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. All MS symptoms have the potential of being embarrassing.
Embarrassed by your MS Symptoms
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 episodes exhibited different symptom on each occasion. At no point did I consider MS embarrassing. 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.
Perhaps, worst of all, is that multiple sclerosis is an invisible illness. You can look perfectly healthy on the outside, but know that your brain is fizzing on the inside.
Now that I have learned to cope with these symptoms a little better, I can see the funny side of constant embarrassment.
MS is not embarrassing but, some of the symptoms most certainly are. Incontinence, Dysarthria, Ataxia and Spasticity.
What is your Most Embarrassing MS Symptom
How often have you heard the cry: “I am not drunk I have MS”.
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
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.
As I learn to control the more embarrassing symptoms, the more trivial problems attain greater significance in your mind.
Do you wilt in the heat of Summer?
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. Spain is lovely; 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.
Despite finding the Spanish heat intolerable, I love the Spanish lifestyle. It is important for me, to try and avoid the tourist spots. This is difficult when all package trips take you to the centre of these popular destinations.
I fully intend to persist in holidaying in Spain. In the assumption that my MS wracked body will eventually learn to tolerate the oppressive heat.
Being able to travel with my electric wheelchair quite easily, has brought this objective a little closer. My airline of choice is Jet2 because they offer exceptional disabled assistance.
Live for the Moment
In my early days with multiple sclerosis, I thought my life had changed immeasurably for the worse. But this isn’t true. At least, it doesn’t need to be true. We are humans, humans thrive because they adapt. We can adapt to live with multiple sclerosis.
Multiple Sclerosis is going to set limitations on what you can do, how you do it and when you can do it. Adapt to take account of these limitations and your life can still be full of joy and happiness.
Your lifestyle will change. But, that change may not need to be for the worse. I have a very full life and I continue to battle with multiple sclerosis every day.
- Learning to speak Spanish
- Managing my Blog(s)
- Learning to make Video Clips
- Discovering new travel opportunities on my doorstep
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.