Uggh, I’m tired. M.S. is exhausting. Yeah, I mentioned that already didn’t I? It’s not just the physical and mental crap we put up with….within our own bodies. It is having to wade through comments, sometimes ridiculous, other times aggravating. Most of the comments are made by well meaning people…..more often than not they are unsolicited.
Because there are so many well meaning people that genuinely want to help, you learn to listen, nod, and say thank you I’ll look into that.
Every so often there is a gold nugget in there….like someone saw an article about stem-cell research and MS, or that a new DMD is being approved. Those are helpful nuggets.
There are some annoying and kind of ‘out there’ suggestions too.
Some of the whacked out comments I have heard are:
- “but you look fine.” – so…exactly how is someone with M.S. supposed to look?
- “you should get some more sleep” – really, I hadn’t thought of that…
- “so, do you still have M.S.?” – Seriously?????
- “you should do the paleo diet” – ugggggh
- “I heard they found a cure.” – lol….really?
- “you shouldn’t exercise because it will make your M.S. worse.” – uh no, I like my finisher medals
- “you should go on disability” – uggh, and live on that little bit of money…I like having things and spoiling my dogs…
- “it will be EASY to get social security / disability” – oh, okay…have you ever successfully received either for having M.S.
Then there are the whispers and stares you receive when having a Really Really Really bad M.S. day. There are some decent days where you are doing pretty good but some days you wish you would have stayed in bed. Maybe you are uncoordinated when you walk, drag one foot a bit too much, talk with a little slur. All the sudden people are whispering and looking down at you….imagining (with their small little uneducated minds) that you are drunk.
It also aggravates the he** out of me when people with M.S. that park in handicapped spots (legally), get berated for ‘not being handicapped’ just because they don’t look disabled.
I dare anyone of those idiots to perform an M.S. experiment. Go without sleep for 36 hours, put on some moderately heavy ankle and wrist weights. Wear them throughout the 36 hour experiment. Cook with them, drive with them, shower with them, walk with them, etc. etc. Make sure it is a hot day. Right about 94 degrees should do it. Now go to the grocery store around 2:00 pm and park at the back of the parking lot. Get out and do the shopping. By the time one of those idiots got to the milk aisle they would be rethinking that handicapped parking spot thing. That is what M.S. fatigue feels like, and we have it for WAAAAAAY more than 36 hours. We can look GORGEOUS, STRONG, NORMAL…..still have M.S. and all the shit that goes with it.
But on the Bright Side……I have quite a few good days and not too many really, really, really bad days. I haven’t gotten to the special parking space stage yet….and hopefully won’t for a long time.