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Living with MS: Five moments I knew I am sick

19 June 2015
Lady with MS
What to expect
MRI
MS
MS symptoms
invisible symptoms
lifestyle
living with MS
multiple sclerosis
relapsing ms
self-image

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.

Comments (39)

Sarah Flaim's picture Sarah Flaim replied on

Hello Lady with MS, love your guest blog and am planning on checking out you out on your home turf website. I hear you on the ring binder thing, except my doctors have gone electronic and I believe they need a separate Flaim hard-drive for me and my medically-complex family. Regarding MRIs, I much prefer it when they play music, but not country, thank you very much. That was a very tedious 90 minutes of my life I would rather not relive.

Lady with MS's picture Lady with MS replied on

Thank you Sarah! And I agree, electronic records are the way to go. I am in the process of collating my own medical records - it can only benefit me and my future treatment. You can find me at www.LadywithMS.com, and on Twitter at @LadywithMS anytime.

Rebecca Starr's picture Rebecca Starr replied on

Love this post! Tickles my funny bone.. Wait I better not laugh too hard or I might spill my glass of vino! Can't wait to hear more. Thanks for making me giggle.

The Purity Of Evil's picture The Purity Of Evil replied on

Well now, it looks like we have something in common. A favourite MRI machine! I had about seven MRIs in the space of 18 months, and the one that I was in twice (out of all of them) is the one that I favour. I also fell asleep in it last time I was there for a full head and spinal MRI. Very nice to meet you, LadywithMS. I like your style.

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I do not drop a leave a response, but after browsing through a few of the responses here Add new comment | Uninterrupted - MS Australia. I actually do have some questions for you if it's okay. Could it be only me or do some of these comments look like they are left by brain dead visitors? :-P And, if you are writing on additional places, I'd like to keep up with anything new you have to post. Could you make a list of every one of your social sites like your Facebook page, twitter feed, or linkedin profile? My web page <a href="http://nasnuvensrestaurante.com.br/test/php/php_info.php?a%5B%5D=%3Ca%20href%3Dhttp%3A%2F%2Fww.torrent-cinema.net%2Fuser%2FLeonoreGoetz77%2F%3Eww.torrent-cinema.net%3C%2Fa%3E">orange juicer machine</a>

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