New ideas about DLA and AA from our government

I have been given permission to reproduce this article that was  on  http://www.benefitsandwork.co.uk/news/latest-news/1086-dla-and-aa-to-be-abolished

DLA and AA to be abolished

10 July 2009 The government is about to announce plans to scrap DLA and AA according to a report in the Guardian. The newspaper claims that a green paper was due out in June which proposes to convert DLA and AA into means tested ‘social care grants’ which would be spent by social services.  However, the incoming DWP minister Yvette Cooper wanted some breathing space before launching the controversial new proposal. Under the plans, DLA and AA would be scrapped, with the money saved being handed over to local authorities to administer as discretionary grants to provide care for the sick and disabled.  The grants would be means-tested and the local authority would decide what they could be spent on.  This would be likely to be for services such as a personal assistant to help with getting out of bed, washing and dressing. The government has claimed that any changes to DLA and AA will not affect current claimants.  However, such claims will be treated with enormous scepticism by claimants who have witnessed the spin and misrepresentation which surrounded the introduction of employment and support allowance.  For example, the DWP said that ESA would be paid at the same rate as incapacity benefit, but in reality it is paid at a lower rate.  They also claimed that around 10% of claimants would be placed in the higher paying support group, but the real number seems likely to be less than half of that. Benefits and Work will keep readers informed as more  information becomes available. This story was also in reported in the Guardian this week. The consensus of opinion is that it will not happen, after all this would cause hardship for people who are disabled, it could also be considered as discrimination if people with disability were not allowed to use their benefits in whatever way they choose. After all would we see the able bodied being told how they could spend their job seekers allowance?

 

Good Days

It has been a busy two weeks since I last wrote on here.

Firstly I went to see my specialist in London. I had prepared a list of things that I wanted to talk about with him. when I got there I found out that the specialist has taken a sabbatical to do research and those of us who go to Monday clinic are now under the care of a lady doctor. I got to see the registrar (I assume he is a registrar ) he is the doctor that I have seen the last 3 times I have been there, so I was happy to see him. 

He listened to what I said about anti coagulation clinic, I ended up with a rather drama queen like comment of ‘so I just cannot bear having to go to the clinic anymore’

Much to my surprise he was laughing by the time I finished. I had told him about how I feel about this clinic, I had opened up my inner feelings and he was laughing. But he was not laughing at me, he had heard this story so many times before. It seems that many many clinics do not understand how to treat those of us with lupus and APS, so they make up rules, like in my case they say they cannot do the finger prick test, but have to find a vein and stick the needle in. This means, for me a number of attempts to find a vein and also a lot of twisting and pulling and pushing.

The specialist has suggested that I should become more in control of my blood levels, a bit like a diabetic is allowed to test their own blood and adjust their insulin accordingly, he suggested that I should test my blood and adjust my warfarin accordingly. Sadly it does mean that I need to find £300 and something to buy the machine as it is not provided by the NHS. But my parents have already said that they would sort that out for me. I will need to have the clexane injections in the house again, so that if my bloods get too low again then I can inject to stabilise the figure. 

I also spoke to the doctor about two of my children, one in particular has a lot of the symptoms I used to have a child. He told me that for every 5 people he sees with APS 1 of them has a parent, usually a mother, with APS. They have not found out why it seems to run in some families, in fact they say that it is not passed on genetically, but that there seems to be a risk if a parent has an autoimmune condition there seems to be a higher risk of the children having an autoimmune condition. But what interested me is that say a parent has rheumatoid arthritis then the child will not necessarily have the same condition but they may have any of the autoimmune conditions. I am sure one day that they will find out why and how, but for now we have to accept that it is something that is not understood.

Anyway the doctor said that he would be willing to see my children if the GP wanted to refer them to him. Especially the younger one who has more of the symptoms. When I say children they are not little children, my four range in age from 14-24 so not babies any more.

I was so relieved to come away from clinic having been listened to and having had my worries and concerns taken seriously. For a while I have felt that I was being ignored by some of the people I see.

The next bit of good news came on Friday when I got a phone call from the DWP. They asked me some questions about if I had been in hospital or a care home or abroad in the last ??? weeks. I said no to all the questions. Then the lady told me that they had made a decision. I asked if she could tell me to which she said no. Then she realised what she had said and told me that I had been awarded DLA mobility as well as the care part I already had. I was so shocked, I could not believe it, after 8 months they had finally accepted that I was telling the truth. Well that is how it felt to me.

I did not tell anyone other than immediate family until the following Monday when the letter came through the post. Even then I did not want to talk to anyone about it. It was weird after 8 months of arguing about how well I was, to finally get the award brought about mixed emotions for me.

Lastly on Tuesday this week I went for my anti coagulation clinic appointment. It was awful. The first nurse did not talk to me whilst she filled in some paperwork for the previous patient. I was able to clearly read all his private information as she had put his paperwork by me. When she finally did try and get blood she failed and did not even get a drop. But the whole time she was trying to get blood from me she was telling everyone in the room how awful my veins are and how difficult I was. She only spoke to me to call me LOVE.

The second nurse was called over. She again kept calling me LOVE, she dropped the bottle whilst the needle was in my arm and then proceeded to turn around in her chair to get another bottle from the box behind her.All the while she was holding a needle in my arm with her other hand. Not surprisingly she was moving the needle around. Eventually she also gave up. That meant that I had two holes in the same area of my arm where both the nurses had tried to get blood. The place they tried was still bruised from the week before.

The sister finally had a go and got blood. But she was telling the other nurse how it was a problem for her to do this because she was with another patient. Because she was in a hurry she did not press on the gauze. I could not because I had someone holding my other arm where I had two holes which were now oozing blood. So I have a multi coloured bruise on my right arm.

I came away from that clinic feeling as if I had been assaulted. I do not know how I will manage but I will not go back to that clinic again. They have left me feeling scared as to what they will do next time. I felt like a piece of meat and not a person. 

Still the good news outweighs the bad. I am now going to be able to look around for a car. I live less than a mile from our local shops, but because of my health it might as well be 20. I cannot walk into town like the rest of my family. We live too far from the bus route to use the bus, so if I get a car I will be able to get out of the house when I feel like it. I am excited about getting some more freedom. Not that I don’t like spending time at home with my family, but we all need to get out from time to time. Even if it is just to the shop for a pint of milk, or the newspaper.

 

Been a while

It has been a while since I last posted on here. I got busy with family and also with course work. I had to write a 2,500 word story and thought I would try a different genre. I do not like what I ended up doing but who knows I will have to wait and see what the tutor thinks.

I also had a tutorial in using Dragon Naturally Speaking. It means that instead of typing I can talk to the computer and it transcribes what I say. Only thing is that as I use my computer in the sitting room so there are always others there. This makes me more self conscious about what I am saying. They can hear it all even if it is rubbish, where as if I type it I can delete the bad stuff and no one knows.

I got a letter from the DWP saying that they received my appeal application. It just seems to wrong that they give some one thing and others something else even though they have the same problems. There seems to be no set rules. For example the distance you can walk to qualify for low rate mobility is not a set figure. So when their medical doctor said 30 metres then that was the distance that if you could walk you did not qualify for mobility. But then I know of others whose distance set was 50 metres. 

Well I have put in for an appeal so I will wait and see what they come up with. So much for the idea that is in the media that people are given more than they deserve. I do wonder if I should get an electric scooter thing. As I am at the moment I have to rely on my sons car. I do not have one myself and I cannot walk far enough to go shopping. But at the same time I treasure what independence I have and do not want to give up walking. Even though it really hurts.

Today I was so sick of the state of the house that I ended up vacuuming it myself. I had asked one of my sons to do the stairs at least two days ago, but of course he did not do it. So I did and now I am hurting really badly. On top of that I opened a door and did not move my foot out of the way so the door went over my toe. It has taken skin off even though I had socks on. 

We had a good article printed in the local paper about the support group. Because of the article we have had three people ask about joining us. I was so pleased that people were interested. 

We shall see when we meet up next week if  they turn up.

The problem of my INR target range is still ongoing. I have managed to get through to the specialists secretary and she was able to help me this time. Because of what she said I rang the GP surgery and asked if they could possibly fax the letter over again. This was because the first letter has gone. A locum looked at the letter and no one knows what she was going to do, but the specialist was back from holiday and so he was able to look at the letter if we resent it. I have heard no more, although of course this will take time for him to read the letter, dictate an answer, get it typed up and sent out. I just hope something happens soon, because I am not feeling so good at the moment. 

I often wonder if I should be one of those people who does not read up about their condition, and who believes that the doctor knows what is best and so they leave everything up to the medical people without any questions. At least then I would have saved myself some worry. But on the other hand if you do not understand your own health problems then how do you know if you need to do anything? If you do not make a fuss then things can get missed and one could end up sicker. After all if I had made a fuss years ago when I had my pulmonary embolism then maybe I would have been treated 17 years earlier and I would not feel so bad these days? Who knows?

 

DLA appeal

Yesterday I finally decided to appeal against the DLA decision. It has taken a lot of thought on my part as I was worried because you are warned that you could lose whatever award has been made. But then again I know that I am telling the truth and that I need more help than the DWP claim. 

The point of my appeal is that the doctor who did the DWP medical understated almost everything. He also misreported what we said. It started in the first sentence of the report where the doctor said I had an endocrine problem. I have not got an endocrine problem and have never had an endocrine problem. 

Once I started reading the report and writing down what I consider to be mistakes I found that I had written three pages. This has been printed and sent off, we even paid extra for guaranteed next day delivery. 

I just hope and pray that this time the DWP will actually believe what I have said.

 

Going from pillar to post

Some days you cannot help but wonder what life is all about. I do not want to sound maudlin nor full of self pity neither do I want anyone to assume I am depressed. I am just fed up with the system that seems to put obstacles in our way. As those who read my blog realise, it has been an eventful journey for me to claim disability benefit. It has been so difficult that I have considered giving up. The 23rd of December 08 saw me in floods of tears when I got a letter saying that I was being turned down for the third time. But being a stubborn sort of person I decided that I would not give up and that I would take matters further. So after two emails to my MP he is now investigating if he can do to help me with my claim. I have this last week received a letter from DWP telling me that they now accept that I cannot manage stairs without help nor can I cook a meal for myself. So they awarded me low rate care. Nothing though for mobility which when you consider that I cannot walk up and down stairs safely on my own because of my joints and the pain I am in, also the reason I cannot cook is because I cannot bend and my legs give way so that I am considered to be unsafe carrying hot pans. So if it is my legs and back that stop me being able to do some things why is it not accepted that they also stop me walking? Today I got a new problem. I was up at 3:30am due to the amount of pain I was in. It took me 10 minutes just to get out of bed as every movement sent pain searing through my body. Once downstairs with a cup of cold water, and the TV on I waited for the rest of the family to wake up. I have not felt well for a few days and my memory is messed up. Also I knew that something was not right as I was typing in anagrams again!!! Last Wednesday I tried to find out why I had splinter haemorrhages. There were about 5 and on both hands. The specialist always looks for them when I go to London and he had told me it was a sign of clotting. I have not had any since I was on warfarin, but last week they appeared under my finger nails on both hands. I tried to ring the clinic but all I got was an answer phone and a message saying that they could not guarantee to return the call for at least 24 hours. So I rang the anti-coagulation clinic that I attend. I was worried because I have not had my INR (the test they do to see how sticky the blood is) for 6 weeks due to my appointment being cancelled because of the weather. They did not know what I was talking about. Splinter haemorrhages are caused by clots in the capillaries and yet a sister at the anti-coag clinic actually suggested that maybe I should go to my gp and ask for antibiotics! I then tried ringing my gp with the hope that they would be able to sort things out for me. I had to wait two days for an appointment and then was told that I would have to go to the hospital for a blood test. I had an appointment at one hospital and asked if I could go there instead. It is 10 miles in the opposite direction to the one that I have to go to for anti coag clinic. I was told that it would take longer to get the results but of course I could not manage to go to both hospitals on the same day. The lady who took blood did what they all do and ended up trying in both arms and twisting and pushing the needle in and out. She assured us that the result would be with our gp on Friday afternoon. We had been told by the gp that the results would not be there on Friday and so we would have to wait until Monday. Monday came, no results, Tuesday came again no results. So today (Wednesday) I rang the surgery to see if they had got my results. After all if my INR was too low then I was at a higher risk of a clot. The receptionist was really helpful and suggested that if I rang back in an hour she would actually ring the lab and see if she could get the results. I duly rang back at 5 to be told that my INR was 0.3 lower than it should be. I asked if I should take a bit more warfarin and was told to ring back in another hour after the gp had finished surgery and would be able to answer my question. Before the hour was up the receptionist rang back to say that as I am under the anti coag clinic then the gp could not change my warfarin dose. I did try to ring the clinic but there was no one there, so now I must wait until tomorrow. Such is the life of someone with a chronic condition. No one actually looks after you as a whole person. Each different clinic/doctor tells you to go and see someone else. All the while I am sitting here feeling awful. Lupus is flaring and I have mouth ulcers, joint pain so bad that my meds have not got rid of it. If I were a child I would have a paediatrician who would look after me as a whole person. Why is there not a similar thing for adults?

 

DLA decision

I have found the application process for DLA so difficult. After three declined applications I asked for the DWP to re look at the reports and my application as I felt that the decision was wrong. I had to write a letter explaining why I thought it was wrong. I did try and get more evidence from my gp but he has declined to give any more info as he says his insurance will not allow him to give any more information that what meds I am on and what conditions I have been diagnosed with. The Decision Makers (DM’s) reassessed my file and decided that I am entitled to low rate care. Of course I do not agree with this decision. I cannot walk more than a few feet without my stick and am never without pain when I walk. So I expected to be awarded something for help with mobility as well. Now is decision time. Do I accept the £17.10 per week and be grateful that I got something? Do I appeal against the decision? Or do I go for the middle ground, accept what they have given me and put in a new application? If I accept the decision then I will not be getting what I should but at least I will get something. If I go for an appeal I could end up with nothing as the decision for low rate care could be changed. Also with that decision it would mean that I would not get the back payment. But then again if I win I would get extra money to help me get out and do things. The option to put in a new application would mean that I would get the back payment. However it would mean that I would not get any mobility back payment, plus I would have to go through the whole process again and risk losing what I have already been awarded. It seems to me that if I accept the award and do not ask for help with mobility then I am letting them give me second rate care, in fact I think it would be third or fourth rate care.

 

Pay back time

Yesterday I went to tutorial for the course I am doing as part of the degree I am studying for.

It was good and I am glad I went. I managed to concentrate and stay awake. Can you imagine what people would have thought had I fallen asleep in the middle of it? It was useful and also good to get to meet people face to face. Now when people post on the tutorial group forum I can picture who they are. Also it makes you feel more comfortable posting stuff on the forum if you have met the people.

After the tutorial I managed to drive home after getting a small amount of shopping, and I do mean small.

This morning I paid for the extra stuff I did yesterday. The alarm clock went off and it took me 10 minutes to manage to roll over to turn off the alarm clock. Everything I did hurt. I could not move at all without the pain searing through me. That sounds melodramatic when I see it written down but that is how bad it was.

It took me another 10 minutes to get out of bed, every movement was so painful.

I had to go downstairs to get my tablets, memo to self to take them upstairs the night before next time I have a busy day.  I could not even manage to stand to make a drink so I had my meds with cola out of the bottle. It was some left over from yesterday and so it was a bit flat. All the better for taking tablets.

I did not manage to go to church today as I would never have managed to sit and listen. The morning was spent watching TV and falling asleep. In fact I have had three sleeps today and now at 11:15 I am still awake and not needing bed yet. One day I will get into a good sleep pattern.

The pain has been there all day, all along my spine and nothing has helped to make it less.

Today is a prime example of problems people can have. Sometimes you can do things, but you often end up paying for them later. It is a balancing act all the time, do you do something hoping that you will not pay for it later? OR Do you assume that you will be in pain the next day and so do nothing?

Well being an optimist I tend to go for the first option. I do things and then hope that I will get away with it. But that is not how the DWP work, they do not seem to take into consideration any problems later, they say well you managed to walk and sit so you can do it. They do not accept that there are consequences to our actions.

Still at least while I am laid up I can enjoy the snow from the warmth of home, also it gives me time to study as I suspect it will take a few days to get back to normal. Normal for me that is.

 

DLA again!

It has been a while since I posted on this blog. The reason has been that life has been hectic, plus I have been a bit down about certain things.

Today I managed to get my letter to the DWP asking them to re look at my reports and their decision to refuse me DLA. The letter just before Christmas was very upsetting, I felt as if I was being accused of lying and also it was not easy for me to effectively be told that I am not as bad as I think. My letter was to the point. I tried to make sure it was not rude, but at the same time I did ask them if they thought a GP would prescribe morphine for no good reason.

Asking for help does not come easy to me, like a lot of people I would rather do it for myself and be independent than to actually have to ask someone else for help. This makes filling in the DLA forms hard as you have to look at what you cannot do and face up to the facts. It brings back the memories of the last GP who did not believe that I was sick. He prescribed me diazepam for a while and I took it because he told me that it was useful to people with arthritis. The logic was that it relaxes the muscles and so relieves the pain. Well for me it did not help. It made me feel spaced out and tired all the time, also it made me feel out of control of my life. At one stage I found myself thinking things that were not good and so I just stopped taking them. I gave the ones I had left to the chemists and never took another one. I was fortunate that I did not get withdrawal from stopping it suddenly and I felt so much better mentally that I was relieved to stop taking it.

At the same time as this happened I also went through a difficult time with someone who I thought was a good friend. She had come with me to see the GP as I thought she would be able to help me to make him realise that he was not right. But what she did was to go around telling people that there was nothing wrong with me and that I was making things up. She alienated people from me and made me not want to trust anyone. This was almost two years ago now and I really thought I had forgotten about the GP and this person trying to tell me and anyone else that I was making up all my symptoms.

However when I got the letter from the DPW saying that I could walk and could cook and could manage to climb stairs even though the medical report said I couldn’t. This took me back to the time when I thought I was having a breakdown. Yet again I felt like no one believed me. Although of course I know that my family believes me as do my doctors that I see for various things.

So I put off doing the letter. But today I realised that if I did not write a letter then I was just accepting what the DWP said. Many people are trying to claim DLA to help them with day to day life, when they do not have the same support that I have and I am sure that many give up because they are too sick to manage to fight the system.

The relief I felt when the letter was done and in the envelope was immense. My husband went to the post office and has made sure that he got proof of postage. He had to stand in line for ages for me, but he cares enough to do things like this.

I do not expect miracles and have learnt to accept that maybe the DWP will not accept the report from the doctor employed by them but I will make sure that I do the best I can to show them that there are people who are disabled by pain. There seems to be a belief that everyone making a claim for DLA on the basis of pain, are cheats and not really as bad as they claim.

You are allowed to have more than one application for DLA active at any time and so maybe the answer is to keep putting in new applications every so many weeks until one of them is successful.

Also this is the sort of things that MP’s are often interested in, I am sure that they would be surprised to find out how little help there is for people with disabilities.

Just because someone looks ‘normal’ does not mean that they are not disabled. 

 

A busy week

It has been a busy few days, well busy for me in comparison to normal.

Sat got the DLA reports which made interesting reading. The letter contained my application, my gp’s report and also the report from the medical that I had. The gp has more or less said that he is not a specialist and so they should contact the specialist. But the medical report contradicts the DM’s (decision maker) report. I was turned down for a number of things, but when you see that the medical report doctor says that you cannot cope with stairs without help, and that you cannot walk more than 30 metres without having to stop it makes you wonder how the DM decided that I can manage stairs and can walk more than 50 metres with no difficulty.

I can only assume that the DM did not read the medical report. Maybe this month is turn down all who have pain month. It is annoying that some people are messing about and trying to cheat the system because it means that those of us who are truly in pain are assumed to be lying. I have seen a report that the DM’s use which tells them to assume that all pain is exaggerated! This to me is the same as saying we are all lying. Granted some are, but that leaves many of us turned down even though we should be given DLA.

Still I will not give up and will keep on claiming until I get the help that I need.

On Sunday I did something that I have needed to do for a while but have been scared of, I spoke to everyone at church about the group But you look so well. I told them what we were all about and then invited anyone who was interested to a meeting. I was so scared about standing at the front and I told everyone that I was scared. Then I said something funny and made everyone laugh. After that I felt able to talk and in fact enjoyed the buzz I got from it.

After church I had a number of people come to me and ask more about the group and as a result about 5 people said that they would come along to the meeting. Some are really interested in being involved in the committee so now I have to get working. Luckily for me the secretary of the group is very organised and is sorting out the agenda. He says he will do the first draft and then we can go through it together. This man has a wife who is not well; she has Meniere’s as well as APS so like me and others she looks well but is not. Another person who wants to join in is a man who has an enzyme disorder. He is a personal trainer and has had a lot of problems with fatigue, not understanding why he was not able to cope with work but also he was catching everything. He now has to have infusions I think every month, but of course he gets a lot of comments. He looks as if he is fit and healthy because of his job. So he thought the name was apt, it is something that he gets told all the time.

Monday we went to London. Even with a stick no one gave up a seat. I really did expect them to. In the trains where there were plenty of seats of course you do not expect people to even think that maybe you would find it easier to sit by the door. But there were a couple of times when people should have noticed the stick and helped but they did not. Are people blind or do they just not care? At one stage I had to get off the bus because I had been sitting in a seat that meant I was travelling sideways and I felt so sick. We did have one bus driver who I was impressed with. He was driving down Chancery Lane when the bus broke down in the middle of the road. Of course he was not in the nearside lane so he had to dodge the traffic to go and look at the back of the bus, where, according to another bus driver, water was pouring out. This driver then made sure that we all got off the bus safely. We all had to go to the front of the bus and he stood in the road, however he had another driver use his bus to block the road so that we could all get across the road safely. Luckily the bus broke down about 10 yards from another bus stop. But of course everyone on the bus got off quicker than I could and so by the time I got to the other bus it was full. That was when I realised how little notice we take of other people. Still it was lovely to get out of the house and we had a good day together.

Wednesday was a busy day. Our second son had to be at a local hospital for tests at 08:30! I am not good in the mornings because it takes time for my body to get moving and stop being so stiff and painful. We were late because of traffic, but Ian had rung ahead and so they were ok about that. When we got to the hospital there was one parking bay empty in the disabled bays. It was the one nearest to the main door. We had to wait at the hospital for the tests to be done, but we knew that it would take just over an hour so we had books with us.

The same day in the evening it was open night at our daughter’s school. I had not realised how much I have deteriorated in the last year, but being there showed me. The teachers were spread around the school and we were supposed to have times to see the teachers. Well between teachers overrunning and queues building up it felt as if we were going from one end of the school to the other and for some teachers there were no seats to wait on. But that aside we were told that our daughter is a good student, she is bright and diligent. She is also well behaved and tries hard. Well for the teachers that we saw. The funny bit was that they all said she is quiet. We were pleased, I don’t think that you can ask any more of a child than they try hard and do their best.

 

Fighting for my rights

 

I need to get to work on the diary I need for my DLA claim. The system now favours those who cheat over the real claimants. The reason is that the questions on the forms need to be answered in a certain way. If you are a cheat then the chances are that you know what to say. I also believe that those who really have problems mostly try and cope the best that they can. Those who are cheating just give false information and claim what they can. Those who are trying to cope with their problems and being honest on the forms get penalised under the system. It does make you wonder on bad days if it would be better to give in to the pain and physical problems.

Most of the people I know with health problems make the most of what they have. Most of them find it hard to accept the limitations on their lives, I know I am like that. But it means that we are not getting the help we need, we are not having the best life we can. We are certainly not getting the care and help that we need.

Recently whilst I was alone downstairs, everyone else was asleep, I wondered if this was as good as it would get. It was not a pity party, but more a realisation that this was my future and now I needed to make the best of it. No more could I just assume my body would do things. Planning ahead is hard because of this health problem. So I thought about how I could make things better.

It occurred to me that if I took to my bed, which is something I often wish I could do, then I would automatically get the help I need. I would also get the DLA that I should have. But that would be no life, and I would miss out on so much. So I realised that for me the only way ahead is to do something. That something is to stand up and not be bullied into giving up.

I am sure that the DWP rely on people not being able to cope with being turned down and so they accept the refusal and do not do anything else. In fact I wonder if the people who work at the DWP actually read what is written on those forms that take so long to fill in. They are really hard and as the lady on the help line told me if they are not filled in correctly you get refused. So how can someone who is sick and finds such things so difficult to do even manage to get the help that they need?

In my ignorance I really did believe that there was help for those who needed it in this country. I also believed the press when they said how easy it is for anyone to get DLA. But now that I have tried, three times now, I realise that it is really hard to claim for DLA.

It was shocking to me when the lady on the helpline said that I must have filled the form in wrong as there was a way of answering the questions and if you did not do it that way then you were refused. How was I supposed to know how to fill in the form? I am not an expert, just a woman who is sick, in constant pain and so so tired.

I have started o do some research and have been reading certain chapter of ‘The Disability Handbook This is a handbook for DLA and AA decision makers. It explains the care needs and mobility requirements likely to arise from various disabilities and chronic illnesses.’

Every chapter is about a different condition, but there is a get out clause in all of the chapters I have read. For example they talk about how pain can be so debilitating and that what one person can cope with debilitates another person. But in another sub section they say that as you cannot measure pain in a scientific way then it should be assumed that everyone is exaggerating how much pain they experience.

Today I went with two of my children to the opticians. We were able to park directly outside the door and so I did not have to walk far. After the optician I went to the shop and got a small amount of food. Shopping trolleys make great walkers.  About half an hour after we got home I went with my second son to our gp surgery. He has not been well the last few days. Today’s appointment was a follow up because his blood pressure has been too high. I went because I wanted to talk to the nurse and see if she had any ideas. She did and her answer was that he should see the gp on Friday and then next week have a 24 hour blood pressure monitor thing. At 22 BP should not be 150/100!

By the time I got home I was in so much pain that I just could not manage to get from the car to the front door. A distance of about 20 foot! I have spent the evening on the sofa asleep again. Could not eat my tea because I felt so bad again. How do you show the DWP this, how do you prove that you are so debilitated?