Life with MS… legs on fire!
MS anno 2022?
Ah…
Where to begin?
Paradoxical. Invasive. Singular. Unpredictable. Sarcastic. Unwelcome. And still equally neurodegenerative and as such, incurable.
In short, multiple sclerosis still sarcastically behaves as if it’s going through a teenager’s growing up stages. Awkward body movements, with their own kind of language, outbursts of hormones and fickle decision-making. It seems as if sticky tape is glued to their brain, just like ours is in the neuro department.
Result?
MS says “It’s okay if you don’t like me, not everyone has good taste.”
Lovely bit of satire, no?
But, I digress.
Quick wit, sarcasm and irony allows me to play life with MS from different angles. It also means that oftentimes my societal, personal and medical rhetoric needs further explanation, for which I apologise.
Not everyone understands the way people with MS gauge life, and the way we need to keep moving life’s goalposts. These days, twisting my tongue like a Medusa-like hairdo often results in being unable to speak the easiest words in any language without tripping over Medusa’s own snakeskin.
It won’t surprise you, so, that speech difficulties (also called dysarthria) caused by neurologically-induced brain lesions can have an effect on what falls out of your mouth because of an inability to control the muscles used in speech.
Hence why I prefer writing where sarcasm, irony and quick wittedness prevail. If you can’t find them between the lines, read again please.
Similarly, look out for potholes as you travel downwards through this article.
I digress again, however.
Remember all those posts about heat sensitivity called Uhthoff’s Syndrome, or Phenomenon, or blah blah blah this year?
Where I am nagging about warm weather, and being sensitive to it and more blahs?
Yeah, this post is not about that.
Sarcastic, and much in jest.
This is just ever so slightly about that.
So…
Awake at whatnot-AM this morning.
Sorry, “whatnot” really means “night”.
And last night.
And the night before.
Not a straightforward night spent in Morpheus’ arms since September 2004.
Not kidding here, not a single one.
So, you get the idea.
After numerous years of not crying because of physical pain, my tears had finally found a downward route towards my cheeks, and ultimately, found shelter on terra firma.
Quite a dry terra firma, in fact.
Global-warming-at-its-finest.
Crying because physical pain slowly came up like black oil from a well, and man it hurt. Add other emotional baggage related to life with a chronic illness, and you got yourself a nice little bit of internal mining to do.
Was I mad at myself for not allowing access to tears connected to nearly two decades of excruciating neuropathic pain? Or, surreptitiously happy I had managed to keep my eyes floating in a sea of salty residue that long while playing the clown in the outside world?
I just didn’t know, and frankly, I couldn’t care less. A teardrop more or less wouldn’t shake my world into either accepting or destroying neurodegeneration. Call me Waterloo so if you like. Neither the battle that took place when Napoleon Bonaparte lost face, nor the Eurovision ABBA song Waterloo could undo any hardship caused by the hands of MS.
I’ve been told my dancing to ABBA tunes is rather epic though.
My singing, not so much, so I gave up the dream of being a Eurovision song contest winner by age 6.
What set off the waterworks was what many ‘normal’ people call the best days of their life (warm temps), and what my MS refers to as “the neuropathic pain party”?
Because… Why?
Summer!
Sunshine!
Flip flops!
The beach!
Living in boiling pasta water!
Or the boiler, tout court.
Life with MS, but whatever.
Nevertheless, for those who are unaware what neuropathic pain is and what it feels like, it is caused by damage or injury to the nerves that transfer information between the brain and spinal cord from the skin, muscles and other parts of the body. The pain itself is usually described as burning, sharp, stabbing, shooting pain, including being as sudden as an electric shock. People with neuropathic pain are often very sensitive to touch or cold and can experience pain as a result of stimuli that would not normally be painful, such as clothes brushing the skin. Sometimes stimuli are nonsensical, like sitting on the couch watching television, and suddenly feeling stabbing pain in your ankle and foot.
Erm, hello… Eighteen years with MS and now stabbing pain in my right foot?
Where the hell did that come from?!
Side note: you have to agree with me, though, that this is not ‘summer’ anymore, but a freaking microwaved temperature-bingefest on steroids, and I am just not taking it anymore. Forget my posts about warm temperatures and Uhthoff’s Syndrome. This, right now, this August is a whole ‘nother level. 33,2° Celsius. Warmer than bloody Ibiza. I kid you not.
Ergo, ‘just not taking it anymore’ = expletive expletive, expletive exple…
And yeah, you get it. My going off on a tangent is warranted, perhaps even much-deserved.
Both my brain, spinal cord and every bit of flesh and bone surrounding it is ready for adoption by Kentucky Fried Chicken.
I am roasted. Oisín is roasted. My plants are. My windows are.
My solar panels are the only thing on my address that kinda love it.
As a consequence, the past three weeks have been neuropathic pain galore. Trigeminal galore. Vision issues galore. Everything-galore. Even my contact lenses are sweating.
Life with MS… from zoom to boom!
Forgive the repetitive content. My vocabulary and syntax is like the smouldering view of Tolkien’s Mordor: red, roasted, rotten. Try to have a phone call with me. I can barely say who, what, where, how and whatever. I almost cried this morning – or was it yesterday – because I could not remember Christopher Hitchens’s first name during a call with my Mum despite watching plenty of his debates a few days prior, and being a big fan of his debates on religion.
Nerve pain has some nerves showing its teeth.
It usually ends in some private, proverbial and unsavoury curses.
Irrational is just an understatement.
But you know… Cerebral hemispheres and a spinal cord battling it out with you.
“No biggie, get used to it,” says MS.
“Get the F out of here,” says a half-asleep me.
In my case, my left side feels as if there is a fire raging inside of it. Any kind of pressure applied to my skin by a duvet, clothes, etc. makes it worse. This means the dog and I have a battle of wills on who deserves the left side of the bed more: him with four long Whippet legs, which he sticks up in the air while sleeping, or me with one left arm and leg hanging out of the bed to cool down every 3 minutes.
Mostly, I win.
Imagine his shock when he found out I had a cooling mat and similar pillow. It was slapstick galore to the n’th degree!
So, yeah, life is just a waiting game as we all know the giant leaps neuroscience and research into multiple sclerosis have made over the past few decades. There is so much more yet to uncover, and for people with neurodegenerative illnesses it can’t happen soon enough.
The unpredictability and invisibility of the symptoms are so damaging to one’s morale if you let it. We need research that searches for both physical and mental answers on how to navigate life better. Eighteen years with MS and I am trying to figure out which I prefer: a few hours of TN, or a whole day feeling as if my left side is on fire and being crunched in a nutcracker (sorry, Mikhail Baryshnikov, you will always be my favourite cracker of ballet nuts).
Am I getting older, or is it just more of the same?
As always with multiple sclerosis, it’s not about waiting for tomorrow to be another day, it is about how well you manage to get through every hour of every day, as its unpredictability is an utter absurdity. It might sound hyperbolic, but I can assure you it is anything but as I have run out of fewer words trying to define what my symptoms are like. And as you age, you even wonder if it’s an MS-thing, or just your body getting older. In my case: all the above.
So as I lay in bed already, I must set aside which parameter takes precedence. It should be as ridiculously nonchalant as in the early days when relapses were less severe, but life with MS is just that. It doesn’t matter how old, medicated, doctored and frowned upon you are, it will never let you think the worst is over.
So, for now, have fun, water the garden, chase the dog or just chill, and do it with pride and the knowledge that whatever comes, you are ready for your own Waterloo. Listen to the experienced ones, your neurologists and, just as importantly, your gut. Had I not walked into Accidents & Emergency on a wet, cold February morning at 6.30AM because I knew that what was happening to me was not right, I might still be looking for answers as to why my body literally turned against me.
Because Napoleon truly was a dick, and you deserve better than a mere statue on a hill in some obscure, small country.
You deserve a full life.
Pronto.
If you like this post, read others about MS and hot temperatures:
Too warm for you? Heat sensitivity explained!
If it’s hot, I hate it! When MS temperature sensitivity torments you.
When life with MS is like the Clash’s ‘Should I stay or should I go?’
About Vikings, Vitamin D and multiple sclerosis!
That thing people call ‘summer’
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© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2022. Unauthorised use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.
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One Comment
dougtagg8699
I enjoy your blog. Some days like today I need your sense of twisted humor and honest observations. Thank you on this Saturday morning with coffee in hand from Lyndhurst, Ohio.