Living with MS: Five moments I knew I am sick

I’m bored with MS

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).

My five ‘I have MS’ moments

  1. 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.
  2. 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).
  3. 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.
  4. 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 work shop.
  5. 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.

 

11 comments

  1. Yes I find the living with it is so contradicting to things I was told before having it (like your red wine/sun experience.) it used to be that I was to try to combat my anxiety without much help from drugs like Xanax because they are addictive. My new advice goes along the lines of…you were just diagnosed, take the Xanax if you need it, feel good, we’ll deal with it if you get addicted. So counterintuitive to me, yet I see the point now is to have a high quality of life, so you gotta do what you gotta do. And, as soon as it’s sunny and warm here, I’ll be out there with you, soaking it up!

    Liked by 1 person

    1. If you do design that attractive cane, please sign me up to do a testing – I don’t get out often, but I will go out – JUST to test a pretty cane. And you have reminded me that I really do need a new MRI. my dr is one of the cool ones where as long as I don’t have a new symptom, she’s cool – but as many new symptoms as I don’t have, I’m moving much differently than I did two years ago. I hate that you MUST take a pregnancy test – as much as I tell them look, I’m not trying to drink water to take your pee test, cause Ill never make it home. I might as well speak a foreign language. They wont accept a waiver that I sign. UGH, I’d forgotten this. I understand why I avoid the dr so much.

      Liked by 1 person

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