Wednesday, 6 June 2018

MS and Heat


MS and Heat... not good partners!

Our summer temps here play havoc with my MS... hands, arms, feet and legs are buzzing / jelly-like / rubbery like crazy! Thankfully, it all settles down again after it cools down of an early morning - phew! Wipes me out, tho.

 

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.

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In our summer January 2018, we had a loooong spell of temps in the mid-to-high 30c's, that went on for weeks (much longer than normal)!

There was one day when, even tho I was wearing water-soaked clothing and cotton hat sitting in front of an air conditioner, laying on a wet towel on the floor - I was crying in frustration, as it felt at least 10c+ warmer than it was! Even laying on the floor was exhausting that day. Thank goodness I live on my own... it's not such a fashionably-cool look! [laughs]

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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" afterwards.



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.
  • Pour cold water over my head... once my hair starts to dry, I will repeat this process.
  • 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 (ie. 'pulse points') to provide quick relief.
  • Ice under the arches of my feet.
  • 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"


Bookmark this page: bit.ly/ms-heat

Peas be with ewe 
Mal

Tuesday, 5 June 2018

Unconscious Mutterings


Week 797
I say ... and you think ... ?
  1. Fanatic :: any foolish religious zealot
  2. Rise :: and fall of the ocean tides
  3. Ache :: my left leg at the moment
  4. Oh oh oh :: cheering for the Soccer World Cup soon
  5. Chips :: hot chip butties - still my all-time favourite norty food
  6. Best of :: the worst situation - my life
  7. Lost :: and found - moments of clarity, sanity and wisdom
  8. Gamble :: "It's better to have loved and lost, than to have never loved at all"
  9. Longing :: companionship
  10. Crowd :: I try to keep away from crowds these days...

Peas be with ewe 
Mal

Thursday, 17 May 2018

Asking for Help


Asking for Help

I know I've had to swallow my stubbornness, pride, fear - and embarrassment - and sometimes ask for help! After all, I've been doing things happily self-sufficiently for 50+ years, without even thinking about it... some days I forget I'm not 100% well.

For example, I've been so used to being able to effectively mow my own lawn... but once the vibration of the mower gets to my #MS hands, they become useless for a few hours afterward, as a result. So - last time I asked someone to help me, and mow my lawn. (Stubborn pride swallowed).

It's OK to ask for help, you know?

So... what things do you find you need help with?


Article: "It's OK to Ask for Help"
( Source )

It’s okay to ask for help. I am an extremely stubborn and self-sufficient person. I love knowing I can do things on my own, but one thing I’ve had to realise over the years, is that IT’S OKAY to need help. In fact, some days it’s absolutely necessary. I am strong, I am independent, and I am perfectly able, but-let’s face it, there are days where MS undoubtedly takes over. There are days where I wake up weak or in pain, and those days I need a little extra help. Since being diagnosed at a young age, I have always taken pride in the fact that I am still able to do most things on my own. I have taken pride in that, because I have had to be honest with myself and face the fact that one day I may not be able to do everything I can do now, on my own. It’s hard for me to ask for help-whether it be pride, or mere need to prove to myself that I can do it. However, over time and through experience, I have come to find that some things I think I can do aren’t always best done alone.

There is irony in the fact that while I love to extend grace and help others, I genuinely struggle with asking others for help myself. I think it’s because, requesting help and support from others has a way of making me feel vulnerable. I always think that I should be able to do things all on my own, or sometimes, that asking for help will make me seem weak-although, sometimes, my body is literally weak. But, asking for help doesn’t make me that way! Sometimes, though, if you have to ask for help from a stranger or someone you don’t know very well, asking for help can be really scary or even embarrassing at times. I have an especially hard time with this one, because I don’t want others to feel sorry for me. And, also asking for help from someone you barely know makes you vulnerable to rejection. I mean, what if they tell me no?! I have to remind myself daily that others may have their opinions and/or reactions to me, but that does not in any way define me. It’s important, too, that we give ourselves permission to ask for help. We need to remind ourselves that sometimes asking for help isn’t only OKAY, but it may be essential for us in a desperate time of need. It’s also vital that we remind ourselves that we are worthy of help as well. If you choose to see it in a negative light, and ask for help negatively then only negativity can come from it. Choose to ask for help in a confident and humble way, so that others will not only jump at the chance to help you, but also gives them a way to contribute and do something good in return.

One more thing I would like to add-to receive help, we must be willing to help others as well. While asking for help can stink at times, it’s nice to know you have the support and care of others. When we extend help to other people who have similar issues, it not only makes us feel good, but it’s extending the favour. Asking for help isn’t always simple, and sometimes it’s really darn hard, but EVERYONE can use a helping hand sometimes. Remember that, and don’t be afraid to ask when you’re the one in need of a little help yourself.



Bookmark this page: bit.ly/Asking-4-Help-is-OK

Peas be with ewe 
Mal