I have been keeping rather a low profile on here of late and I thought it was probably time to update everyone on what has been happening with me. I went to see my GP in Feburary and we discussed ways in which my medication could be improved to help me deal with my pain levels. The result of this discussion was to up my Gabapentin levels slowly and see how that helped and also to give me Oramorph to take, as and when it was needed, to help me get handle "break through" pain. Break through pain is the stuff that your normal meds don't handle because you've actually done something like leave the house for more than 30 minutes.
Altering the levels of the Gabapentin has taken quite a few months to get used to. I was very spaced out and disconnected with the world, but the pain levels became more manageable. I probably should up the dose by one more a day, but then I'm afraid that I'll push myself too far without knowing it at the time and then will pay the price later.
The Oramorph was invaluable on a trip to see my new nephew in Dorset. The journey nearly killed me. I was actually lying on my in-laws sofa in tears before I relented and took the Oramorph. I had put off taking it as the first couple of times I'd used it I'd been a space cadet for about 12 hours. I didn't want that happen on a trip to visit the family. Unfortunately it was a necessity. But oh how glad I was to have had that relief. I went from crying in pain to being able to read while lying down for a couple of hours, while my body recovered from the trip.
My mother-in-law was so shocked to see me that way that she lectured everyone concerned that I shouldn't be having to travel to see them so often and they the rest of the family should be travelling to see us. This really touched me, as I think she initially found it quite hard to understand the nature of my condition because I always hid my pain when I visited. Well, as much as I could. She has, over the last couple of years, been suffering with her own health issues and I think this has made her realise that invisible illness is very real, and horrible to deal with.
It was wonderful seeing my new nephew and of course the older ones and my niece. They are great kids and I wish I could see them more often. But it seems that 3.5 hours in a car is now impossible, if I want to actually enjoy my trip and not spend most of it flat on my back drugged to the eyeballs.
Now I have medication to help with my pain, but my adhesions are growing. My entire abdomen swells up all the time now and I can't bear to have anything on my waist, so I'm living in yoga pants and dresses that swamp me. My new favourite thing to wear is maternity jeans! I never thought I would buy them but they are close to being the most comfortable thing I can wear now.
I had an appointment to see the consultant in May, but it was moved back to June. It seems such a long wait, but I know it isn't really. I really hope that he can help and won't send me away to wait a while longer before surgery. The pain is worse than it was before my last surgery, so I'm hoping he can help soon.
At least I've now got into a routine again and I manage to go to a knitting group once a week. I have to rest up a couple of days before and after each "outing" but at least I leave the house and see other people. These little trips are what keep me sane. That and the Oramorph!
I probably won't have much more to say about things until June, but I did want to record what is happening right now. I've not felt able to before now, as it has been a fight to be able to write coherently while getting used to the meds! I'm just grateful that my GP listened to me and helped me work out what was best for me. I felt very involved in the decisions that were reached and they were pretty much exactly what I wanted to leave with. So big thanks go the people I've met online who introduced me to the idea of Oramorph, before Spartacus I didn't know it existed. It may be the only thing that will get me through, until they can do surgery again.
Wednesday 9 May 2012
Thursday 2 February 2012
Missing in Action.....
I know I haven't posted very much here over the last few weeks, and I think I probably should have been doing. Not for any reason other than my own sanity, but I should have been writing down what I was feeling to help me process it.
The last few weeks I have basically spent inside my own head worrying and feeling down. I won't use the word depressed because it wasn't that bad. As someone who has experienced depression, I know how I'm feeling is not as bad as that, but it could lead to that. I don't want to let myself walk down that road again, it's horrible. And now I know what I need to do in order to avoid descending into darkness.
Now I can certainly do the first three. Though it did take a while to get to number 2! Essentially I have two major problems. The first is the same as most of the sick and disabled people in the UK at the moment, our world is being demolished by the Government and it is breaking my heart to see what this country is capable of inflicting upon it's most vulnerable.
The second problem is more selfish. My pain is getting worse again. Less than 12 months since my last surgery and I'm struggling with the pain caused by adhesions again. I had been experiencing discomfort for a few months, but these last few weeks have been really unbearable. Trying to adjust to the new levels of pain has made me feel so despairing that this merry-go-round is about to start again, that I have found it hard to focus on anything but the pain. I've wasted several days unable to read or craft and that is really unusual for me.
So now I have looked at how I'm feeling and have accepted that it is normal to feel this way. I shouldn't be ashamed of those feelings. They are not a sign of weakness, they are a sign of sanity! Any person who did not feel frustrated and sad and lonely in these circumstances is probably not wired right, or is on a much higher plain than I am!
So I guess it is now onto step 4. I feel so overwhelmed with the problems of the Welfare Reform Bill and what it is going to do to the people I have come to know through the Spartacus Report group, that I just don't know where to start. I think that is a common sensation amongst all the hard working campaigners. We fought so hard to get just a tiny bit of decency written into the Bill, and then the Commons stomped all over it yesterday. It feels like we have been beaten into a pulp by the school bully after we thought we had got them expelled. So I guess with this problem I am going to go away and let my mind sift through the ramifications, read around other people's blogs and see how I feel in a few days. At the moment though, I just feel pummelled emotionally.
With the other issue I have decided to take a more proactive approach. I have made an appointment to see a GP next week and I am going to discuss ways of tinkering with my medication to give me a way to top them up when I have break through pain. This is my biggest issue. When the pain gets really bad, there is nothing I can do except go to bed and cry. I need to be able to do something to help take the edge off it. I think there are ways of doing that as I am not totally maxed out on ALL my meds, just some of them.
I've also downloaded a pain management app to see if by keeping an eye on where my pain is and when I feel it, I can work out ways to alleviate the pain through pacing. I don't know if it will help, but at least I will have something to show the Consultant when I next see him. I am going to try and ring the clinic and see if I can get an earlier appointment because I need reassuring that these adhesions are not going to kill me. Having a detailed record of where my pain is located and when will be a useful tool to take to an appointment.
I think since finding out that my last surgery alleviated a condition, that could have killed me, I have become a lot more nervous about having adhesions. I used to think it would just cause pain, but learning that a bowel obstruction can be lethal has made me more jumpy about it.
At least with my own health I have things I can do to improve matters, providing I approach them in the right way. I can't do anything, on my own, about the Welfare Reform Bill, but at least I can start managing my pain better.
The last few weeks I have basically spent inside my own head worrying and feeling down. I won't use the word depressed because it wasn't that bad. As someone who has experienced depression, I know how I'm feeling is not as bad as that, but it could lead to that. I don't want to let myself walk down that road again, it's horrible. And now I know what I need to do in order to avoid descending into darkness.
- I need to look at how I'm feeling.
- I need to talk about it
- I need to accept that those feelings are valid, and
- look at ways to change why I am feeling that way.
Now I can certainly do the first three. Though it did take a while to get to number 2! Essentially I have two major problems. The first is the same as most of the sick and disabled people in the UK at the moment, our world is being demolished by the Government and it is breaking my heart to see what this country is capable of inflicting upon it's most vulnerable.
The second problem is more selfish. My pain is getting worse again. Less than 12 months since my last surgery and I'm struggling with the pain caused by adhesions again. I had been experiencing discomfort for a few months, but these last few weeks have been really unbearable. Trying to adjust to the new levels of pain has made me feel so despairing that this merry-go-round is about to start again, that I have found it hard to focus on anything but the pain. I've wasted several days unable to read or craft and that is really unusual for me.
So now I have looked at how I'm feeling and have accepted that it is normal to feel this way. I shouldn't be ashamed of those feelings. They are not a sign of weakness, they are a sign of sanity! Any person who did not feel frustrated and sad and lonely in these circumstances is probably not wired right, or is on a much higher plain than I am!
So I guess it is now onto step 4. I feel so overwhelmed with the problems of the Welfare Reform Bill and what it is going to do to the people I have come to know through the Spartacus Report group, that I just don't know where to start. I think that is a common sensation amongst all the hard working campaigners. We fought so hard to get just a tiny bit of decency written into the Bill, and then the Commons stomped all over it yesterday. It feels like we have been beaten into a pulp by the school bully after we thought we had got them expelled. So I guess with this problem I am going to go away and let my mind sift through the ramifications, read around other people's blogs and see how I feel in a few days. At the moment though, I just feel pummelled emotionally.
With the other issue I have decided to take a more proactive approach. I have made an appointment to see a GP next week and I am going to discuss ways of tinkering with my medication to give me a way to top them up when I have break through pain. This is my biggest issue. When the pain gets really bad, there is nothing I can do except go to bed and cry. I need to be able to do something to help take the edge off it. I think there are ways of doing that as I am not totally maxed out on ALL my meds, just some of them.
I've also downloaded a pain management app to see if by keeping an eye on where my pain is and when I feel it, I can work out ways to alleviate the pain through pacing. I don't know if it will help, but at least I will have something to show the Consultant when I next see him. I am going to try and ring the clinic and see if I can get an earlier appointment because I need reassuring that these adhesions are not going to kill me. Having a detailed record of where my pain is located and when will be a useful tool to take to an appointment.
I think since finding out that my last surgery alleviated a condition, that could have killed me, I have become a lot more nervous about having adhesions. I used to think it would just cause pain, but learning that a bowel obstruction can be lethal has made me more jumpy about it.
At least with my own health I have things I can do to improve matters, providing I approach them in the right way. I can't do anything, on my own, about the Welfare Reform Bill, but at least I can start managing my pain better.
Wednesday 18 January 2012
Concessions
Yesterday I was so depressed. Firstly the DWP finally issued the PIP Assessment Thresholds and Consultation Document. Benefits and Work have written up a review of this document, if you want a smaller version. If I read this right I think I would only be eliglble for the Standard Rate of Mobility. It is hard to interpret the thresholds clearly. I also don't know what this would mean in monetary terms, or whether I would still be able to get my Blue Badge.
This kick in the gut was accompanied by Baroness Tanni Grey-Thompson's amendment being defeated in the Lords. This amendment, 50E, was designed to slow down the process of introducing PIP so that the fiasco of the introduction of ESA is not repeated, hurting so many disabled and sick people.
I was incredibly depressed about this defeat until I read Sue Marsh's post this morning. I highly recommend reading this post as it clearly lays out all the concessions that Lord Freud had to make in order to defeat the inclusion of this amendment.
I feel that these concessions are a direct result of the campaigning that has occurred. @LatentExistence put together a list of the media coverage the Spartacus Report campaign triggered on the day of the vote.
I still have to come to terms that these changes are happening. I hate the idea and fear what is going to happen to me and other people in need of help. It was so hard to get DLA, I fear it is going to be almost impossible to be awarded PIP.
I shall wait and see what happens next. Until it all begins to unfold, I can remain proud that I did all that I could do in order to fight for the rights of sick and disabled people. I'm proud that I joined my voice with the thousands of others who wanted to stand up for themselves when the able bodied wouldn't.
This kick in the gut was accompanied by Baroness Tanni Grey-Thompson's amendment being defeated in the Lords. This amendment, 50E, was designed to slow down the process of introducing PIP so that the fiasco of the introduction of ESA is not repeated, hurting so many disabled and sick people.
50E: Clause 80, page 58, line 26, at end insert-
"( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for-
(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;(b) disabled persons organisations to be involved in formulating the assessment process."
I was incredibly depressed about this defeat until I read Sue Marsh's post this morning. I highly recommend reading this post as it clearly lays out all the concessions that Lord Freud had to make in order to defeat the inclusion of this amendment.
I feel that these concessions are a direct result of the campaigning that has occurred. @LatentExistence put together a list of the media coverage the Spartacus Report campaign triggered on the day of the vote.
I still have to come to terms that these changes are happening. I hate the idea and fear what is going to happen to me and other people in need of help. It was so hard to get DLA, I fear it is going to be almost impossible to be awarded PIP.
I shall wait and see what happens next. Until it all begins to unfold, I can remain proud that I did all that I could do in order to fight for the rights of sick and disabled people. I'm proud that I joined my voice with the thousands of others who wanted to stand up for themselves when the able bodied wouldn't.
Monday 16 January 2012
How I Became Disabled & How DLA Helps Me
This is a very hard post for me to write, but I think it is important to explain how disability often creeps up on you. Most of us don't get hit by a bus and end up a wheelchair, we start having symptoms of disease that take a long time to develop and get diagnosed. We often spend years of uncertainty and trying different medications, fearing that we are becoming more and more dependent upon our loved ones. There is very rarely a day or even a month that you can point at and say "this is when I became disabled" and acknowledging that you are disabled is a very hard step to take. This is why it takes people so long to even consider applying for Disability Living Allowance or a Blue Badge, or even buying a walking stick or wheelchair.
Eleven years ago I felt that I was finally getting my life on track after spending a year and a half learning how to enjoy being single. I had an interesting new job that was challenging me and I had just met the man who is now my partner. I was taking part in amateur dramatics which meant rehearsing two-three nights a week and I was working a couple of nights a week in a pub to help pay off some debts I had accrued during my split with my ex. I was on the go constantly and had a tiring but fulfilling life.
Within six months everything changed. I had become pregnant and it wasn't a normal pregnancy, it was an ectopic pregnancy. After several weeks of going back and forth from the hospital almost daily to have blood tests done they decided to operate and they removed the pregnancy and one of my fallopian tubes. After the surgery I was off from work for 6 weeks and then was told to only go back to work part time. My new employer had been reasonably patient but my work hadn't really been tackled in my absence so I didn't really go back to work part-time, despite my resolve to not overdo it.
Instead of getting better over time I seemed to be getting worse. I was having incredibly painful periods that caused agony for around 2 weeks out of every 4. I was struggling with my work load and I began to sink into depression. In the end, my employer asked me to leave as they couldn't afford to have me there only every 2-3 weeks out of 4 and to have me struggling so much when previously I had motored through the work and been extremely competent. They had hired one woman and ended up with a 1/3rd of one, within 8 months.
Within 2 years I had been diagnosed with endometriosis and treatments were started. I also got counselling and I thought things were looking up. The pain was becoming less after about the third different set of treatments and I was feeling much more together. I was starting to feel like I could possibly start looking for work again once I had built up my stamina. I was doing well on this front when I suffered a ruptured appendix. It knocked me for six. The wound got infected and I became quite ill. It took months to recover from this surgery. Just as I thought things were getting back on track I started to experience extremely bad pain. Worse than I had experienced before, in my abdomen. I eventually had a laparoscopy to discover that I was suffering from adhesions, which are straps of scar tissue that stick to your internal organs and often pull them out of shape.
I was scheduled for another key hole procedure in a few months to remove the adhesions. Within 6 months the adhesions had grown enormously and the surgeon ended up taking 5 hours to remove all the scar tissue that had wrapped itself around my insides. I felt so much better within a few weeks of this surgery because my insides were all untangled. I still experienced high levels of pain which were due to the damage that had been done over the years to my nerve tissue through operations and constant pressure of adheisons and endometrial cysts. I was told that this pain was never likely to go away.
Despite the unravelling of my insides, I couldn't sit upright for longer than 20 minutes without feeling sick with the pain, so going out was a very rare occurrence that required much planning and reconnaissance on my behalf. I certainly couldn't stand up, unaided, for longer than about 10 minutes without my legs giving way because of the pain. It wasn't unknown for me to lay on the floor during social occasions because I couldn't do anything else to ease the pain.
It was at this point that I decided that I needed help. I decided to apply for DLA, mainly so I could have a Blue Badge. I was really unable to walk very far without collapsing in pain. I was fighting the use of a wheelchair but eventually decided that I needed one for when I went anywhere for longer than an hour or so.
I applied to DLA and was rejected. I decided to appeal because I knew in my heart that I was eligible for DLA and was surprised that I was rejected. I had read that I stood a much greater chance of winning my appeal if I attended the tribunal. I turned up to the tribunal and I was asked questions and I won my appeal.
As I had to wait 6 months for the appeal to be processed I had a substantial back payment which I used to buy a second hand mobility scooter. This became my best ever purchase. I could get around my local vicinity without having to get help. I became independent again. I decided that I needed to learn to drive and used most of my DLA to learn to drive an automatic car because I couldn't manage the clutch on a manual. I learnt to drive within 6 months and I then got a car on Motability which completely transformed my life. I could pop to the shops. I could take a short trip to a friend's house, I could even drive myself to see my family 90 miles away.
Within a year though, I had to give up my car because my pain had increased to such levels I had to increase my pain killers to very high dose. I didn't feel safe driving with that amount of drugs in my system, to be honest I didn't feel safe sitting still with those level of drugs in me. I've mainly got used to those drugs now and have even added different pain killers to the mix.
I've had another batch of adhesions removed since then and I've had to give up more and more of my social activities.
I have also had to reapply for DLA twice since my first application. I get it awarded for 2 years each time, as I have what is considered a variably condition, though as far as I can see it has only varied by getting worse. The second application I made was also rejected and then appealed successfully. My third application actually went through first time. I was stunned at not having to appeal because I had got so used to having to jump through many many hoops to get what I was entitled to.
I totally rely on receiving my DLA now. As I am unable to drive because of my drug intake, I use my DLA to pay for taxis. Taxis are my sole method of independent transport. I always have to have at least £20 in my purse so if I get stuck anywhere I can ring for a taxi to get me home. In order to get to a hospital appointment it can cost me around £15-£20 to get there and back depending on traffic, and the same if I need to go into town to buy anything.
My scooter has been replaced since my original purchase because the old one blew up. It is so scary being stranded in the middle of nowhere with a broken down scooter. Thank heavens for the kindness of strangers. So my DLA also pays for parts replacements and repairing punctures.
I have a rollator now, rather than a stick which helps keep me walking. It cost £175. I can sit down and rest when there is no other seating available, for example between the door of the hospital and the clinic. My wheelchair is no good for when I'm on my own as I am unable to propel myself. I have a step for getting into the bath (£40) and seat for sitting down while I shower (£30). I have a heat pad (£45) which I can plug into the wall when I'm at home and the heat helps with the pain. When I am away from home I use adhesive heat pads but they are not renewable so I can get through quite a lot. They cost approximately £4.00 for a pack of 3. I have to pay £10.40 a month for my pre-pay prescription but I'm not allowed to use it to buy paracetamol or lactulose, both of which I need. DLA helps pay for these costs.
DLA helps me have some degree of independence. I don't have to ask my partner to make sure I have food in the house before he leaves for work, because I can go to the local shop on my scooter. I don't have to ask people to give me lifts if they want to see me because I can get a taxi to them. I can get in and out of the bath without asking my partner to help me, because I have a step with a hand rail.
Without DLA I would be trapped in my home. I would have my scooter until it got a puncture and then I wouldn't be able to afford to pay the £45 to have it repaired. I would slowly and surely sink into depression again as I faced spending all my time alone except when my partner came home. It would put enormous pressure on my partner, who already shoulders the costs of running our home and does all the chores around the house. He would have the sole responsibility of cheering me up. I don't think he would be able to do that for long without becoming depressed himself.
It is a hard and lonely business being disabled, not to mention expensive. DLA enables me to feel that I am able to join in with my friends and family to a degree that I wouldn't be able, were it not to exist.
Eleven years ago I felt that I was finally getting my life on track after spending a year and a half learning how to enjoy being single. I had an interesting new job that was challenging me and I had just met the man who is now my partner. I was taking part in amateur dramatics which meant rehearsing two-three nights a week and I was working a couple of nights a week in a pub to help pay off some debts I had accrued during my split with my ex. I was on the go constantly and had a tiring but fulfilling life.
Within six months everything changed. I had become pregnant and it wasn't a normal pregnancy, it was an ectopic pregnancy. After several weeks of going back and forth from the hospital almost daily to have blood tests done they decided to operate and they removed the pregnancy and one of my fallopian tubes. After the surgery I was off from work for 6 weeks and then was told to only go back to work part time. My new employer had been reasonably patient but my work hadn't really been tackled in my absence so I didn't really go back to work part-time, despite my resolve to not overdo it.
Instead of getting better over time I seemed to be getting worse. I was having incredibly painful periods that caused agony for around 2 weeks out of every 4. I was struggling with my work load and I began to sink into depression. In the end, my employer asked me to leave as they couldn't afford to have me there only every 2-3 weeks out of 4 and to have me struggling so much when previously I had motored through the work and been extremely competent. They had hired one woman and ended up with a 1/3rd of one, within 8 months.
Within 2 years I had been diagnosed with endometriosis and treatments were started. I also got counselling and I thought things were looking up. The pain was becoming less after about the third different set of treatments and I was feeling much more together. I was starting to feel like I could possibly start looking for work again once I had built up my stamina. I was doing well on this front when I suffered a ruptured appendix. It knocked me for six. The wound got infected and I became quite ill. It took months to recover from this surgery. Just as I thought things were getting back on track I started to experience extremely bad pain. Worse than I had experienced before, in my abdomen. I eventually had a laparoscopy to discover that I was suffering from adhesions, which are straps of scar tissue that stick to your internal organs and often pull them out of shape.
I was scheduled for another key hole procedure in a few months to remove the adhesions. Within 6 months the adhesions had grown enormously and the surgeon ended up taking 5 hours to remove all the scar tissue that had wrapped itself around my insides. I felt so much better within a few weeks of this surgery because my insides were all untangled. I still experienced high levels of pain which were due to the damage that had been done over the years to my nerve tissue through operations and constant pressure of adheisons and endometrial cysts. I was told that this pain was never likely to go away.
Despite the unravelling of my insides, I couldn't sit upright for longer than 20 minutes without feeling sick with the pain, so going out was a very rare occurrence that required much planning and reconnaissance on my behalf. I certainly couldn't stand up, unaided, for longer than about 10 minutes without my legs giving way because of the pain. It wasn't unknown for me to lay on the floor during social occasions because I couldn't do anything else to ease the pain.
It was at this point that I decided that I needed help. I decided to apply for DLA, mainly so I could have a Blue Badge. I was really unable to walk very far without collapsing in pain. I was fighting the use of a wheelchair but eventually decided that I needed one for when I went anywhere for longer than an hour or so.
I applied to DLA and was rejected. I decided to appeal because I knew in my heart that I was eligible for DLA and was surprised that I was rejected. I had read that I stood a much greater chance of winning my appeal if I attended the tribunal. I turned up to the tribunal and I was asked questions and I won my appeal.
As I had to wait 6 months for the appeal to be processed I had a substantial back payment which I used to buy a second hand mobility scooter. This became my best ever purchase. I could get around my local vicinity without having to get help. I became independent again. I decided that I needed to learn to drive and used most of my DLA to learn to drive an automatic car because I couldn't manage the clutch on a manual. I learnt to drive within 6 months and I then got a car on Motability which completely transformed my life. I could pop to the shops. I could take a short trip to a friend's house, I could even drive myself to see my family 90 miles away.
Within a year though, I had to give up my car because my pain had increased to such levels I had to increase my pain killers to very high dose. I didn't feel safe driving with that amount of drugs in my system, to be honest I didn't feel safe sitting still with those level of drugs in me. I've mainly got used to those drugs now and have even added different pain killers to the mix.
I've had another batch of adhesions removed since then and I've had to give up more and more of my social activities.
I have also had to reapply for DLA twice since my first application. I get it awarded for 2 years each time, as I have what is considered a variably condition, though as far as I can see it has only varied by getting worse. The second application I made was also rejected and then appealed successfully. My third application actually went through first time. I was stunned at not having to appeal because I had got so used to having to jump through many many hoops to get what I was entitled to.
I totally rely on receiving my DLA now. As I am unable to drive because of my drug intake, I use my DLA to pay for taxis. Taxis are my sole method of independent transport. I always have to have at least £20 in my purse so if I get stuck anywhere I can ring for a taxi to get me home. In order to get to a hospital appointment it can cost me around £15-£20 to get there and back depending on traffic, and the same if I need to go into town to buy anything.
My scooter has been replaced since my original purchase because the old one blew up. It is so scary being stranded in the middle of nowhere with a broken down scooter. Thank heavens for the kindness of strangers. So my DLA also pays for parts replacements and repairing punctures.
I have a rollator now, rather than a stick which helps keep me walking. It cost £175. I can sit down and rest when there is no other seating available, for example between the door of the hospital and the clinic. My wheelchair is no good for when I'm on my own as I am unable to propel myself. I have a step for getting into the bath (£40) and seat for sitting down while I shower (£30). I have a heat pad (£45) which I can plug into the wall when I'm at home and the heat helps with the pain. When I am away from home I use adhesive heat pads but they are not renewable so I can get through quite a lot. They cost approximately £4.00 for a pack of 3. I have to pay £10.40 a month for my pre-pay prescription but I'm not allowed to use it to buy paracetamol or lactulose, both of which I need. DLA helps pay for these costs.
DLA helps me have some degree of independence. I don't have to ask my partner to make sure I have food in the house before he leaves for work, because I can go to the local shop on my scooter. I don't have to ask people to give me lifts if they want to see me because I can get a taxi to them. I can get in and out of the bath without asking my partner to help me, because I have a step with a hand rail.
Without DLA I would be trapped in my home. I would have my scooter until it got a puncture and then I wouldn't be able to afford to pay the £45 to have it repaired. I would slowly and surely sink into depression again as I faced spending all my time alone except when my partner came home. It would put enormous pressure on my partner, who already shoulders the costs of running our home and does all the chores around the house. He would have the sole responsibility of cheering me up. I don't think he would be able to do that for long without becoming depressed himself.
It is a hard and lonely business being disabled, not to mention expensive. DLA enables me to feel that I am able to join in with my friends and family to a degree that I wouldn't be able, were it not to exist.
Saturday 14 January 2012
38Degrees Emails
Well I just got a shock. I decided, because I was a bit bored to be honest, to have a look at my stats for this teeny tiny blog. I was gobsmacked because one post got over 500 hits. It was this post about my emails to 38Degrees. I simply couldn't understand why one of my blog posts could possibly get that many hits because this is a new blog and have hardly any followers. So I decided to look on the traffic source part of stats and I discovered this post that had created most of my traffic.
I'm on the Guardian website - ME!!! My partner called me, and I quote, "a proper grass root activist". Not that it seems to have done any good. I didn't hear back from 38Degrees so I decided to send my email again through their contact form on their website. Here is their reply.
Erm, I don't think they got the point, do you? I was so angry at this reply that I have ignored it. It has sat in my in box since before Christmas angering me every time I saw it.
I got another email from them a week or so ago asking for my support so I clicked on unsubscribe and when the box popped up asking why I was unsubscribing I ranted. I ranted big style and I forgot to keep a copy. I wish I had kept it because it was worthy of being kept if only to marvel at how much anger can be put into an email.
I am disgusted with 38Degrees and their attitude. They have provided no assistance to the sick and disabled campaigners who are nearly killing themselves to get the word out to the public about what is being done to their benefit system.
I have to wonder if now the Spartacus Report has gained publicity and the campaign has helped achieve some change in the Welfare Reform Bill via the House of Lords votes, 38Degress will climb on board and claim any further victories. They do seem to like the populist causes rather than the ones that will require them to really push and challenge the public.
I would love to know if anyone else emailed 38Degrees in a similar vein and what, if any, reply they received. Am I the only person who was fobbed off in this manner, or do they really not care about this issue?
I'm on the Guardian website - ME!!! My partner called me, and I quote, "a proper grass root activist". Not that it seems to have done any good. I didn't hear back from 38Degrees so I decided to send my email again through their contact form on their website. Here is their reply.
Hi Chrissy,
Thanks for getting in touch.
Don't worry, it's no problem at all that you're not able to make a donation at the moment. The team has no expectation that everyone will donate but do need to ask for donations so that 38 Degrees can keep on campaigning.
Thanks for being involved,
Cian & the 38 Degrees team
Erm, I don't think they got the point, do you? I was so angry at this reply that I have ignored it. It has sat in my in box since before Christmas angering me every time I saw it.
I got another email from them a week or so ago asking for my support so I clicked on unsubscribe and when the box popped up asking why I was unsubscribing I ranted. I ranted big style and I forgot to keep a copy. I wish I had kept it because it was worthy of being kept if only to marvel at how much anger can be put into an email.
I am disgusted with 38Degrees and their attitude. They have provided no assistance to the sick and disabled campaigners who are nearly killing themselves to get the word out to the public about what is being done to their benefit system.
I have to wonder if now the Spartacus Report has gained publicity and the campaign has helped achieve some change in the Welfare Reform Bill via the House of Lords votes, 38Degress will climb on board and claim any further victories. They do seem to like the populist causes rather than the ones that will require them to really push and challenge the public.
I would love to know if anyone else emailed 38Degrees in a similar vein and what, if any, reply they received. Am I the only person who was fobbed off in this manner, or do they really not care about this issue?
Thursday 12 January 2012
Welfare Reform Defeat for the Government in the Lords
Yesterday was a interesting day for me. It was the day that the House of Lords was voting on amendments to the Welfare Reform Bill. I decided that I had to know what was happening, as it happened, so I watched via Parliament TV, the live debate. You can read the transcripts of the debate here, the debate started at 3.44pm.
Watching the Lords do their work yesterday was illuminating. When we get letters from the DWP or see news reports, telling us things are changing, we always think of it as a "done deal". We learn about the changes after they have happened. This was the first time I think I've been aware of changes while they are happening, and been part of a process of fighting those changes.
I have to confess, that I found out things during the debate that I hadn't previously understood. Here, Lord Patel opens his speech with a clarification of how his amendment would change things:
This was an enormous relief for me personally, but does not change how important, at the very least, extending the time limit for people who are told they are fit to perform some work related activity. The thought of becoming blind or losing a limb and being told that I am fit for some sort of work and being told to find work and learn how to adapt to my changed circumstances, at the same time, fills me with horror. When the Government is busy telling us that these people won't be left without financial support, they are stretching the the truth somewhat. In my eyes £7,500, which is the maximum your partner or parent is allowed to earn before aid is removed, is not really enough to live on, even if you are fit and healthy.
The amendment relating to the time limiting factor of ESA is:
The results of all the hard work and convincing debate were 234 Contents and 186 Not Contents. Basically this means that 234 were "Content" to proceed with the amendment and 186 were "Not Content". This means that it takes out of the Bill that 12 months is the limit for receiving ESA in the WRAG. It means that the phrase "not less than 730 days" is put in instead. This means that the lowest time limit can be 2 years and that should the Government (whoever was in power) choose, they could take away that limit altogether without rewriting legislation.
I was stunned to see that the Lords agreed with me, that people who are declared fit for work, should be given enough time to adjust to their changed circumstances before support is withdrawn. I still believe that having an arbitrary limit on finding work if you are sick or disabled is wrong. I will continue to believe it is wrong until all employers actually look at a candidate without looking at their physical or mental challenges and only look at their skills and qualifications. The day this happens, is the day when a time limit should be applied to ESA for people in the WRAG.
I really hope that yesterday's loud statements from the Lords is actually heard by the Government, but I sincerely doubt it. I can live in hope though, because one thing this whole campaign has taught me is that anything is possible.
Watching the Lords do their work yesterday was illuminating. When we get letters from the DWP or see news reports, telling us things are changing, we always think of it as a "done deal". We learn about the changes after they have happened. This was the first time I think I've been aware of changes while they are happening, and been part of a process of fighting those changes.
I have to confess, that I found out things during the debate that I hadn't previously understood. Here, Lord Patel opens his speech with a clarification of how his amendment would change things:
My Lords, I shall speak also to Amendments 38A and 39A. These amendments oppose the introduction of a 12-month limit on the amount of time in which those in the work-related activity group, or WRAG, are able to claim contributory employment and support allowance, or ESA.I had been worrying about my own loss of benefits after 12 months, which I did not need to do as I have now been placed in the Support Group. The Support Group, does not have a time limiting factor on it, under the new legislation.
This was an enormous relief for me personally, but does not change how important, at the very least, extending the time limit for people who are told they are fit to perform some work related activity. The thought of becoming blind or losing a limb and being told that I am fit for some sort of work and being told to find work and learn how to adapt to my changed circumstances, at the same time, fills me with horror. When the Government is busy telling us that these people won't be left without financial support, they are stretching the the truth somewhat. In my eyes £7,500, which is the maximum your partner or parent is allowed to earn before aid is removed, is not really enough to live on, even if you are fit and healthy.
The amendment relating to the time limiting factor of ESA is:
Amendment 38: Proposed by LORD PATEL & LORD MCKENZIE OF LUTON
Page 36, line 34, leave out “365 days” and insert “a prescribed number of days which must be at least 730”Lord Patel was very eloquent and moving in his speech. Many fellow peers waded in, supporting him and demolishing the objections. It really moved me to see these men and women fighting the House of Commons on matters of how the worst off in the UK get treated. I think the comment by Lord Strasburger summed it up best for me:
My Lords, I fully support the Government's efforts to address the huge deficit which they inherited. However, my noble friend the Minister needs to explain why I should support this attempt to penalise some of the most vulnerable and disadvantaged people in our society for the greed of the financial services industry and the incompetence of the regulators. Do these sick and disabled people have the broadest shoulders, which we keep hearing about, to carry the burden of the cuts?These peers actually understand the the details of how this Bill is going to affect the sick and the disabled people who have to live with the consequences of this debate. Many peers quoted from letters they had received or articles they had read relating to individuals and how this would affect them. I really felt like these peers cared enough to work hard to discover what would be the right thing to do, rather than the political thing to do.
The results of all the hard work and convincing debate were 234 Contents and 186 Not Contents. Basically this means that 234 were "Content" to proceed with the amendment and 186 were "Not Content". This means that it takes out of the Bill that 12 months is the limit for receiving ESA in the WRAG. It means that the phrase "not less than 730 days" is put in instead. This means that the lowest time limit can be 2 years and that should the Government (whoever was in power) choose, they could take away that limit altogether without rewriting legislation.
I was stunned to see that the Lords agreed with me, that people who are declared fit for work, should be given enough time to adjust to their changed circumstances before support is withdrawn. I still believe that having an arbitrary limit on finding work if you are sick or disabled is wrong. I will continue to believe it is wrong until all employers actually look at a candidate without looking at their physical or mental challenges and only look at their skills and qualifications. The day this happens, is the day when a time limit should be applied to ESA for people in the WRAG.
I really hope that yesterday's loud statements from the Lords is actually heard by the Government, but I sincerely doubt it. I can live in hope though, because one thing this whole campaign has taught me is that anything is possible.
Monday 9 January 2012
I am Spartacus
Today a report was published. It is a report that has been researched, written by and funded by sick and disabled people and their carers. This report is called the Spartacus Report and it addresses the proposed change from Disability Living Allowance to Personal Independence Payments.
This report, which can be read in it's entirety here, has revealed some interesting facts.
This is how Boris Johnson's views were discovered. What appalls me about this report, is that it was needed at all. Why were sick and disabled people and their families forced to conduct their own research into something that the consultation process has hidden and twisted.
Sick and disabled people have been subjected to all sorts of lies and misrepresentations since this Government came into power, we have systematically been torn down so that we can be stuffed inside our quiet homes, where we can't disturb the fit and healthy. We are abused in the street because of our disabilities, so we are already afraid to leave the house, so removing our access to transport isn't going to make much of a difference is it? You can almost hear the cogs turning as they work out the best way to cut the benefit bill.
Well this time the cripples have not shuffled off to stand in the corner to count our blessings for being alive, the way the Government would want us to. This time we have had our gladiators fighting for us. Sue Marsh and Kaliya Franklin have swallowed their pain meds and dragged themselves into the arena. They, and others like them, have been battling tirelessly, not only to get out of bed every day, but to strive on our behalf.
They shame me that I have not done more. I donated a few quid to get the report printed and posted, but that was it. I've tweeted a bit and I've emailed MPs and Peers, oh and there is the odd blog, but it has all been done from the comfort of my own home. These women have struggled to face down our detractors and demand they get answers to the hard questions, and each time they were ignored or ridiculed, got up again and kept on going.
Our champions do this on our behalf because we can't. They do it because it needs to be done. I wonder how many people would do the same for their fellow human beings?
If you believe that sick and disabled people and their families have the right to be heard and not have their views twisted into a vague resemblance for politacal expediency then please email your MP. You can do this via the House of Commons Website. Please ensure that you include your name and address when you do so, to ensure they understand you are a constituent. A suggested email could read:
This report, which can be read in it's entirety here, has revealed some interesting facts.
- The Government broke its own code of consultation over the DLA reform
- The Government has entirely misrepresented the views submitted as part of the consultation, giving a partial and biased view.
- The Government claim that DLA must be reformed as claims have risen 30% in 8 years - the report has found that these statistics are entirely misleading and give a "distorted view"
- There is overwhelming opposition to the new benefit, Personal Independence Payments
- Some elements of PIP appear to already be going ahead, despite a rejection of the plans and before legislation has passed.
- The Government are repeatedly warned that proposals for PIP may break International and UK equality and Human Rights legislation
This is how Boris Johnson's views were discovered. What appalls me about this report, is that it was needed at all. Why were sick and disabled people and their families forced to conduct their own research into something that the consultation process has hidden and twisted.
Sick and disabled people have been subjected to all sorts of lies and misrepresentations since this Government came into power, we have systematically been torn down so that we can be stuffed inside our quiet homes, where we can't disturb the fit and healthy. We are abused in the street because of our disabilities, so we are already afraid to leave the house, so removing our access to transport isn't going to make much of a difference is it? You can almost hear the cogs turning as they work out the best way to cut the benefit bill.
Well this time the cripples have not shuffled off to stand in the corner to count our blessings for being alive, the way the Government would want us to. This time we have had our gladiators fighting for us. Sue Marsh and Kaliya Franklin have swallowed their pain meds and dragged themselves into the arena. They, and others like them, have been battling tirelessly, not only to get out of bed every day, but to strive on our behalf.
They shame me that I have not done more. I donated a few quid to get the report printed and posted, but that was it. I've tweeted a bit and I've emailed MPs and Peers, oh and there is the odd blog, but it has all been done from the comfort of my own home. These women have struggled to face down our detractors and demand they get answers to the hard questions, and each time they were ignored or ridiculed, got up again and kept on going.
Our champions do this on our behalf because we can't. They do it because it needs to be done. I wonder how many people would do the same for their fellow human beings?
If you believe that sick and disabled people and their families have the right to be heard and not have their views twisted into a vague resemblance for politacal expediency then please email your MP. You can do this via the House of Commons Website. Please ensure that you include your name and address when you do so, to ensure they understand you are a constituent. A suggested email could read:
Today a report has been published relating the reform of Disability Living Allowance. This report is available via this link: http://tinyurl.com/78erjru.
This report into Disability Allowance Reform has been written, researched and funded by disabled people. As one of your constituents, I am very concerned by its findings and the misrepresentation of disabled people that it exposes. Please will you read the report and support sick and disabled people in calling for a pause to Personal Independence Payments in light of this new research.
I look forward to your response,Then you could let your friends and family know about it via Facebook or Twitter (using #spartacusreport) or email. Please help get the word out into the public arena about what this Government have tried to do and hide from you.
Saturday 7 January 2012
ESA Awarded!
Well I got my phone call from the DWP this morning. A very softly spoken man called Mike rang me and told me that I had been awarded ESA and would be getting the Support Component - WOOOHOOOO!!
This decision has been hanging over my head since August and it has been horrible. But I have now been told that I will continue to receive the payment I currently receive under the Long Term Incapacity Benefit, but it will be called ESA. This means I won't lose any money, which is something I worried about until the Internet came to my rescue. I found an page created by the Disability Alliance which told me that I wouldn't lose money by being transferred. However, I have just read (item 16 on the previously linked document) that the benefit payment I receive will be frozen until ESA payments catch up.
I was also told that I wouldn't be reassessed for another 2 years, which is nice. However, if Cameron gets his way I'll only be receiving ESA for 12 months before being moved to means tested benefit.
However, I am not going to worry about that right now, I have a whole 12 months before I could lose my benefits. By my reckoning, that means I'll probably not worry too much for the first 6-8 months and then I'll become a nervous wreck about how I'm going to manage.
Isn't the current Government wonderful at helping us manage the stress and strains of living with a disability?
This decision has been hanging over my head since August and it has been horrible. But I have now been told that I will continue to receive the payment I currently receive under the Long Term Incapacity Benefit, but it will be called ESA. This means I won't lose any money, which is something I worried about until the Internet came to my rescue. I found an page created by the Disability Alliance which told me that I wouldn't lose money by being transferred. However, I have just read (item 16 on the previously linked document) that the benefit payment I receive will be frozen until ESA payments catch up.
I was also told that I wouldn't be reassessed for another 2 years, which is nice. However, if Cameron gets his way I'll only be receiving ESA for 12 months before being moved to means tested benefit.
However, I am not going to worry about that right now, I have a whole 12 months before I could lose my benefits. By my reckoning, that means I'll probably not worry too much for the first 6-8 months and then I'll become a nervous wreck about how I'm going to manage.
Isn't the current Government wonderful at helping us manage the stress and strains of living with a disability?
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