Getting help

We toodle down to our local village pub.

Among our friends is a disabled lady who is going through a bad patch at the moment. Her sense of balance is very poor & she’s lost much of the musculature of her legs, with the result she regularly falls. She’s getting increasingly frightened of those falls.

Her partner, & carer, was in the pub yesterday. I was relieved to hear he had taken in my suggestion when we last saw him last week, that they should get onto the council for some help. That very morning an OT (occupational therapist) had been round to assess her & her needs. Hopefully something will be done to help her, & him.

Part of the problem is their home is a listed property. This means they are not allowed to have grab rails or a ramp to help her negotiate the doorstep & get in and out of her home. It would spoil the historic authenticity of the building. I can’t help thinking I would move. She desperately needs a bungalow or flat, so she doesn’t have to tackle stairs & she can have adaptions made to suit her needs. She, however, loves her house, & the character & eccentricity that comes with a 17^th century house, & wants to stay. So this last week she’s never been upstairs to go to bed (she’s using the couch in the lounge) or the bathroom (bedpans & strip wash at the kitchen sink).

The OT has suggested she should have a wheelchair which they would organise for her, free on the NHS. She’s reluctant to do so. She feels it would be giving in to her illness. I assured her partner that a wheelchair should be regarded as a liberation, not a confinement. Without mine my life would be infinitely poorer – no holidays, little social life. By all means walk as much as you can for as long as you can, but any longer distances use the chair & get on with life. Our friend has been given a static bike which her partner encourages her to use to maintain some muscle in her legs – he has to stand nearby to prop her up if necessary when her balance goes.

I hope the few changes that are being offered to them will help make their life easier. And with disability making life easy is essential. You have enough problems as a result of your medical condition without adding to them by not using aids, claiming benefits etc. you’re entitled to & which can make life so much easier, more satisfying & worthwhile.

Dilemmas of disability

The rain is back. It didn't stay away for long.

My mind is still going over the question of the problems & barriers that come with disability. Over the days of pondering I'm coming to the conclusion that at least some of the problems are related to lack of self-confidence in the disabled person himself.

Undoubtedly this is symptomatic of some mental health problems. Fears, often quite irrational, take over. I know when I am in a bad state I get very anxious about being in company as I dread making a fool of myself by bursting into tears for no obvious reason & everyone fussing around me. I hate being the centre of interest in that way & yet I don't feel I can control the tear ducts at such a time.

Many people I have spoken to are anxious about venturing out in a wheelchair or with a walking stick. They feel conspicuous, dread that they will be pitied, be regarded as an eyesore, be somehow a lesser being. And yet the reality is that few people even notice.

I equally suspect people who lose their sight probably can manage to get around, especially in familiar surroundings, yet are nervous to try to do so without someone to encourage, support & guide them. 

There is also a proportion of the disabled population which can't, or won't, learn. This may be the result of dementia, for example. It may be they like being fussed over. They may just find it easier that way.

Whatever the reason, I don't see why those who do their physiotherapy exercises thoroughly, learn how to use aids, learn to lip-read, keep going through the pain involved in so doing, should be penalised for their determination, courage & overpowering need for independence. To me that just seems unfair & leaves you wondering why you should bother.

Still, all of this is going to be put to one side as I turn my attention to more pressing matters such as sorting out some holiday insurance for our trip to Cyprus, & some overnight accommodation & parking at Manchester airport. 

We're even beginning to think the holiday might be fun now it's becoming more of a reality!

A symbol of liberation

The Fox came back from his Carers' course yesterday. Apparently, at one point, he was asked whether I was permanently confined to a wheelchair. Now this is a phrasing that really gets to me, as he well knows. I am not, & never have been "confined" be a wheelchair. For me, a wheelchair is a source of liberation. Without it, I would never go out. I would never have visited so much of the world - no trips to France, Australia, Canada, Italy, Netherlands, not even to London, Harrogate or Edinburgh in Britain. I would never get to church, the Pub, the shops, the surgery, the dentist, optician etc. I would never have met so many people who have become my friends & given me so much love & support.

I remember well the visit which decided me a wheelchair was now a necessity. We visited the gardens at Grayrigg, in Cumbria. The garden is well laid out with loads of benches scattered around. I must have sat gratefully on every one of the seats. It became an endurance test as I hobbled from one seat to the next. On the way home, we stopped at a nearby pub for a bit of refreshment. By then I was in so much pain it had spoilt the whole visit. What is more, the pain continued at that high pitch for a couple of weeks after. Never again I thought. Next time I saw the GP I asked about a wheelchair, & have never regretted it.

When the Social Worker came the other week to assess us for some respite vouchers, she was surprised, & pleased, to hear that I not only have a wheelchair, but I regularly go out in it. So many of her clients are so ashamed of the wheelchair, feel so horribly embarrassed, that they won't go out in it & use it except for essential medical trips. Maybe it's just that I was still in my late 30s/early 40s when I first got a wheelchair, too young to spend the rest of my life shut up inside or in such intense pain.

The Fox pointed all this out to the assembled group.

So here's to the wheelchair, a symbol of liberation.

Paeon to a simpler life

Once upon a time it was possible just to pop down to the railway station, buy a ticket & be away. Life seems so much simpler in those pre-privatisation times. Now I feel bombarded by a whole array of options.

I accept part of the difficulty arises from me using a wheelchair. This means I will have to notify the train company that we will need assistance at the stations. The Fox seems to think we will only need a small overnight bag so he'll be able to push, but I can't help thinking we may need something more than that. Usually when we go away for a couple of nights we do only take a small overnight bag. And a carrier bag with sandals & books, & a bed cradle, &.... Everything will have to go in this one bag to London. What is more, we're staying in a rather posh hotel where we may feel a bit more comfortable looking a bit smarter in the evening rather than being in our scruff all day long, especially if we were to decide to go the whole hog & eat in the restaurant one evening.

Then comes the question of ticket. There seems to be only one direct provider of trains on the route we want, Virgin Rail. At least that much is easy.

But, do we turn up on the day & get 50% off the full price as I am a wheelchair user? Or do I buy a disabled railcard at £18, which would get us a third off even the cheapest tickets? Would I be saving the £18? Admittedly the railcard would be valid for all trips within 12 months, but would we want to travel by train again? This is the first time I will have got on a train for at least 20 years. The reality of train travel with a wheelchair may turn out to be more difficult than we're told. It may be as bad as we have feared all these years, despite the introduction of anti-discrimination laws.

Certainly I can see the advantage of getting advance tickets. That way the Fox can ensure getting a seat. A friend recently came back from holiday & ended up standing all the way from Gatwick to Manchester, not an appealing proposition for the Fox.

On top of which, if I do get a railcard, advance tickets are cheaper.

Oh why do things have to be so complicated? I tell myself it's known as progress. In theory it should mean we can travel cheaper. After all we're not limited to times as to when we go, but it does add complexity.