'I dropped a hammer on my foot. I said, Ouch, I bet that hurt'.
A sometime light hearted rant about life with spinal injury. The Glamour of Family, Friends, the NHS, Wheelchairs, adaptive equipment and the weather is all here on KBO!
Well the Rellies have been and gone. they came, they stayed we entertained and now we are collapsed in a heap. Always the way huh? Worn out from cleaning before they even get here, knackered from being the all singing all dancing hostess with undoubtedly the mostest and a huge sigh of relief as you wave them goodbye.
I'm jesting somewhat, as I do like to have people come and see what we have to offer. A hazard of living here is we don't see anyone for months on end and then suddenly a glut of visitors. I do like entertaining mostly though, it gives me a chance to cook and drink lots of red wine!!
The life that I have is all that I have, and at the moment that's just how I feel. I feel I have nothing, I feel I am nothing, just lying in the gutter with no where to go. At times like this everyone is so quick to point out all the things I do have and I know I'm lucky not to be an HIV positive orphan slowly dying in Darfur but it doesn'tmake it any easier. I live in a western society where life's expectations are high and I have failed to meet so many of them, I don't feel like I'mworth a jot. Oh what do you do? How many bloody times am I asked that? Usually I just say 'oh nothing much these days, I'm professionally disabled' and that shuts the person up sharpish, but its just a front on my part. Such questions are like a slow form of mental torture, answer enough times that you don't do anything and you believe it. I can also see how people become very disinterested once they know you don't work. Society seems to judge you by what you earn and what you do and nothing else. So I don't feel very valued by society.
Today I feel like my life has been one hard slog from start to finish. All my life Ive been going against the tide, and every timeIve been slapped down, Ive just bounced up so it can happen again. Tonight I'm tired, tonight I think I might just keep lying down and not bother to get back up. maybe I can just let the world go on around me. Id like some respite from everything in my life,.. to be magicked away for a week somewhere, to be pampered and cared for and cossetted, not to start that long uphill haul again. It doesn't seem worth it.
I never ever realised just how strange the human race could be until I became disabled, and then all of humanity pops up from nowhere. There is a group of people in particular known within disabled circles as devotees. Basically these are people who are attracted to you because of your disability and/or the bits and pieces that go with it, eg a wheelchair. It happens on many levels, in fact I might even know some devotees, I'm not sure, but on a very straightforward level I don't suppose its that bad. After all I tend to go for men with glasses.....having said that I don't actively seek them out! The trouble is a lot of this tends to go off into the world of fetishism and perversion. Ebay does a roaring trade in medical appliances for instance, and I know for a fact they are not usually sold to people who need them. Do a search on the web and you will come up with some very strange and worrying sites. Finally take a look at YouTube if you don't believe me. There are a lot of videos of disabled people, many have been taken secretly and are at best voyeuristic and others are just downright perverted and exploitative.
So there have been times recently when I have seriously questioned someones motive for being nice to me, especially the opposite sex. Its likely I'm being paranoid but the trouble is you can never tell what people do behind closed doors, and its often those you would never suspect. Its just sad that the actions of a few rather warped individuals means that a lot of us start to become suspicious.
I feel quite low at the moment, sad and on my own. I don't feel as if I have anything much to look forward to. I don't mean in the sense of going on holiday but the long days head are unfilled, lonely and at the same time too busy. I spend my life driving the whole family from A to B while I'mjust sat going nowhere. I feel that in every sense of the word. I lack a purpose or a focus in my life. I lack a reason to get up in the morning. Recently Ive just wanted to stay in bed, listen to the radio and do very little. I want to be everywhere and yet I feel as if I want to do nothing. I feel too much is asked of me but nothing is expected from me by anyone. I feel I am all things to all people and nothing much to anyone. I never get to speak to anyone and yet I long for my own company. Its a conundrum indeed.
Well the end of the year is coming along fast and Christmas is coming up on the rails. Now I'm no humbug but for obvious reasons we don't really do Christmas, and over the last few years we have stopped sending out cards to friends to wish them festive greetings. It seems a bit pointless and a huge waste of money but of course if you are lucky you might still get an e mail from me! Each year instead we nominate a charity and donate the money we would have spent on cards, stamps and other things instead. This year its the Smile Train. I was thinking I wanted my money to make a difference. Its not a huge amount but I didn't want it to be lost in the funding of a big charity, donate to a smaller one and they really have the benefit. The Smile Train does wonderful work across the developing world in repairing cleft palates in children, and alsoteaching and providing the equipment for communities to continue the work after they have left. We take it for granted here as most of the time its a very straightforward procedure, that takes about 45 minutes. Without this surgery these children have no hope, no opportunity and no prospect in their lives. They are outcasts and shunned by their societies, many are seen as being cursed. And yet its so simple to repair.
In Judaism the greatest thing you can do is save a life. Although this isn't physically saving someones life as such I believe it is the same principle. These children would be destined for a life of poverty, sickness, hardship and loneliness because of their appearance, most would die premature deaths. I hope my donation can save a child from that. Here's the promotional film, take 5 minutes to watch it, and should you feel so inclined this year, help support their work.
And remember you wont be getting a card from me this year OK?
Charity sees the need not the cause -German proverb
I am irritated by the Jewish community. I'm allowed to say that becauseI'm Jewish OK? Anyway you may know that the Jewish community is hugely successful at raising money for great causes, giving to individuals and helping those in genuine difficulties, but what annoys me a bit is no one has ever asked us if we needed anything. It seems charity only happens if you live in London or Manchester, otherwise you are ignored and forgotten. Its not like we are not active members of the community, we are but not once has anyone ever asked myself or my husband if we are OK? Is there any help we need? Do we require any financial assistance? So when I see these hugely successful campaigns in the JC every week I feel a tad upset. Let me say right now that I do not want or require money, however what gripes me is no one has ever bothered to ask. Probably because we look well off, educated and middle class people think we couldn't possibly ever need anything. Well let me tell you being disabled is bloody expensive, try it for a few months and you will soon realise that your income drains away on stuff you would have never wanted thought about or needed before. It would just have been a true kindness if someone had thought to ask us but no one did. Isn't that what community is for after all or are we all islands unto ourselves these days?
Its a huge misconception that when you are disabled, especially if you become disabled thatthey will look after you. They will supply you with everything you need in life, they will be provide you with the care and support you need, assumingthey cant do anything for you medically. They must have a huge pot of money becausethey are everywhere, they give a large amounts to the needy and basically we couldn't manage without themso we are told in the newspapers.
Only one problem I don't know who they are or if they exist. You may be surprised to know that once I became disabled there wasn't this huge benevolent hand coming down from on high offering large cheques and wonderful bits of equipment. Theydidn't pay for me to go on some sort of special rehab course, and they didn't offer me a trip to China for stem cell treatment. They didn'teven pay for my chair. Apart from wheelchair services sort of providing for some of my needs and lots of OT people offering me strange bits of equipment, they have been no where to be seen.
So who are they? Where are they? If you are one of them, step forward. Id like to know.
I seem to spend a disproportionate amount of time on things to do with bladder and bowel function. Its the real bain of my life, it gets no better and I really wish it would just all go away. Ive been doing a bit of an ostrich impression about my bladder recently, not wantting to have to deal with the fact that its all going horribly wrong. Despite my best efforts the current regime isn't working and hasn't for over a year now. So last week I had an appointment with my urologist. I like her but she is way scary which is sort of good as she's blunt and tells it like it is, but also manages to be humorous too and I think this is probably a good sign in a doctor. When you are dealing with the sensitive subject of incontinence as she is, I'm sure humour helps at times.
So what to do, what to do? There is no ideal solution, the only ideal would be to wake up one morning and miraculously find that it all works again. Miraculous indeed. But as neither of us expect that then we need to go on to Plan B. So first of all its possible that my bladder is sitting at a bit of an angle, which makesDIYcatheterisation a bit more difficult and less successful. So Ive got to go for a scan so they can take a look. Secondly we need to try and kick these UTIs out once and for all. Ive got absolutly wonderful cultures floating around! So finally we have decided to go for a long term indwelling catheter with a long term course of antibiotics. This isn't ideal, but then we are running out of options really, so I'm willing to give it a go. Funny thing is, if you had said this to me last year I would have been adamantthatOh No I wasn't going todo this, not for me thank you. now though I'm worn down from UTIs so Ive got to the point whereby I'm just willing to give it a go.
Its been a busy old week and unlike me I havent posted much have I? Time where doesn it go? Ive just been racing around here and there and using too much energy. Im tired out and frankly the bags under my eyes look more like trunks. I could do with a rest. Think Ive got 2 hopes there.... Bob Hope and No Hope.
For RoshHashanah we went over to Somerset to see my Father in lawspecifically and generally try to catch up with a few friends while we were there. It was an awkward choice to be truthful, should we just let it pass, or try to mark it as we normally would at home. We decided eventually on the latter course of action, even though, well in truth Id have rather done something else.
To start with, once you spend most of your life in a wheelchair, you are never anonymous. You cant just slip in somewhere and hover round the back. No you are there for all to see with what amounts to a huge flashing light on the top of your head. Thats how I feel anyway, and despite my laid back appearance, inside my stomach is often in a thousand knots. Its not easy seeing people we used to know very well, and as we left the city quite quickly there had not been time for the Goodbyes. So people had sort of heard about me, a few had seen me a couple of years ago now but these things get lost in a collective memory, so to many I was a huge shock. I had paved the way by sending a few e mails just to say and Oh by the way...umm... I need wheelchair access, so everyone knew I was coming,but frankly it was like The Arrival of the Queen of Sheba! It wasn't easy, lots of people came to see us and you could so easily see the face of many, people don't conceal their thoughts well I can tell you. How lovely to see you, eyes flick down, eyebrows arch, they register the chair and start to shift uncomfortably. Its times like this I wish people would just come out with it... you know, OMG what happened to you? It would be so much easier. I'm never sure if I should just launch into an explanation or let it go. I was rescued by a couple of people who deserve a mention if ever anyone did. Firstly there was Max who spent ages in conversation, had the guts to ask me what was wrong and then made a very appropriate response. Then Michael who came and talked to me especially as he could see I was totally overwhelmed by the crowd and pulled up a chair to do so. Very thoughtful as its horrible trying to have a conversation looking up at people all the time. I was patronised by a few but the less said the better.
No one ever says its easy to return, I'm not sure it was a good idea, but I suppose Im glad I did, they are all good people and its nice to be reacquainted with good times.
Tynedale District Council deserve a great bit rocket up their arses, or more specifically a bomb needs to fall from upon high onto the heads of the planning and building control departments, or perhaps the wrath of G-d will do. Now, I sound a bit cross here and actually I am. An ongoing saga is the story of Ali Johnson who is quadriplegic and lives about 5 miles from me. Tynedale have refused permission time and time again for him to build a home on his family'sfarm that is suitable to his needs. Now they have done the same thing to Frances Rogers who has MS and wants to build a house to be near her mum in Melkridge which is a village directly opposite me on the other side of the river. Apparentlythere is a total ban on building in the village, but nobody knew this before.
Anyway I am sympathetic to thefact that we live on or near National Park and AONB, and I know we need strict guidelines but these people want to build low impact dwellings suitable for their needs. We are not talking about 3 story town houses or multi occupancy flats. Guidelines should be just that and not set in stone. But it seems that Tynedale is unable to think or apply any thought to these applications. There are always exceptional circumstances, just what is wrong with the thinking of these people? They should be working with both Ali and Susan in order to make their dreams come true not rejecting applications all the time. A suitable home is indeed a dream to anyone with a special need. Ive thought about trying to improve access to my own property but getting planning permission on a Grade 2 listed building is so unlikely I just cant be bothered going through hassle only to be turned down. So all I can say is that I hope that these planners never find themselves in such a needy situation. It can happen to anyone and don't forget it could happen to anyone at Tynedale.
Im pleased to support the Stepnow Campaign. Read the blurb, see the film and then maybe stop by the site. Its worthwhile, not for me but for all those who will follow me in the future. It could be you so lets Step now!.....this is taken from the http://www.stepnow.org/ website......
"What is Spinal Cord Injury?
The spinal cord is the major bundle of nerves that carries nerve impulses to and from the brain to the rest of the body. The brain and the spinal cord constitute the Central Nervous System. A spinal cord injury (SCI) can be a traumatic blow to the spine that fractures or dislocates vertebrae. The damage begins at the moment of injury when displaced bone fragments, disc material, or ligaments bruise or tear into spinal cord tissue. Spinal cord injury can also be a result from diseases or illnesses such as Polio, Transverse Myelitis, Multiple Sclerosis, AVM’s, Spina Bifida, Friedreich’s Ataxia, etc. Most injuries to the spinal cord don’t completely sever it. Instead, an injury is more likely to cause fractures and compression of the vertebrae, which then crush and destroy the axons, extensions of nerve cells that carry signals up and down the spinal cord between the brain and the rest of the body. An injury to the spinal cord can damage a few, many, or almost all of these axons. Some injuries will allow almost complete recovery. Others will result in complete paralysis below the level of impact. But paralysis, along with the associated problems of bowel/bladder control, sexual function, pressure sores & skin care, pain and spasms, is very complex and no two cases appear to be the same. This has made a cure a very difficult and daunting prospect. However, now more than ever before, there is reason to hope that a cure is in fact imminent – that reason for hope is stem cell therapy and regenerative medicine.
What are Stem Cells?
Stem cells are one of the most fascinating areas of biology today. But like many expanding fields of scientific inquiry, research on stem cells raises scientific questions as rapidly as it generates new discoveries. Stem cells have the remarkable potential to develop into many different cell types in the body. Serving as a sort of repair system for the body, they can theoretically divide without limit to replenish other cells as long as the person or animal is still alive. When a stem cell divides, each new cell has the potential to either remain a stem cell or to become another type of cell with a more specialized function, such as a muscle cell, a red blood cell, or a brain cell. As a result, they have the potential to provide cures or new treatments not only for spinal injuries but also for many diseases and injuries, including cancer, diabetes, multiple sclerosis, Parkinson’s, HIV/AIDS, osteoporosis and Alzheimer’s. Embryonic stem cells in particular have the promise of being the key factor in bringing about a cure for spinal cord injuries. On the strength of this promise we come together to fight for this cure."
Ok I know its a bit sad but Ive signed up to MySpace. Really its a bit of an exercise in how many 'friends' I can get without doing anything to get them. I find this friend thing all a bit superficial, I mean its nice if people want to make contact and discuss life, but MySpace just tends to scrape the surface if you are lucky. Anyway add me to your friends as Im a bit pathetic and am a bit of a Jonny-no-mates at the moment!!!
Some things are unspoken. Despite the fact that we live in 2007 and live in a generally free and open society, there are some things that people will hardly discuss or if they do it's with the whisper of shame. What I'm talking about here is specifically incontinence but in broader terms any issue surrounding the bladder in particular. A conservative estimate puts it that 10% of the population have problems, this is higher in women and a bit lower in men, and the causes range from neurological, age related and just unknown, yet no one likes to talk about it. Now I'm not particularly advocating that we all wear our heart on our sleeves, but its no great shame to admit that all isn't well and seek appropriate treatment is it,.....or is it? Seems that many many people are unable to see a doctor in the first instance and struggle on for years and years until something forces the issue, which is really sad because often it can be alleviated relatively easily.
I generally suffer huge over continence. This basically means that the full message doesn't get from my bladder to my brain, so I get fuller and fuller and fuller. I have a HUGE bladder capacity, at a guess I think it must easily be the size of a partyballoon. Amazingly I can go forever without knowing I need to pee, which sometimes can be a big advantage. But the downside to this means that if you go too long, it all backs up into your kidney causing infection, damage and eventually kidney failure. So you can see that's not great. Just to throw a few extras into the pot, over the last year Ive had increasing numbers of incidents of incontinence whichfrankly you can just live without. This ranges from being mildly damp to being very wet. You know what, this whole thing isnt pleasant at all. My biggest fear is becoming one smelly individual. I'm not but I could be. Of course the other fear is that I pee myself very publicly. Again this hasn'thappened but it could. Let me tell you it knocks your confidence. On the one hand I appear confident, but on the other it makes me nervous. I spend a lot of time in loos just checking everything is OK. So it seems I have a bit of a dyssynergic bladder. Not all the time, but enough just to make life uncertain. Add a persistent and unpleasant infection and you have a mix that can make my life quite stressful. Know what.... somethings got to give here and soon.
