Forgotten but not gone, yet

I mentioned a couple of weeks ago that I was having problems pushing my wheelchair. My grip in my left hand has been weak ever since my arm died and returned, and using my chair, was taking tremendous effort. I ordered some tiny self-adhesive strips of clear rubberised type plastic, that have a serrated upper surface. Their true intention is to be stuck on to the arms of coathangers, so that when you hang a piece of clothing on them, they don’t slip off, but I was sure that they would work for my purpose. They arrived the other day and I set about attaching them, which was actually a lot easier than I expected. My dexterity got in the way of taking them off the sheets they arrived on, but not in attaching them. I sat on the settee feeling rather smug with my results, that was until I sat on my chair. Somehow, I had attached them to the wrong push wheel. They were under my right hand, not my left. I felt so stupid, but I am used to doing things like that, so I hung my head and pushed myself towards the kitchen. I hadn’t actually made it out of the living room when I stopped and did this sort of mental check, that they really were on the wrong side. I was stunned, I was finding moving my chair so much easier, yet they were truly there, under my good hand. It appears that my good hand isn’t actually as good as I thought. Somewhere along the line, I have lost the grip in both of them. Life is like that, well, at least, mine is. I have now added the strips to the other wheel and it is honestly like having a new chair.

Clearly, the strips I have attached, don’t have a strong enough adhesive that would hold them in place for outside use, but if they were attached with superglue, I’m sure they would do the job. It leaves me with a question, one that has been long with me, why don’t they make the inside of the push wheel with a soft cushioned rubber attached, so that anyone can grip it. Actually, I know the answer to that one, it would mean that a chair would cost more. The answer I know without a doubt that I would get from the NHS for my personal problems, is, that I should wear gloves. Sounds simple I know, but it isn’t. For a start, gloves make your hands sweat, they also would have to be taken on and off continually, and with my dexterity, would just be a constant annoyance. Decisions on design of aids for the disabled should be made by the users, not the makers or suppliers. In all honesty, would you put gloves on every time you wanted to go the loo or kitchen, then take them off once there, and put them on again to return? If you answered yes, well I know you wouldn’t. Even if they helped, without a doubt, they would sit unused, more than used. It’s human nature, we’re lazy, we want things done in a fashion that makes our lives easier, not harder.

It appears that my extremities are determined to desert me. The podiatrist has just been to see me this morning, and she was shocked that I hadn’t phoned her to come out sooner. Apparently, I had seven points where my nails were cutting deeply into my skin, I hadn’t felt a thing. My feet were deformed at birth, so all my toes other than my big toe are permanently curled, some worse than others. Having said that, four of the points were on my big toes. Either side of both nails were deeply embedded into the skin. This was without a doubt the longest that she had ever been in my house, it took ages for her to undo the damage. Totally honestly, I had felt nothing until she started slicing into my skin. I thought that the fact that I hadn’t been in pain, was a sign that Adam now drying my feet for me, and putting on some cream, was making a difference. It hadn’t occurred to me that the reason I had been pain-free, was actually because the feeling is almost totally gone. When I did feel her, was when she was pushing some tool that looked as though it belonged in a dentist surgery, deep into the skin on the side of one big toe. Despite her pointing out where the points were, I could only feel three of them, two of them, was mild recognition, the rest are dead.

When you find yourself immobile, the importance of our feet dwindles. They become just something that are attached to the bottom of our legs. Throughout my entire life, I have had an issue with ingrowing nails, or nails that bit their way into their neighbouring toes. So much so, that I didn’t really think anything of it, from childhood on, having painful feet was normal. As I aged, well the problems were compounded by the same desire that most women have, beautiful shoes, I freely admit, that I made them worse, but that is as normal as admitting that I’m human. I think it was somewhere around the day that I knew my stilettoes were being put away for the last time, that I stopped caring about my feet. I encased them in soft black suede knee high boots, both summer and winter, then I forgot them. The less I cared, the worse they got, but I could deal with them, then suddenly, I couldn’t. I couldn’t bend over, or bring my foot up to sit on my thigh, I could do nothing of any good for them. Adam tried, but when I called for the help of the podiatrist, he was told to stop trying to cut them. My feet are now dying, which brings up an array of issues, as if I can’t feel them, then I don’t know how injured they are. If an infection is sitting as deeply in my skin as the nails are, or if worse still, that infection is spreading. My feet are now not just useless but they are now a danger zone.

Her concerns didn’t stop at my feet, she went on to talk about my legs as well. Even she could see what I had spotted the other day when I was in the shower, I am overloaded with fluid. Not walking is causing it to pool which isn’t good. Luckily, I already have Frusemide in the house and by chance, I had taken a dose this morning. I can’t sit with my feet up any longer, it simply isn’t physically possible. The muscles are tightening and that stretched out in front of me position, is something I can feel the pain from. All I can do is wear elasticated socks, and keep taking the medicine. It isn’t quite a full five months since I brought my wheelchair out of the cupboard and gave up trying to walk. Five months and my lower half has given up the ghost. I can’t help wondering what they will be like, in another five.


Please read my blog from 2 years ago today – 23/03/2014 – Where is my body?

I used to think that it would be impossible for me to live past the age of 20, people of that age seemed so old and so useless that how could I ever land up being like them, mind you I was only about 13 at the time. I know from talking to others over the years that almost everyone has that feeling, not just when they are 13, but on through their lives adjusting their maximum age upwards, as they pass their last horrific age. There seems to be something inborn in us that needs to put a limit to our lives for whatever reasons we have at the time, but mostly because it is our view of being old, of not having the verve and excitement for life that we believe ourselves to have, we just can’t see ourselves as anything less than we are at that moment. You would think…..





15 thoughts on “Forgotten but not gone, yet

  1. Great that you have managed to make your chair more usable! You can get a sort of silicone stuff you can paint over the metal push wheels. Circus people use it on Chinese Pole – a pole fixed top and bottom that they climb up and do various tricks on. I will facebook some of my circus friends to ask where to get it. It takes a couple of hours or so to dry as I remember.

    Liked by 1 person

    • Thank you. All too often, all of us with disabilities spend much of our lives trying to find solutions, for what is supposed to be already an aid to our lives. Although your idea sounds great, there is a problem with it. My wheelchair doesn’t belong to me, but to the NHS. When it arrived, I had to sign a document that said that I wouldn’t customise or alter it in any way. That’s why I went for the strips, they are easily removed without anything I expect than a sticky film that can be washed off. Although the silicone paint you suggest sounds like the total solution for others, the NHS barrier must be remembered, by a rather large number of us.

      If you find the name, then please add it to the comment stream as it may be useful to many. Thank you for your thoughtfulness (((Hugs)))

      Liked by 1 person

      • This stuff can be pealed off or cut off with a knife. When used on circus stuff people need to do that when it needs redoing which is quite often when poles get slung on trucks without people paying too much attention to what they are lying on etc or at training schools where they get really heavy use. So the NHS bit shouldn’t be a problem.

        Now I wonder who I should contact in the NHS to suggest they do this as standard to all their chairs?………

        Liked by 1 person

      • That I can’t answer. Especially these days when every region is separate from the next. If it is as good as you say, I’d sort a deal out with the company who makes it first πŸ˜‰


  2. I have a friend with MS and she is starting to have trouble walking. She rang me yesterday in tears. In pain with her back. I felt so helpless. You have so much courage to live with your illness. Glad you got your wheel chair sorted. My hubby to be’s Mom is wheel chair bound. She has had MS for many many years and has a lift in her home to help her to her room and a dog helper called Una – x

    Liked by 1 person

    • It sounds as though your Mum-in-law has things sorted. It sounds to me as though your friend would also benefit from acquiring a wheelchair. I along with most fought against it, but I so wish I had given in sooner. It is a life changing tool and one I recommend to everyone. πŸ˜€


  3. I’m happy you figured out a way to use your chair better. Happier your podiatrist came to see you! You really don’t need an infection on top of what the MS is doing!


      • I am mentally. Physically I’m still in a great deal of pain. My neck all the way and including my right arm – hand. I have things to put in my diary/blog but am right handed…😒 thank God for ph ability to anticipate words..
        Take care of you the best you can, we need you, your wisdom, caring and humor…πŸ˜‡

        Liked by 1 person

  4. I’ve always thought that petite people should work in Petite store and larger sized in Larger clothing stores. In this way, they have real interest in the merchandise. Goes with your theory of having med equipment created by patients.

    Liked by 2 people

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