Oh, the irony

I was referred for an OT assessment back in April. I actually saw the OT just over two weeks ago.

One of the great many questions I was asked (the form had approx 17 pages) was about social involvement. I told him about volunteering for Citizens Advice. He asked if I liked it and we somehow got onto the topic of benefits advice. He mentioned that another service user he had been to see had shown him the medical report from their work capability assessment for ESA.

Being that for almost two years now I’ve been doing a lot of supporting clients through either the Mandatory Reconsideration or appeal processes for disability benefits I knew where that story was going. The medical report bore no resemblance to the service user’s actual medical condition/abilities.

The OT was shocked by that. I wasn’t. I told him how I often see things like “Emma can sit for an hour” or “Emma can concentrate for an hour” in reports and when you ask the claimant tells you they weren’t asked. Digging deeper often finds they were asked something innocuous like “did you watch TV last night?” and the assessor has assumed that “yes, I watched bake off.” Means they sat and concentrated for an hour. Never mind that they may have lost track of what was happening part way through and may not have sat to watch it.

The OT said he would tell the other service user that he should think about coming to Citizens Advice for some help. I hope he did, and they do. I’ll never know.

I got a copy of the assessment form in the post today. It contained some inaccurate information. One of the bits is marked as not applicable but I wasn’t asked if it applied to me (and it does).

Rather like the other service user’s work capability assessment.

>Reaching Crisis Point #disability

> NOTE: I’m ok but I wanted to write about this because I thought it was important. I kept talking myself out of doing so which is why its taken me two weeks to get round to it. I found it pretty hard to write and it’s quite long and I think raw.

Two weeks ago (give or take) I stuck some jacket potatoes on to cook. I went off and did a few bits including putting some washing in the dryer. I’d been in my powerchair for most of the day and after doing that (my powerchair lives in front of the dryer) I went to transfer back into my manual.

As I parked the Quickie I idly noticed that my potatoes had just under an hour left to cook. I wasn’t bothered and was planning to finish reading my book whilst waiting. I stood up and took the few steps I needed to turn and sit in my manual. Whilst standing facing my manual I put my arms on the seat for support.

It was at that point that I realised that having moved it since getting out of it that morning I’d not put the brakes on properly. The chair went flying back. I scrabbled a bit but unsurprisingly hit the floor. Hard. And I scrapped my right arm pretty badly as I did so. Caught it on the chair, I think on a footplate.

I lay there face down on the floor and considered the fact that I was bloody stupid. And then I noticed where something I’d misplaced was. I’d been meaning to ask someone to look and see if it had gone under a unit but now I wouldn’t need to because I could see for myself that’s where it was. I could reach it too. and did so. I decided that I’d be able to get a pretty decent “you know you’ve got CP when…” entry for my blog out of this.

All the while I was staying on the floor because I was having clonus and also I needed a minute to regroup. eventually I knew I’d regrouped as far as I could whilst on the floor and my clonus had stopped. So I started manoeuvring myself into a position where I could try and get on my knees and up into my chair. I can almost always eventually get myself up after a fall.

I lost track of the number of attempts I made. I just couldn’t do it.

If I got myself onto my knees I couldn’t lift my chest off the ground. And if I got myself sat up I then couldn’t get onto my knees. I think twice I got myself into exactly the right position to get up but still couldn’t. My legs felt incredibly tight. A touch of extension I think.

I got myself sat in the doorway leaning against the doorframe with my legs flat out in front of me. That felt like a really good stretch and I made the decision to stay there for five minutes or so and rest. Five minutes up I tried and failed again. Noticing that there were now less than 20 minutes until my potatoes would be done I realised it was time to admit defeat.

Ever since my old phone went missing in January I’ve had the new one on a lanyard around my neck. Only the lanyard was broken. And I had no pockets in my clothes. Luckily I knew where it was and was able to pull myself on my tummy (by rocking from side to side) to grab it from my bag. I called my mum and said those words I so hate

“I’ve fallen and I can’t get up”

She replied

“I’ll send your father.”. Her stock reply for situations such as these. Falls, vomit, changing my bed and cutting my toe nails all fall in that situation.

I propped myself up in the door frame until what felt like ages later I heard my dads key in the lock. It can’t have taken more than five minutes or so but it felt longer and I will admit just before he arrived I was beginning to be a bit “where the hell is he.”

Then he arrived and I apologised profusely and repeatedly for the problem. I also requested he do something with my dinner before trying to help me up as I didn’t want it to burn. I’ve got my priorities you see and at that point being on the floor wasn’t a big deal. He said they weren’t quite done and turned the oven down, amused at my concern.

Always, unless I’ve fallen somewhere unsafe (like when I got tipped out of my chair on the pontoon at sailing and there wasn’t safe space for me to try) if I can’t get myself up I just need help of one person. Always.

I lost track of the number times he tried to help me up. We tried a few different ways, using a pillow to stop it being so high, taking the cushion out of my wheelchair for the same reason (the front of my Jay 2 has a pommel which makes it higher than the rest and being that it’s a deep contour cushion it’s pretty deep already.). He also insisted on trying to swing me from sitting to standing which I didn’t want him too as I was worried about his back. My feet were slipping all over as well, compounding the problem. I got very tired and ridiculously breathless with the exertion. I’ve since been told by my mum that Dad thought I was going to have a heart attack. I find that incredibly upsetting and I cried when she told me.

Eventually he said he’d call my brother for help. Grabbing my cordless phone he wandered into my bedroom and called him. And then called my mum explaining what was Happening.

Returning to me he got me some water and then he said

“mum asked if you were ok. I said you were. Are you?”

I had to smile at that because that’s my family through and through.

It took my brother at least ten minutes to get to me. He brought his fiancé with him. I once again apologised repeatedly to all and them the two of the tried to help me in my chair I think twice. Neither worked.

Geri was feeling bad that she didn’t know what to do to help and I asked her to do something with my dinner (those priorities again…). After a brief regroup moment Ben suggested that trying to get me on my bed might be better. It would give us a bigger area to aim for.

He grabbed my arms and dragged me lying on my tummy through the hall and to my bed. From that point of view it was lucky I wasn’t in the lounge when I fell. They managed to get me on my knees propped on the bed and it felt much more secure than when they did it with my chair. There was a brief right let’s try and get you standing comment but I suggested if they could they just manhandle me onto the bed like that.

And finally nearly two hours after I fell I was lying face down on my bed. Safe.

Although squawking for someone to please move my foot quickly from where it had ended up as it was on top of one of the decorative bits at the end of the bed. ouch.
Geri brought me a drink and I rested there for several minutes. Then Dad brought my manual over and helped me into it.

We chatted for a few minutes and I sat my brother in the powerchair and used to riser to lift him up. They were very impressed and he was a little freaked our I think! Dad chucked my potatoes on a plate and with yet more apologies I sent them off with thanks leaving me to finally eat my tea and call my mum.

My arm was covered in really bad bruises for over a week. many people asked about them in a “oh my god” type way. I ached a lot for a day or two and my knees hurt for longer. Emotionally I was a bit of a mess because I knew that I had done this to myself and it was my weight that had caused it.

Things weren’t helped by a ridiculous access fail the next day and by something very valuable going missing from my house a couple of days later. Ive definitely been struggling hard lately.

Mum said that in all weight loss stories you read there’s a crisis point that the person reaches that made them realise they have to lose weight. This was mine.

Someday I’ll fall again, it’s a fact of CP life. I don’t ever want to feel that helpless like that again. And I definitely don’t want to scare my family that badly again.

I made a phone appointment with my GP. I told her what had happened and requested an OT assessment. As we were saying goodbye she said “are you ok other than your bruises?”

And I said “Yes I am…well, you know…”

She replies “yeah I know.”

Because she knows me and knows if it has to do with CP I’d swear blind I was ok even if I was dying. Because I don’t let CP stop me.

This is a hard entry for me to write. I almost didn’t amt to in case people felt sorry for me. And because I thought it was sound absolutely fucking terrible and it wasn’t.

Except… The truth it hurts me to admit is… it was probably the worst fall I’ve ever had. It scared me so much. And I’ve gone from “falls happen” to really worried I’ll fall again.

That’s not a way I want to live.

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.

>Don’t Look Back In Anger

>I went for my wheelchair assessment on Wednesday.  And it went really well.  The details and all that are for another entry as I’d like for that to be a positive entry. For now lets just say that I’m trialling a new seating configuration and the question of whether I need a new chair as well is on the backburner at present.  So far I like my new seating but I think there maybe a few niggles which need ironing out in the long run.

The thing is though I can’t help feeling a little frustrated and even angry.  I was assessed there in 2009 and I told them certain problems I am having.  Problems which the new seating I’ve just received is hoped will help with.  In 2009 however I had to really fight and justify to get what I did.  And then on the day I went for it to be fitted the therapist commented that I was tipping to one side and not sat even (which was something I had told them about before that).  The response was to get me standing and rearranged and then sit me down again.  I was told I’d need to be care to make sure I did that when I got in the chair and sent on my merry way.

The thing is though I do so many transfers in a day (I tried to count one day but couldn’t keep track) that I can’t always remember to do that.  And if I’m tired or ill it goes out the window.  Plus even within my chair I can’t keep my body in that correct position.

When I went to see my physio for the first time in July she commented on my position within my chair and said it was the cause of a lot of my back pain.  Something she asked me was why I’d not gone back to wheelchair services to tell them and ask for help.  The consultant in spasticity clinic commented on the same thing.  I gave them both the same answer – I hadn’t seen any need or point in it as it had been like that from the day I’d got it.

I’m hopeful that the problems I’m having can be resolved for the most part and I’m very pleased with recent events.  But part of me is looking at how things have been handled now and comparing them with what happened before.  And feeling a little bit angry and frustrated about it and about two years of pain etc.

There is little point to it I know and I’m trying to keep the Oasis lyric in mind and let it go.  It’s just not as easy as I’d like.  I have a friend who tells me he doesn’t let things bother him and just gets on with them.  I wish I could do that or that I could learn too.  But he can’t explain how he does it, he just does.  And actually I think sometimes you’ve gotta take the bad with the good.

Don’t look back in anger,
I heard you say
At least not today