Friday, 24 March 2017

What does it feel like for me at the moment?

(Originally posted: 25 January 2017)

My Current MS Symptoms

NB. every single person with MS will experience a different set of symptoms - no two MS-ers are the same!

(**) Try picking-up a wet cake of soap whilst wearing a wet plastic oven-mitt - you get the idea. That's about the best way to describe how my MS is affecting me in my hands.

It's not a loss of muscle strength, grip, or motor skills. It's this strange pins'n'needles/tingling/numbness makes it a weird feeling trying to... pick-up a dropped pen off the floor... pick-up soap in the shower... putting a key in a lock... typing... pointing and double-clicking a mouse... doing up shirt buttons... writing... sewing (hand and machine... tho I haven't tried, yet!)... wiping my butt (lol)... I have to concentrate when using a sharp knife, like when chopping veggies etc, just ordinary day-to-day things like that. Just general clumsiness (more than normal, that is). I have the sensation of hot and cold (thankfully), but the effects make things feel kinda "slippery" or "spongy" to my touch (it's weird to try to explain it).
  • Pins and needles
  • Numbness
  • Tingling
  • Buzzing
  • Vibrating
  • Throbbing
  • Slippery
  • Spongy
Vary rarely, I also experience slight hand tremors... but I've known of those for years.

Playing guitar is a challenge, let's admit it. But I can do it, albeit pretty clumsily. It's hard to describe, but it's like playing by rote... my brain tells my left-fingers how to finger a chord/play a series of notes, but the fingers don't always land exactly where they're supposed to... from years of playing, my fingers kind-of automatically know where they should go! That's the 'playing by rote' bit, I think.

A few weeks ago, when things started to 'come a whole lot better' again, I remember smiling happily during a band rehearsal (yes, I am playing jazz with Pengopuss again - thank you, guys!), as I told the others that "My fingers hurt! That means I can feel them!" It was a huge improvement to how it was a few weeks earlier!

(**) My MS is also slightly affecting my left foot (about 1 step in 10, my left foot doesn't 'rise' as well as it should)... sometimes, I seem to "roll" as I walk! It's called "foot drop" ("Foot Drop" is characterized by a stepped walking gait. While walking, you may drag your toes on the ground, or or bend your knee to lift your foot higher than usual, to avoid the dragging. Other walking gaits such as a wide outward leg swing may also indicate foot drop.)

(**) My sense of balance is a little bit out as well... if I stand still, I will sway very slightly (more than normal, that is!) It's just another of my MS symptoms that I've become more aware of, as has my neurological team too. Now, when I'm standing to play guitar, I have a chair handy, just-in-case...

(**) The dizzies / the spins are different again! As is the occasional "brain fog".

(**) Sometimes, I feel extremely fatigued... the sort of mental and physical tiredness/weariness/exhaustion that a good sleep doesn't always help.

(**) NOTE: My symptoms will randomly come-and-go over my lifetime. It's called "Relapse and Remission".

When I was in hospital for five days (back in early December), I was on high-level steroids (to reduce the auto-immune symptoms), including a "lumbar puncture" (no fun, I assure you!). My symptoms at that time were: My whole right arm, from elbow to hand, was quite numb and useless. It affected me all the up to my elbow (on my right arm), my left hand/fingertips, across my torso-front (chest), the inside of both knees, and the tips of my toes. It even affected the way I walked - the inner-knee numbness made me roll like an old sailor a bit, when I walked - that made me laff!

Thank goodness that now (c. 6 weeks later) I'm only experiencing pins and needles in both my hands. Everything else cleared away, after the steroid treatment.
So now, even typing can be a challenge! Typos are common - like right now, using my laptop (I don't have a smartphone or handheld device) - thank goodness for spellcheckers (which find most of my "dizzy-fingers" typos!)

I am adapting to it reasonably well.

It's all very frustrating, but I'm not depressed or unsettled by it all, to be honest. That surprises me, but I'm fully aware that there are people with this condition who have it a LOT worse off than I ever will!

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My MS Journey

On 23 January 2017, Mal Kiely was diagnosed as having "mild MS" (Multiple Sclerosis, a disease of the nervous system)

This page is an index of my attempts to
blog-diarize my journey with MS

Who Am I? What is MS, and how does it affect me? What does it mean? I don't know what I should say to you, Mal Typos
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Please excuse my occasional typos!

Please excuse my occasional accidental typos... I have mild MS (which affects my hands/fingers), and it's a challenge typing properly, sometimes. Thanks.

I type using my laptop (I don't have a smart phone or handheld device) - thank goodness for spellcheckers (which find most of my "dizzy-fingers" typos!)

Sometimes, it makes it awkward to point-and-click my mouse accurately, too - sometimes, I miss!

Typos certainly make for some hilarious reading at times!

"It's quite alright... I can read typonese quite flatulently!"

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