It’s the new year and I am wondering about my plans for the year ahead. there are things I would like to be able to do with the children, places to go and things to see. One of the places is lovely, but has gravel paths. Last time we went I used my shove-it wheelchair as a zimmer frame and managed to walk quite a bit and sit still occasionally. There was no way the wheelchair could cope with the paths.
I do have a scooter which gets me to Mass and which the men can load into the trailer for family trips out. But the scooter needs the trailer and a strong man and to be honest is can be pretty painful to use on rough ground.
The shove-it is becoming impossible to use as my arms (particularly my right one) simply can’t wheel it these days, so I have to be pushed. Not a great way to maintain independence.
So for some months now I have been considering a power chair. It is a difficult decision on a number of levels. The first obstacle is me, having to get my head around needing one and feeling like this is a step down the road of disability rather than up towards being less disabled. But then I think I have to be realistic and face facts – I am more disabled than I was before the flare.
The next question is cost – do I hire or buy and which chair will allow me the freedom to be out with the children without having to be “cared” for?
Going out in the shove it requires someone to push me. Now in museums or flat spaces this isn’t such a problem, but out and about it’s pretty tough on Iona and I am sorry to admit that I still struggle with needing to be pushed. I want to feel a bit more independant.
The next question is do I hire or buy? I would rather hire with a view to buying so I can use the chair and see if it is really the right thing. There are so many different power chairs out there and the prices vary just as hugely. I like the look of the Jazzy and think it will be robust enough to deal with home education days out. I don’t think it’s very car friendly though, but then perhaps I could get it on a bus. Not sure. These are the things I need to try out.
Hiring the mid range type chairs is expensive, but I think more sensible than parting with something from £1k to £2k in one go only to find the thing isn’t right in some way.
The other question is would it replace the scooter or the shove it? Decisions decisions. I think it’s something I want to get on with though while I can still claim Disability Living Allowance. Questions are being raised as to how long that will last with the cut backs.
Hospital appoitment tomorrow with a doctor who is apparently a specialist in ME (which in the UK covers ME CFS and FM). As far as I am concerned this is the last one. If a specialist in the actual disease can’t spend more than three minutes and has no ideas I give up. After the cardio appt I had decided not to go back, but to just try and manage. We’ll see, but at this point I have had more than enough of doctors. It is exhausting going to hospital appoitments and as the appoitments are so short – about five minutes at most – and nothing gets done it doesn’t seem worth the bother. Must admit the doc at the Hypertension Clinic was good though. She almost restored my very battered faith.
If there is one thing this Government could do to help the quality of patient care it would be to have a bonfire of the tick boxes.