Being active online
It’s two days after travelling 230km west for MS Ireland’s National Meeting Day in Galway, Ireland. It was a fantastic day, and I learned a lot, but it was just as great being able to share information on how to be interactive when you have a mountain of free time when you’re stuck at home. “Panel Discussion: This session looked at practical ways people with MS keep active in employment (Grace O’Sullivan), through the internet (myself), physical activity (Anne-Marie McDaid, Olympic Gold Paralympic medalist) and through MS Ireland’s work and activities (Mark Mitchell). Trevis Gleason, chef, blogger and MS advocate facilitated this session. For the benefit of others living with multiple sclerosis, and to use the long list of how to be interactive I had written beforehand, I will add some of…
Perfectionism
Banjaxed, tired high and wrecked. That’s how yesterday unfolded. After being up till 3.30am writing, I managed to sleep only 3h. I was unable to sleep, and as a result, I was going over the things I still needed to do before Saturday’s National MS Day in Galway. One of the topics of the day will be a panel discussion on being ‘active and interactive’ when living with MS and as always, it seems to turn into a college-type project.
Sleep: a time-consuming commodity
Shoulders back, head held high. Striving to soldier on, wanting to do more. Body says ‘no’, mind perhaps too. This morning I ran into my leading enemy. Not the one I declared war to over some silly misunderstanding when I was 8, nor the one who swore she would never talk to me again when I was 15, but one much closer to my heart. Me. Sometimes people say you have to confront in order to conquer. But what if this is a person, namely, yourself? I’ve had many confrontations with myself, but I’ve never been a good listener. If/when given the choice, I’d rather kick up some more dirt than having to listen to the rules. Especially when it comes to having to rest. And sleep.
Unfair
Once again I am here. A small, busy waiting room in hospital. People waiting, wondering, dreading, hoping. How much longer will I need to be here? When will it be the last time I can walk in here with a neurological illness and when will I be able to walk out with that nagging, progressing disease eradicated from my central nervous system? It is not fair. Nobody deserves to be here. Nobody is ever prepared to hear what the stranger in front of them will have 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 as you once knew it, is now over? Unfair is the way it was thrown at me, at…
Beware of the thief!
In between trying to set up a new laptop today and resting enough before another batch of daily tasks comes my way, I came across an email about MS and the question what MS has stolen from us. In her blog post, Nicole Lemelle says “Multiple Sclerosis robs us of our outside roles and independence. Which most times amounts to our identities”. So where do I begin? Do I even want to answer this? Will it lead to feelings I thought half forgotten?
Dissecting words
“Billie… smile!” “Billie, this is a business company, not the beach!” “Oh Bee, you’re such a bad dancer!” “It must be great being on sick leave so much; it’s like being on a long holiday!” “Look at her, Monday morning and still drunk!” These sentences might just be background noise to some, but to a person with a neurological illness, those words can cut like tiny slithers of glass.
Hot town!
“There’s always the floor?” my mum asked. With a brain fried like a piece of KFC garbage, thinking intelligently seemed hard to do. “Of course there is always a floor, go figure!” But I was getting desperate, water streaming from me and no place to cool down. Aside from the floor, that is.