Balancing life and a chronic illness
Reality. It’s what’s for breakfast. After some feeble attempts trying to write a few paragraphs the past few weeks, it was back to the drawing board each time. Not good enough. Already done this. Needs more research. Too tired. Not fit enough. You know moments like these, you sit down, determination almost physically squeezing ink out of your pen. Cup of coffee at the ready, you start and a few minutes later you have to hold on, waiting for energy to kick your bum to open up your half-closed eyes. Reality. Seamus Heaney once said “writing is a snapshot of consciousness”. I was lucky being semi-conscious this week. I could hardly make sense of myself during those few moments I tried to put pen to paper.
How (not to) be sick!
That's me. I forget how to be sick. The fact that physically I am crumbling under a lot of neuropathic pain, can’t frown my forehead into cute wrinkles, have no feeling on the top of my scalp, have constant bees in my ears of tinnitus, stabbing facial pain and intense fatigue, is something I refuse to show anyone carrying a medical degree. It’s a survival instinct of sorts.
I’m only human
“I’m only human.” It’s a phrase we all use sometimes to explain unwanted behaviours and/or consequences. Friedrich Nietzsche would say, ‘Human, all too human’, while I wonder why we simply do the things we do without some foresight, afterthought, or a memory spark that could have shown us how to avoid running into trouble. My failures or dodgy flaws? I can be as silly as a young pup, crashing into you or the furniture as I go, have a memory the size of an ant, or simply be as tired as old, worn wallpaper. More than once I ran into myself at lightning speed like atom particles do in the Large Hadron Collider in CERN, and as a result, ended up in hospital in need of IV steroid treatment to…
Blurred notes to self
"Being strong doesn’t however equate to always being chirpy and seeing and hearing continuous pastel birds fly around my head. Everyone’s allowed to get cross for whichever reason. If or when the reason is valid enough, we contain the situation, talk it through and move forward."
Lifetime membership
"Looking back at my physical self between the end of November 2009 and today, my MS took a fairly big step backwards twice. With hindsight being 20/20, retiring was the right thing to do. I cannot even begin to think where I’d be medically had I not retired, so if you want anything to work out in your life, then please let it be your early retirement."
Making Sense of MS
One of the many things people newly diagnosed with MS (PwMS) look for is information on what their illness will have in store for them. From thinking back to when I was discovering what MS might be like, I remember an overwhelming feeling of “where on earth do I even begin?” when I finally went online. I was numb and in denial but knew I had to find out more if I wanted to create a realistic idea of it. Approximately 5,000 people are newly diagnosed with MS each year in the UK, and for this reason, the MS Trust commissioned the “Making Sense of MS” resource to highlight the need for more information at the time of diagnosis.
Resilience
"Most of all, though, I had once again come to the realisation that I unfortunately need more sleep than the average, healthy person. At this stage so, I must start considering my continuous fights against tiredness and “forgetfulness” about needing a lot of sleep, as a pure character flaw. Perhaps I should also consider this forgetfulness a deliberate act of personal terrorism because who doesn’t like being busy? Who doesn’t like being able to get up in the morning and continue to work and stay awake for the next 12+ hours without falling asleep after 2 hours?"