It’s OK not to be OK
Chronic pain. Those who have it, can’t wait to get rid of it. Those who don’t, often do not understand what is going on in people’s bodies filled with chronic pain 24/7. Not to reminiscence too much about the good old days – those where the pain was not a constant, unwanted house guest – but I cannot remember what living without pain was like. Waking up feeling jolly, not a single bout of pain stabbing my face, being able to keep my balance on my way to my bathroom, high energy levels… All this was abandoned long ago, and even after 8 hours of sleep, I just can’t remember what life felt like. Healthy people often take their fitness for granted; they don’t question their bodies underperforming for a…
The worst snoring secret is out!
So yes… I snore. Considering how much weight I gained after too many MS steroid treatments, one side effect was completely overlooked. I am now the owner of a good habit of sounding like Miss Piggy at night. Steroid treatments should lift energy levels, not snoring. But I do… Like Miss Piggy.
Writing, a quiet observation
There is something about words, something fluid, warm, recognisable and true. Just a short while ago I was again reminded of my love for anything written, and how it more than likely, came to be. Early on in life, I was already a dedicated library-lover. Living above one eased the path towards it, and it definitely turned me into a bibliophile. Countless hours and days were spent walking around in it, searching and nurturing books. When my Dutch language teacher put me on the spot when I was 14 years old, he made me admit blame for a silly grammatical mistake in front of the whole class, asking me if I had any dictionaries at home, and if so, why they weren’t on my desk when I wrote that particular essay. While…
Waiting
Neurology waiting room in hospital. People waiting, wondering, dreading, hoping. It is not fair. Nobody deserves to be here. Nobody is ever prepared to hear what the stranger in front of them has to say. A neurologist looks at your test results, gazing, thinking. Do they wonder how they will tell you that from this minute onwards, your life will be different, that you will have to change your lifestyle to suit your new, closest and most annoying illness, that your body had betrayed you? Neurological illnesses walk in and out, often their illness seems larger than what they perceive themselves to be. For the ones sitting, waiting by themselves, without someone accompanying them, time goes slow. For the ones waiting with their boyfriends, spouses, parents, time is gentler. They…
This is the Life, by Marie Kane
To people living with MS, this poem is for you… This Is the Life So what if gods, fates, genetic mysteries haven’t been kind? We all have our crosses and I don’t believe in the ecumenical notion that all crosses are equal so no cosmic deal with God would allow me to place someone else here. Hell, I don’t want to be here. Lying on the bedroom floor after falling, thirty minutes pass while I straighten my spastic legs, roll over on my stomach, hunch knees and carbon fiber leg brace under my chest, use my husband’s dresser to pull myself upright, praying it doesn’t topple. Sudden realization— practice acceptance—agree,
Time heals
People have referred to me as what they would call an old soul. Animals are my biggest love, I love campaigning against unfairness in society and I love the company of books over that of certain people. My mum always told me to be kind, caring and having empathy because not everyone has an easy life. She taught me well. Now, I rest my case about awarding myself such qualities though, as articulating who and what I believe to be, is for others to decide.
Time to recharge
MS is as MS does. It drains your energy levels, your thinking goes haywire over the silliest things and it well… it simply plays tricks on you. Only last week I had my right arm swing all over my bedside table, but not where it had to be. Thankfully I was alone, in my bed and away from people. Having court cases because of accidentally thumping people in the face on the street is not what I envisage my near future to be.
