Last reply 2 months ago
First post

Hey guys this is my first post
I have PPMS was diagnosed in May 2017.
I started one tysabri in June of that Year then they Switched me to Ocrevus when Canada was approved year and a bit litter, I started shortly after so my first dose was October 2018.
I was walked with a walker and using a wheelchair 75% of the time, then I gotten worst and now I’m completely wheel chair bound. Before I have been able to transfer on my own with little help, then slowly needed help. Needed care. I started with care 2x a day with 1 care aids. Now I have 4x a day with 2 chair aids and I require a lift to get in and out of bed and chair. I have bladder issues, my memory is bad from time to time. My fingers are often so numb that I can’t feel it. My legs are always on fire and feels like electrical shocks all the time. I was always so positive and easy going. Now I feel like I’m a burden and dragging my family down and I’m feeling dark and that no one understands me. I don’t like the place I’m in mentally. It’s so hard to get out of it. The kicker is my mri scan has not change since last year, it frustrates me as to why my body is failing me so quickly if nothing changing.
I’m 32 will be 33 in September.
This is my story
Tabitha

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stumbler
2 months ago

@tabitha_j_kroeker , I can understand why you are finding this all so hard.

First off, do not punish yourself with a guilt trip. You didn’t ask for this and didn’t go out of your way to contract this. You are just very unfortunate.

You’re right, how could anyone understand you and how this feels? You have to be in a similar position to be able to understand any of this.

So repay the love and care you get shown by exhibiting a pleasant disposition and a big smile. It will make you and your family feel better.


barb_macleod
2 months ago

@tabitha_j_kroeker, I was ‘recently” diagnosed with RRMS in August, 2015. I am in Moose Jaw, Sask, Canada … I struggle too ! This is my first post ,,, and I do Understand 🙂

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