Sometimes it starts the night before..before you've even shut your eyes in preparation for 6-8 hours of sleep - you're anxious about how you're going to wake up. With a dull aching, all consuming headache? Sore from head to toe? Unable to string a legible sentence together for a few hours because your asphasia has reared it's ugly head again? Your joints seized up like someone three times your age? Or simply looking like an extra from the Walking Dead. Stroke fatigue is a real and deadly thing - no, I'm not going to savage you if you're in my presence but I will look and act like a zombie when suffering from it. It's not infectious or contagious, it's just something to be aware of. The shit thing about stroke fatigue is, it's not improved by rest. It's just part of life for survivors. Sometimes, it feels as if you're literally stuck in mud field (like a rain-drenched Splendour or Glastonbury) but there's no Interpol, Radiohead or Rufus on stage - it's just you and your exhaustion. You're trying to get outta bed to start the day, whether it be work or play ahead, but motivation and physical stamina just evades you. Every single thing is an effort - even typing...like right now - my left hand feels like a dead weight, because that's the side that is used for everything. No equality here. While the right-side basks in the Melbourne sun, ol' lefty does all the work.
Dressing is an effort with fatigue - sometimes I wonder "Seriously, it would be so much easier if I could walk around like Miley - no effort involved". Walking is an effort with stroke fatigue - the tram should come to my front door, I shouldn't have to walk to it..and dare I say, even shopping is an effort - have you seen the size of the Chadstone? Hooray for online shopping. Now that's just the day-to-day activities that you can't avoid - work is on a whole different level. Six years of uni and nothing prepared me for the toll working (when it's not your own business) was going to have on my health. Whoa. With uni, as most of you know, if you get a decent timetable - you have the option of staying up late and 'studying', then sleeping in until 9 or 10am. You're pretty much in control of the pace you want to set the day at. Working? You're on someone else's clock. Last weekend my body had a tantrum - I awoke on Saturday morning and couldn't move for a couple of hours - literally. Had to stay in bed until my breathing and my back, neck and shoulders would let me move. Lucky I had Kat Moss keeping me company, and my beautiful friend Emily doing a grocery run for me. A home call doctor had to come out and hand over painkillers with a stern look on his face, "Your body is NOT normal! Stop treating it as if it's normal!!". Thanks doc. That saying - I'm lucky that I CAN work. Two great jobs - so that time, effort and mountains of work at uni did pay off (as much as I complained while doing it). It's ironic, I started 10 years ago, stuck in hospital in Brisbane after a brain injury that led to a stroke - and nowafter all these years I'm working for the Stroke Foundation in Melbourne. Funny where life takes you.
A wise young lady once said on this blog "adjust to your limitations" (thanks Meg). Regardless of your situation, that's something we should all learn to do. It's not a bad thing - it is what it is. FOMO (fear of missing out) plays a massive part in everyone's lives..thanks in part to Insta and FB. When you're having 'one of those days' - log off and read a book.