Living with MS: Five moments I knew I am sick
Living with MS is not pleasant. But one gets used to it. It becomes a little mundane, and quite frankly, I’m bored with it.
But a few moments have cut through the boredom and stunned me. Some I found funny, others not so much. Surprisingly, all have occurred when I have been relatively well (in other words, when I could see the lighter side of life).
- A highly respected neurologist advised me to sit in the sun and drink a glass of red wine. This was in response to my plaintive queries of ‘what can I do?’, the subtext being that for as long as there is no cause and no cure, I may as well enjoy life while I can (whilst getting my Vitamin D). Thanks, medical establishment.
- I was informed that I will have to take my own Gilenya to hospital. Gilenya is expensive, and if I turn up in emergency with a broken leg or any other random issue, I will be obliged to bring my own (effectively treating myself for MS in hospital).
- I realised my hospital medical file for one year requires a ring binder (not a manilla folder). There are also reams of pre-printed patient barcodes, presumably in preparation for the hundreds of forms and requests and sample vials I will generate. The hospital is going to require an entire shelf for me one of these days.
- I find myself googling Medic Alert badges, pill cases and walking canes. I do this constantly. Why are they all so unattractive? If I had a choice, Hermes would design my Medic Alert badge, Mulberry the pill cases, and Marvel a cane. That’s right, Marvel. I want something that looks like it came straight out of Tony Stark’s workshop.
- I realised I have a preferred MRI machine. Yes people, I like the one on the right on the upper floor, not the ones on the lower floor. Think of how many MRIs I had to have before I could make that observation.
Believe me, I am not going to forget these moments. These types of experiences belong to the very sick.
If I didn’t laugh I’d probably cry, but then I might spill my wine.
Originally published at www.ladywithms.com on 26 February 2015.