, 14 tweets, 4 min read Read on Twitter
It's #MSAwarenessWeek , so I thought I'd do a mega thread on my invisible MS symptoms, from head to toe. Everyone with with #MultipleSclerosis is different; what goes on in my body is unique to me. So let's take a journey through my day to day world, because "I look SO well!"
We'll start with the head. SO much going on here. First off, brain fog and cognitive issues...feeling like you have a brain constantly trying to grasp for information but the cotton wool inside it won't let it. And words...losing words, forgetting words, replacing words...
NERVES! Particularly the trigeminal and occipital nerves...trigeminal neuralgia feels like a frazzled neuron party on your face, sending electric shocks hither and thither, like toothache in your whole head (tbh, I am able to control this well with medication)...
...whereas occipital neuralgia is more of a pickaxe in the base of the skull feel, neatly nestling at the back of the eye. Talking of eyes, we can't forget a reduced peripheral vision and a left eye slowly losing colour vision. So I have some excuse for terrible dress sense.
Still on the head, we might as well add in some fun symptoms, like phantom smells ("Can you smell fish and chips?") and occasional sparkles (phosphenes). Oh, nearly forgot ears! Tinnitus! Perpetual tiny high pitched drill in my ear! (this isn't fun)...NEXT!
(The neck is a very specific one, and is often seen as an initial sign of MS, L'Hermitte's sign is a fizzing, tingling sensation when you move your head forward. I had it for a couple of years before diagnosis. I quite liked it, and still do. Makes my toes tingle.)
I'll do general body stuff, as it's not insignificant...two straight up, bog standard MS joys here. Fatigue...no, we're not just "tired". This is when the air is made of treacle. When taking another step is impossible. Even speaking is too hard. Cannot move another muscle...
...plus my internal thermostat is broken. It's like the three bears all the sodding time. Can't get too hot. Can't get too cold. Going from cold to hot or hot to cold confuses my brain and I'll shiver when it's 25 degrees. I need ambience, but I never get it. To delicate stuff...
Bladder, bowel and digestive issues. Enough said. You can imagine stuff. Some of my work colleagues will read this.
Weakness in my left arm, also the symptom that got me diagnosed. Can't hold an umbrella, so very used to getting soaked in the rain or wearing unattractive hooded jackets. Moving on to my worst daily symptom, the big daddy, the beast, the bane of my life...
MY FEET ARE LOCKED IN SHOES MADE OF LAVA THAT ARE TWO SIZES TOO SMALL. Well, of course they're not, but you get the gist. The constant, relentless, squeezing heat of neuropathic pain in my feet. All the time. Day and night. 24/7. Along with all of the above.
So, thank you, I am glad I look well. But I, and many, many others with #MultipleSclerosis might not feel so well. I hope my #MSAwarenessWeek thread wasn't too arduous. Huge thanks to @mssocietyuk @shiftms @NMSSMI
Update: so glad this thread has gone down well. Reading it back, I realised I missed stuff (the "hug", dizziness...), and not to mention relapses on top of this daily grind! But thank you; onwards and upwards and maybe not in a straight line 😆
And today...well today is turning into one of the unbearable days. Where I would gladly have no feet if it meant no pain. Nothing helps. No drug comes close. And there isn't anything I can do about it but try to distract myself. Time to find one of the 3 cats to stroke!!
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