September 1st… There is some security in hearing those words. September 1st reminds me of my first days in school, of the start of autumn and winter, of the coming of Halloween and Christmas, of curling up on the couch under a blanket and with the candles and the open fire lit… There’s something in those last few months of the year that make me long for them all summer long.
I am glad the warm or hot summer temperatures are gone again for another 6 months or so, and even though I love summer… the temperatures are my biggest enemy. My reasons for loving autumn and winter have nothing to do with being a negative person, because I am not.
Physically, my body cannot take anything more than 17° . Temperatures below that: absolutely perfect; anything above that: torture. It may sound funny, or weird to some people, but when your central nervous system is under attack by your immune system, your body will become a joke in hot temperatures and your symptoms will flare up like a torch-lit Rome.
I always used to love the hot temperatures in my native country, but thankfully I was already living in Ireland when I was diagnosed. For the last 7 years or so, I am hiding from long exposure in the sun. Scientists say that people with MS lack vitamin D, the sunshine-vitamin, but there’s a Catch 22 if you ever had one… How do you get enough vitamin D when you can’t stay in the sun long? I started taking lukewarm showers instead of hot ones even though I am frozen to the bone sometimes. I stopped eating spicy food and I leave hot drinks stand for a while before drinking them. I started wearing clothes in different layers so I can take off anything that makes my body temp rise. I started wearing lots of short-sleeved tops, airy shoes and airy hats (if or when possible). Silly yet necessary changes to my daily routine have made me re-think about everything I do and how I can do them better where my illness is concerned, and believe me… They do help!
One family member keeps on remarking about my “funny ways”. Some people just refuse to accept that you can benefit from such small changes. I had never thought I’d have to re-think small things like this, but I simply had to. Thankfully, I only have heat-sensitivity, where other MSers might also get sick (er) by cold temperatures. So for all those reasons, I welcome September 1st big time. It’s a reminder that yes… Better weather is on the way for my body and on that note, Christmas and happy family moments too.
Now in all fairness, I have stopped caring what other people think of my funny ways. They’re MY funny ways and they DO help my illness, even when they think I am just too over-analysing or that I am attention-seeking. I understand some people will always have different ideas than I do, and that they need to search for their own clarifications for my behaviour. I’m quite sure that some people will never accept that you can be sick also, be on more medication than they are and yet still be happy when they’re obviously not. There is only so much I can or will be responsible for because I did not take on multiple sclerosis willingly.
Oh true, I have accepted having MS and I am now actually grateful for the things MS has taught me, but I never opened up the door and said “well MS, if you’re just passing by, why don’t you come into my house and stay here for the rest of my life?”. Yet, some people think I did ask for it. I now also realize that those people are the very same who will not believe a word you say, despite having doctor’s letters, pharmacy prescriptions as long as toilet rolls and hospital visits every 5 weeks or so. To those people: please feel free to take over my body 4 weeks every season and while you’re at it, try me out for a year.
And if it’s not the people around you taking the piss out of your physical situation, your body surely will. Because, and let’s be honest, having to mind things other people never even think about, like living in warm temperatures, having hot showers, hot food, hot drinks, hot clothes, hot countries, hot men (oh no, sorry this does not belong under the “to avoid” things :)) – surely it does sound a little bit over-the-top and over-analysed right? Mind you, there are more things MSers like myself have to think twice or even three times about when other people never have to, but I honestly AM NOT over-analysing everything and yes, I AM allowing time and a place for things to happen, even when doing those things will make me feel absolutely drained, feel like crap and all used up. I, just like other MSers, just have to be a bit more mindful, that’s all.
So if you still think that MSers are just hypochondriacs and gone-in-the-head-kind people, I am now taking applications for whoever wants to walk in my shoes for a while. Feel free to drop me a line and ask me for directions. I will be quite happy to swap bodies for a while! :)
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.