Are you Embarrassed about your MS Symptoms

Originally, I intended to write an objective article about Multiple Sclerosis symptoms but quickly realised that this was likely to be impossible. The vagaries of MS symptoms are such that they are likely to be unique to any one person at any one time.

I have had MS for over 20 years and I can confidently state that no two years have been the same. My original diagnosis was RRMS (Relapse / Remitting Multiple Sclerosis) and that position has not changed, officially, although I am certain that the disease has moved on to SPMS (Secondary Progressive Multiple Sclerosis).

In the early years I experienced only 2 or 3 relapses or flairs. These were spaced a few years apart, exhibiting different symptom on each occasion. At no point did I consider MS embarrassing. MS is largely thought of as an invisible disease and I became fed up with people telling how good I looked despite feeling awful inside. MS is not embarrassing, it is a dreadful, debilitating condition with no cure.

Now that my condition has worsened and I have learned to cope with it as best I can. the funny side can be seen. MS is not embarrassing but, some of the symptoms most certainly are. Incontinence, Dysarthria, Ataxia and Spasticity.

What is your Most Embarrassing MS Symptom

I am not drunk I have MS

Orange Juice
Alcohol-Free Orange Juice

A phrase I came across a few years back whilst browsing Twitter. I just did a search to see if I could locate the original blog I had been thinking of. The phrase is everywhere. People even have it printed on T-shirts!

With good reason…

  • Spasticity and Ataxia make you walk as if you are drunk
  • Dysarthria makes you slur and mumble as if you are drunk
  • Incontinence makes you wet yourself and smell like you’re drunk

Happy days…

In short, MS IS damned embarrassing.

The walking restrictions, when I can walk at all, can be overcome or disguised by using a walking stick or a wheelchair.

The dysarthria can be managed by speaking slowly and deliberately and thinking about what I plan to say in advance.

Incontinence cannot be so easily managed, but incontinence pants certainly “contain” it, so to speak. The only pants I can find for this purpose are lady pants. They don’t embarrass me but they certainly cause my wife some consternation when we are shopping for them.

I suppose that these symptoms have come to be perceived as embarrassing as I have learnt to control the more severe and chronic limitations and the embarrassing trivialities rise to attain greater significance.

What is more infuriating, are the limitations that MS puts on your lifestyle. Top of the list at the moment is: Uhthoff’s Symptom or the sensitivity to heat. I am writing this article on my laptop in a holiday apartment in Nerja, Spain. I love Spain; I love the people, I love the food but, I can’t stand the heat. At this precise moment it is late afternoon and a reasonably tolerable 24°. Last week it was in the 30’s and stifling. Note to self: In the future only book apartments with air-conditioning.

To draw this article to a conclusion I shall reiterate that MS is a dreadful disease but, you have to try and take a lighter view of things. There are many people with more to complain of than I so, be happy fellow MSers things could be a whole lot worse.

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