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.