I kick my own arse and find something I can do.

I suppose this very long post is me saying, “Hi! Can I come back now?” I want to. I’ve been trying to put all this into a video for the past week but every time I’ve sat down to do it I’ve either not known what to say or I want to cry. I’m going to spare you that on this occasion, but I do definitely want to make some more videos. Please give me your ideas.

Let’s look at what I’ve been up to…

It’s been a hard summer. Heat definitely makes me feel much worse, but what’s been so bad about this summer is that it’s been humid and heavy more than scorching hot. I’d take a bright, sunny, boiling hot day over a cooler but more humid one any day. It’s made me feel like my head’s been stuck in a sweaty vice-like headlock all summer. I’ve felt so dizzy, so sick, so sore, so restricted, so tired, so worn down by it. The past few weeks have been a massive strain and I haven’t done myself any favours by keeping so quiet about it. Again, I just haven’t wanted people to get sick of me complaining about it. Yes, this is ridiculous.

I had loads of little goals and plans this summer. Just things I wanted to do for myself. Some of them I haven’t had the energy to get to yet, but they’re still on the list and will probably be easier when the weather becomes more autumnal anyway. I’ve managed some stuff though. I went to Free Comic Book Day and managed to spend the entire day comic shopping around the city by myself and with the help of several taxis. Check out those pizza socks!

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I’ve done some more city centre shopping. I went to a sing-along showing of The Sound of Music.

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I spent some time at the museum and had a look around, which included a train journey where I was forced to stand because nobody offered me a seat. I adore museums. Standing on a moving train when I can’t stay upright on solid ground, not so much.

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I’ve carried on collecting coffee stamps. I’m up to 130 walks now.

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I’ve tried a bit more solo supermarket shopping, God, I love supermarkets. I’ve used a few local trains by myself and most importantly, I did a few cinema trips on my own.

On my birthday in June I went with my family to see Jurassic World in the cinema. I’m pretty sure one of the previous posts talked about my first trip to the cinema in a really long time to see Guardians of the Galaxy. I explained then how poetic I feel about the cinema and how happy it makes me. Right down to the overly vibrant carpets and the popcorn smell that never leaves no matter where you walk. It’s one of my happiest places. I’ve also just realised that both films starred Chris Pratt. The impetus to go back to the cinema may be fuelled by the same beautiful person. But to be serious for a moment, difficult as it was to stay in my seat during the latter part of Jurassic World, I was reminded of what I’ve been missing. I decided I was going to go back again…by myself.

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I did it! I’m so proud. More than anyone could possibly understand because only I was in my body for every moment I needed to fall out of my chair but worked hard to stop that happening. I went and saw Ant-Man and felt deliriously happy that I’d seen it in the cinema on opening weekend. A few weeks later I went to see Fantastic Four, which was a rougher ride, both as a film and physically. Still, I managed it and was proud. I’m not prepared to miss out on things I love anymore. I’d rather brace myself for falling out of my chair than miss out.

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This has been a hard summer. I’ve felt worse these past few weeks than I have in ages. I’ll try to stop being embarrassed about saying that. People care. They don’t mind that I want to talk about it. If I talk about it, other people will too and then we’ll all just be looking out for each other. A few years ago I wouldn’t have handled these few weeks too well. I’d have fallen apart and been a gibbering, sobbing wreck the entire time. That hasn’t happened. My brain may still be annoyingly broken, but my mind isn’t. It feels great to say that.

I’ll keep trying to push the boundaries of what this illness suggests I should do. It’s not the boss of me. Whether that’s still eating my Sriracha daubed beef stri-fry when I’m feeling especially queasy, or getting on a train on a better day, or sitting through an action film that sends my head spinning. Even if it doesn’t go as well as I hoped, it’s the attempt that matters.

So… Hi! I think this means I’m back.

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