A sad realization about Multiple Sclerosis

A sad realization about Multiple Sclerosis

#just wanted to add this note because this was such a dismal post. A few hours after I wrote this post I realize something very important, with secondary progressive MS you are not functional one day to Stuck on the floor another. I don’t have relapses anymore. I now realize I was sick with this abscess infection and it played havoc with my MS. So yes, this is a possible future for me with MS, but it won’t happen overnight. It will be my gradual decline giving me time to adjust to changes. Not sure how much time that is, but it’s not an overnight scenario. I think that’s what freaked me out the most.

From the day I was diagnosed with multiple sclerosis, way back in 1998, I had a fear of living life in a wheelchair.  Back then there wasn’t even much information on MS and I only had an encyclopedia to look up what the hell my disease was. That encyclopedia only offered a paragraph or two of the disease but it did discuss that within 10 years most people ended up in a wheelchair.  This encyclopedia was written before any disease modifying drugs were introduced and I was lucky because in 1998, there were two already offered. My doctor started me immediately. However, that thought never really left my head. I always had a fear of hitting that 10 year mark with MS that I might be in a wheelchair. I wasn’t in a wheelchair at 10 years, I wasn’t in a wheelchair at 15 but I’m mostly in a wheelchair now just shy of 22 years. 

Living life in a wheelchair was the one part of MS that I had to really fully accept. Probably because it was that one part that stayed in the back of my mind for all these years, whether I knew it or not, because it was my biggest fear with being diagnosed with MS all those years ago. It was difficult to accept, as most stages with MS are, yet I have accepted and adapted and I’ve been truly OK with my stage of a MS for a while now. Then this week I learned there’s another stage of a MS that still to come. That shook me to my core.

If you follow my blog, or if you don’t, I’ve had an infection that has played havoc on my MS symptoms this week. With this havoc i took a fall and I couldn’t get up. I’ve fallen and I can’t get up. I laid on the floor for an hour trying to get myself up before I called for help. I have bruises up and down my arm from me trying over and over to somehow push myself up. I’ve been on the floor before where it’s taking me a little bit to get up but it has NEVER been like this. My body had nothing in it. I had no muscle capacity to do anything other than flop around on the floor and maybe flip myself over from back to front and even that was a struggle. My legs were completely useless and my arms didn’t have enough strength to pull my body weight up at all. I was completely helpless. As I lay there in between tears of frustration I realized there’s still one more stage of MS that I could be bedbound and just about paralyzed. That’s how I was on the floor that day I was paralyzed. No encyclopedia told me about this. This was very very real and a very very real possibility. It never dawned on me or occurred to me that things could get worse than a wheelchair. I thought I was actually at the worst it could be. I don’t know why. Maybe I thought all right I won’t be able to take the few steps that I take now or that maybe I’ll need more help getting dressed or in the shower but somehow I never thought that that additional help meant my arms and legs worked less. I never realize what that would mean if I fell on the floor. I never realize that at some point in time I might not be able to do anything and would need total care. Maybe I just somehow didn’t wanna believe it or blocked that part out. I can’t answer that but when I laid there on the floor this week it all made sense very quickly. One day I may not be able to hobble over to my wheelchair as I am now, get myself dressed, showered, in bed etc. I’m still in a fairly independent stage even though I’m in a wheelchair. There will come a point where I won’t be. It was extremely disheartening and very difficult to realize. I’m sure other people around my family and friends they probably know that it was a stage coming. I don’t know why I didn’t but until this week I just didn’t. Now I realize there’s more to come. I turn 48 on Friday and I’m so happy for the first time in my life in such a long time. I have accepted my MS, almost made amends with it which is a big thing until this week.

4 thoughts on “A sad realization about Multiple Sclerosis

  1. Your fears are mine as well. We are the same age, Jamie.

    Something I’ve started to notice is I’m no longer having the classic exasperations like I did when I was first diagnosed with RRMS in 2006; it’s just a slow progression. I see it with my fatigue (or used to before the supplements), the increase in cervical and thoracic lesions, no new lesions on the brain, more “black holes” found on brain MRIs, the worsening cognition level, the increase in brain atrophy on the MRI, the difficulty swallowing at times and the increase in pain (especially around my back and neck). The only positive thing is my walking is good for now. But I still think about what the future will bring in 5 – 10 years.

    I usually try to stay upbeat and occupy my time with pleasant things. I also try to block out anything to do with MS and hide my symptoms and pain the best that I can. My husband, on the other hand, has hired contractors to make the house more handicap-accessible. I know he’s the one who thinks about my MS trajectory more than I do, so he’s preparing for it. It’s sad and scary not knowing what the future will bring.

    I guess the best piece of advice I was given was from my late father-in-law who said, “You gotta live life on life’s terms and not worry about the what-ifs.” I try to do that, and take care of myself the best I can.

    Hugs being sent to you, birthday girl!

    1. That’s a very good way to live life. But finally occurred to me a little after I wrote that flag is that my symptoms are really not going to go from how I am today to that extreme that I was when I was sick. It’s going to still be a more gradual worsening as it’s been for me so it has more time for me to get used to as opposed to sudden onset.
      That was the part that I think really shocked me.

  2. I have been primary progressive since I was 17 and I am 56 now. I landed up in a wheelchair, need help for everything. To get dressed, to put on the hoist to go to bed to get onto the commode to go to the toilet. I have a suprapubic catheter. Never EVER imagined this would happen. No fun. Must think gratitude every day. SCARY.

    1. It will one day be me as well. Diagnosed almost 22 years ago. I am always grateful for what I have this episode just made me more grateful.
      Thank you for your comment and your bravery. It is inspirational for people like me.

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