Monday, November 08, 2010

Behind The Scenes

I think I'm having a breakdown. Sounds dramatic doesn't it? To be frank, it feels rather dramatic too. I'm physically disabled and usually, aside from the psychological issues commonly found amongst those misdiagnosed as malingering attention seekers I don't usually have any significant mental health problems. But at the moment I do. 

I started to get more sick than usual a few weeks ago. Mid The Broken Of Britain launch I was hugely optimistic that for me personally, things were coming together on the work front and that the prospect of being able to work from home was a realistic one. A week of putting in the equivalent of full time hours, all work done either from my bed or lying on the sofa made it very obvious that it wasn't a realistic plan, although I am still hopeful about working part time from home. Fortunately I figured this out for myself before my friends had to intervene, but I've still had several stern lectures about how working from bed is not resting and one friend quite firmly informed me that if I did not stop he would be coming round and removing my laptop to enforce rest. I stopped. Vomiting and diaorrhea are difficult enough for all of us to deal with, but D&V for hours all night, every night tipped me over the edge. I could see the shock on my GP's face when I saw him last week even before he expressed his concern about the amounts of facial weakness and general rubbishness I was exhibiting. I have gastritis again, connective tissue disorders being one of the trigger causes. 

Despite tripling the dose of omeprazole I take the D&V has continued. So has the excruiciating upper abdominal pain. On the upside I do now have a really pretty collection of empty Gaviscon bottles, I'm swigging it straight from the bottle like a low class alcoholic and waiting to hear back from my GP about what to do next. I've had gastritis before and it's pretty horrible, but the additional impact of stress upon it is not pretty.

It would all be much easier without having to deal with the bureaucratic nonsense hidden from healthy people. The stress of my DLA reapplication is still hanging over me, my current award expires at the end of this month. This morning I phoned the DWP to see how things were progressing, as if the award is not renewed in time all my other benefits will be dramatically reduced until it is. DWP staff get a terrible press, but apart from 2 incidents which spring to mind I've always been treated kindly and respectfully in my dealings with them. I'd particularly like to thank Gemma for taking the time to check my claim this morning and to reassure me that it is with the decision maker so likely to be decided upon before my current award ends. She was also able to reassure me that there has been no request for additional information as I provided statements from my physiotherapist, my carer and my policeman friend as well as my GP's part of the form so a decision is likely to be made without my needing a medical.

I've had to avoid the continuing news about cuts to benefits, but yesterday it finally dawned on me that the reduction in Local Housing Allowance from 50% of average area rent to 30% of average area rent will put me at higher risk for homelessness than I'd previously thought. I'm very fortunate, I am educated and privileged and have friends who will not allow me to end up on the streets. Even with that security blanket I'm terrified. My current Local Housing Allowance is paid at £90.90 per week, and leaves me with approximately £80 rent shortfall to make up each month from my other benefits. If my calculations are correct, which I cannot bear to check as I want to believe I'm wrong, then my LHA will drop to £54.30 a week when the rate is changed to 30% of local rent. That will mean my rent shortfall increases from approximately £80 per month to nearly £250 per month. My need to be wrong on this is preventing me from confirming these details and I become hysterical every time I see Grant Shapps on TV insisting that it is wrong to pay £21, 000 a year in Housing Benefit.Whether or not it is wrong to do so is being used as a smokescreen to hide the true impact of the cuts to Housing Benefit.

Over the weekend I received a letter from 'Choose and Book' reminding me to make an appointment. Unfortunately I haven't received the first letter from C&B with a password and details so entered into one of those Kafkaesque bureaucratic nonsenses when I tried to phone for an appointment this morning. I spoke to C&B who informed me that without a password they couldn't make any appointment. I begged them to find a way around this, or to ask for an appointment to be made directly through my local hospital, but neither was possible. The only way I can make an appointment is to phone my GP's practice and they will have to provide the details of the password taking up their time and mine. Then I have to phone C&B back and will be able to make an appointment. Hopefully. As last time I tried to use C&B there were no available appointments, clinics or doctors and so I just gave up and threw the referral away. I'm tempted to do the same now but have no rheumatologist and desperately need specialist input as does my GP to deal with the current health problems. So, having already phoned my GP practice this morning to try and make an appointment I will have to waste more of their time chasing up this issue. The phone call with C&B left me shaking and exhausted. Were I elderly, or perhaps not diagnosed with anything and unsure if I really needed to see a specialist I would have given up and not bothered.

I have abandoned any hope of getting an appropriate wheelchair from the NHS. It is too difficult and a battle I have no energy to fight. Fortunately a fellow blogger is kindly putting together an application to the Motability Trust to see if I can get a power wheelchair or scooter from their charity. It feels like begging, and as my considerate friend applying for me knows only too well, I would never have been able to write such an application for myself.

Things are so dire that I have found myself considering approaching Social Services to ask for a support package. I was already terrified of Social Services having personal experience that there is no situation Social Services can't make vastly worse, so it is indicative of my current desperation that I would even consider it. I lost my care package when the local authority rationed care to critical and substantial only under the previous Labour government and given that care is set to be even more tightly rationed I know that even if I could deal with the trauma and stress that goes hand in hand with being assessed by Social Services I will not qualify for any support.

Of course, an appropriate wheelchair, a care package and less hassle in aquiring support from the NHS would all combine to make it more likely I could work from home. But, in this austere climate of cuts none of those things will happen, and like many disabled people who long to work I am pushed further away from that aspiration.

If assisted suicide were available in the UK I would be seriously considering that as an option. Not because I want to die, or because my medical condition is so disabling I can't bear to live with it, neither of which could be further from the truth. But purely and simply because the stress and fear of navigating the system during the Coalition's bonfire of the benefits is more than I can bear.


NB: For health reasons I am still not able to check/respond to my email properly. Apologies for the delay in replying. If anyone wishes to reproduce this post elsewhere please feel free to do so so long as there is a proper link back to this original blog. 

30 comments:

hilaryusfun said...

this is a horrendous situation and I'm so sorry. I have nothing useful to add, as have had similar experiences in all areas, but I can relate a bit to how you are feeling.

Sciamachy said...

Hang in there - we'll have these guys out by the next election.

Lisa said...

Hope you feel better soon...

From a fellow "straight from the bottle" Gaviscon swigger.

Iconic Imagery said...

I'm so sorry to hear this, and unfortunately am in a precarious situation myself. Don't watch tv so didnt realise who Shapps is... Just what the hell do they expect people to do who aren't as privileged as they are? Even working 2-3 jobs isn't enough to look after yourself where the few jobs actually are... and the only way to lower expenses is to find a way to move where the jobs aren't... which already have more than enough people out of work and stuck between a rock and a hard place... Very upsetting xxx

LceeL said...

Any more talk of 'Assisted Suicide' and I'm going to march right over there and whup you silly. Big time spanking. Take you over my knee.

Of course, then I'll feel bad and have to spend days trying to make you feel better.

Steve Sparshott said...

C & B's ridiculous. Last time I used it I was at the GP, and when he printed the referral for me the password was already on it, which made things more straightforward. You'd think.

And "choose"? There was only one "option" given. Anyway, I phoned, went through the process, and a few days later I received a letter saying an appointment had been made for me - at a different place and time.

Since then my GP has made a couple of referrals for me, so I didn't have to go through the process. He understands that my impaired speech makes it very hard for me to make phonecalls - maybe you can ask your GP to bypass all the red tape, as it's been such a problem for you.

BenefitScroungingScum said...

Please don't fret about the assisted suicide comments. I have no desire to die and certainly won't be acting upon it even if I did. The point I'm trying to make is that the stresses disabled people are being put under by the Coalition govt will result in suicides.

Cyran Dorman said...

Oh my gosh, I hope that things improve for you soon. Although my situation isn't as bad as yours I can identify with so much of what you've said here. Having to deal with the DWP and the NHS is frustrating enough to make me give up too. I've had to get myself a solicitor to deal with my dla claim and trying to see a specialist is like trying to get a meeting with God! Although I'm not able to offer much I can offer you my support and an ear should you need it. I know it's hard to keep fighting... but what other option do we have.

zellieh said...

You don't have to reply to this.

I just wanted to say, hang in there. You're a wonderful person and none of this is your fault.

Give yourself a treat of some sort. It seems counter-intuitve when we know money's going to be short soon, but in my experience, if spoiling yourself a bit will improve your mental health, it's worth it!

*hugs you carefullY*

Wife & Mother said...

I'm really sorry you feel this way and I hope you feel better in yourself soon. xxxx

Anthony Schumacher said...

Much love. xxx

The Goldfish said...

Hang in there, Bendy. I'm so sorry you're going through this, especially at a time when you've been working hard on the political stuff.

But you'll be pleased to know you're at least a bit wrong about your rent. It's not been 50% of average, but the 50th percentile - e.g. median average. So a cap at the 30th percentile won't be 30% of average rent*. Quite what it will be, I'm not sure, but the cut should not be so severe.

When you are strong enough, there's a spreadsheet off this article which actually gives losses per week for each local authority. For one bed places, at a brief glance, this is mostly £7 or £8 a week, especially in the North.

* Not that the median average means folks have been getting that much to rent places - you've been getting the median average to rent a one bedroomed property in a certain area, which will include all manner of bedsits at the top of high-rises and other places you couldn't physically get to, let alone live in.

Casdok said...

I do hope you are feeling better soon xxx

steph said...

Bendy

Whatever about the battle you've got on your hands at the moment in trying to get the benefits you need and deserve, I'm far more concerned about your physical well-being.

By any chance, have you been put on Nexium for the gastritis?

While awaiting a gastroscopy to confirm a stomach ulcer a couple of years ago, my GP prescribed Zoton for the pain. It worked beautifully.

After the stomach ulcer had been confirmed, the hospital put me on Nexium to settle the gastritis and heal the ulcer. It caused severe D&V.

My GP stopped it and put me back on Zoton 30mg which did the trick and healed the ulcer perfectly. I've not had any gastritis/symptoms of ulcer since.

I hope you can get the D&V sorted quickly as I know well how debilitating it can be.

Sorry if this advice is of little use to you. I just wanna help as I hate the thought of you living alone in that sort of condition.

(((hugs)))

Aoife said...

I was going to post the same thing as Goldfish, having fretted about this myself (and fretted is a polite understatement!). My LA sent a detailed document to the Houses of Commons on how much the change to 30th percentile will mean on average to different LHA room rates, and in different circumstances (families, the elderly, et cetera), which is very useful reading. Mind you, they sent the letter detailing how bad things will be, because they were asking to have their duty to house homeless people waived as the burden would be too much during the cuts, the utter w@nkers. But your LA might have done something similar. It also listed when each of the changes would be made, month by month and which claimant groups would have the changes rolled out to them first. Could be something to have a look for when you're having a slightly stronger moment. It took me 5 attempts to read through mine, just because anger and frustration welled up each time.

Other than that, I'm afraid I don't have much useful to add, except perhaps company. I'm having the same nightmare. DLA reassessed in early summer next year, around the time the other cuts will start to hit. If I loose my higher mobility, I loose my car, and thus my ability to volunteer at the community drop-in just down the road, my ability to do my own shopping, my ability to see people outside the house.

I've spent so much time busying myself trying to work out how it will affect other people, making arguments on other people's behalf, because whenever I start to look at how the changes will affect me, it's horrifying and I end up not bothering getting out of bed.


You're doing an amazing thing with this blog, and helping a lot of other people.

Good luck with the reassessment, I have my fingers crossed for you.

e said...

I hope you can get your physical situation sorted quickly as it sounds dreadful.

In the States, we don't have a DLA benefit. Just about everyone I know who is on disability gets denied at least once having in some cases to get a solicitor to secure their benefit. Then, they must wait two years to get Medicare, a government backed programme for elderly and disabled persons.

With the conservative turn in the recent elections here, work will probably be harder to find. I have been looking for two years and like you, I am educated and disabled and use a wheelchair.

If you need a chair, do not give up trying to get one. Here, without insurance, many people must rely on grants or donations, which are few compared to the need.
While your NHS may be problematic, the medical system here is often inaccessible to those without medical insurance, which is costly, and even at its best, everything is expensive and people often end up bankrupt due to medical bills.

I have read your blog for a while and haven't commented, but the thought of you struggling with all of this just got to me. We each have our own struggles, not the least of which is being treated with dignity.

Best to you, Bendy.

Anonymous said...

I am completely there with you on all this. Even done the all-night every-night vomiting, agony and Gaviscon dependence! But the worst is that I feel so much of me has already been irreparably crushed by the constant stress and humiliation. And that is only a further humiliation - that I have had parts of what I considered my essential personality taken from me by 15 years of disbelief and disgust. That anyone could do that to me, and that I could allow it to happen.

And running up against the realisation of your physical limitations when you had led yourself to believe you could do so much more is one of the hardest things. Even before someone comes along to tell you you're not trying hard enough and you just need to change your belief that you can't do things, when your problem is the exact opposite!

I've found myself saying a lot lately that I wish I could just go to sleep and never wake up. That is not me at all but I just don't know how to handle any more. But then I think how pleased the Government and other hideous right-wing mobs would be to save the massive £9000 a year total I get and I think I'd rather suffer anything than give them that satisfaction. Well, or at least go and do my dying very publicly and embarrassingly in front of a minister.

You have already done such important work in kicking off more scrutiny of the cuts and their real impact, though. I've seen your videos popping up all over the place online, sometimes quite unexpectedly, and I'm sure the emotional power of your voice (including your written one) has sparked off a bit more thought about things in a lot of people.

The only thing worse than being broken is that it's such heartlessness, thoughtlessness, selfishness, ignorance doing the breaking. I hope you feel more able to cope soon, and have less to cope with.

Lankylonglegs-Jo said...

Illegitimi non carborundum!

Hugs x you are not alone in your fight.

Jo x

Anonymous said...

I'm sorry to read you are feeling so low. I did wonder why you hadn't posted in a while and was a bit worried. I admire you so much; you have such great strength. I'm sure things will improve soon. I also have EDS, along with a rare autoimmune disease and I've been having a bit of a breakdown for a while now. Sometimes it just seems so hard, doesn't it?

Try not to worry too much about the LHA changes. As someone already mentioned, it isn't 30% of the average rent it is the 30th percentile, which means the new rate will be sufficient to fully cover 30% of the properties in the area.

Sue Marsh said...

I know exactly how you feel and seeing it in print like that is very powerful.
We've been overdoing it my dear. Take a rest, and I agree with Zellieh, treat yourself. Sod the cash and the benefits and the stress. Get the girls round or have a lovely movie night with champagne or order in your fave take-away.
It'll all still be there next week.
I'll keep fighting the fight for a while and you can take over again when I have surgery, lol
Just remember this, you're doing more than most healthy people do in a lifetime. You're brave and clever AND funny - a devastating combination.
Oh, and I'd like to link this to my blog, but don't worry about replying, just catch up when you can,

Sue Marsh (Diary of a Benefit Scrounger)

The Miserable Swine said...

I guess this is what Cameron meant when he said `We`re all in this together`: virtually every disabled person in the UK having to live in terror as we`re given the `Black Triangle` treatment.

Hang in there - there`s no way the Coalition / Axis of Evil is going to be able to destroy lives this way. I reckon ATOS will be found unfit for purpose and some backhander-scam will be exposed to regarding the government and the aforementioned.

Take care and *don`t do anything silly* :) x

Anonymous said...

My GP has put me on Nexium 40mg (or 2x 20mg per day) for GERD, I've found it much more effective than omeprazole. Best of luck

Achelois said...

BG i am not too well at the moment so this is short.

I hear all that you are saying and wondered whether your health would be affected whilst you took on the plight of the disabled as always forgetting your own.

Be kind to yourself, look after yourself.

I understand all that you say about wheelchair services; that alone has made me for the first time ever wonder whether my emotional wellbeing is as good as it should be let alone all the worry you are going through with money and the government and all that crap.

Thinking of you as always. I wish I could wave a magic wand and win the lottery and I'd give you money to make it better.

But instead I can only send my love and leave everyone else to say the other intelligent bits.

Take care BG. I sincerely hope DLA gets back to you soon without a break in award and I am thinking of you aware though that thinking of you is not enough.

I am thinking of you though and care more than you realise.

Take care my bendy friend. I understand.

Rest please.

xoxoxoxoxo

Veronica said...

Giant hugs my lovely friend. I am thinking of you. xxxx

Dave P said...

The estimate I've seen is that the new LHA will be about 80% of the old: I think it could actually be a bit less than that, but you're probably looking at something nearer £70 than £54. That's bad enough when the present allowance so often isn't enough even for the cheaper places available to claimants. It's a horrible measure that seems rooted in pure malice. Let's hope we can stop it.

Kim (frogpondsrock) said...

Oh sweetheart, lots of love to you xox

Anonymous said...

Far too picky about the type of disabilities you have taken on without permission. You think you are having a breakdown? there are many people who are far worse off than you - get a grip and stop the theatricals and dramatics.

We don't need you on a soap box standing up for us - we are quite able to do that ourselves - and we don't whinge and want sympathy and attention with our oscar winning breakdown posts.

Marjorie said...

BG, so sorry life is giving you such a kicking right now. (& hope you can ignore the troll)

hrafndot said...

Dear Mr Anon - get a grip yourself; run along and troll somewhere else, whydontyou!!

Atlanta cosmetic surgery said...

You have to restrict life in various ways to stay healthy.Good health depends on a healthy diet and also an exercising regime.this is a bad situation.Hope you come out of it soon.