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Monthly Archives: June 2016

Who was it that decided that hatred and bitterness and back-stabbing and nastiness were ever OK?

Well, as far as I am concerned, they aren’t and I’ve had enough.

Since Friday last week both Social and mainstream media has been full of nothing but hatred and doom and gloom and narrow-mindedness and I can’t stand it any longer. I know that there are people who are really happy about the Referendum result, I know that there are people who are really unhappy about it but all this gloating and loathing and racism and bigotry is all wrong and very unhelpful. Just today I have seen videos of a racist rant from a young person being made towards an older black guy on a tram in Manchester and reports of a firebombing attack on an Asian wholesalers which destroyed a family’s livelihood in Walsall. Thankfully, in neither incident was anyone killed or seriously injured but this is not something that should ever be considered to be acceptable. And then there are all the men and women who are being told to pack up and go home. Forgive me but these people are home. They were born here, in many cases, their parents were born here, their children were born here, their jobs are here, their lives have been spent almost in their entirety in this country. What are they supposed to do, where are they supposed to go? This is their home, this is where they belong and they should not be harassed or hounded or intimidated. They should be able to continue with their lives in peace and security. Then there are the other people, the people that voted on Friday, one way or the other. All I am reading and hearing about at the moment are families that are fighting amongst themselves over the dinner table, loving relationships that are falling apart, life-long friendships that are coming to a bitter end. I, myself, have had to ‘unfriend’ two people on Facebook that I thought were people that I liked and agree with but whose views have turned out to be at polar opposites from my own views. We might not live in a lovey-dovey, fluffy pink world but violence and intolerance and inhumanity has never been the the answer to anything.   

I’m not going to say how I actually voted myself, those people who know me personally will be able to have a very good guess, but it doesn’t matter and it’s not important. Personal viewpoints are just that, personal, that’s all. What is important is what we, as a country, as a nation are going to do next. People and politicians are bickering, political parties on both sides of the political equation are imploding, votes of no-confidence in our leaders are being proposed, voted on and passed, resignations and sackings appear to be two a-penny. Everyone is trying to second-guess everyone else but no-one is coming up with a decent plan of action and it’s not helpful. It needs to stop and it needs to stop now. Hand-wringing and recriminations will get us absolutely no-where. All it will do will be to make us seem to be weak and indecisive and that will be of no help whatsoever.

We, the electorate, need to know what happens next. I, for one, have a whole load of questions and I need answers. Will the prices in the shops go up? Will my rent increase? Will my daughter and her partner be able to find and afford a home of their own? Will my son be able to get a job and follow his chosen career path? Will there still be doctors and nurses available to treat me next time I have to go to a health centre or a hospital? Will I still be able to find personal assistants willing to come and attend to my home-care needs? Will my rights be protected? Then, as a nation we need to know, will our children’s and young people’s education be compromised? Will our jobs, and the jobs of our friend’s and relative’s, be secure. We need to stop and take stock. We need our leaders to talk to us and tell us. This is not a time for discord and disharmony, this is a time for us all to stand together, as one, and say “This is what we are going to do” and then, actually, do it. The hatred and bitterness and antagonism towards our neighbours needs to stop and it needs to stop now before it gets out of hand. What will it take before we realise that things have already gone too far and pull back from the abyss before we fall? We need to look at what we want for our future and decide how we’re going to get there. We need leaders who can actually lead, not men and women who seem to be more concerned about themselves and their own careers than the people who voted for them. We need to know what is going to happen next and we need to know it now.  

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So. Today is voting day for the Referendum which means I have had to get up. I don’t do getting up every day but today is too important not to so I am now sitting in my wheelchair and I’m not entirely happy about it.

For those of you that don’t know me or my situation, let me explain.

I should start by saying that, for me, the wheelchair scenario is nothing new. I have been a full-time wheelchair user for nearly twenty years now so you’d think I should be used to it by now, and in most ways, I guess I am. But, over the past two years, things have changed dramatically. My impairment has deteriorated markedly and, because of this, I now spend most of my time in a hospital type bed in my living room. I get up a mere three or four times in a month to go out but bed is where you will normally find me. I would love to be able to get up more often, most of the time if I’m honest, but, thanks to my rotten, horrible, massively uncomfortable NHS wheelchair, I can’t.

Before things deteriorated I used to be pretty active. Not a bouncey, run-around, exercisey sort of active lifestyle of course, my MS didn’t let me do that, but a busy, non stop, very fulfilling, sort of active lifestyle nonetheless. What you would expect for a woman in their late forties, early fifties to be honest. I worked full time, went out with my friends a lot, traipsed off into town on shopping trips when I felt like it, went to the pictures and the theatre with my family occasionally, had fun, had a life. And to enable this life to happen, I had a pretty decent wheelchair which I obtained through a scheme called Access to Work. This is a Government funded scheme which allows disabled people to obtain the help and equipment they need to get on a level playing field with their non-disabled colleagues. My wheelchair didn’t do everything of course but it did all the things I needed it to do to allow me be comfortable and busy at the same time. I could recline the back, raise and lower my feet at the touch of a button, tilt the whole chair so I could relax when I wanted to and it had enough battery power to allow me to go where I wanted, when I wanted without the risk of grinding to an undignified halt. When I became too sick to work any more I had owned it for around five years and I had also owned a similar chair for about five years before that so I was used to it and what it did. There was one other thing I loved about it – it was easy to drive and so was so maneuverable that I could get on and off buses, or into cabs if I wanted to, without a problem. I was used to it, I loved it and I was happy and comfortable with the freedom it gave me. It was an integral part of me. But it was old and clunky and squeaky and bits were falling off it. It wa coming to the end of it’s active life and it needed to be replaced. That would have been fine if I had still been in work, I could have just got another chair through Access to Work, but I’d had to give up work when I got sicker so I was no longer eligible and I couldn’t afford to buy one privately. Decent wheelchairs are far too expensive. I now have to rely on the good old NHS for my equipment.

I fully understand that the NHS is publicly funded and so has to show it is value for money and not frittering public money away but does that have to mean that, whilst the equipment it provides for disabled people is functional, it is not what that disabled person really needs. It may have to be as inexpensive as possible, but that does not necessarily mean it is entirely fit for purpose. The cheapest option is not always the best, the most efficient or the most cost effective. Having a wheelchair that gets me around but which causes extreme discomfort and pain is not a great idea really. It means that I am more likely to need to see my GP o the District Nurse more often, that I need to have home care workers and support staff attend in my home more often and that I am reliant on other people for almost everything I want. And that has a cost too. With this, cheaper chair I am not getting to go out and about  as much as I once did. I’m not not able to volunteer at my local disability organisation any more, I’m not able to use local facilities like the library or neighbourhood shops as much as I once did. My quality of life has diminished. I can’t go to the doctor on my own or pick up prescriptions from the chemist if I need to, they have to come to me. I’m not able to even think about getting a part-time job to boost my meagre income and pay my taxes. I have become a drain on the system, I am unable to contribute.

Why can’t things be looked at in the round and not separately through their individual elements? Why can’t cause and effect be taken into account? Why is money and cost always the primary concern when looking at the needs of disabled people rather than what might be the most beneficial and cater for that person’s needs the best? Surely spending a little bit more now, if that would mean spending a lot less later would be more sensible. Maybe one day I will be able to have a wheelchair which will take into account all my needs rather than just giving me the one that is the least expensive. I want something that will allow me to be the real me again not just a shadow of the me I used to be because it’s cheaper. We only have one chance at life so give me, and all the other disabled people in the country having to use the cheapest option available, the tools we need to take that chance rather than always looking for a way to pennypinch and cut corners. The cheapest option is not always the best option and short-term pain will not always lead to long term gain. We all should have the right to live and not just exist and I would like to have the chance to have that right too.

I can’t believe it’s nearly over.

After weeks and weeks of bitching and backstabbing and argument and counterargument, the Referendum Hokey,Cokey is nearly over.

And I can’t wait.

I know which way I will be voting and I have known this for weeks but does it actually matter?

What many people have not really understood is the fact that, whatever way we all vote tomorrow, the result is not actually legally binding. Tomorrow’s vote is, in reality, no more than a glorified nationwide opinion poll. Whatever way we all vote the Government doesn’t actually have to do anything at all. There are far more important, far more worrying things happening all over the world that we really ought to be worrying about and we are being distracted by something which doesn’t really matter and will change nothing. It’s a smokescreen.

And, people are being mislead about the timescales involved with the In/Out issue as well. I am currently watching a TV programme where Alan Johnson MP has just been asked ‘What will you do if you wake up on Friday and we are no longer part of Europe.’ What a stupid question! Nothing is going to change suddenly at the stroke of midnight like a Cinderella type fairy-story, it can’t

Firstly, there is the pure geography of the thing. We will always be part of Europe, it’s the continent our country is part of. Unless we manage to separate ourselves from the seabed and float off towards sunnier climes, we will not be leaving Europe. It’s not going to happen. Secondly, whatever the vote is, we will still be part of the EU on Friday and will still be part of it for another ten years or so at least, even if we vote to leave, because that is how long it would take to do so, even if that is what the Government decides it wants to do. The TV news is trying to make it sound as if what we all vote is actually going to make a difference but it won’t. A Referendum is not the same as a By-election or General Election, it doesn’t actually change anything. It’s a gauge of public feeling and that’s all it is. It’s not going to mean there will be a change at the top or at Number Ten or in the House of Commons. If the Government doesn’t like it, it can ignore the result and absolutely nothing will happen. There will be no Monty Pythonesque foot stomping in David Cameron and George Osborne. There will be no big broom sweeping Boris and Nigel out into the political wilderness no matter how much we all want either of those scenarios to take place. Granted, this is the cynic in me talking, and I know that we all like to feel that our politicians listen to us but, in reality, unless they are actually going to be kicked out of office, they don’t have to do anything at all. They can just go on doing whatever it is they are doing and we just get to sit back and watch. As far as I am concerned, the only elections that really matter are the ones where the vote can change things. Where we get to say which political party will lead our country for the next few years. This is a Referendum and it doesn’t have to change anything at all if our current set of noble leaders don’t want it to. They can look at the result, nod and say “That’s nice dear” and then go on doing what they want, even if we have shown by our vote that we don’t want them to.

What I am trying to say is, the Referendum Hokey Cokey may be nearly over but it doesn’t actually matter and nothing has to change at all because of it. The world as it is on Thursday will very much be the same as the world as it will be on Friday. Sure, we will all have put our ‘X’ on a bit of paper, indicating our opinion, but that is all it is – an opinion. All the politicians are trying to say that what we think really matters but it doesn’t. In my opinion, this Referendum isn’t as important as everyone wants us to think it is. Go and exercise your democratic right, I certainly will be doing so, but don’t expect anything to change because it might not. Nothing needs to happen at all. Don’t believe it can actually change anything because it doesn’t have to. It binds noone into doing anything at all. The Government can go on doing whatever it likes and, until the next General Election, we can do little more than jump up and down and scream about the unfairness of it all. We really are just giving our opinion in a very expensive nationwide Opinion Poll and that is all.

Benefit tales

The UK government is set to face a grilling from UN experts next week over its alleged breaches of international obligations on disabled people’s human rights. 

The government will be examined on Wednesday and Thursday (15 and 16 June) by the UN committee on economic, social and cultural rights on its record on issues such as social security, employment, housing, health and education.

The discussions will take place in public, in Geneva, Switzerland, with the committee’s findings likely to be published the following week.

A list of issues published by the committee – one of 10 bodies that monitor the implementation of the UN’s main human rights treaties – shows that among its concerns is the steps the government has taken to ensure that “austerity measures” introduced through the 2012 Welfare Reform Act do not “disproportionately affect” the rights of “disadvantaged and marginalized individuals and groups”, including disabled people.

The…

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Fed up.

Flippin’ fed up.

Flippin’ fed up and not very happy about it.

My life used to be fun and interesting and exciting and wonderful but now it is suddenly so dull and boring and I hate it.

So what, I hear you ask, has changed? What’s happened? My MS, that’s what happened. Thanks to a massive pressure sore that got infected and put me in hospital on intravenous drugs eighteen months ago I am now restricted to spending most of my time in bed, in my living room, instead of going out, doing stuff and having a life so the pressure sore doesn’t come back. I get to get up and go out occasionally but not every day like I used to. Just a few short hours of freedom every month and then back to my padded prison of pillows, sheets and duvet. Not so bad when it’s cold and miserable outside in the winter but oh so dull in the summer when it’s sunny and hot and I can hear the world happening outside, without me. I used to work full-time, had an active social life, got to go places and meet up with friends and do stuff all the time and have a real life and now I can’t. I used to moan about the weather, the traffic, my job, the crowded shops and streets, public transport delays, the fact there was never anything on at the cinema that I wanted to see. But no longer. My world has shrunk in size to become little more than a rectangular box with a small, hexagonal bump on one side. My living room, with a bay window where my bed is situated overlooking the outside world, and a door to the rest of the house that I only get to go through rarely. I get to interact with real life through my keyboard, through my television, through social media, through occasional phone conversations with friends and family and visits from my carers every morning and evening and that’s it.

Yesterday I had such a lovely day. I got up, was helped to dress, hoisted out of my bed and put into my wheelchair and then I went out into the world with my older child. Not that we did anything earth-shattering or exceptional, we just went to the lovely Sunday farmers’ market near our home and wandered around. We looked at various stalls selling cakes and fruit and veg and meat and ethnic fast food, sampled lots of different cheeses and bought a few, picked over bits of costume jewellry and books and pictures and items in boxes at the brick-a-brack stalls, ummed and ahhed over some small antiques and old LPs and black and white postcards from a bygone era and then went for a coffee and a snack at a local cafe where we got to meet up with my younger daughter. I interacted with strangers, got to meet one of my child’s friends who happened to be there too, felt the sun on my face, felt the breeze in my hair and got involved, just for once, with so-called normal life. Nothing amazing but, for me, very special and not ‘normal’ at all. I was getting to do something that, not so long ago, I got to do most weeks and something that the majority of people get to do whenever they feel like it. And, I didn’t realise quite how special it was until I didn’t get to do it any more. Well, not every week anyway.

Why is it that none of us seem to understand what we’ve got until we don’t have it any more? I know that it’s up to me to make something out of my new life but, if I could do it all again, I would smile at passers-by, chatter with some of the others waiting at the bus-stop, take more pride in my environment and just relish, enjoy and be thankful for my life and my environment. If I could go back and do it all again I would make sure I paid far more attention to the seemingly small things that make life so joyous and wonderful. And I would love it and be thankful for it far more than I ever was before.

Life is for living and enjoying and relishing so go out and live it and enjoy it and relish it just in case it changes when you least expect it and you find yourself fed up and watching others having fun when you can’t.

I don’t want to sound rude, resentful and ungrateful but I am getting completely fed up with the loss of dignity, privacy, autonomy and spontaneity that goes along with being a disabled person, reliant on homecare and personal assistants for my every need. It’s horrible and I hate it so much. I would give so much to be able to have a lie-in because I feel like it, not think about what I’m going to have for my lunch until I’m actually hungry, do something without having to plan it days in advance and have a wash and get dressed without an audience, but I can’t. Just for once, I’d like to be able to be left alone and to chose to do things, because I want to do them, without anyone else being involved, but it’s not going to happen.

After a year of frustration, with agency staff looking after me, I now have a team of lovely carers, whom I employ myself, who come in three times a day, and they do everything for me. Which, don’t get me wrong, is nice, but, just for once, I’d like them, if to were possible, to just go away and leave me alone. They come into the house first thing in the morning, often when I am still asleep, and wake me up, even if I don’t want to be awake. They bustle around, opening and shutting doors, making idle small-talk and turning on the lights. They go to the bathroom, get a big bowl full of water and then strip the bedclothes and my pyjamas off me, wash me and give me a bed-bath. Whilst they do this, and whilst I am still half asleep, trying desperately to get back into the lovely dream I was having only minutes before they came, they ask me what I want for my breakfast and for my lunch and then one of them goes to fetch it. I’m hardly fit for anything before I’ve had my morning coffee but I have to go through the morning routine every day before I even get a glass of water. Forty-five minutes of frenzied activity every morning and then, just a quickly as it started,  I’m on my own until it all happens in reverse in the evening when they come to get me ready for bed. And this is my life. No frivolous conversation about what was on the TV last night, no questions about what I did the day before, no talk about what I’m going to be doing next month or next year, or my plans for the future, just the same thing, day in, day out. No variation. Well, I am completely fed up with being poked, prodded, turned, talked to, flustered and disturbed all the time. I would like to be able to wake up when I want to wake up because I feel like it, have a wash in a bathroom with the door closed, without an audience, change my mind about what I’m going to wear when I’m halfway through getting dressed because I don’t want to wear whatever I got out of the wardrobe after all. I want to be able to go to the kitchen and choose what I want to eat for my breakfast by looking in the cupboards to see what’s there rather than having to choose from the supermarket delivery note. I want to get to look out of the window and THEN decide if I’m going out or staying in rather than make all my plans for the day in advance. I want to be able to do what most people do and live a ‘normal’ life. I want to make simple, little decisions about my life, on my own, without comment, but I can’t. Don’t get me wrong, I really do appreciate the dedication of all the people who help me on a day-to-day basis but, just for once, I want it to be like the old days.

Having the autonomy to do my own thing was never something I truly appreciated when I had it but, now that I don’t, I really want it back. Being able to do something spontaneously was never something I really thought about but now I can’t be spontaneous I really miss it. In the past I have just gone to the station and caught a train to the other side of the country because I felt like it, now I can’t even change my mind about my sandwich filling without having to ask someone else to deal with it for me. Privacy when it came to being seen naked or in my underwear was never something that really bothered me. Changing rooms in clothing stores and leisure centres didn’t bother me and if someone wanted to look at me or stare then so be it. Once you have given birth, with an audience of doctors, nurses and midwives, you get to realise your body is not really your own. Even so, that was years ago and I thought it was something I could put behind me but no, it’s back and it’s not likely to go away now.

I so wish I could just be me again and have my old life back but, unless someone makes a medical breakthrough and finds a cure for me, I’m going to face the fact it’s not going to happen. I am just going to have to grit my teeth and get used to being the new me. It’s not the life I envisaged for myself when I was younger or the life I would have chosen but it is the life I’ve now got. Spontaneity, privacy and dignity as I knew them are now for other people, not for me. My life is now different and there are many other people who are involved in it so, I suppose, I had better knuckle down and get on with it.

Roll-on the future, let’s see what happens next.