I don't talk about me having MS a lot on this blog. I don't want people to feel sorry for me, to think I'm bitching for the sake of bitching, to think I'm fishing for sympathy. Its never the case.
MS is a huge part of me and I wish people would understand how it really effects me. Well John does because he is here and he would do anything to help and often does. Damn lids on jars :p [I have a little tool to help me open jars but sometimes it doesn't work].
When we went back to Ontario last year Dad asked me if I was all right. I said yeah but then he said "You are a lot sicker than you let on aren't you" He is right in some ways. I don't want people to see that I do struggle with things, that I sometimes have such problems walking I want to cry; that there are days were John has to push me out of bed because I don't want to move. A day never goes by where I am not in pain. I don't want to take extra meds as I am already a zombie with the ones I take. I would be a sloth if I started taking more. I am such an independent person that it can be very hard for me to ask for help.
Its not as bad as he thinks, thinking the worse. Its not a death sentence, It doesn't mean that I will end up in a wheelchair. It doesn't mean I will end up blind (but if anything was to happen I could see going blind happening. Ever since I had black outs and flashing lights in my vision I need to wear my glasses all the time. If I am reading I often have to close one eye to focus, which gets really annoying really fast. My vision is all screwy. And I will admit that kind of freaks me out).
If I had of been diagnosed 10 years ago, even 5 years ago I think I would have taken the diagnoses harder. With the advancements in medicine MS doesn't seem like such a burden. And no matter how much I tell people that it really doesn't bug me, most people don't believe me. I've said it before and I will say it again. I am just glad I know what is wrong.
I know its only been over a year so haven't had a lot of time to get use to what I can do and what I can't.
I do hate when people stop and stare when I have problems walking. Look I know I look like I am pissed, but I haven't had anything to drink. Shouldn't for many reasons. The day you see me get drunk is the day I hear I have an hour to live (or someone wants to pay me a million pounds :p)
I hate when people act like I am broken. It pisses me off to no end. Yes there are days where I am broken but I push myself (or John does. Who needs a motivational speaker when you have a grumpy Scotsman yelling at you to walk another 20 steps? :p).
This wasn't meant to be a post where I spend the entirety of it complaining. Actually I am not sure what this post was meant to mean. Maybe me trying to explain how I feel? I have no idea. I'm just rambling.
There was a point to this post. This
It would be fantastic if this works in the long run. If it does get approved it more than likely would be pointless me taking the drug, but it would help so many people if the research is favourable. Yes there are risks, and it would be up to the individual person and their doctor to decide on the course of treatment.
And because it is early times with the drug, people shouldn't get their hopes up. But I know what I would de if given the chance.
I would take it. False hopes be damned :p (and I'm starting to look like a bloody pin cushion from all the Rebif injections I am taking)