Monday 21 February 2011

At long last

I have received a reply from Mr Mundell. I shall be considering my response over the next couple of days.

The length of time it took Mr Mundell to respond was 'due to an administrative oversight."

I am not reassured by the response I've received.

Sunday 20 February 2011

The endless catch 22 of long term illness

1)If I am cheerful I must be well.
If I am cheerful I am coping with my illness. It doesn't mean that I am suddenly cured, or that I am experiencing no symptoms. I am a cheerful person by choice because I believe fully that my circumstances are not what shapes me. My reaction to my circumstances is what I control at all times.

2)If I am able to do things for myself I must be well.
If I am able to do things for myself it is because I have worked out how to get around my challenges to keep going as best I can. If I am seen doing something on a better day, that doesn't mean I can suddenly do it all the time.

3)If I look miserable I must be depressed.
on a worse day I get monosylabic, I find it difficult to smile from muscle pain. My face freezes in a half frown from muscle twitches, so I must be depressed. CBT is the only answer to that, and it will 'cure' me. We all know that this is not true. I'm still well able to crack a deadpan joke, or laugh even if I can't smile, I'm still not depressed because I won't allow myself to become depressed.

4) If I'm loosing/gaining weight I must be over/undereating.
I get severe nausea sometimes as a result of the dizziness and feeling like I'm on a rollercoaster and the whirlitzer and a ship in high seas all at the same time. Sometimes I can manage to eat, other times I can't. Sometimes I can cook, other times I can't. Sometimes there is 'grab food' available to me, left by kind souls who understand. At other times I don't even have the ability to microwave something for myself. Today I might be able to grip a foil tear back to open a packet, tomorrow I might not. Today I may forget to eat, tomorrow a friend may come by and make us both something.

5) If I can sit at a computer I must be well.
Sometimes all I can do is sit at a computer, wrapped in a blanket in my reclining chair. I actually lost part of my care package over this one. If I had been sat in front of a telly wrapped in a blanket the carer wouldn't have reported that I was able to do things and refused, but because I was sat in front of a computer I must be fit. I couldn't have focused on the tv screen to save my life. The computer and simple games helped me focus out of the spinnny dizzy nauseous hell and let me recover enough to be functional.

6) If I can write a blog I must be well enough to work.
Oh this is a big one, a real slap. I have been fit enough to write for the last two or three days, but I've not been fit enough to make myself something to eat for, what, eight days now. I'm recovering from a sinus infection so my levels of dizziness, percieved motion, nausea, ability to place self in space and general pain and tiredness is off the scale. Coupled with the fact that I've rarely been able to eat this last week so I've not been able to take the 'after food' pain killers. pain levels are at level ouch. Tramadol is a life saver for the pain, but I wouldn't have been able to drive or operate machinery. If I went out anywhere just now exhaustion elephants would land on me from a great height.

7)If I look better I must be fit to go do stuff.
Lets go out somewhere, you look ok Mad, you must be feeling up to it. Sorry no, having a 3 elephants day, no spoons for anything else. What do you mean, '3 elephants?' Imagine that whatever you're doing you have from one to ten large pink elephants standing on a platform on your back, giggle about this; it is supposed to be funny. These are 'exhaustion elephants' and they make everything tougher to manage. If you do too much, more of them will jump on, if you do too little the ones you have sitting won't go away so you have to balance how much you do. If I say I can't manage, seriously, I can't manage.

Practicalities.... or oh wheely?

Working out how to achieve something is sometimes harder than doing it. I come across this every day while surviving M.E., the quick mental flash down (for given values of quick) that allows me to work out if I'll be able to lift mug from table to mouth and back again. Every movement is planned in advance, nothing left to chance, even walking a few steps unaided to get from sofa to loo on a better day is preceeded by a visual floor check and a mental tally of oft-used hand holds on chair wall and sideboard.

The OT has visited since I wrote my Letter to Mr Mundell in November but it hasn't really made huge leaps of change. A kettle tipper which actually made me more liable to spill water because of the angle. A set of legs to raise my sofa which I love because it does make it easier to get in and out. A special seat for the loo to save me sitting so far down that I get stuck, or misjudging and bashing the loo seat - I've broken more loo seats than I care to remember.

The one thing that has made a difference is my wheelchair. I was pleased as punch to finally get the wheelchair I'd been asking for since 2005, although I knew that in reality it wouldn't make all that much difference. Does that sound contradictory and ungrateful? Should the wheelchair not make a HUGE difference in my ability to get around? Am I being negative and proving that I do in fact need CBT?

In the house the wheelchair is pretty much useless. My house is not wheelchair friendly and I just can't use it to get anywhere. I struggle on as I always have. That doesn't mean it can't be used to get me out of the house though does it?

Let me explain a little about the practicality of getting out and about in a wheelchair. I'm a fair to competant driver when I'm fit to drive and I am seriously tough on myself, always erring on the side of caution, to such an extent that at the moment I probably haven't driven for over 6 weeks. I drive a little VW Golf that I love dearly and I am Blue Badged which means I can park close to where I want to go.

So I decide I'm fit enough to go out somewhere, I'm ok to drive. My first hurdle is getting my wheelchair from my kitchen into the back of my car. And there I fail unless I have help - a Big Society (What rubbish! My neighbours and friends have been helping me out for years) helping hand from a neighbour or friend or even the postman. From there I fail again unless I have help because my garden gate must be opened and I can't do that myself. Then I drive to wherever I'm going, lets say I'm going to Dumfries to buy something nice to send to my Dad for his birthday in May (and I'm not using shopmobility this trip just to make a point) I get to Dumfries and Park. There I'm stuck until some kind person lifts my wheelchair out of the back of my car and sets it up for me.

And then what? I can't move myself in it. It gets far to sore on shoulders and arms, my grip fails, I end up just as chalky white, dizzy, sick and exhausted as if I were walking. The physical effort of pushing myself any distance at all is too much. So I am just as trapped as I was before I got my wheelchair when I'm on my own - remembering I have no carer - there is a difference though. When friends take me out I don't have to spend energy walking around. I can be pushed, even where I can't get a shopmobility motorised chair, and that has made things a little easier for me.

How much does shopmobility make a difference? Actually it makes a big difference. But I still can't do it solo very often, the tolls of driving and running round in a motorised chair is still often too much, but it is in fact my only way of getting to go out solo. As much as I love my wheelchair it hasn't allowed me any more independance than I had before I got it.

Here is where I would usually come up with a solution, an answer. But this time I have none. The DSS won't fund a motorised chair. Social Services won't move me into different accommodation. Even if I had a motorised chair I still couldn't lift it in and out of the car and the days on which I am fit to drive are unlikely to increase. So there you are and here I am. Reliant on a network of friends and supermarket deliveries for everything I need.

Saturday 19 February 2011

It's all in your head...

I am swimming through treacle, my sinuses a mess and the dwarves that have taken up residence in my head will not stop mining. Shiver then sweat then shiver then sweat. I can't focus on words they swim in and out like a school of fish in perfect 50,000 part motion harmony, yet the motion sickens me, my eyes run constantly the skin around them cracked and stinging from the excema that my own tears always raise. My body reacts to the slightest bump with rainbow bruises, I am marked as loved by dog, and my lack of awareness of self-in-space means I bounce off doorways, walk into tables, put my feet into empty air that I thought was floor and stumble. Solid ground like sponge under my halting step. I am old at 40 years, quavering, infirm. The weight falls away from me, a dress size gone in two weeks. It could just as easily be pilling on, but that's because "I eat too much" and I lose weight because I'm "not eating properly". I know that this is *just the ME my dear, no point in giving you antibiotics, unless you get a secondary.* The mucus flooding the back of my throat from my infected sinuses tracks the infection on, marching like green goblins set to invade. Temperature spikes again and I am left sweating and shivering and helpless washed up on the white shore, tangled in bedding that is sodden with sweat, unable to reach out for the water bottle and tablets that bring relief for four hours out of six, wracked with spasm and cramp muscles a-twitch like St Vitus' victims.

"she's not really ill. M.E doesn't exist, she's just lazy, wanting all the money she can get out of the government".
 

Dear Mr Mundell...

Mr Mundell replied on 21/02/11. Thank you to all who passed this on.


On the 17th of November last year I emailled your office as a constituent of yours.
This is my original email;

I grow more and more worried by the proposed benefits cuts for those
people like myself who are unable to work at all. I have M.E,
diagnosed as such in the late '80s and although there have been long
periods of time since then that I have been able to work, or had the
support of someone who was able to work I am currently not fit for
work. My situation is such now that I will probably never be able to
hold down a job, and trying to do so would worsen my condition to such
an extent as to make me more of a drain on the NHS than I am currently
on the benefits system.

I get no official outside help looking after myself, and looking for
someone to become a full time carer for me is necessary and has been a
constant concern since my daughter left home to attend college in
August. It is now well nigh impossible for me to find that care as
carer allowances are under threat. I have no idea where to turn now to
find the help and care I need on a daily basis. I get no support
whatsoever from social services and haven't for a very long time. I
get no help in provision of aids to help me live independantly, no
offers of items that I need and can't afford to buy for myself. Not
even any help with getting out of the house and without much contact
with the outside world. If I am not fit enough to drive I simply
cannot get out of the house.

I worry constantly about how cuts in DLA and housing benefit will
affect my ability to live independantly. I am a 40 year old woman who
has struggled through thick and thin to maintain this level of
normality, through years of having benefits suddenly removed without
warning that amassed debts which I have only just managed to repay as
a result of getting my DLA reinstated after a 2 year fight that nearly
cost me my sanity as well as my health.

The thought that it is now about to start again is actually making me
cry. I can't face it again. I was just about back on an even keel and
now I'm facing yet more financial crisis.

How can I cope with being forced into the position of having to work
(which I simply can't do) or starve and loose my home? Where would I
go? How can I live? How on earth will I survive? This situation is
totally hopeless and I have lost all faith in any government helping
me. You as my MP have let me down in the past when I was facing crisis
and you didn't even bother to respond to my email. You are letting me
down again by not fighting tooth and nail to ensure that people like
me do not continue to slip further through the gaps in this ripped and
tattered net they call a 'welfare state'.

If I were to go into work I would have constant sick days. Constant
days where I would not be fit enough to drive myself into a place of
employment. Constant days where the pain killers I must take would
make me unfit to operate machinery. Constant days where I would do no
more than sleep and shiver and sweat and ache as a result of having to
do more than I am able to do. I would be sacked from any paid
employment and it would not be because I wasn't trying to do the job,
it would be because I am unable to.

I would dearly love to be able to work, earn money, have a career and
the self confidence and success that goes along with it. I know I am
not able to do so, I have accepted that. As depressing as it is for
someone intelligent and articulate to admit I can achieve no more than
I have achieved. When getting out of bed in the morning is like
climbing Everest small successes have to suffice.

For me right now my health is 'as good as it gets' and that isn't
good. I struggle to do the most basic tasks for myself and subsist on
the sporadic help of friends and neighbours. I have already been
abandoned by all other care professionals except for my GP, don't
abandon me when it comes to making sure that I get the money I need to
survive. I am not living a 24/7 party life here. I have had no
holidays in years. I exist on the most basic of food. My central
heating is set to 60 degrees so as to keep my heating bills down to a
level I can nearly manage. I have few luxuries. You would be welcome
to visit me in my home and see what I've managed to carve out for
myself after several years of susbsistance level living.

Don't take this last shred of any hope of a life away from me.

I recieved a response From a secretary working in Mr Mundell's office, this is what she wrote;

I am not aware of you being in touch with us previously and I cannot locate your name in any of my previous files so I can only sincerely apologise that you did not receive a response to your previous email requests.

Below is some information regarding where you might find some of the extra support that you require, if not I hope it gives you a start at least:

http://www.dgme.co.uk/ - Dumfries and Galloway ME Network

http://www.meassociation.org.uk/ - M.E Association Scotland

Care and Repair Services which can help with the supply of aids and adaption’s to home owners and private tenants and can be accessed through http://www.dumgal.gov.uk/index.aspx?articleid=7979 a referral from Occupational Therapy is the way to take this forward.

Home heat Helpline 0800 33 66 99 – help for vulnerable customers

And finally your local Citizens Advice may be able to assist you further with regard to getting the best heating tariff and making sure you are getting all the benefits and help you are entitled to.

I hope I have been of some help but if there is anything further specific that I can do then please do not hesitate to call or email me directly. As I said David receives hundreds of emails per day so emailing me directly will speed up your response.

Kind regards

I was astounded - this patronising young woman had clearly not understood a word of what I had been trying to ask of my MP. I was totally furious and that anger made me produce more words per minute than I have managed in a very long time;

The M.E association in D&G and the ME association in Scotland (with
whom I have been involved for years) cannot cure my condition and make
me fit for work. Nor can they vote against the benefit cuts. My MP is
the only one who can do that.

My local citizen's advice have assisted me in fighting to have my DLA
reinstated. I am claiming all I am entitled to. They can't stop the
benefit cuts that mean that my financial situation will once again go
to hell in a handbasket. Unfortunately the unit that deals with making
sure that people aren't 'fuel poor' has been cut due to lack of
funding. My MP is the one who can take action to help make sure that
these services are not cut further.

I pay as little as is humanly possible for all my utilities. The
problem is that I don't have enough money because the benefits I
already get are not adaquate and are ABOUT TO BE CUT FURTHER. My MP is
the only one who can take action on my behalf on this matter.

Home Heat is a great service for those that rely on gas and
electricity. I rely on coal, logs and heating oil. unless that service
has changed since my last contact with them, they can't help me.

Care and repair services cannot provide me with transport to and from
a pool for the hydrotherapy my GP prescribed for me 4 years ago which
I cannot attend as transport is not provided. Care and repair services
can't do my housework, or help me dress or bathe. Care and repair
services can't make me a cup of tea and help me drink it when I can't
sit up. Care and repair services can't help me. If they could I would
have no care needs. I have been referred to the OT yet again, I have
been waiting for a month for an appointment so far. Care and repair
can't help with that either. My MP is the man who can take action on
my behalf and try to get this changed.

How dare you presume that I know so little about my condition and the
help that you believe is out there for me. I have gone though all of
these channels. The care and support I require is NOT AVAILABLE TO ME.
If it were I would not have written to my MP.

My major concerns that you have not addressed is that benefits are
being axed. I'm facing a fight to prove once again that I cannot work,
assessments which I am 'planned to fail' and a withdrawal of benefit.
I am not recieving the care I need at the moment and further cuts mean
that this will only get worse. You have addressed none of these
concerns and to be blunt if I had wanted to speak to a secretary I
would have written to one. I wanted to speak to my MP - the man who
supposedly represents me - and have these real issues addressed.

What really annoys me is the cheerful 18th birthday card my daughter
recieved from Mr Mundell, trying to be ever so nice in order to buy
her vote. What has he ever done to help me OR my daughter through all
the years she was my unpaid carer?

It would be best perhaps if you didn't respond. I would however like
this email to be passed to him as well as my original. I'll take my
chances waiting for Mr Mundell to get back to me. I'm even less
inclined to vote for him now.

She replied, as patronising as ever, promising that I would indeed get a response from Mr Mundell. I have not as yet received that response some THREE MONTHS later.

So Mr Mundell, I've published this correspondence with your office in the hope that some publicity might make you respond. I shouldn't have to do this - I am one of your constituents, I do have the right to your attention.

Will you help me now?

Absolute power

The last time it happened the GP had insisted I have my flu jab the week before. I was lying on my sofa wrapped in my furry blanket with a high temperature, shaking so hard my teeth were rattling in my head. The phone rang.

"Hello" I croaked,

A bright cheery plastic call centre voice spoke, "Ms Witch?"

"My name is Mad, I don't use a title"

"Oh. Sorry, Mad. I'm afraid there's a problem with your direct debit payment." I sat up, groaning. God damn it not again.

"I'm sorry about that." I said. "The DSS has probably suspended my benefit again. If you give me a few hours I'll try and get things sorted out."

I have a plan for when this happens, because it's happened so often I know how to deal with it. The Government giveth and with one press of a button the Government taketh away. They can stop the money you get at any moment, the money that's supposed to be in your bank at a certain hour on a certain day to allow you to pay the direct debits that are scheduled round that payment is just... not there.

Step one: Phone the bank. The voice recognition software doesn't recognise what I'm trying to say to it because my voice is so broken. Ask them to put an emergency overdraft on my account and not to bounce anything else. Luckily I have a good relationship with my bank manager. I earned a decent wage once upon a time.

Step 2. Begin the endless rounds of phoning to find out why I suddenly have no money. This should be easy, I am disabled, on benefits. I should be protected, right? There should be a single contact point that I can reach that allows me to speak to a human being who is on my side.

I don't know which benefit has been stopped, or how long ago - I had a little bit of money in the bank saving for Christmas and because I've been so poorly after my flu jab I haven't been anywhere to need money. First stop Income Support, call centre number unavailable on the web site. I spend half an hour trawling through to find it. I'm no longer dealt with by my local job centre because I claim as a disabled person, not as long term sick or as a single parent.

I take more painkillers and find the computer screen floating in and out of focus in front of my eyes. I begin to shake again as my body reacts to activity. I wake up an hour later slumped over the keyboard and try to focus again

I finally mange to find a human being who can tell me what's happening. My money has been stopped because Housing Benefit suspect that I had someone living with me paying rent some 4 years ago. My stunned silence must have shocked the girl in the benefits office into a little bit of humanity.

"Is there any change in my circumstances right now that would warrant my benefit being stopped?"

"Well, actually, no." She said

"So why has my benefit been stopped, without warning, over an alleged incident from 4 years ago?" I asked in a hoarse whisper, my voice had about given out by this point.

"Um." said the official voice, and again, "Errrrrm...."

"So can you restart my benefit while the Housing Benefit department investigates this alleged overpayment, assured that if I have recieved more benefit than I'm entitled to, you can take the overpayment out of my benefit in the future?"

"Errrmm...." came the voice again, "Erm yes, I suppose we can do that.." I glanced at the time, I didn't have long to phone the offenders who'd started this particular F.U.B.A.R.

"That's fantastic, you have a lovely day now, thank you ever so much for your help" I croaked as gushingly as I could manage, plastic smile plastered to my lips.

I sighed and braced myself for the Housing Benefit call. This one was a little longer and more complex. Suffice it to say that an old friend of mine had decided to raise his head and cause me trouble by phoning benefit fraud on my behalf yet again. I'm one of those disgusting scrounging winging disabled benefit scroungers, so I am in fact fair game.

I hung up the phone, benefit re-instated. But that would have cost me dearly. Overdraft arrangement fee, Direct debit return fee. Interest on unauthorised borrowing. At least my rent hadn't bounced that time.

I think that time it took me three weeks to recover from the flu jab plus the enforced activity of sorting out money. The stress of seeing money due out of your account and no way to pay it is ... horrible. It chews a gaping hole in your stomach because this time, this time it might not be ok, this time it might just be permanent, this time they might not believe me innocent, this time someone might say 'there's no smoke without fire - look how often this case has been investigated, she must be shamming' This time the bank might say no and the horrible downward spiral to loosing my home, my belongings and any dignity I have left might have started.

But this time it was ok again. Next time it might not be. The little bit of money I had put by for Chirstmas had all gone though.