So May is like MS awareness month.
A few years ago I set up an account to help raise $ (but most importantly, awareness) for the Kiss Goodbye to MS campaign run by the MS Society. I raised a bit of dosh and was able to convince the teaching staff at my school to wear red (I actually got the day wrong by 24 hours - whoopsy). I wanted to do this again a year later but you had to create an 'event' with no option for individuals. Oh well - they lose!
International MS Awareness Day is actually this coming Wednesday May 28th, so I thought it would be a good excuse to write an update on Mad Sascha. So here it is...
There's not been anything significant happening which is super.
I still have issues with my pulse deciding to be loud in my left ear, so that's been happening for more than 6 months now. Meh.
I think my MS highlight (or lowlight, rather) has been a couple of episodes of serious fatigue that I have never experienced before.
Fatigue is the most common and commonly complained about MS symptom amongst 'MSers'. It's really difficult to explain (I don't even get it sometimes) and I know there are times where I have felt very exhausted and very tired BUT I also acknowledge that people who do not have MS also experience tiredness (nah der!). When this tiredness happens to me, I say to myself, "Yeah hello, EVERYONE gets tired. What makes you so special Ms Mad Sascha?" but then I do realise that it really is probably a sign I am over doing it and it should not be ignored, but considered a bit of an unfriendly warning sign.
So the sis and I had a short and sweet meet up in Melbourne a few months back now. We had a blast. We treated ourselves to Mexican feasts including a chicken jug of margarita which we needed to stand up and pour with 2 hands, window shopping, art looking and picture taking. These are not unusual activities for me. The excitement was doing them in a different city (<3 Melbs!). I thought I was taking it easy. The first night the sis kicked on and crawled in at like 4am, but I was home by midnight!
While my dearest pescatarian sibling had some pampering done, I got back to the hotel and showered and washed my hair and freshened up all in preparation for a new night out to eat good food and tasty beverages. I was excited, but my body was not. I honestly struggled big time. I might even admit that getting dressed was insanely laborious. I got there in the end (dressed that is) and before I slapped on some make-up I just had a little tiny lay down on the bed. "5 minutes" I say to myself. Then I found myself slowly crawling underneath the delicious hotel doona. There I stayed until A walked in the door. I had to admit defeat and explain that I was not going to be able to party on. Luckily, A's big night the night before made her almost on par with me and my fatigue. I eventually chucked on a bit of a face and we dragged our arses to an awesome little Italian joint up the road, passing by some sweet looking bars, that, at the time had zero appeal to me (I will be back you cool little bars, you!).
All good though! I managed to wake up the next day with some improvement. But seriously, it was not a pleasant experience at all. It was a completely new kind of tired.
I've since experienced this feeling again, and it was after I had been sick (AGAIN!), been to a wedding the weekend before, had dad stay 2 nights, going on a school night date, 7:30am meeting, been to the gym, been out the night before (home WAY before midnight this time), worked around the house doing the usual domestic duties, but 'resting' did not seem enough to fend off the fatigue, so I had to sleep.
Boring damn tiredness taking up my precious weekend time!
So…that's that. When someone with MS (or any other illness/disorder/whatever where fatigue is an issue) says they are tired, or they need to leave an event early, try to be understanding and don't hold it against them. They hate it. They are also not lazy.
Wear red on Wednesday, won't you?
