Me and MS


I’ve been having a problem writing today.  I start a sentence, then pause, and forget the rest of what I was going to say/write.  The words are not coming easily either.  I keep grasping but they are eluding me.  I rephrase and rewrite every line, and it’s not so much self editing as it is MS censoring.

I have MS and it affects everyone differently, every day.  The US Navy had an enlistment slogan in the 1970s…it happened again!@! I forgot the slogan as I was typing.  Nevermind, new paragraph…

I want to cry, I’m afraid it will get harder and harder to write.  I never thought it would end.  I’ll have to switch to writing poetry (for it’s brevity), which, I’ll be honest with you, I don’t understand much.  I don’t dislike it per se, but I never wrote any and generally do not read any (until recently finding a few poets here at WordPress).  I always pictured myself as a novelist, not a poet.  What’s the difference?  I don’t think there is one, except for my own bias against poetry.  Perhaps that is what MS wants to teach me today–that I need to try another style of writing.

I planned on working on my novel today, but with the memory phase-out going on I’m not sure I’ll get very far.  Well, 50 words is still 50 words closer to my planned 50,000.  Like any … So I…damn, happened again.

So, I have to change again.  As anyone with MS can tell you, change again is the new mantra.  You have to adjust daily to what your mind and body will or will not do.  You could wake up tomorrow unable to move your left arm, or move at all.  You could end up with ON (Optic Neuritis) a painful condition of pain in the optic nerves.  It can give you nystagmus, where your eyes move back and forth or up and down, on their own.  I can’t imagine how frightening that would be trying to make it in a world that was constantly fluttering.  Balance and dizziness would be a constant companion.

But I didn’t start this particular blog to discuss the various tics of MS, but just about the mind tricks it plays.  I can look back and read my writing from 10 years ago and I was prolific.  Reams of notebooks filled with line after college-ruled line of my long hand scratchings.  Today I can barely hold a pen for 15 minutes at a time.  To do three pages of longhand now is a painful ordeal.  Part of me wants to push through the pain, ignore it.  I’m glad I’ve been able to move to the computer keyboard fairly easily.  I still feel there is a disconnect between mind, fingers and computer, that I don’t feel when writing in longhand.  Is that the root of my word/memory problem?  If I try to go back to writing in longhand might I recover some of what I’ve lost?

I’m not very hopeful, but then again, what have I got to lose?  I only need to remember that I’ve decided to write my drafts in longhand from now on.  I’ll worry about learning poetry later (working on my Spanish is enough for now).

15 thoughts on “Me and MS

  1. I am soooo bad in long-hand. I very rarely attempt to write anything but a short note or card. For one thing my writing is so illegible and messy. Losing your train of thought must be very frustrating…It does happen also with me but it sounds like it does more with you, especially as you try to write your novel. I’m not sure if doing more in longhand with regard to your train of thought would help or not…on the one hand it might a bit but on the other it is more painful and that in itself may be a distraction…Diane

    1. That’s the dilemma, I’m often finding myself up against a wall, unable to see other options; voice recognition programs (I’m not that bad off), but at the moment I’m just feeling a little stuck between a rock and a hard place.

      I’ll wear my braces and see how longhand goes for a while, like I said, what have I got to lose.

  2. Sorry to hear of your problems, and congratulations on achieving anything when you’re struggling like that.
    Why don’t you like the sound of voice recognition? I’ve written perhaps a million words of fiction and academic papers and letters, stories, blog posts, FB posts and pretty much anything. I started after I’d had a neck op to remove a disc which left me with arm and hand problems.
    Writing longhand is okay, especially if you learn to use VR to then read your words into the computer. And VR is great for editing and other stuff.

    1. I just don’t think I’m disabled enough to go to the step of a VR program yet. As long as I can still move my fingers, and hold a pen, I will try to write. I do hope I never get to the point where I have to use VR to write.

      VR doesn’t solve my problem of forgetfulness. I think I’ll read the Dictionary or Thesaurus, maybe that will bring some words back to me.

  3. I hope this phase doesn’t last too long for you, I know how frustrating it is when it comes along. It might be worth a try with the long hand idea it’s amazing how the little things can help 🙂 You could try brain training exercises, even simple things like quizzes, puzzles etc are supposed to keep your brain honed and help those pathways to keep going/reroute where necessary xx

  4. I had neurogenic pain for a few years before and after neck surgery that made typing difficult and painful. That was some years ago and the effects thankfully became less disabling. But starting this April I’ve somehow developed a chronic, incurable rare inflammatory condition called Palindromic Arthritis. As you will no doubt know, a palindrome is a word reading the same backwards as forwards. This condition is named after that – the effects come and go quickly. So any synovial joint can swell up for a couple of days then go normal again. I’ve had flare-ups in both feet and ankles, knees, hips, shoulders, elbows, forearms, wrists, hands and fingers. Oh, and i the jaw as well. The pain is incredible – like burning, tearing, crushing and twisting all at once with the worst pins and needles imaginable. It makes me cry out loud and I take tons of painkillers but they do not do a whole lot.
    NSAIDs make me ill and don’t help much either. I’m waiting to see the Rheumatologist again as there are Disease-Modifying Anti-Rheumatic drugs he thinks may help. However, these work by suppressing the immune system and leave you open to all kinds of other infections. These drugs were formerly used for chemo-therapy 🙂
    So I do have some understanding of what it’s like to struggle with writing and typing 🙂

    1. Wow, sorry to hear of your condition. It is amazingly crippling to have hand or foot pain. So far all I have is the MS, thank goodness, and RSD that’s been in remission nearly 30 years, so it hardly counts.

      I sympathize with you. I take a DMD for my MS. The side effects are crappy, but not unbearable. Personally I’m not sure how much it helps and will discuss with my neuro next visit. I’m not familiar with the DMDs for rheumatoid problems.

      Good luck with your next course of treatment. Hope it brings you relief. 🙂

    1. My hand writing has gotten even worse, and my memory problem slows my hand as I forget how to spell some words. I have to try to slow down enough to write legibly, because I can’t read my own writing at all any more. lol What else can I do but keep trying. 🙂

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