I have spent most of the past week procrastinating about what to write my blog post about this week. I keep having ideas ‘I can write about how everyone is the same, regardless of disability, ethnicity, religion, your particular difference’ or ‘disability difficulties and unspoken discrimination’ but I keep giving myself excuses as to why these ideas aren’t suitable, relevant or appropriate. Now rationally, I can reason with myself as to why they are suitable, relevant and appropriate, but it isn’t the rational part of my head that always wins (see my teenage obese years for reference). I do struggle on a daily basis to reconcile this conflict in my head over whether I’m worth something or do I allow myself to have that extra biscuit.
My apologies for the slightly somber beginning to my post, my head just felt like explaining itself for no reason *shrugs shoulders*. We’ve only recently met and here I am unloading a huge truck of backstory on you, how delightfully frank of me. No I’m hoping to bring a smile to your face whilst also touching on some more sensitive subjects (sounds painful).
I write this having spent the majority of my afternoon on the bedroom floor. Super awesome news, gravity is still working!
I was scared it had stopped too. No, thanks to a perfect combination of my ambitious parking skills in my wheelchair (I thought it would be okay), the heat and my weak legs I managed to perform a perfect slide to the floor with minimal points for penalties. If I was on strictly even Craig would have given me 9/10.
Fatigue is the bane of many people who have MS or other brain injuries lives. Please don’t think I’m saying everyone with a brain injury experiences fatigue in the same way, we are all unique little snow flakes after all (which also means we all have that in common). Talking from my point of view, fatigue can be more debilitating than any of my other problems.
Calling fatigue “fatigue” is entirely misleading, people often interpret my saying “I feel very fatigued” whilst I rest my head on the table at my local cafe to simply mean that I feel tired but I don’t. Well yes, I am feeling tired but it is so much more than that. Fatigue for me feels more like I’m physically exhausted (imagine you’ve just finished a marathon without proper training for it), I feel physically weak, I’m unable to think rationally and I can be more snappy and emotional. The annoying thing for me, apart from the floor bit and sometimes snapping slightly at my friends is the sheer unpredictability of it (winter is coming, just a bit faster than it appears to be taking in game of thrones) and the extent to which my fatigue affects me can vary massively. I must admit, the thoughts on how much my fatigue could impact on me in a working environment does knock my confidence a little.
Much like after your Lego model has been broken into little bits, I have to put it back together again, even if it does look a little bit wonky this time.