Wednesday, 6 December 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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#MSlife #LivingwithMS #CureMS #MSWarriors #MSFamily #MSPals #Thankful
#MSSucks #MSproblems #MSisBS
@MustStopMS @MS_Australia @shiftms @voicesofms
@msgetinvolved @KISSGOODBYEAUS @mssocietyuk

MS Blog Post Categories
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Peas be with ewe 

An encouraging dream

Just an outline... (I might 'flesh' this out a bit later... I want to get this down while it's still fresh in my head).

I had an encouraging and reaffirming dream.

Visit one doctor... he didn't care - just too busy. Cut me off.

Another doctor used a simple method to help me think "outside the box" when it came to my disability. He treated people as people, as individuals - and it was really reaffirming.

His simple technique helped me to recognise my problem, use it, and use what I have (ie. my strengths) to help other people in their situations. Even walking through an oil-spill from a car, using my walking stick - I was able to overcome what could have been a big problem, by using my strengths to beat it (I was still able to use my arms to help lift myself out of the situation!)

But then, when it came to an opportunity at myself being able to help someone else in their situation, I jumped at the chance - even tho I was disabled myself.

Helping others in their situation bought me much inner satisfaction and joy.

Part of the way I'm 'wired' is to want to help other people become more effective at what they do. I think that dream just helped reaffirm that, when I was having a 'low' day.

That, and reconnecting with an old friend (thanks for listening MJD! - it meant the world to little ol' me!), had a very positive effect on my psyche.

With this whole MS thing, I know I am still trying to figure out (sometimes subconsciously) how to continue to positively adapt to it all.

Peas be with ewe 

Friday, 1 December 2017

MS and Heat

MS and Heat... not good partners!

During a daytime jazz band gig I was playing at in March 2017, it slowly became very hot and humid in the room we were performing in. For the first set, my MS hands were fine playing guitar (as can be expected, that is!) As the temperature and humidity started to rise during the second set, my hands became very uncooperative! I had to take some 'private alone time' during the break after the second set, just to regather my wits. My hands felt like rubber or jelly for the third set... I could not play accurately at all (for my standards), tho I soldiered-on.

I forgot to take my small fan, as part of my standard gig-bag. But I'm also thinking of adding some instant cooling packs as well - just in case it happens to me like that again, in the future. Maybe a small esky with some frozen ice packs as part of my gig-bag, also? Well, if needs be...

It was a real shock for me, as to experience this so profoundly, when exposed to a sudden change in both temperature and humidity.

When I got home afterwards, and "cooled down" - all was normal with my hands again! Go figure!

Tho the drive home after the gig was 'interesting" (all OK, tho), I felt so absolutely fatigued as a result of the whole experience.

As fellow MS Twitter Cindy aptly described the after-affects of heat and MS, we are "Left to Roam the Earth like a Retarded Zombie" afterward.

Staying Cool with MS When It's Hot
  • Stay indoors out of the direct heat.
  • Visit a local public space with air conditioning. ie. library, theatre, club etc.
  • Use things to cool yourself down: cooling vest, neck wraps, wet bandannas, a wet hat, wear a wet towel around your neck.
  • An icy cool drink - keep hydrated.
  • Freeze bottles of water and sip on the water as it melts throughout the day.
  • Chew on ice cubes.
  • Cool in a pool - or use a cool bath or shower, or sit under the sprinkler.
  • Plug in the fan - air flow is important, if you don't have air conditioning available.
  • Use a spray bottle to lightly spray yourself with water
  • Wear light clothing
  • Keep bathing water cooler rather than warmer.
  • Hold ice cubes, ice packs, or anything frozen against the inside of the wrists, back of the neck, or top of the head to provide quick relief.
  • Place a cool, damp cloth on your skin where the blood vessels are (inside your wrists, around your neck, back of knees/elbows, etc).
  • Rather than preparing/eating hot foods, snack on frozen bite-sized pieces of fruit, such as pineapple chunks, banana slices, blueberries, or grapes.
  • Mix and match different things, to see what works best for you.
  • Know your limits!

Blog Repost: "This Heat"

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Peas be with ewe