Level-Up: Part 53
First of all, I have to say thank you to everyone who was so kind and supportive after I posted my video to mark one year of this blog series. When I hit the publish button, my hand was genuinely shaking a little. I just didn’t know how it would be received. I thought it might be too long, too boring, too saccharine or a combination of all three. But it got shared a lot and the feedback was all good. Invisible illness is, understandably, a difficult concept to understand when it’s not happening to you. So to have people who suffer with similar illnesses tell me that I’d got it right and it had helped them articulate their feelings felt pretty amazing. Certainly worth the (almost) tears.
The second thing to note is that making this series fortnightly seems to have been the right decision. It’s nice to have that longer break in between posts, to not feel like I’m putting myself constantly under a microscope. But I’m glad to still have this here to record some of the good and bad things this past couple of weeks has presented. I’ll break the two main factors into sections to make them easier to discuss.
Two and a half weeks ago I started a university class about comedy and how it fits into our culture. I love comedy and love learning, so it was the first one that jumped out at me when I looked through the list. I was a little apprehensive about signing up. The class runs late in the evening and by the time I’ve cooked the tea I’m pretty much ready to put my pyjamas on and collapse in front of the TV or my XBox. In fact, I often end up cooking in my PJs. When you have a chronic illness that impacts upon your energy levels, you get a bit precious about what you commit your time to. Particularly when that’s a regular commitment, such as this class. But I also felt that to not do it at all simply because I might have to skip one or two due to illness would be letting illness control me, so I made the jump and signed up anyway.
The university has a robust disability support unit and on my application I was able to state that I might need some special assistance and made suggestions as to how the class might be made more manageable for me. I asked if I could have an adjustable, office-style chair to help me be more comfortable during those two hours. As I have a feeling of movement in my body all the time, a chair that moves a little helps me to slightly fool my brain into thinking the movement is deliberate. In a static chair it feels all the more obvious that I shouldn’t feel like I’m moving, which ends up making me feel dizzier. Before I could even say hello on walking into the room the chair was presented to me, which put me at ease straight away. It was already waiting for me when I arrived this week too. So that’s my first tip, if you’re worried about being physically uncomfortable, check out if there are facilities available to make things easier. They’re not always simple to find but they do exist.
Concentrating on media theory and history for two hours is tricky. It’s not like watching a film where you can drift away for a few minutes and come back to it or even pause for breather. You have to focus on what’s being said so you don’t miss anything. I soon realised that as a lot of the students in the class were from overseas and in some cases quite young, I seemed to be one of the older, more informed people in the room. Particularly when it came to the cultural references in the comedy clips we were watching. So that gave me an opportunity to talk more and answer questions. This helped me stay engaged and not drift away. If anything, I had to stop myself from being a Lisa Simpson and putting my hand up for everything. But it felt great to be doing something I love and actually be getting university credits for it. Ripping things apart to see how and why they work is what I do in my head involuntarily anyway. This just gives me a chance to do it more formally and not feel held back. So that’s my second tip: don’t let illness or disability keep you away from things you’ll enjoy because you may have to dip out from time-to-time. The enjoyment you get from the times you’re able to participate will outweigh them entirely.
That first week, not just because of the class but in general, was busy and pretty tiring. By last weekend I was already feeling like I was worn out and getting a cold, and it didn’t get any better as the week went on. Actually, a terrible bout of brain fog started setting in and it’s only now just starting to clear out a bit. It was a lot worse than I let on, because I hoped that if I ignored it, it might just go away. It didn’t. I’ve described before how brain fog feels, so I’ll try not to repeat myself. It can hit anyone who’s fallen into a period of fatigue hard. New parents get it a lot. In terms of having a vestibular disorder and for me it’s usually when my brain is exhausted and can’t process properly. With balance disorders your brain is having to think consciously about keeping your body upright and stable. When energy is scant, that means just being able to type a text message clearly becomes a challenge. This week the weather was extremely heavy and damp, so as well as this cloud of tiredness I also felt like my head was being squeezed by the air pressure. So on top of the exhaustion was extra dizziness and nausea.
Brain fog is truly horrible. For me it means I can’t concentrate, can’t read properly and like I said, I find it hard to type, speak or articulate things clearly. You make ditsy mistakes. When you fire off an email or a message and get no reply you go back and read it again to make sure it actually made sense. Then you wonder if you made some error of judgement or have said something inappropriate. You feel utterly stupid and like you must be just awful company. That, in turn, impacts upon your self-esteem. That’s frustrating because since finishing my last batch of counselling, my self-esteem has improved a lot. You know logically that you’re not an idiot, but it’s hard to believe it when you can’t even construct a sentence in a coherent way. It’s a big occupational hazard for a writer. It took me two days to write something I would normally have been able to complete in an afternoon. I still don’t know if it was any good or not. Don’t get me wrong, my default setting is ‘massive dork’. If you’re trying to be cool you’re not cool, so I just be my dorky self and cross my fingers that people actually like it. But trying to function in the mist of brain fog can make you feel like you’re failing at everything and it’s scary when it takes its time about leaving again. On the day of my college class I didn’t work. I tried to, but nothing was happening, so I stayed in pyjama bottoms, made myself presentable in the evening and pooled all the concentrating I had left into absorbing those two hours.
Thankfully, today the fog is just starting to clear. I’m crazy-dizzy and nauseous, but at least speaking and writing don’t feel quite so much like walking through mud and chewing toffee. Big apologies and thanks to everyone who put up with any inconvenience or irritation I was to them this last week and especially to those who helped me out when I was being silly. It’s highly appreciated and never forgotten. My only advice coming out of this episode of brain fog is to try and remember that it will pass and being upset about your (temporary) forgetfulness and idiocy actually makes you feel worse. That’s very easy to say when you’re on the other side of it though.
See you in two weeks with hopefully a slightly less fuzzy head to report.
Initially every Sunday and now every second 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.