And She Shall Rise …. (Hopefully)

27 Jan


Well that is the plan …. maybe.  As many regular readers may remember I have a muscle wasting disease called fascia-humeral-humeral Muscular Dystrophy, it’s slowly getting worse rendering me weaker so simple tasks become a complete nightmare, some impossible. Skills and abilities, hopes and dreams have been taken away bit by bit.

Last year I began experiencing serious issues getting stood up from my desk. Now my desk is important to me. It is my link to outside life, other than the practical chores like paying bills or shopping for groceries or gifts or writing letters and emails, it is also my coffee shop where I interact with the world through social media, forums and such. It is where I create, code, make web updates, edit photos, write book reviews and blog posts and where I listen to music as I work.  My mornings are usually spent at the desk dealing with business after that first cup of coffee.  That was the issue that made the problem, a problem, because I’d need a wee.  My ‘alternate’ route was to shuffle onto the dining chair, then scooch (technical term) across to the sofa, shift to the sofa, get up stood and trot off to the bathroom, sounds a palavar, it is when you are bursting!  So I stopped being at my desk as much or for as long, which stopped me listening to music, which stopped me spending as much time creating, which stopped me writing letters and emails to family and friends, which had me putting off jobs! projects! research etc.  I have my iPad but it’s not the same, there are things I need to do on my Mac at my desk.

It took a while to admit defeat, it took longer to try and seek an answer. I’m tired of investing hope to be disappointed, or struggling constantly for no reward.  Anyway, I sourced a company who sent their physiotherapist to come visit me and evaluate my situation.  Several hours later, after numerous getting ups to show my technique and what I hoped to achieve, he left and the next day sent me details and costs of a wizzy chair and desk.  I was hopefully, but also realistic that even when it all arrived it would take several attempts, many many failed attempts, to get stood up from my desk in a reasonably straightforward consistent manner, like I do from the bed, the loo and the sofa (the only other spots I can get up from). 

On Wednesday last week the desk, which can rise from knee height to standing working height and has preset buttons to automatically adjust to a height set to a particular millimetre, was built and installed with the new three draw unit beside it, the wizzy chair which rises up and down via a button touch, has wheelers that can be breaked, with arms that drop to be level with the seat, has a lockable swivel, as well as adjustable tilt, back rest, head rest, was wheeled in. I took a seat proudly……got comfy…..and then couldn’t get up. Okay, no prob, just need to get the feel, learn where the chair needs to be, learn and set the desk at just the right height and if not on the first go by the third it will be set. Erm, no. It ain’t happening, I ain’t progressing ….. it is annoying because I cannot sense what is going wrong, what needs to change to achieve the goal. Is it mental me expecting too much giving in too soon, menopause me with all sorts out of sorts, or MD me weakening have I left it too late.


Today I had my lunch at my desk, a list of got to get done jobs, played some favoured tunes to motivate and after a couple of hours tried getting up, couldn’t, so carried on getting more done, enjoying the fun of being at my desk. Then shuffled across to the sofa.

Maybe another day will work, who knows *shrug*


Posted by on January 27, 2018 in General, Life, Tech


Tags: , , , ,

11 responses to “And She Shall Rise …. (Hopefully)

  1. deacongill

    January 28, 2018 at 1:17 pm

    Oh no, this won’t do at all. Did they make sure you could use it before they left you?

    Liked by 1 person

    • AnneMarie

      January 28, 2018 at 3:11 pm

      TBH I really didn’t think I’d have this much trouble. When he was here with the various chairs to try I felt that I was almost there. If I say that my getting up stood process has five stages, when he was here during the assessment I was getting will into step four, just didn’t push to step five to avoid needlessly tiring. Since everything has been here I’m hardly getting to the end of step one 😦 But I will try again in a couple of days.

      Liked by 1 person

  2. menhir1

    January 28, 2018 at 10:59 pm

    I share Gill’s thoughts. Is it possible to get the company’s physiotherapist to return to complete your set up and use of the equipment, what signals to make, how and when etc? I am sure you will get there with your tenacity, but, a little more input with the reality would be more than desirable. Xxxx

    Liked by 1 person

    • AnneMarie

      January 28, 2018 at 11:06 pm

      It’s all to my technique, even the slightest wobble, the knee, elbow, shoulder not quite there, my margin for error is finite. I just hope I manage it. What this exercise has taught me is that electric lifting devices will not work for me, and that day when I’ll have to be in a wheelchair permanently is closer than any of us care to think about.


      • menhir1

        January 29, 2018 at 6:27 pm

        Nevertheless, Anne-Marie, a physiotherapist should work to an ethical code. Whatever your physical ability level, you ability should be provided for. If the equipment you have was advised on the basis of what you could do without it, there should be a method of helping you operate with it.

        I get fed up with the blame the operator game, or, shoot the messenger, (another favourite). Sorry, you are being sanguine and I am being grumpy and cross.


        Liked by 1 person

      • AnneMarie

        January 29, 2018 at 6:31 pm

        When he left after the assessment I had every faith my goal would be achievable.


  3. menhir1

    January 29, 2018 at 9:35 pm

    Was he part of a sales team or a community support service? Either way, there ought to be support services. xxx

    Liked by 1 person

    • AnneMarie

      January 29, 2018 at 9:49 pm

      Please do not feel that I may have been duped/pressured into buying the equipment, quite far from it. After the assessment, the try if we do this goes, the let me hold this at that height and try this goes, the five hours he was here discussing, watching, thinking, I felt within myself that I would manage to get up stood from seated. As I said elsewhere, I got through four stages of the five stage process during the assessment, with extra thought, umph and damnation I would have up-stood. Something (probably my doubting noggin) has now stumped me, or there is the plain unwanted truth that I am reaching the stage of deterioration where I can no longer do it, ever. Let’s see how tomorrow goes.



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