OMG! I'm gonna be in a wheelchair...
Now, by this title, I don’t want anyone to be offended by it, let me just start off by saying that. But when I was first diagnosed and learned more about what multiple sclerosis was and what my future may or may not become, I was freaking out.
So I guess this blog is for those who have freaked out like I did. With MS, comes uncertainty of our future and if we are going to be disabled and if so, how long till we are dependent upon a mobility device.
Let me just say that, I know how you feel. The Internet can be full of such wonderful information but it can also be the devil. I read a lot of information and I also looked into personal videos on YouTube about people living with MS. I'm not saying that everything I found was negative or scary, but with the emotional state I was in from just hearing I have MS, I wished I could of un-seen some of things I did.
Now, with that being said. A few months after I was diagnosed, I did end up in a wheelchair. HOWEVER, I am not in a wheelchair as of today. I was in a wheelchair, due to a really bad flare, since I had just been recently diagnosed, and the medication I had started to ‘help slow progression’ was not fully in my system, in order to work like it has been proven to in clinical research. I was told that I had lesions on my Brain Stem, which I found out, if attacked, does cause difficulties.
So, now going back to my whole Internet searching after I was diagnosed. I’m glad that I had a little bit of ‘know how’ in what I should and shouldn’t be fully trusting when reading about multiple sclerosis. I did find the National MS Societies page, which had a lot of information. But, I wanted to talk to other people that have MS, but I just didn’t want to go to one of those Local Chapter meetings… because I had it in my mind that, I didn’t want to see what I was going to end up like… does that sound familiar? (Again, not trying to be offensive to anyone w/ that statement.)
So, with being newly diagnosed at the age of 22, I went searching for a chat room, so that I could ‘talk’ to people like I wanted to do, without having to SEE them. If this is something you are looking for, I would highly suggest going to MSWorld.org. This is where I volunteer, and what really got me involved in the MS community the way I am today. I can’t even describe the support I received, and how much easier it was on me to ‘talk’ with others, without having to go to a local meeting, or something like that. I mean, let’s face it, it’s scary when you’re first diagnosed and you don’t really know where to even start with your search of information.
With all that being said, lets get back to the whole, me being in a wheelchair thing. I’m not going to sit here and downplay the issue. I was scared out of my mind and was really depressed. But I did go through IV steroids, physical therapy, occupational therapy and even speech therapy (speech therapy because I had issues swallowing and facial numbness, which made my speech ‘off’. Okay, that is kinda downplaying it too much. But don't freak out... My right side of my face was paralyzed, that's what caused the swallowing problem). I am going to sit here and tell you that, I am no longer in that situation. I can walk/talk just fine now, but apparently I have an accent cause I'm from the South, but I don't hear it lol
So I think it goes to show that with MS, nothing is ‘for sure’… we don’t know what’s going to happen with our MS down the road, but we also don’t know what's going to happen next week in general.
Now, please DON’T focus on any of the negative things that you’ve read in this blog that have happened to me because that was over three years ago, and I am no longer that same person. I’m not going to say that I’m not affected by my MS everyday, because that would be a lie, but after all that happened to me, I am determined to fight and be strong and be independent. I don't see my 'relapses' as a finalization of what I'm going to be like for the rest of my life, but rather a speed bump in my battle with MS.
Does your employer provide workplace accommodations due to your MS?