Thursday, October 23, 2008

This is cool

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)


Rose Welty said...

Jennifer, thanks for posting this. I think it is very hard for those who don't have any contact with MS to understand...posts like this really do help us to at least get a better idea. The one thing that speaks to me from your post is that you are a brave individual who never takes anything without a matter what you face, that's a great attitude.

Anonymous said...

I think yuor a fighter and hope you know that i never once thought you were broken. i worry about you cause your my sister but not just cause of the ms, part is cause your so far away and i dont get to see you. i dont understand alot about ms and have been reading the stuff you gave me and trying to learn. i know your a fighter i sported the bruises to prove it. I think dad worries more cause hes so sick so i hope you dont let that bug you to much. I wish the pain wasnt so bad for you cause i know you dont like taking pain pills and i get you dont wanna be a zombie. I want you to know that just cause im in Canada doesnt mean i wouldnt do anything i could for you. I hope i didnt go to far and understand if you dont post this, but i want you to know i miss you and love you and thats been a constant not a new development. I miss talking to you.
luv ya

Jennifer Rose said...

Thank you Rose for the lovely comment :D

We both had the bruises :p But I will admit I can throw a pretty mean punch :p self defense 101 lol

tlc illustration said...

Jennifer, Thank you for sharing. There are so many misconceptions and just plain lack of understanding when it comes to suffering from chronic diseases. I think it is very useful to 'speak up' about what your experiences are. The more others are exposed to real people, working through whatever their struggles are hopefully the more empathetic we all become.

Best wishes as you transverse your own journey.

Macpurp said...

what a fantastic post!
you are not broken,
you are amazing.
you are such a fighter!
you are an amazing artist,
a talented writer,

MS is part of you,
fecking awful part but a part none the less.

my mate has MS and we were arguing as we went round a supermarket....someone said very loudly "you shouldn't argue with that poor lassie she is disabled...."
I said you are seeing her disability,
I am seeing her....and today she is a crabit bugger!

thanks for link to article.


Chrissy said...

I saw that yesterday and thought of you...Don't get me wrong, I know you have MS, I think I bin here long enough to see the odd bits you hav written here and there. Teens right, if you be a crabby one, we will still tell you...I told my bruv off about being crabby with my Dad even though I knew he only had weeks to go (no excuse) but, you are a star, you ain't a moaner and now and then its good to speak out....your sister sounds cool, big hugs XX

twenty pound tabby said...

I just found out about this drug today. Usually I get an email about some bogus thing from people who think they are helping, but this time I got an email about this new drug that may end up really working.

What I'm kind of scared about is that by the time I can get access to it, I'll be too far along in the disease for it to work. I noticed that they said it works on early stages of RRMS. I don't really know what stage I'm in anymore.

Emma said...

It takes a lot to make me cry but sat here sobbing. Everything you have written is how I feel and its actually scares me.
Because I got dressed yesterday everyone thought I was fine when in fact I wanted to knock back a huge amount of pills and sleep through the pain.
Sick of explaining to everyone why I can't remember things, why I'm knackered, why I don't want to sit and listen to them whinge about being tired because they went to bed late. Christ I'm using your blog to sound off. Sorry hun. Thank you for sharing such a personal shot of your life. Lots of hugs (gentle ones!) Em.x

Jennifer Rose said...

thanks Tara :)

I get emails to or people telling me about a new treatment that they heard. I know people are just trying to help, and want to feel like they are doing something. And it is nice to know people care, but it is sometimes hard to tell someone nicely that the drugs already been proven not to work, that a new treatment is crap. I'm scared of that too, no idea what stage I am at either. I've had MS for at least 4 years but would that be too far along? Or someone who has only had symptoms for a year that are worse be too far along. Its so hard to put a time limit on something like this, especially with so many people hoping they can try this.

*hugs* emma I didn't cry mean to make anyone cry. Don't apologise for anything like that! You do need to say things like that to get them off of your chest. I hate having memory problems. Stupid meds :/ Its really frustrating when I know what I am trying to say but my memory wont let me. Sometimes it takes someone else with the same things to understand

Ann said...

Jennifer, I am glad you posted this. I always come to your blog knowing that your posts will be bright and upbeat. I see you as a very strong and determined person and I think this post only confirms that - advocating for MS is a very positive thing to do and I admire you for that. I hope they can advance this, or any treatment, quickly. Gentle *hugs* from across the pond :)

ChichiBoulie said...

Jennifer - that was a wonderful post, both for the realism of living with MS and your courage for posting it.

Vic said...

A brilliant post Jennifer, and a very brave one...methinks you deal with it very well, the best way you know how....thanks for sharing it.

Libertybelle said...

Thank you for sharing something that must have been very difficult for you. You are very brave and strong. My thoughts are with you- I have lived with MS in the family and I know how horrible it can be. Keep strong HugsXX