I’m Relapsing; Can Hardly See or Walk

I am going to be short and to the point. I am in a bad mood
and don’t feel like writing or doing anything really.
The last few days have not gone well for me. I was dizzy but
not enough to get in my way. I pushed through it, in fact, I could still drive.
But come yesterday I rapidly started falling apart. I woke up really dizzy.
Even when I was not moving (as before the dizziness only struck when I moved
around too fast) the world was spinning. This made walking really hard. I kept
stumbling over and towards the end of the day I had to dig out my cane from my
storage.
I feel helpless again; I forgot the feeling.
Today has been the same although part of me feels like it is
getting a tad better. Too soon to say… we will see tomorrow. But it set of a
chain reaction of events that have left me angry, depressed, full of
resentment, and as always, stubbornly wanting to overcome everything despite
how tired I am in life.
I have such a headache from sleeping in. I’m dizzy, somewhat
nauseated, in a bad mood and I am having trouble walking. I want my Acthar and
I want my Tysabri. It pisses me off that my health is paying the price for my
insurance company dragging their feet to most likely determined how to make
this a more profitable situation for them. Money…

I just want to stabilize my life.

8 thoughts on “I’m Relapsing; Can Hardly See or Walk

  • February 1, 2015 at 2:05 pm
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    Have you contacted Biogen?! I am uninsured as for a couple of months while my husband switched jobs and they set me up with free tysabri and help with infusion costs! Call them…. They want you on this drug! Feel better. Relapses are so scary and can make you feel so alone, remember you are never alone!

    Reply
  • February 3, 2015 at 8:27 am
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    Hello Matt. I was up last night unable to sleep (which always happens at full moon) and came across something you wrote: "Seeking Support When You Don’t Receive it From Home". Had I been better at putting my thoughts into words, this is something I could have written, it was all so familiar.

    I will follow your blog and I wish you the best of luck, lord knows you will need it. MS can be brutal.

    I have been unable to work for many years, fighting my MS became my full time occupation. Prescription drugs had a pretty severe and negative effect on me too, so I tried my own approach to dealing with it.

    I am pretty much "off the grid" when it comes to communities or support groups, I am not even on FB. I guess I feel that I have enough with my own problems. But if you want go get in touch, please feel free to do so. While I don't know much about prescription drugs (having only tried Rebif and Copaxone) I have done HSCT. And before that, I tried a whole bunch of different approaches that did more for me than the drugs ever did.

    All the best.
    Jan

    Reply
  • February 3, 2015 at 4:26 pm
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    Jen,
    this really IS a full time job isn't it? I feel I m loosing the energy to keep it up… Best pf luck to you!

    Reply
  • May 11, 2015 at 12:44 am
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    Hey Matt, well I just wrote a nice long response here and it got deleted when I tried to publish, so here it goes again. I'm a student in Sharon Pavlovich's class at LLU and she's encouraged us to check out your blog… This post caught my eye because you titled it "I'm relapsing…" Can I ask what type of MS you have? (Relapse-remit, Primary- Progressive, etc.?) we just learned about the different types in class so I'm just curious. I'm sorry to hear of your troubles dealing with insurance right now… What a headache. I hate dealing with crap like that,so I can't even imagine the time and frustration you must spend dealing with it. I saw you wrote "I feel helpless again. I forget the feeling". What resources do you turn to when you feel helpless? Are you a part of any support groups, and do you find it helpful? When and if you do experience times of remittance, is it difficult to get back to life as usual? (as far as social participation, or doing your normal routine of leisure/ work/ etc?) Sorry for the pestering questions, but you seem open and willing to share. Please don't feel obligated to answer anything you don't care to! Thanks for being a resource for our class and sharing your experience. I hope you're currently doing well and staying out of this SoCal heat! I'm not from here and can't believe the never-ending summer!

    Reply
    • May 11, 2015 at 2:59 pm
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      Hi Ashley, what type of MS do I have… I love this question. You know the kind that eventually gets better and goes away? That aint the kind I got. Haha on paper it's RRMS but it's simply a technicality for insurance purposes. If I state that I have anything else they will not cover any treatments so my Dr. keeps it as RRMS. Catch 22, RRMS keeps me from getting SSDI where any other form of MS would get me SSDI but no healthcare….

      Anyways, huge misconception; "RRMS mean that you relapse and then have periods of remission where nothing is wrong." NOT TRUE. After each relapse a percentage of the damage done does not heal. So though someone may have RRMS they can eventually be wheelchair bound or blind or any other number of things that makes them disabled, just not always in the eyes of Social Security.

      So is it hard to get back to life as usual? No such thing. It's a constant battle of adapting to what ever "new normal" I am stuck with. I am starting to think (well part of me) that I will never drive again and at 25 that makes social living sort of hard… But time will tell haha….

      Reply
  • May 11, 2015 at 12:44 am
    Permalink

    Hey Matt, well I just wrote a nice long response here and it got deleted when I tried to publish, so here it goes again. I'm a student in Sharon Pavlovich's class at LLU and she's encouraged us to check out your blog… This post caught my eye because you titled it "I'm relapsing…" Can I ask what type of MS you have? (Relapse-remit, Primary- Progressive, etc.?) we just learned about the different types in class so I'm just curious. I'm sorry to hear of your troubles dealing with insurance right now… What a headache. I hate dealing with crap like that,so I can't even imagine the time and frustration you must spend dealing with it. I saw you wrote "I feel helpless again. I forget the feeling". What resources do you turn to when you feel helpless? Are you a part of any support groups, and do you find it helpful? When and if you do experience times of remittance, is it difficult to get back to life as usual? (as far as social participation, or doing your normal routine of leisure/ work/ etc?) Sorry for the pestering questions, but you seem open and willing to share. Please don't feel obligated to answer anything you don't care to! Thanks for being a resource for our class and sharing your experience. I hope you're currently doing well and staying out of this SoCal heat! I'm not from here and can't believe the never-ending summer!

    Reply

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