So I keep thinking about how annoyed I am about the latest insensitive comment from someone when it comes to this disease. As most of you who have the diagnosis know it is very unique to all of us… since the damage created in our brain and spinal cord is different in each of us, so are th symptoms different in each of us. What makes this comment worse is that this individual had a parent who died from MS related complications. So I’m talking to him today and today was a bad day. It’s my third in three days in a row out of five at work and I’m already running on critical battery life. I had but half an hour earlier been sitting in my office floor (which is private) praying (literally) that I wouldn’t faint or pass out with the dizziness, pain and fatigue I was experiencing. I wanted to go home to go to bed to give in but I refused. Then in conversation this guy says I know three people with MS and [Insert hand gesture of lower level, medium level and higher level] you are here, such and such is there and you are at the bottom. No matter what stage our MS is at I would say it pretty much flipping stinks either way. My brain scan still shows white lesions, as does my spinal cord. I still have fatigue, dizziness, nerve pain, muscle spasms, tremors, reduced sensation in different areas of my body, poor grip in my left hand, constipation, bladder emptying problems but the only one symptom that shows is that I use walking stick. I’ve come to the conclusion that Harry Potter’s invisibility cloaks is pretty s*** and that he can have it back. Some days it just feels impossible to be suffering so much inside and to the world look semi OK… although I’m no model hahaha. I may put on my make up but who wants to look crap outside as well as in. I may put on my very fake smile and chat about something that isn’t MS but that doesn’t mean it isn’t real. I wish people would think before they speak. My sister has MS but our symptoms are massively different. I loathe being compared to her as that just makes me feel even more invisible. I want to be seen for being me and just me, if that makes sense but sometimes just sometimes I wish there was a way of flipping the invisible cloak and laying my scars bare for all to see so perhaps just once they may stop judging me :’-(
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