This Change Is No Rest

31 May

It is mumbled in intelligent circles that change is as good as a rest, and usually when my BFF comes to stay or I am at my sisters for Christmas this can ring true. My muscles and logistical brain cells can take a break from having to struggle with movement.

However when my BFF came to stay for a couple of weeks at the beginning of April my brain and muscles decided they had had enough of the continual physical and mental struggle with just getting stood up. Usually I am lifted to my feet, with my dead body weight supported by BFF until I am balanced, then I can totter off to where I need to go. Being lifted takes all the physical strain and stresses off my joints, it only takes seconds to do, requires minimal concentration, which all equates to a rest.

Instead of it being restful, it highlighted in fluorescent neon with flashing lights and klaxons just how utterly exhausted I am when doing it by myself alone. Whether it was the eight, nine, ten attempts it takes every morning just to get up from sitting on the bed to standing, whether it was the physical exertion of standing from the toilet and the number of times it just doesn’t happen, whether it was constantly wondering and planning when I would next get up in order to get to the bathroom and/or then get to the kitchen to prepare food et cetera – it was all too much, I broke.

But I am completely out of my depth, I did not know who to contact, I did not know what the answer would be, I did not know how long it would take to be rectified, or even if my situation was rectifiable. Everything was completely overwhelming.

Muscular Dystrophy have regional care advisors however contacting one was not that straightforward as HQ did not have the details of the new incumbent who covers my area, fortunately friends in the right places knew the right person to ask and the RCA visited the next day. After a great deal of discussion, and tears on my part, she left intending to initiate an armful of referrals. That meant that I had to confess to family the severity of my struggles.

Professional peeps have been responding to these “urgent” referrals, but as is often the case they’re asking what help I want when I don’t know what I want, what is available or what will work. Social Services sent their directory, a glorified phone book, which isn’t offering straightforward answers, Wheelchair Services have lost me (I’ve had a manual chair for 18 years, but I only deal with their contracted maintenance people and never the office). Physio cannot offer any practical help because the nature of MD is debilitating rather than rehabilitation. Occupational Health was more positive but nothing can be set in place yet as it depends on actions by others.

So, a month later the result is ……. carry on struggling, failing, waiting.

What I need (am hoping for) is a small compact electric wheelchair that can rise to enable me to cook or simply reach the light switch, and can manage the tight turns and dimensions of my little hovel. If there isn’t one, then I will have to move, but to where I know not, nor how long it will take. I fear I am hanging too much hope on one thing.

I am grieving, grieving for the life I had, the struggle to keep the life I have, the hopes for a future life. All my hopes, skills, dreams have been quashed. The talking, admitting, confessing to the numerous professionals has not been a positive experience, trying to imagine working solutions and all these imposed changes will bring, it has rendered me deflated, defeated, despondent, ashamed and humiliated.

The NHS Wheelchair Services chap has visited with mixed results. The NHS is charged with providing a mobility solution, an indoor powered chair that might be used outdoors too. Many people need chairs with other actions, say to rise up to enable someone to reach a work surface to make a drink or meal, or to rise up to turn on/off a light switch, but these are not classed as ‘mobile’ but ‘social’ actions so they cannot provide any chair to me. But they still need me to take an indoor and an outdoor driving test (stop laughing). I can apply for a ‘personal wheelchair budget’ known as a voucher, where the NHS pay for part of a private purchase chair up to what they would have been charged (aka what a suit has decided is a reasonable minimal contribution). So I’ve to find my own solution, if it exists, if anything can be sourced closer than a county away.

The second problem is my small hovel. No one can tell me whether a chair can manage the tight turn into my bathroom through its narrow door, and no one can tell me what happens, how I am supposed to live, if I cannot get into the bathroom at all. No one can tell me a housing solution.

Now six weeks on, I just have to struggle on taking upwards of 45-minutes to have a wee. Speaking of which…..


Posted by on May 31, 2019 in Life


Tags: , , ,

12 responses to “This Change Is No Rest

  1. menhir1

    May 31, 2019 at 6:07 pm

    A care package doesn’t seem to have been mentioned. Surely you must be entitled one, but on request, no doubt. If the NHS does not provide for necessary ‘social actions’ another resource must be considered.

    Were you able to make contact with the regional MD society? If they could help you with advocacy it would be a step forward.

    Have you considered asking every shade of MP, whether you’d vote for them or not, to take up your cause?

    I am so sorry Anne-Marie. I hope my few thoughts are of use to you.

    Liked by 1 person

    • AnneMarie

      May 31, 2019 at 6:16 pm

      Care assessment referral waiting response.

      There is no joined up thinking. I need to move into a property better designed for wheelchair use, however that could take literally years. Nobody has had the lightbulb moment of “what do we do till then”, whether that relates to housing, equipment, carers, et cetera.


      • menhir1

        May 31, 2019 at 10:09 pm

        Joined up thinking is a strange luxury these days. Does sheltered/supported housing exist still?

        Liked by 1 person

      • AnneMarie

        May 31, 2019 at 10:12 pm

        I believe so, but getting in one takes hens teeth.


  2. snowbird

    May 31, 2019 at 6:32 pm

    Dear God! How I feel for you. I’m pretty shocked at the red tape and total lack of support. As a former social worker I would rate your situation a priority one and would be looking for a package of care, at least carers should be sent in to help out a few times a day, I’M amazed that they are just leaving you to struggle to stand and do anything when you are clearly vulnerable. I would certainly contact your MP. I hope something is sorted for you soon. Huge hugs, your courage is

    Liked by 1 person

    • AnneMarie

      May 31, 2019 at 6:38 pm

      Thank you for the link. I’ll reply more fully later.


  3. deacongill

    June 2, 2019 at 8:47 pm

    This is all so distressing. It strikes me that you could do with some mental and emotional support too, somebody who can visit you or whom you could phone, and who you can talk to. I do hope that something sensible will happen sooner than you fear. In my prayers.

    Liked by 1 person

    • AnneMarie

      June 2, 2019 at 8:51 pm

      That side of things is well covered, my BFF calls me every day on her way home and we chat for at least an hour, three times a week my sister is here for several hours as well.

      Changing the subject, have you heard anything from Bushka? I haven’t seen many blog posts from him.


      • deacongill

        June 3, 2019 at 9:27 am

        Oh, I’m relieved to hear that. We all need such people around us especially when the going gets tough. Bushka is on Facebook, but has said that he’s no longer posting, although he does read other people’s posts. He rarely comments. I think he took a decision to spend less time on social media, and do other things instead.

        Liked by 1 person

      • AnneMarie

        June 3, 2019 at 9:34 am

        Oh few, I suddenly got all cold and worried about him. Daft really, but online people do cross our minds off line too, lol. I might have to seek him out.

        I’m not really a talker about my woes, I find it a tad humiliating and demoralising, plus I get angry, talking about my feelings hasn’t yet managed to get me stood up any easier these past weeks, to my mind it just means that the issue cannot be escaped for a while in the company of others and becomes the topic reminding me that I have that problem, reminding me others know and that it is weighing on them too. If you get me. I guess I’m a practical minded type.


      • deacongill

        June 3, 2019 at 9:45 am

        Yes, I do know what you mean. It’s about our dignity. But then when people do show concern, as you say, somehow it brings that little bit of extra strength. Bushka’s real name is Elliott Allison: the page is here and if you scroll down you’ll find his explanation in a response to Jane Bailey, who is another longtime blog friend.

        Liked by 1 person


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: