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PIP worry worry worry

Hey guys,

Up in agony again with my MS and unable to sleep, I’ve been so much worse since this PIP. I just can’t stop worrying. I know it’s bad for me, but I can’t help it. This stress and anxiety being caused at the thought of losing my DLA / PIP all because the government wants to “weed out” claimants who shouldn’t be on it. They say they’re there for the people who genuinely need it. That’s not going to happen. We all know that. The real disabled people who need this will fall through the gaps and left to rot and the “professionals” who know how to milk the system will still remain on it. A mobility car/scooter etc is there to give us some mobility and some sort of life. The people who shouldn’t be on it have the luxury of then going to get a job “if” turned down and we don’t. Who would employ us? I for one know I couldn’t hold a job down. I would give my all to take a magic pill to make this go away and carry on with my career. I ad such a wonderful looking future until this. Can you imagine these people having to be interviewed for their jobs every few years like us? or before hand know the people whom are doing there interviewing are not so much there to do the right thing, but find an excuse to get rid of you for the numbers? or this is the ONLY job and they are unable to get another (like we can’t go out to work)?

Things are swirling round and round in my head, yes I know the stress and anxiety is really bad for me and I will pay through my body for this added stress, but I just can’t help it. hings like:

My young son plays and loves his football. If I’m up to it I can go and see his matches. This help him feel like he has a proper mummy who is there to support him and I can watch him grow. He too has been dealt a terrible card through no fault of his own by having a mummy like this. OK I cant stand on the sidelines screaming and cheering like the other mums, but I can sit, comfortable and safe in the passenger side of my mobility car. can be parked facing the grounds and watch. Every single time due to fatigue I fall asleep. I literally can not stay awake. Without that car I will just have to remain at home, feeling more depressed and sad and he (the child) will lose out. He’s lost out enough already with all his young eyes have seen.

How about parents evenings? Yes it’s a struggle to get from the disabled bay in the car park to the class room, and if I had a £1 for every time I’m asked “are you OK?” “do you need anything?” Would you like a drink?" I’d be a rich women, but hey, I’m there. I can discuss my children and be a real mummy. I can’t get a bus to the school, which is about a 20 minute walk (40 odd minute walk for me) or a private ambulance, nor will the school pay for my taxi. So without my car I can’t have anything to do with the school. I can’t be a mummy, they’re even taking that away from me. My children are my world and they’re all I have. Just typing this I am in tears…

What when I need to see my GP? it’s about 4 or 5 streets away? I can’t call an ambulance, reimburse a taxi etc and yet I cant make it there walking, so hey ho I’d just sit at home and stay ill as they don’t like doing home visits for minor things even if you’re house bound and yet a mobility car means non of it is a problem.

My friend…my one remaining friend I have left, as all my other friends have drifted away due to me being ill and unable to be a mate to them. She lives at least 4 bus rides away (8 in total). What do they think I should do? ask her for the taxi fares? go on the bus alone and hope someone picks me up? bring my husband to sit in on the girlie gossip? or no…what will really happen is I will lose her too and have no friends at all. The gov will take everything away from me if I lose my car along with thousands of people who really need and rely on it.

A few years ago something happened by me not having my car that’s giving me nightmares…

I had an appointment at the hospital to see my kidney specialist. My mobility car was in for its MOT and they didn’t a car courtesy car to loan us. My elderly father had to come with me. We didn’t have the £20 or so for taxis (the hospital wont reimburse for private taxis and only give you a few £ for petrol plus I wasn’t in a car) so we chose to try the bus. Just by walking with my stick to the bottom of the road I was in agony. By the time we reached the bus stop (10 minutes or so walk) I had spasms, shakes and foot drop. It was really cold and I was shivering silly (which is great with us having low immune systems) and more,. The first bus came but didn’t have the “drop down” ability for wheel chair access, which I need as I can’t climb the high steps, so we had to let it go. The second bus came 20/25 minutes later and it was full, all though it had the ability to lower there were already 3 pushchairs and no seats, so again we had to let that one go. By that time I was really late, so even though he didn’t want to, and it was a split second decision, my father had to leave me to go back to the house to call and let the hospital know I would be late. I was terrified on my own. I was swaying all over, I felt scarred, my eye sight began to go and there was a main and very busy in front of me. Before I knew it my legs went and I was on the floor. I had to just lay there, and there was nothing I could do. Just look to the sky crying. A passing car stopped and got me back up. He and his wife offered me an ambulance but I declined. Eventually my father came and so too did the bus. This third bus didn’t have the lowering either but I had to get on as I was so, so late. I felt so, so, so embarrassed as the driver had to help my father get me on. All the people were looking and whispering. There were no seats and nobody offered to give me theirs. The driver got some guy to move, but again my legs gave way as I tried to get to the back of the bus as it was the only seat/person who stood for me, I fell, hit into some guy and smacked my head on the metal pole. So there I was on my way to my appointment, but with a huge egg on my head. However I had to get another bus. I had to be helped again to get off then walk another 15 minutes in absolute agony stopping to take morphine for the pain. Once again two buses passed as I couldn’t get on due to the high steps, but the third one I did manage to get on. I had to be helped by passers by and pushed up like a farm yard animal.Yet we are supposed to keep our dignity???

Now, I have a problem like some of you here where I don’t know when I want to wee, I just dont get the feeling and have to use catheters regularly. If I dont go my urine travels back to my kidneys, back then to my bladder and round again and again. The dangerous part comes when my tummy begins to distend and I am always warned not to let it get that far. By now my tummy was rack hard. Oh I had my catheters but on the middle of a bus unable to stop or even get into the back seat of the car for this emergency and my life being in danger. We got the hospital and I could see all the cars parked in disabled bays and disabled people attending their appointments as comfortable as they could. But the walk from the bus stop to the main doors looked like miles off (about 10 minute walk) However there is nowhere to stop, rest or even lean on as it’s an open space for the ambulances or drops offs. Just as I got to the door my balance went once again. I tried to stop myself, but I hit into the glass door full force. My elderly father tried to catch me but I almost brought him down with me. My head smashed into the glass, i bounced back off and landed in a heap. My eye had split. I had blood all over and couldn’t see much. Someone got a nurse and she got me a hospital wheelchair. I told her to get me to a toilet right away and explained why. Got to the toilet only to find there were no disabled toilets and the nearest one was on the third floor, via the lifts which were at the the back of the hospital. I had no choice, my life was in danger. As I tried to balance in this filthy narrow toilet, a sanitary bin overflowing, urine all over the seat with my stick and unable to see, doing my best to hurry up and get my catheter out of my back. The fist two catheters fell on the floor.I only had one left and my hands were shaking and I can not feel my hands (that I get all the time) I had no choice but to ask my dad for help. My life was in serious danger and I only had this chance. My poor poor dad had to come into a ladies toilet with her middle aged daughter to try and help. My dad is a very proud man, worked all of his life, paid all of his taxes and other women were giving him dirty looks as I admit it looked very sstrange to see. I have NEVER felt so embarrassed in my life. After he tried, he had to go and get a nurse. By this time my temp was soaring and the pains in my tummy were unreal. My legs were like jelly, I couldn’t see, My skin was burning all over with hyper sensitity, and more. The first nurse came and said she couldn’t do it due to the conditions I was in and I needed to lay down etc???, luckily the second nurse whom was right behind her moved her out the way and bang, she got it in. Those of you who know, there’s no stop tap with a catheter. So urine went all over my coat, jeans and boots. She got the hospital wheelchair, put me in and took me to the clinic herself. There I was covered in my own urine, wet, shamed, blood dripping down my face from my eye, my poor dad in tears, me in tears, shaking, shivering etc. By the time I got there…2 hours late the clinic has ended and I was told I should have been on time??? Then I was given another appointment which I desperately needed t was for in another 6 further months time!!!This is just one of the things that has happened like this, there are many, many, many more. This will happened again and again without my car.

My life along with many is over. I feel down, desperate, scared, worried and depressed just imagining it. There’s no life I’ll just exist. I dont want to exist. I dont want a life if that’s the life I get. This isn’t fair how people who haven’t got the first clue what we go through, who think a simple cold is the end of the world decide how and if we live. I have always felt proud to be English, and the country we have and how looked after our disabled are (well to a point) but this is like something from the Victorian ages. These assessors aren’t there to do the right thing for the right people, they are a French business company whom are there to get the numbers down. They wont stop what they are doing until they find disabled people dead in their won homes. They need to support the disabled, help them, be there for them, not this. I read from another post here a lady going through similar t me being told she is fit for work?? What a joke. We need to stand together on this one. All disabled groups together. There is a site I found yesterday “we are spartacus” a group of disabled people getting together to fight this, we should all do the same. The MS society join forces (if they’re not already) The people who run this place are amazing too and always standing up and fighting for us. The support here and the people are wonderful, we can all relate to one another and be there. I just worry about all of our futues…,Everyone with MS differs, but in the end we all go through the same. … Any thoughts / ideas guys ? Is there anything we can do? Or is it going ahead no matter what? I did read yesterday that the gov has a legal team on them due to the fact they added the 20 mt rule after it had been put through discussions prior to passing it, and that in fact its now unlawful what they’re doing. I’m more than sure the gov will have a lot of legal teams chasing them on this one and we wont go quietly. Our bodys may not do as we like but our minds work just fine. We’re not push overs. So hey lets see what comes for that. There were three cases. You’ll find it on the spartacus web site. I’m sure there will be more seeing as this is new.

x

How very sad. I am welling up just reading your story and its stories and letters like yours that should be headline news all over.

This whole situation is simply wrong. Thank you for your honesty, united we must be able to defeat this ridiculous atos scenario. and this bullying, uncaring and dishonest government. How can it be that penpushers opinions are deemed to be more true than Neuros, GPs etc? I’m ashamed to say Im British. Take care Diane x

I first attempted to read this bleary eyed at 4.15 this morning when I was up with the usual symptoms of this terrible disease and like Diane I wasn’t welling up I was sat with tears streaming, & my blood boiling. This is insane when will this government realise what they are putting people through it’s just not right. Just to let you know I’m thinking of you & sending ((((((((((HUGS)))))))))) xxx

Hi Dianne,

There is so much to address in your post that I’m not sure where to start.

My daughter was 11 when I was dx (she’s 28 now) and although it meant I wasn’t the mummy I had planned I was still very involved with her life and we have the greatest relationship now. She didn’t really suffer because of my MS – things were just different.

The one thing that shines through from your post is that you need an electric wheelchair. I gave up driving nearly 3 years ago and was still on my feet at that time. I used taxis quite a lot (I wasn’t paying for the car so there was a bit more money in the system) After a while my ability to walk deteriorated and I was afraid to go out of the house – couldn’t go anywhere without falling. Then I got my electric chair and the world opened up and I could get just about anywhere I wanted. My daughter says that the chair has made me able bodied again! That 20 minute walk to school would be a doddle and you would glide into the classroom not struggle. You would still need accessible busses but at least you wouldn’t fall or need anyone to give up their seat. Is life in a wheelchair peachy? Of course it isn’t – there are still all sorts of accessibility problems but on the whole it’s a darn site easier than the journeys you are describing. It’s a wheelchair you need not a car

Your life is not over.

Please don’t make ATOS your focus. Instead try to get aid and adaptations that will make it easier for you to get out in the world. The first stop is an OT. You can refer yourself to adult social care or get your GP to do it.

Jane

PS I know every area is different but I use hospital transport all the time. They don’t just drop me off unless I say I know the way, on the whole they deliver me to the appropriate clinic and help me back into the house when we get back. You may need to be assertive at first but the drivers have a duty of care – they can’t just dump you.

Hi Diane, just got through reading your list of absolute horror stories.

Like Wendels, I think you need to see about getting an electric wheelchair too.

I have one, as I haven`t been able to walk at all, for 9 years.

Before that I used a wheelie for outside. I was always falling too and the fear of just trying to stand safely, is horrendous.

I am also worried about PIP. But before that, I am now in the frightening midst of being moved from Incapacity benefit to ESA.

I am 60 years old, for pitys sake. Who on earth would want to employ a disabled woman aged 60, who needs the toilet urgently and doesnt always make it in time,only has 1 good ear, is fatigued all the time?

I should`ve been getting my state pension now, but it has been deferred to 2015.

We are all living in fear of the government cut backs. I always imagined hubby and I would have a peaceful, enjoyable retirement, after working so hard, never asking for any help, and paying into the system without complaining.

I was wrong.

luv Pollx

Hi again Dianne. i`ve just dome something and been reassured re PIP.

I think you should do it too.

Just google PIP self test.

It has 2 sections, one for care and one for mobility.

I scored myself a bit lightly on the one or two questions.

I do suggest you take the test. it is done anonymously and no-one but you will see it, so dont worry that the DWP will read it.

I know they may not score us the same, but just be honest and see what you score.

I scored 24 points in each section, which put me at the enhanced rates for both.

it should ease your fears a bit, hope so anyway.

luv Pollx

Thanks Guys,

Just spend ages writing a post out and it vanished. Thanks for your replies. Can see just how worried we all are. Its terrible. We dontw want to be this way. I wish I could work. I feel wasted at home but my bosy says otherwise. An elec scooter/wheelchair wouldn’t help me. I’m so glad it worked for some of you, but it wouldn’t mean I could go for rides to the seaside in the summer to feel human, couldn’t watch my sons football as it’s just too cold, may rain, and I get so tired I often fall asleep in the car whilst he’s splaying, I couldn’t get to my one and only friends house as it’s too far and nobody would be able to come with me. I’d have no childcare. The drops on and off the roads to get to the Dr’s would mean I’d be stuck. The fear of falling off the scooter/chair so I cant be alone as sometime my trunk doesn’t hold me up where as the car seat reclines. Plus why? if the car gets us to the places we need to go, not just places to feel in some way human, why take it from us?

It shouldn’t matter if we can walk 20m/ 50m or 200 m We simply cant do what someone fit can. Put it this way. If you are severly disbaled and get the enhanced (mobility) you get out and about with some quality of life…if you’re fit and well you can work and buy a car meaing you can get out and about…but if you fall in the middle…you dont get the car but cant get out and about so stay housebound…how is that fair??

I’ve seen the point scoring system and yea I too score very highly and therefore I shouldnt have a problem, but what we actually get is another thing. I am in high rate DLA infedinate right now, so that shows after my cons, nurses and Dr’s got involved they saw what I should be on. To see a ladys post here and her being told she can work is terrible and shows what sort of thing we can expect. They are employed to reduce the numbers…so nobody really knows what they’ll get. Which is why even now disabled people are being asked to return to work and the “milkers” whom the gov are targeting will once again work the system and remain on it. I do feel confident even though scared. I am scared I will end up completely housebound, I have to prove I am this ill, I have to be re interviewed etc…really? in this day and age we are going through this?

Guess we all just have to wait and see. Just hope they realise what they’re doing. Hope they fix it and fix it now. Hope they really do look after the people who need it most. The one and only way I can get to the places I need to go is by car. Just picturing trying to get to my kids school, in the pitch black, falling all over the scooter, putting my safety in so much danager just as a woman alone, all wouldn’t be a problem if I keep my car. My husband has to lift me in and out of the seat at times. Thing is we all have good and bad days…well weeks. More bad than good, I hope the gov realise this.

NO CAR NO LIFE that should be the campaign. Also its not just the car. Its all of our other benefits. We all get top ups as we’re on high rate to help buy the extra things we need, which doesnt even cover the real cost, that too will go,

Can not believe you guys are having to go from incapsity benefits to ESA… why? Do you guys have to be re assessed again for that too? Wonder how many nervous breakdowns they cause??

OMG when will they stop? its a lovely way to put it “benefit reforms”…nice and pretty, reform your benefits by making it so as some people dont see the system as an easy target, or a pit stop whilst out of work rather than a way of life and look after your elderly and disbaled as they forget this could happen to them.

Thanks again guys, it’s nice to know we all understand one another and can support one another too. You’re all good, kind, caring people xx.