Wednesday, 20 September 2017

My MS Journey - A Life Living with MS

On 23 January 2017, Mal Kiely was diagnosed as having "mild MS" (Multiple Sclerosis, a disease of the nervous system)
NOTE: This is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons as to why I may act so "up-and-down" from time to time.

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
My MS Symptoms MS Bloggers MS Twitters Archives
My other health issues Blogging Without Obligation MS Information A Balancing Act

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#MSSucks #MSproblems #MSisBS
@MustStopMS @MS_Australia @shiftms @voicesofms
@msgetinvolved @KISSGOODBYEAUS @mssocietyuk

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Peas be with ewe 

Some Days Are Better Than Others

"Some Days Are Better Than Others"
U2, off their 1993 album "Zooropa"

Some days are dry, some days are leaky
Some days come clean, other days are sneaky.
Some days take less, but most days take more
Some slip through your fingers and on to the floor.
Some days you're quick, but most days you're speedy
Some days you use more force than is necessary.
Some days just drop in on us.
Some days are better than others.
Some days it all adds up
And what you've got is enough.
Some days are better than others.

Some days are slippy, other days are sloppy;
Some days you can't stand the sight of a puppy.
Your skin is white, but you think you're a brother.
Some days are better than others.
Some days you wake up with her complaining.
Some sunny days you wish it was raining.
Some days are sulky, some days have a grin;
And some days have bouncers and won't let you in.
Some days you hear a voice
Taking you to another place.
Some days are better than others.

Some days are honest, some days are not;
Some days you're thankful for what you've got.
Some days you wake up in the army
And some days it's the enemy.
Some days are work, most days you're lazy;
Some days you feel like a bit of a baby
Lookin' for Jesus and his mother.
Some days are better than others.
Some days you feel ahead;
You're making sense of what she said.
Some days are better than others.

Some days I hear a voice taking me to another place.
Some days are better then others.

Peas be with ewe 

What does my MS feel like for me?

Mal's Current MS Symptoms

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

NB. This post is not a "pity-party/woe-is-me" thing, as I'm simply sharing a very brief insight into some of the reasons as to why I may act so "up-and-down" from time to time. Yes, some days are better than others for me - that's very frustrating for me and others to deal with.

My main MS symptoms:
  • Hand Numbness
  • Foot Drop/Walking issues
  • Loss of Balance
  • Fatigue
  • Insomnia
  • Depression
  • Tinnitus
  • Nausea
My secondary symptoms:
  • Changeable mood
  • The dizzies
  • Brain Fog
  • Brain zaps
  • Slight hand tremors
  • Itchiness
▶◯▶ 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 not painful. 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, scrolling and double-clicking a mouse... doing up shirt buttons... writing... tying shoelaces... pegging washing to a clothesline... sewing (hand and machine... tho I haven't tried, yet!)... turning the pages of a book... getting a pill out of a bottle... picking up a dropped credit card/piece of paper off the floor... 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). Medically, it's known as "Paresthesia".
  • 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.

I also occasionally get unexpected spots of itchiness, for no apparent reason.

Playing guitar with MS is a challenge, let's admit it. STOP PRESS: I have retired from playing guitar - I simply can't physically do it any more! (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". I'll use a walking stick sometimes now, for a longer walk - "just in case..."

▶◯▶ 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!) No, I am not drunk. It's just another of my MS symptoms that I've become more aware of, as is my neurological team too. Now, when I'm standing to play guitar, I have a chair handy, just-in-case... it's the same reason why I'll use a walking stick, during a longer walk - "just in case."

▶◯▶ Sometimes, I feel extremely fatigued... the sort of mental and physical tiredness / weariness / exhaustion that doesn't necessarily go away after a good sleep. Not always sleeping well doesn't help, either. This often stops me from participating in life!

▶◯▶ Imagine being so depressed, that you cannot practically function... that's one of my MS symptoms. In association with my pre-existing Bi-Polar Depression, this often prevents me from participating in life, and in things that would normally bring me joy and pleasure. And - depression is not just "feeling sad"...

▶◯▶ The dizzies / the spins are different again... as are the occasional "brain fogs" and "brain zaps".

▶◯▶ My mood can change at the drop of a hat (more than normal, that is!), plus my bouts of depression seem a little more ramped-up and intense, from time to time. I can't always stop/prevent it, nor always pin-point a 'trigger'.

▶◯▶ Lately, I've realised my Tinnitus (ringing/buzzing in the ears) is much more noticeable some days, especially when I am very tired. This is not all due to loud music exposure, either.

▶◯▶ I've noticed a weird random overwhelming sense of nausea occasionally, almost (and sometimes!) to the point of vomiting... but there is no headache or dizziness involved. It's a rare MS symptom, apparently - yay me!

▶◯▶ For me, finding a sense of balance feels harder some days more than others. I'm not talking about balancing life and work priorities - we all deal with those. It's finding a positive balance between all my varied other health issues.

▶◯▶ NOTE: My MS symptoms will randomly come-and-go over my lifetime. It's called "Relapse and Remission". Plus... yes, it SUCKS having to be dependant on medication for the rest of my life.

▶◯▶  MS Lifestyle Considerations
              MS and Heat 

(Originally posted: 25 January 2017):

When I was in hospital for five days (back in early December 2017), I was on high-level steroids (to reduce the auto-immune symptoms), including a "lumbar puncture" (no bloody 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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Peas be with ewe