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.

xoxo

Ashley Ringstaff

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (3)
  • Vagabond Tim
    5 years ago

    I was diagnosed several years ago, five if I am not mistaken, and went through a lot of the same depression and the sort of existential horror I see described by almost everyone else.

    For a few months it was a special hell that only I was aware of. I’ll spare you the specifics but I felt like a slowly stumbling corpse.

    When it went away I wrote this…
    http://bindlestiff.ca/someday-is-now/

    I sold everything and started traveling terrified that I would only get a brief reprieve, that I would be back in that dark void. It has been a year or so since then, sure sometimes I fall down for no reason, and I have a tendency to knock things over, but all in all I am fine.

    The world is full of weird animals, exotic foods, and beautiful things.

    My point is that it can get pretty damn bad at times, fill your life with as much good as you can while you can.

    As for the flare ups, with each one you become better able to deal with it, more aware of what is going on, and more sure that this to will pass.

  • jfalasco
    5 years ago

    Your thoughts in the article are appreciated. It has only been a year since my diagnosis, but I am still experiencing the “website” and meeting avoidance. MSers are such a varied group, it is difficult to glean from personal experiences (except to eat right, rest, and exercise). I read that there is no cure or slowing of progression but there is some denial functioning in my daily life. I will look into the MSWorld site. Many questions still…would be nice to find answers.

  • Ashley Ringstaff moderator author
    5 years ago

    I wish that I could say that EVERYONE that I’ve spoken to with MS has been supportive and uplifting, especially when I was newly diagnosed, but that wouldn’t true.

    I was told some very rude, harsh, and un-true things ( that I didn’t know weren’t true at the time )

    There are people out there that will support you in a positive way. We’ve all been where you are… we all deal with it differently.

    I feel like when I was diagnosed, I dealt with it like I was grieving a loss of a loved one, and in a way, I was. I was grieving the loss of part of myself. Things were changing and I was changing… and I didn’t know how to slow down the roller-coaster of emotions I was going through.

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