Sunday, March 09, 2008

No special treatment

The recent pronouncement from the DWP on the subject of incapacity benefit came from investment banker David Freud who said 'there will be no special treatment for disabled people'.

I suspect the majority of disabled people like myself don't want special treatment as such, just some sort of understanding of how difficult our lives can really be. In light of that, this was an averagely bad day in my life.


I'm tired and sore so last night I made a conscious decision not to set my alarm, but to allow my body to wake as and when it was ready. Although I was in bed well before midnight and was exhausted, pain stopped me sleeping, then I was (as is quite normal) back and forth to the loo until just before 2am. Although it's most commonly known to affect the joints, Ehlers Danlos is a collagen disorder and so potentially affects any part of the body where there is collagen. Which is most of it. In my case that also manifests as having a particularly floppy and lax bladder and bowel.

I was awake again at 4am and 5.30am both times needing to get out of bed and go for a wee, then I slept until 9am when I went to the loo again and took my morning tablets. I was so tired I dozed until forcing myself out of bed around 11. Of course every time I have to get up to go to the loo I sublux and dislocate multiple joints.

11am. I need to go to the loo as soon as I get out of bed. Despite being in so much pain I'm barely able to move, I'm still for some inexplicable reason deeply shamed by getting out of bed so late on a weekday. Perhaps that is because I have taken on board the government's message that I should not be receiving any special treatment.

I tie hair my back and dislocate my shoulder doing so. I can't stand properly as my hips and SI joint are all subluxed and muscle spasms mean I can't relocate them.

I make it downstairs by going backwards on my forearms and feet. Putting the kettle on dislocates both wrists and shoulders. I'm less cavalier about this since tipping a pan of hot water on my hand last week. I cried, but hid that from surrogate mum #1 who happened to be in the house at the time. She was here doing the same tasks social services used to pay for until they said I didn't need any help and I started to pay instead. Anyway, it was running the scald under the cold water that hurt most.

I sit at the computer with my hot drink to read through some blogs. I use a gym ball instead of a chair as strong core stability is vital for those with EDS. Today mine is so poor I can't hold myself upright and keep slumping forwards and falling over. My bladder is irritable and I have to keep getting up to go back and forth to the loo. Every time I put weight on my right side my hip fully dislocates, today my left is playing up and won't go back in. I sort of trail my left leg, foot ending up pointing behind me as I go dangerously putting my weight through my right hip hoping my body will just go with it as I can trust that joint to go in and out of its socket each and every time but have no idea what the left will do. My knees pop out to join the party whenever they feel like it. Shoulders, wrists and elbows are randomly popped in and out of their sockets as I try to use my arms to get up.

I realise that it's one of those days that using the mouse dislocates my shoulder, and the gel mouse mat I've got is putting pressure through my wrist and making my hand numb. It's painful too. Must be resting on a nerve.

12pm I know I have to eat so I try to make some breakfast. A smoothie. Frozen fruit and a bit of juice into the blender. Easy you might think.

I pop both wrists out opening the freezer and trying to get the drawer open. This time fortunately I don't drop it on my feet as that really hurts. I've got severe, secondary Raynauds so handling anything cold is painful. By the time I get the packet of fruit to the blender I can't feel my hands. All the packets were open so no fighting with my spacker scissors today, just pressure on fragile hands to get the blender in the right position. All the while balanced precariously on my step stool to be able to reach. Once the fruit is in the blender I have to hold on the to the counter top and hope for the best as I get off the step. It takes me so long to do things that if I waited until I was finished the food would have started to defrost. The battle with the freezer is repeated. I hang on to the open freezer door to haul myself up and not for the first time wonder about the impact on it being used as a mobility aid. I cannot become overweight, not even by a few pounds. The freezer would not forgive me. Let alone my hips. Back to the blender. I have to get back on to the step stool (I want this pink one, how cool is it!) to be able to hold it and press the buttons. That means forearms flat on the counter top as I lever my weight up on to the step. It's the safest way. Weight through my wrists would mean they'd dislocate and give way, if not wrists then shoulders. Flat forearms give a stronger platform. I lean like that on any given surface at any given opportunity. From behind with my feet at hip width apart, and bendy arched back I look like a porn star waiting to be taken. So I'm told.

I've finally got breakfast. I pop my wrists getting the jug off it's base and again repeat the getting off the step stool performance to get to the sink. The easiest way to clean it is to rinse, then put the jug back on the blender with a little water and washing up liquid in the bottom so that's what I do. The sink is still full of yesterday's dishes I've not had the energy to wash.

Back at the computer I drink my smoothie and realise grudgingly I'm not going to be getting much done today. Trying to keep both upright and my eyes open I decide to go back to bed. I repeat the putting the kettle on performance and whilst it boils I go for a wee. Twice. I manage to make myself a hot water bottle without spilling boiling water on my hands, feet, stomach (don't ask) or any other body part. Then realise I need another wee. Glancing in the bathroom mirror I realise that despite the 24/7 central heating my lips are blue, and on checking, my finger tips aren't far behind.

I drag hotwater bottle, bottle of drinking water, and laptop up the stairs to my room by putting them on the stair ahead of me and climbing up on my forearms and feet. When I'm feeling good I can get up and down the stairs pretty quickly like this but today is a slow, tortuous process where I can feel every joint going in and out of its socket and some where bone is grating on bone.

1.45pm and I'm hungry. Unsurprisingly I need another wee too. Back downstairs backwards on my hands and feet to toast a 'free from' muffin. I go for a wee whilst it's toasting. My hands are sore and dry from having to wash them so frequently. When my toast is done I wait for it to cool a little, then pop my wrist out buttering it.

By the time I get back up the stairs I need another wee. As I do now.

2.15pm Aargh. I've only just dragged myself out of bed for a wee, made it back and laid down and now I need to go again.
I wish I could say this was from a bladder infection or similar, but its just the way it is when you have an incredibly floppy bladder which can't fully empty itself.

I end up having to drag myself back and forth to the toilet half a dozen times before I finally fall asleep for an hour at around 4.30pm. No wonder I'm tired.

5.45pm I wake up to a text from Red asking if I want to have dinner with her.

6.30pm I make it downstairs once again on my forearms and feet and run a bath. I can't straighten up properly and am part staggering part shuffling like an old lady. My pelvis feels horribly unstable. Much as I'd love to see Red I know both that I need to take it easy and that having a bath and getting dressed are likely to be more than I can manage. I know Red would happily come here, and bring dinner round, but I don't want to tell her I can't get dressed and I'm embarrassed that the house is such a mess. I text and suggest another day instead.

7.30pm I dislocated my ankle turning round in the bathroom. Not that I've got in the bath yet. I had to wee again. Obviously

8.00pm. Still no bath. Staggering round on an unstable pelvis with both hips out and ankle still dislocated trying to make something to eat.

9.00pm I've managed to make an eat dinner, if you can count frozen oven chips as dinner. If it's any consolation I also had baked beans done in the microwave. With cheese on top. Mmm. Healthy One burn to the hand. Too many dislocations to count.

I'm pouring with sweat again. I don't know if its too warm in here, the heating is on, but very low. If I turn it off, I'll feel the impact in my joints long before I feel cold. It's probably my dodgy autonomic system. Time to flop in front of torchwood.

11.45pm I've been watching the Johnny Kennedy film, The Boy whose skin fell off. Not for the first time, just the first today I think about how incredibly lucky and privileged I really am.

I start the difficult climb up to bed again thinking about that. I never did get in that bath.


14 comments:

spleenal said...

keep the heating on. I know were different but I do know joints hate cold, and the best thing for me is heat.
Sometimes I have to almost burn or sweat the pain out, and in the morning, when the pain has gone, my wife's left with my stink.

Can you not get somewhere without stairs? or is that admiting defeat?

hope you have a better day tomorrow

Stonehead said...

Do you think it would help if I put David Freud on a rack and popped all his joints out? As for Social Services...

More practically, could you put a small larder fridge and microwave near your bed? It would save you a few trips. (I used to have a bar fridge beside my bed but that was to keep my housemates away from my stuff. It was good if I wanted a drink while watching TV, though.)

Anonymous said...

I just found you blog--my god, your government isn't helping you at all? That's criminal on their part. I fear it wouldn't be much better here in the States. Do you get any help at all? This situation of yours is unconscionable as far as English health care goes. Is there anything that I can do--I'll write letters until the cows come home if it helps.
For god's sake take care will you.

Beau in Seattle.

cogidubnus said...

Don't know what to say love...I'm humbled...but I have to confess:

"From behind with my feet at hip width apart, and bendy arched back I look like a porn star waiting to be taken" had me rolling...

Take care...(yeah I know)...

frog ponds rock... said...

Oh sweetheart you talk about dislocations so casually.. and I know how much they hurt... and the wormy ache in the middle of the night underneath your kneecap...

Thankyou for writing and sharing a day...

((((hugs)))) kim xxx

Mary said...

Now now BG. The man spent three whole weeks learning about the welfare system. And he has a famous grandad. Surely, therefore, he knows more about our capability to work than we do? After all, we're living off a diet of daytime TV, and we have a vested interest in being in agony, because we get paid LOTS of money, for life, with no reviews or DWP medical assessments or anything.

We should leave such assessments of our abilities to the impartial professionals.

*palm/forehead*

I can't work out his numbers. A single person in a tiny flat on IB costs the govt about £8k or £9k per year. The same single person in the same tiny flat, not on IB, but working, with help from Access to Work and Tax Credits, costs the govt about £7k per year. Where on earth are the "carrots" for the private work-finding companies supposed to come from?

Anonymous said...

Having read the Freud report, I suppose the polite thing to say is that he is being very optimistic, though I suspect that he sees an opportunity to make money off the government and that the report is positive spin.

-faceless

Anonymous said...

Mary,

One of the problems with these external reports, is that they are written by the very people who would profit by these private-public partnerships. The benefit to the government is that it reduces the numbers on the rolls, which looks good to the electorate, while private industry makes money on the easily-employable unemployed and is able to ignore or shrug off those who need serious help reentering the workforce (which I would suspect include our hostess). The report itself is spin. Freud isn't as naive as he sounds, but he isn't showing all his cards either.

- faceless

steph said...

BG

To think that last week, I was complaining bitterly about one dislocated/torn joint :-(



I presume that you experience variations in the degree of general laxity?

I definitely do. Even my teeth wobble when I'm bad. I find that well-fitting clothes sometimes help to give some support. When my body tone is good, which is rare, I always think "WOW! People don't realise how lucky they are to feel this good all the time."

My problems are very minimal compared to yours but you definitely have my understanding :-D

Vi said...

Ow..... bloody ow!!!! You go through pain like this all the time, but still manage to keep a smile on your face. Surely, the government may be able to help you just a 'little bit' by putting you in a bungalow so you don't have to face those dreaded stairs????

kingmagic said...

I,m knackered now after reading that. And I kept wanting to go for a wee!

I dar'nt make a cup of tea now either.

"Feet hips width apart!"...Now I,m going to have problems going to sleep!

Take care lil sis....Km xx

Girl, Dislocated said...

I hate that you’re having such a rough time. I have to tell you though, reading about your experiences not only reminds me to be grateful for my currently less severe EDS, but it also makes me feel less crazy in the face of lots of people telling me my joint pain in cold temperatures is psychological, skeptically asking me do I “really have to walk like that?” when my legs aren’t doing a good job of supporting me, telling me that it’s impossible to be looser some days more than others, etc. It really is more reassuring to read about similar experiences from another EDSer than it is to read about it in articles for some reason. I feel kind of guilty to be getting reassurance from your pain, but I had to let you know.

Anyway, I hope that by the time you get this comment you’ll be having at least somewhat of a better day.

having my cake said...

What they said about trying to make things easier for yourself by having a bed and food on one floor so you can avoid the stairs. And I know it's a pride thing, but surely incontinence pads when things are that bad...? In hospital, they would have inserted a catheter to help you out. It's not different really. I cannot even begin to imagine what it feels like to pop a joint every couple of seconds but I know it hurts when a joint bends slightly the wrong way so I applaud your bravery.

I know you hate memes but Ive tagged you again with something a little different to the normal lists... you can type in just a name with no explanation. Ive come out and I think other people should also confess :)

Anonymous said...

oh hun, and I thought I was having a bad day!

achelois xoxoxoxoxo