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MS

I am so happy.

Saturday was a good news day for me.

After several weeks of waiting, I finally received the two brown envelopes through the letterbox which told me how I’d done with my enforced PIP (Personal Independence Payment) application and my ESA (Employment Support Allowance) reassessment and I was successful for both Benefits.

And, further to that, a very good family friend also received her brown envelope for PIP on Sarurday as well and she’s been successful as too. Virtual High Fives all over our social media pages let me tell you – we were delerious. We both got to sleep properly for the first time in quite a while that night and we can now both breathe freely once more because we know that our finances are guaranteed for at least the next few years at any rate.

Brilliant!

But, there is something we both want to know. Why is it that the maximum award we could receive was for ten years and then we will both need to go through the full assessment procedure once again.

Why?

Why just ten years?

I have MS. I am unable to walk, work or care for myself at all, I am a wheelchair user, I cannot dress myself, wash or bathe myself, prepare my own meals or feed myself without help. I have a catheter and I spend the majority of my time stuck in bed, and I am not going to get any better. I can only ever stay the same or, as is more likely, get worse. My friend has a visual impairment. She cannot see to look after herself or her child. She also needs help with so many things on a day-to-day basis. And, guess what, she will never recover either. Just like me she will stay the same or get worse for the rest of her life. There is no magic bullet that can cure either of us. And, for both of us, this is for always. This is for ever. Our impairments are degenerative and incurable. And, thanks to our impairments, neither of us are to ever be able to work and support ourselves, however much the Government would like us too.

But, here’s the thing. Both of us have been transferred to PIP from the old Benefit, Disability Living Allowance (DLA), where we both had life-time awards. Now we are in receipt of PIP, we don’t. The old Benefit understood that neither of us would improve – ever – so we were given awards that recognised this fact. Under DLA we both recieved awards that meant we would not be pestered, made to fill in intrusive and invasive forms the size of a small novel, questioned, examined, prodded, poked and assessed as if we were making it up and were lying about the difficulties we had in our everyday lives because of our impairments. Thanks to the transfer to PIP, we will now have to go through this all over again in ten years time. And, if we survive that, ten years further on from there too. And we’re not the only people to experience this. Other people with incurable, lifelong conditions are getting the same result. Ten years is the max.

Do the boffins at the DWP know something we don’t know? Is there a cure for MS, for blindness, for so many other impairments just round the corner?  

All this ten year thing will do is cause worry, stress and countless sleepless nights for disabled people and their families and cost the Tax-payer millions. People with incurable impairments will need to be sent forms to complete that have to be printed and posted at a considerable cost to the State. People with incurable impairments will need to undergo unnecessary assessments, undertaken by paid assessors at home or at disability testing centres at a considerable cost to the State. People with incurable impairments will need to be sent letters and copies of their assessment reports telling them they have been re-awarded their Benefits that have to be printed and posted, at a considerable cost to the State.  It does not make sense.

What’s wrong with having a Life-time Award for disabled people with incurable life-long, degenerative impairments? An award that recognises that there are some disabled people who will never get better and will always need help. If people are already getting the maximum award they can get and can’t improve, what’s the point in checking to make sure that they still can’t do the things they couldn’t do ten years earlier? If there is no more money available, if the award cannot go up, if things can’t change what’s the point? People who are not going to get better don’t need to be reminded of this fact every ten years.

Once someone has been assessed, if they have been awarded the maximum available and there is no chance of anything changing apart from things getting worse then just leave it alone. Stop the endless form-filling, stop the endless prodding, poking and assessing, stop the printing and posting, stop the endless stream of brown envelopes, stop the stress, stop the worry. It benefits no-one, it saves nothing and it’s all  done at considerable cost to the Taxpayer.

I am completely and utterly fed up.

Why can’t the DWP just leave me alone.

I have received yet another lengthy form from them which I have to read, complete and return, by the beginning of April.

This time it’s for a ‘Capability for Work Assessment’.

Its not the first Government form I have had to complete recently either. I had to deal with a Personal Independence Payment (PIP) form only last month after they decided that I, alongside many, many other disabled people, needed to be transferred from the Disability Living Allowance (DLA), which I have been receiving since 1998, to the new PIP Benefit instead. It’s not even as if completing either of these forms will give me any more money, the amounts will remain at exactly the same, pitifully small, levels. We never get any type of pay rise whatsoever.

And, as far as my impairment is concerned anyway, there has been no miracle cure either. No improvement, no divine intervention and no miracle medical advance in the past quarter of a century. My Multiple Sclerosis hasn’t got any better during the intervening years between diagnosis and now, it has only got worse. Thirty years on and it has only ever deteriorated.

But, despite this lack of movement, I still have to go through the form filling merry-go-round all over again.

What a complete waste of my time, their time, my ink, their ink, reams of their paper and their postage.

It’s not as if they’re short forms either. They expect me to write a novel, citing chapter and verse, excruciating detail after excruciating detail, about my condition and how it affects me on a day to day basis for every single question and there are an awful lot of questions. The new form is twenty-three pages long, the PIP form was much longer. I even have to give full contact details for my GP, my specialist nurse and my Consultant so they can all be sent a form to complete too where they will be asked to confirm that I’m not lying, exaggerating my condition or trying to cheat the system.  

I realise and fully acknowledge that the Government needs to make sure that the Taxpayer’s money is spent properly and wisely and that the people who are in receipt of Welfare Benefits are actually entitled to the money they are claiming but, for a disabled person diagnosed with a well-known and well-documented, degenerative condition which is never going to improve, however much the DWP, and I would like it, is, in my opinion, pointless.

I am now restricted to my bed most of the time, only able to get up for, at most, one day at a time from 10am until 8pm and then needing 3 or 4 days recovery in bed afterwards before I can do it again. I cannot get out of bed or dress myself without help from two trained carers. I need to be washed and dressed by someone and then hoisted from my bed and put into my wheelchair for the short periods when I do get up.

Exactly how many times and in how many ways do I have to tell the DWP that I cannot walk, cannot stand, cannot move from one chair to another unaided, am doubly incontinent, have a catheter, and have to use an electric wheelchair. I cannot write with a pen or pencil, lift a carton containing a pint of liquid, put something in my top pocket, fold a letter and put it into an envelope  or even move an empty box  without help.

Why can’t they just leave those of us with a life-long, incurable, degenerative impairment, such as MS, alone, once we’ve told them about our condition and the affect it has upon us. Do they think we need to be continually reminded of the effects of our conditions?  No matter how many times they ask, and regardless of the never-ending avalanche of paper they keep sending me, when will they realise I am not going to get better and that having to complete form after form is not going to help.

I would dearly love to be able to get up and go out to work but it’s not going to happen. All these endless forms do is make me feel depressed and distressed thanks to being constantly badgered and reminded what I can no longer do and what I am unlikely to ever be able to do again. They don’t ‘incentivise’ me at all so stop trying. Read my responses on both this, and the previous form you sent to me, make a note of them and then employ a little bit of common sense before you try asking me again. I’m stuck with this disease until the day I die and I don’t need you to keep reminding me. I am well aware of that fact without your havy-handed and insensative intervention.

I have only one further thing I want to say to you on this subject and I would be grateful if you listened for once.

Please leave me alone…

A disabled friend of mine posted a very thought provoking comment in one of my many social groups on Facebook yesterday. Something that has got me thinking big-time.

She asked, what sounds on first reading, to be a pretty straightforward question but which is, in reality, a question that has, for many of us who live our lives with freedom-limiting impairments and illnesses, a pretty complicated answer.

What she wants to know is whether she’s the only disabled person who feels really jealous when she hears about non-disabled people getting to do things she can’t do and go places that she can’t go due to her impairment or if more if us feel that way too.

Well, as far as I am concerned, the answer is a resounding, YES!

Yes, I do feel jealous and resentful, really jealous and resentful, all the time.

Don’t get me wrong, most of the time I’m pretty contented and happy with my life as it is but, just sometimes, I’d really like to spice it up a bit and do some of the things I used to love doing before I got sick. Not so long ago I had a very full and eventful life despite my MS but now, thanks to my worsening condition and to my infected pressure sores, my world has shrunk enormously in hte past two years and I am restricted to a small, single bed sized space in my house, the majority of the time. Sure, I do get get up to go out occasionally, but most of my life is now spent restricted to the four walls of my living room with only my computer, my TV, my phone, my books, my family, my carers, District nurses and doctors and some long-suffering friends to relieve the boredom.  

It used to be so different. I had a good job doing something I loved, earnt a very decent salary rather than having to rely on Welfare Benefits for every penny, went out when I wanted to, spent time with my friends and relatives because I felt like it, got to plan for my holidays and my free time, visited fascinating and interesting places locally and further afield, was a lady who lunched at least once a week, did what I wanted to do whenever I wanted to do it and now, I can’t.

And it sucks.

One of my children has just had a week away, going to a friend’s wedding and then having a lovely holiday exploring Scotland and having fun, the other is planning for her next trip away and visiting friends for the weekend. In complete contrast I get to do nothing more interesting than change channel on the TV and hope there’s a film on I haven’t seen before. My children get to go out and about, go shopping, visit museums and art galleries and the theatre and go to the pictures, go to the pub, do fun stuff and I can’t. I get to experience it all second-hand but, in reality, I’m stuck here doing nothing most of the time and it’s not fair. Don’t get me wrong, I have some really lovely friends who come round to visit, bearing yummy treats to share or who phone me for a long gossip about whatever they, and their families, have been doing but it’s not the same thing. In a lot of ways I don’t feel like I am taking part in real life at all, I feel like I’m merely observing it from the sidelines. I acknowledge that is probably not the case but that’s what it feels like most of the time.

Maybe I would feel differently if I had been born with my impairment and had never experienced a non-disabled lifestyle but, as things stand I don’t know. I can really speak only from my own viewpoint and so, yes, I am very jealous and very envious of all the things other people can do that I am unable to do any longer. I would give anything to be able to feel sand between my toes once more. I would pay whatever I could to be able to walk alone through the woods with my dog, listening to the birds above me and watching butterflies and bees flitting from flower to flower. To be able to go with my friends to shows and gigs without having to consider accessibility or what time I had to be home for my carers to put me back in bed again would be priceless but, unless a miraculous cure is found for me tomorrow it’s not going to happen any time soon, if ever again. I so miss my old life and there are times when I want it back more than anything else but that’s not likely to happen.

I’m pretty sure I’m stuck with what I’ve got now for the rest of my life so I will just have to suck it up and make the best of it. It’s time for others to have fun now and I will just look on and share what they are doing in my secret dream world. That is something I will always have, whatever happens, it’s special and it’s all mine.

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.

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.

Today I woke up in a very reflective mood.

Disability, MS and me. I have spent the whole day thinking about it and trying to make some sense of it. Now it’s time to share those thoughts.

Here goes……

When I was first told I had Multiple Sclerosis, over thirty years ago, I was terrified. I was twenty-four years old, straight out of university, just starting out on being a proper grown-up, with my whole life ahead of me. Then I was hit by a medical bombshell. My world, the world as I knew it, collapsed around me. MS was something I knew very little about. I had vaguely heard of it but, what it meant for me, was a complete unknown. The only thing I really knew was that there had been a woman, in the village where I had grown up, who’d had it. She couldn’t walk, she didn’t go out much, she had used a wheelchair and she had died. That was it.

And now I had it too. Here it was, slapping me in the face. Suddenly it was part of me. It was real. All too real. My life, my future.

What it meant was something I would have to consider, and fast.

Great.

Initially I spent a fair bit of time feeling very sorry for myself. I asked my long-suffering GP a whole load of self-pitying questions and then, as the internet wasn’t really a thing thirty years ago, I went to the library to do some research. What was this thing that had got me in it’s claws and what could I do about it? The answer appeared to be, not a lot. Unlike today, I didn’t find any ‘uplifting’ biographies written by fellow MSers or friendly support groups to pass on advice and information about dealing with the disease, just dry medical tomes which told me little about what to do and how to live, just what was probably in store for me further on down the line and it wasn’t very cheerful.

In other words, not a lot of help.

So that was when I made a decision. I was going to carry on carrying on. That was what my beloved Grandfather would have told me to do so that was what I would do. What choice did I have? Either I could get on with my life and fight or I could give up and despair.

And that wasn’t me.

Some people may have said that I was burying my head, not being realistic and just hiding but I don’t think I was. I was a young woman with a whole load of life ahead of me and I was going to do my best to enjoy it.

I moved down to London, found a job, had a family and carried on. At first, and for several years, the MS didn’t affect me much. Sure, over time my walking became affected and things got a little harder but I coped. Then I was offered and accepted a temporary job with a local disability group. And that was when my new life really started. I got to meet other people with a host of different impairments, I learnt about the world of disabled people, I found out about all the support groups that were available and I got involved with proper activism for the first time.

Over the subsequent twenty years, whilst the MS got worse, my life has got better and better. I have been involved with some incredible things. I have been to some fantastic places, I have made some very special friends that I would never have got to know otherwise. I have done a post-graduate Law qualification, I have started writing and, through it all, I’ve enjoyed myself and had a good time. All things I might not have done if I hadn’t become become disabled and been given the opportunity and the tools to learn to live with it.

The life I have now is very different from the life I might have had if I hadn’t become ill but, whether I would have enjoyed it as much if it hadn’t happened, is something I will never know. All I can truly say is, thanks to my MS I have become the person I am today and I am grateful for it.

I live it, I feel it, I own it. Bring it on!