This year so far has been a bit of a charging Rhino. I haven’t seemed to be able to catch my breath and there have been times where I’m not quite sure how I got away with not burning myself out. I’ve been busy but careful and I suppose that’s a huge difference from this time last year. I’ve got things done when I’ve needed to but always had one eye on my rest breaks and when to say no.
A quick glance at what has happened so far from December to now is quite dizzying, I’ve been published, I’ve maintained a sucessful online support group, I’ve got my Herbalism certificate, I’ve started my Psychology degree (and even handed in my first essay yesterday!), I did a talk on brain injury for the health trust, I’m in the process of taking part in another book and I’m doing a bit more gardening at the allotment. Along with all this I’m still attending all my appointments and I finally managed to cook a meal for myself and Mr Braingirl (I’ve done it a few times now). This was a huge deal as sequencing and initiation are real problems for me. I’ve also aged another year but we won’t talk about that. Phew! When I look at this list it seems busy and frantic but it’s always done in a measured, planned out, ‘slowly but surely’ way. It’s meant having to say no to some fun invites and also allow myself to have days where I sloth about in bed.
But the point of this post isn’t to say ‘look what I’ve done, now give me a badge’ it’s to round up the past few months so I can see that the times I’m bemoaning being tired and useless that I’m actually far from it.
I also want to talk about yet another facet of brain injury that I wasn’t told about and that is sensory issues. Now me being completely bull headed as usual didn’t really factor in sensory issues as a problem until about 2 years post injury when I finally started to take it seriously. Again, it was self researched and I found it to be a huge player in the fatigue lottery. At first sensory overwhelm or overload showed itself as an annoyance that the tv seemed too loud even though it was a normal volume for everyone else. Then things like plates being stacked in the kitchen or cutlery being rummaged in made my eardrums throb and there were even certain sounds that made me cry ( one time in a supermarket someone suddenly started drilling something and I nearly went through the roof). Also I was walking around everywhere even on overcast days squinting like a mole.
After a bit of questioning and reading I figured out my eyes and ears had been made super powered by the brain injury and whilst on the surface that may seem pretty cool it’s an overwhelming, scary, tiring and anxiety inducing experience. The increase in light and sound is fatiguing for the brain and hence why busy places are a real test of endurance, not only do I have to process the sensory information but I have to do it multiple times with all the conversations going on around me.
In the very early days of my injury it also affected my taste, I used to taste metal all the time and it would give me wave after wave of panic as I was convinced my brain was bleeding again and it was blood I could taste pouring down my throat. If I’d have known about the sensory changes I’d have been a little more laid back about it (I think). Luckily that’s righted itself now.
The past year and a half have been spent living in a very darkened and quiet bedroom, (the blackout blind is my friend) listening to gentle music, wearing sunglasses everywhere (even indoors like some sort of diva) sticking earplugs in at cafés and generally turning into a vampire.
Whilst on the whole I’ve not really considered how this is perceived by others because I don’t really care what people think, there have been a few times that I’ve been caught out by what people have said. Being TOLD by others I’m wearing sunglasses at a meal because I’ve not woken up yet is a bit annoying, being asked why I’ve always got earphones in is insensitive and feeling like I have to apologise for putting sunglasses on when I’m sat in a meeting indoors and the sun is MELTING MY EYEBALLS through the blinds is something I got tired of. So I wanted to find a solution and one day I had my eureka moment. Other people may say ‘well duh yeah Captain Obvious!’ but for me it was genius. I wanted to try photochromic glasses, you know the ones that change with the light. My eyesight is perfect despite the sensitivity so I wondered if they could be got non prescription. A visit to my optician later and I have my photochromic glasses!
They are much smaller and more discreet than my sunglasses, they adjust to the light conditions and are perfect for indoors, driving and pottering around even on seemingly overcast days where without glasses I’m still suffering. Fret not, the sunglasses are not forgotten, they’re still needed on sunny days, the ones where the actual sun comes out and shines but for everything inbetween these are perfect.
I’d love it if these became more common and were recommended as a solution by OT’s or doctors. They were quite an expense so for someone on benefits such as myself I got a bit of a sweat on paying for them, but they will be worn everyday and if they help me feel less tired, less anxious and more engaged with the world they’re priceless.