I have been incredibly fortunate to have been allocated some wonderfully personable, friendly, honest and knowledgeable occupational therapists so far. My first one came to visit me when I was still stuck upstairs in our old house. I was in a wooden frame double bed, in a cramped upstairs bedroom and unable to safely manage the stairs or a trip to the adjacent family bathroom. I remember the day she came first. There was her and another occupational therapist (OT) with her. They asked me lots of questions about my daily life, personal care, mobility and health. They also wanted to see how I got into and out of bed, how I was trying to manage the stairs and then see what, if anything, they could advise to help me.
By the time of that first meeting we had already purchased the walking sticks and nordic walking poles that were no longer any good, two rollators (one for outside and one for upstairs) which were barely usable any more as I was already losing the use of my legs, a bed rail, a bath bench seat and grab rails at the top of the stairs and around the front door.
My hope was that they would be able to help me manage the stairs and be more mobile again.
Physiotherapy was discussed, but I dismissed it for a few reasons:
1. I had tried physiotherapy for a previous knee injury and for a shoulder injury very recently and it had made things worse in my back and neck. There was no way I was going back again in more widespread pain and risk it getting worse again.
2. Having a diagnosis of chronic fatigue syndrome/ME, having read the research and listened to the ME show podcasts where they interview and hold discussions with specialists, I knew that the post exertional fatigue I experience would mean physiotherapy would not actually be beneficial to me.
and finally, I had been getting increasing symptoms week by week and was barely managing to function inside the house, never mind get out to any appointments that would leave me stuck in bed for days afterwards.
They did also explain that I needed to seriously consider their recommendation to move my bedroom downstairs, so that if I had a fall at least it wouldn't mean falling all the way down the stairs. I pointed out the fallout of moving our bedroom downstairs, but they recommended it for my own safety. Since I had been half jokingly suggesting it for a while we went ahead and did so. It was just as well we did because my symptoms continued to worsen and I was falling more and more frequently, determined not to give in to using a wheelchair.
I had a perching stool on medical loan, a commode on loan and a folding ramp on loan for the back door so I could be pushed outside by my husband in a wheelchair. The perching stools seem to be designed to tip you off them during use, so it made a great storage table for my toiletries. The commode felt like admitting defeat and meant I had no privacy, no dignity and was a huge low point for me. The only plus was that I could go to the toilet safely. At the time that wasn't as high on my priorities as it perhaps should have been.
We were also told that they would be recommending we move house to an adapted home where I would be able to use a wetroom and get through the doors.
That wait seemed to take forever, in reality it was only a few months, but a few months of living in one room with no family lounge is a long time.
One day I was out in the front garden supervising my girls killing the weeds and the occupational therapist happened to drive past. She stopped to come and tell me how pleased she was for us that we had been found a possible new home. Then after that we heard from the housing team that there may be a house available that was suitable.
Long story short, after a lot of hard work by my friend and my husband, we were able to move into the adapted home and I re-referred myself to occupational therapy.
They very quickly had toilet rails installed and then I had to wait a couple of weeks for my allocated occupational therapist to come out to see me here. I was so pleased to see it was the lady who had been accompanying my initial OT. This meant she knew about me already, had a good idea of what I struggled with and could compare this home to our previous situation too. She sometimes calls with a second OT and they make me smile as they try to come up with inventive ways to help me.
Questions i have asked so far have included whether there is a device or magic invention they are aware of that can press the button on the window handle and lift the handle up at the same time in order for me to have a window open here (I can't reach a single one). Is there any special handle or device they know of hat will enable me to shave my legs? (I can't bend forward enough in the shower to do it without getting shaky and lifting my legs up means i can only reach part of them and it hurts my hips and back). Since I have been told before that the garden in accessible, would one of them like to try getting down the ramp in my wheelchair?and see if they can stay in it down the steep part? or if they can get themselves back up it in a wheelchair? (all declined, but agreed the ramp is far too steep to be safe).
One visit I was joking about a toilet I used on holiday in Turkey. it was a normal toilet but with a hose at the back, controlled by a tap next to the toilet plumbing. It then washed your bottom for you. Little did i know this would lead to toilet reps calling to see us with the OT, telling us all about toilets that wash you and dry you too. Apparently they have been around for around sixty years! Why don't we all have them as standard?
I am a realist. I am aware of budget cuts, the council's need to save money everywhere they possibly can and balancing this against the needs of people must be tough. However, there is the disabled facilities grant available which could mean we could apply for a basic toilet in the range that washes and dries you. I honestly thought I was being silly even joking about it!
There is even a device that you can put your feet on and then be moved around in a sitting position from bed to chair/wheelchair. Our electric adjustable bed and electric rise and recline chair are both too low to the ground for this to fit underneath (crazy when you consider they are all designed and manufactured for people with poor mobility), but there are other options that they are going to try too. So...watch this space.
I have also requested a referral to wheelchair services to see if they will assess me for a power chair. If they would then it would mean i can get to the toilet by myself in the nightime, and back again. That would be amazing.
So, #dragonsden people, #inventors and #prototype makers, see if you can come up with a handle that is safe and can be used by someone with poor hand control to shave their legs safely in the shower please. It needs to be possible to fix and replace supermarket disposable razors to in order to keep personal care costs down, be non slip and hygienic.
Also, a window opening device would be fantastic, and a grab stick that can reach things on top of cupboards or on shelves from underneath (so with a 90 degree angle on the pole somewhere and perhaps a mirror to help with vision too).
I look forward to seeing these in the future haha.
#dragonsden #inventions #inventors #ideas #dailylivingaid #disabledaid #care #occupationaltherapy #healthcare #gadgets #wheelchairlife #spoonie #chronicillness #chronicpain #chronicfatigue #chronicfatiguesyndrome #CFS #ME #howareyou #disabledparenting #tiredgirl #mentalhealth #windowlocks #toilet #fibrowarrior
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