TwistedHelix wrote:Hi Ewizabeth,
My reaction to heat is exactly the same as yours, (although not any more because " luckily" I rarely get to go outside these days), but it must have been very painful for you to have your sons see you like that – I think many of us struggle hard to hide our symptoms from those we love: partly to protect them, and partly to try and kid ourselves that we are OK really. Many symptoms are invisible to a lot of people anyway, at least at first, and we often try to keep it that way. This is a bit of a paradoxical reaction, because sometimes we find ourselves complaining that no one understands because they can't see how hard we are working to keep the appearance of normality up.
Don't forget: your sons ARE having to deal with MS; they are facing just as many emotional struggles, upsets and fears as you are, but from a different perspective, and you are all having to face a gradual but enormous shift in the dynamic of your relationship – a frightening but potentially hugely rewarding one.
Practically speaking: have you ever thought of trying those cooling vests? I've never used one myself, but the principle sounds good: they work by circulating cool water around pipes sewn into a waistcoat; I think it's cooled by one of those freezer blocks you put in cool bags.
I know the idea of a wheelchair is a hugely daunting one, and feels as if you're finally admitting defeat, but maybe a small lightweight folding one, just for use at big sales like this, might mean you can carry on enjoying them. That will also mean another big adjustment for your sons to make, because both you and they will feel very self conscious at first.
I'm so glad you were still able to enjoy a good holiday, and I wish you many more (cool) ones!!
havingms wrote:Dear E,
Cooling vest are great. Ive been using them for the last 5 summers and they realy help. The can keep your core temp down for up to 4 hours dependant on the outdoors tempreture. I keep mine in the freezer all summer long so its icy cold.
Also there 's nothing wrong with getting a wheelchair for those hot shopping days. Let your sons helpout by pushing you around. As twistwhelix correctly pointed out, this is part of their process as much as it is part of yours.
Hope all is well and wishing you the best.
Loobie wrote:Once back in the A/C and a half hour nap later, I was "back to normal". I hate that as well since our family is very active also. I'm really not offerring any help here, but I'm with you in spirit all the way. I know EXACTLY where you are coming from.
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