Defined by myself
"As you can tell, I have lots that strengthens me and drives me forward. I also have (dis)abilities: severe bouts of pain and fatigue, which I bent into a positive writing tool for others to lean on. My limitations serve as other people’s motivation. Their motivation became my inspiration."
30 Things about My Invisible Illness You May Not Know
I was sent this list after National Invisible Illness Week ended and asked if I wanted to write about it either way, so here are my answers: 1. The illness I live with is: Multiple sclerosis, the house guest that ends up on your doorstep, invites himself in and never leaves again. 2. I was diagnosed with it in the year: I was diagnosed in 2005, three months before my 32nd birthday
Iconic
Symbolism is all around us, and you only need to lift your eyelashes once to be immediately inspired. Iconic. My left foot is indeed something of an iconic thing that is hell-bent on creating trouble. Past ruptures of Achilles tendons, flipping ankles, falling over my own feet… they have seen and done it all. However, when I was told I would have to start wearing ‘proper’ shoes and that I would have to add special insoles to stabilize my left foot, I had to rethink my existing shoe wardrobe yet again. Ballerina shoes, Converse All Stars, high heels, flip-flops and Uggs do not make good footwear, at least not when your feet have a mind of their own. Apparently, Clarks shoes would not be suitable anymore either, and since I…
MS: a social disconnect
Therein lies the disconnect: the way others want me to be, and me not being able to keep up. How many of us have pretended to be well enough to walk another 500 meters? How many say they are OK when they feel pain in their limbs, their eyes and in their soul? How many say they will be able to go to work when they were awake half the night because of pain? Unwillingly we are put in a non-self-imposed isolation; we are put there by our illness, and quite often by the outside world. Our mental functioning is now processed differently because of our illness.
MS fatigue… the invisible monster
MS fatigue… The most common, yet most difficult to detect a symptom in multiple sclerosis. Aside from feeling exhausted, having to explain people over and over how different it is to normal tiredness, you often get a stigma assigned of “yeah, yeah, you’re just being lazy” or “sure, now keep walking, it’s probably not that bad.” Not everyone will express their opinion out loud, but people will think about why you’re “just not making a bit more of an effort”. MS fatigue is more or less an invisible symptom and it’s hard to explain exactly what it feels like. Some people will stop talking, walking or you will notice changes in their behaviour. Unlike normal tiredness fit people feel after exercising or working 8h a day, MS fatigue is an…
What MS feels like in your mind
What multiple sclerosis feels like on a mental level? How does it affect your mind? These are questions many people wonder about: those with MS, wondering how others feel with the illness they share. Or people without MS, like your family, your friends, just curious how you are feeling. And then there are those that ask that question as well because they don’t believe a word of what you’re saying. These are questions I sometimes ask myself, because the symptoms come and go, change and get better or worse. Disappear altogether while new ones appear. So what goes on in your mind with the constant changes? Knowing what MS feels like if you have MS yourself, that makes you an expert patient… of yourself. I’ve met all three types of people;…