Hello

Hello

I’m still here. I have kept the blog. I know it’s been a long time since I have written anything but I have to admit I haven’t had much to say. My life is very quiet now. I choose it to be that way. I find it easier. I still workout in the mornings but I now do it only 5 days a week. I’m still obsessed with Bionic Gym. However, I spend the majority of my day in my bed watching tv. I can’t really do much more. Multiple Sclerosis hasn’t been easy lately. Over the last year my right side has caught up to the disability of the left side. When I last did physical therapy I wasn’t able to even walk more than a step or two. My right leg has all the same symptoms as my left leg. I don’t have the ability anymore to let my right side overcompensate for the left side’s weakness. Now neither leg moves well enough to walk. The worst is my right hand. It gets tired like my left hand. Sometimes I can’t grip my exercise bar to complete my full set of exercises. My right hand has always had to compensate for my weakness in my left hand especially as I fatigue. It becomes increasingly difficult and frustrating when my right hand starts failing 20 minutes into my program and I’m out of hands left to help me. Now my quads are not engaging and I haven’t been able to stand up by myself. I’m trying to work out a safe way to transfer to and from my wheelchair. I got a transfer board but we need work on that. There are things that I have had to face in my new reality. I also have had to accept my new life. Actually I have even questioned if I caused some of my own symptoms by staying in bed. However, how could sitting in my uncomfortable wheelchair have been any better?

I heard Christina Applegate say something like this during a podcast. She doesn’t enjoy going out for a drink anymore. The thought of what that would entail to get up, dressed and ready for something like that is completely overwhelming. Now if someone wants to come climb into my bed with me and hang, that I’d very much appreciate. I played that for my family to hopefully explain to them why I turn down going out to dinner. They always believe it will be a quick thing. It wouldn’t be for me anymore. I’d be uncomfortable in my wheelchair in the full seated position for that long. The silverware at restaurants will be too heavy for me to hold. I probably can’t cut my food. I can’t control my body temperature so I will overheat regardless if it is hot or not. Eventually I’ll start to have to keep myself upright with a chest strap praying my head doesn’t flop. Now I ask you does that sound enjoyable? I therefore stay to my quiet life at home in my bed watching tv. Unfortunately the life leads to very little blogs but it I’m still here.

6 thoughts on “Hello

  1. I have settled into a very home-centric life myself, not that I can’t go out (though that has some new challenges), but I have lost interest in most of what goes on “out there”. I’ve been reading up on the old hermits and anchorites who literally sequestered themselves from the world, but, interestingly, still found ways to serve. IDK.

  2. Hi, Jamie! I know being bedridden is somewhat depressing. It sounds like the two of us are having issues with MS. I was recently told my MS has progressed to SPMS. In addition to that, I was also diagnosed with Parkinson’s disease. Walking is incredibly difficult for me now, so I empathize with you. I also don’t like to go out; I would rather cuddle up with my cats and watch Netflix.

    1. Sherri I’m so sorry to hear about the Parkinson’s diagnosis. Didn’t the powers that be get the memo that one disease is all that we are signing up for this life? I think you and I need to share our what to watch list. I have moments of being sad but truthfully I find I’m happy being in my little world. I love the people that do surround me and stopped worrying about those acquaintances I use to wish were here.

  3. hello, stay safe and well. I just read u now (u write very well) and know nothing about u but if it can help u, i’ll come to see u & just talk and laugh together. Yes i have ms, i live in nyc.
    🙂
    alex

    (“no longer being able to count on my body, I will play with all my soul” giovanni allevi composer and pianist)/i am not giovanni allevi.

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