Live your potential

Pain again

It's three in the morning, my arm is on fire and I'm out of painkillers. I've been scrabbling around on the floor beside my bed to see if I could find some tramadol or at least paracetemol. But there's nothing. This is the worst part of my day. The only thing to do is close my eyes and try to breathe through it. The Matthew Sanford book got me thinking of yoga exercises I could use. So that's what I'm going to do now: turn out the light, breathe slowly and deeply and try to reduce the pain a little.

Sweet healing

I've just read a fascinating article on Disaboom: "Researchers at the University of Rochester Medical Center in New York have discovered that the dye that makes M&M’s blue - Brilliant Blue G - blocks the chemicals that swarm in after a spinal injury and kills the healthy cells around the injury site. They also found that the dye can even restore function, restoring the ability to walk (up to 70%) in all rats who received the injection".

It only works on rats. It only works if taken in the first 15 minutes after injury. It makes the rats go blue. But maybe paramedics should start stocking packets of M&Ms in their emergency vehicles?

WOMAD not quite so wonderful

It's WOMAD weekend. WOMAD is a high point of my year and despite last year's horrors, I'm hugely looking forward to going. I hope the weather holds up. The idea of pushing around in the mud does not appeal.

But I'm worried. After the exhaustion of trying to get across the uneven ground, and the distance from the car park to the stages, I'm not keen to take my manual chair. My cycle chair is being serviced so I'd like to hire an electric scooter. Last year, you could just take one out if you'd pre-booked. This year, you have to pre-book and pay an exorbitant £18 a day on top of the £122 ticket price. I'm shocked, because despite WOMAD's reputation for and appearance of inclusivity, this policy means I cannot hire an electric wheelchair. So unless I can find someone willing to push me all day (and pushing me across grass is pretty dangerous because of my poor balance), I'm not going to go.

I've therefore sent the following to WOMAD. I'm curious to see how they'll respond:

Dear H
 
Thank you for the information about scooters. I've checked the details on the site link you supplied and see that it costs £18 a day to hire the electric versions.
 
I've been coming to WOMAD for over 20 years. Last year was my first as a wheelchair user since an accident in 2006. I had been unable to get a response from the scooter hire company that WOMAD used and was forced to push in my manual chair. As a high level paraplegic (I have no movement or function below my arms), I found it extremely hard work to get around the site. Being pushed is dangerous for me. I have very poor balance and if I hit a hole or stone too fast, I will come out of my chair. It's impossible for me to get back in without considerable help. I stayed at the festival for a couple of hours before exhaustion forced me home. An electric scooter would mean that I could get around easily. 
 
I understand that ground conditions are beyond your control and that it is not realistic to have tracked walkways throughout the site. However, I find it shocking that you expect everyone with disabilities to contribute an additional £54 on top of the ticket price if they need to hire an electric scooter for the full three days of the festival. Of course, there are many people with disabilities and it would be uneconomical to offer free scooters. However, I note that you ask those who wish to buy a disabled ticket to provide evidence, such as a letter of award for the Disability Living Allowance at high rate (mobility component). Would it be unreasonable to offer free electric scooters, if requested, to those who can provide such evidence?

As you might know, DLA at the highest rate for mobility is given to those who, to quote the DLA claim form,

- cannot walk at all
- can only walk a short way without being in severe discomfort, or
- could become very ill if (they) try to walk

Under the terms of the Disability Discrimination Act, you have a duty to make reasonable adjustments to ensure disabled people can use your services. Under the DDA, it is unlawful for service providers to treat disabled people less favourably than other people for a reason related to their disability.
I believe you are discriminating against people with additional mobility requirements by forcing them to pay a steep fee for a scooter. To ask for those with such needs to pay almost 50% of the ticket price on top of the £122 cost will exclude those who might wish to come but cannot afford this extra cost. People with the highest level of mobility allowance, such as myself, will often be unable to work full time. Coming to WOMAD is an expensive and wonderful treat but not if I can't get around the site. Your approach to the hire of wheelchairs and scooters does not seem to sit with what I perceive to be WOMAD's usual inclusiveness.

It's obviously too late to do anything about it now. However, I will be interested to hear your response to my complaint and what action you intend to take.

Yours

I'm sorry, I don't speak SCI

I'm still suffering from last week's Botox. My spasms are far worse than usual. My pain is worse. And I'm incredibly tired. I went to bed at 8.30 last night.

But I don't know why any of this is happening. Pain is a useful guide and yet I have zero sensation below my armpits. Is my bladder still sore? Have I got an infection? Have I bruised myself somewhere?

I've thoroughly checked my skin and there are no marks. I've been going to bed ridiculously early. I've taken out the indwelling catheter so there is no longer bleeding (if you catch the tubing of an indwelling catheter it pulls all the way down...). There's not much more I can do apart from drinking loads of water and resting lots (it was hard to keep focus for the full Board meeting on Monday).

It's very helpful of my body to give me these additional signs that something is wrong. I just wish we spoke the same language. Does anybody have an SCI dictionary?

(According to the Amazon review, the book whose cover I use, Travels among Threatened Languages, "adds a whole new dimension to travel writing. The power of language is at the core of Mark Abley's book, and he manages to educate and entertain while ensuring that the people he meets and the languages they speak take centre stage".Sounds great! )

Birthday tea

I'm 44 today. There's something special about identical numbers. They only happen once a decade. And four has always felt like a special number. I think it's going to be a great year.

But duty calls. I have my first Board meeting today as Patient/Carer Governor of Salisbury Hospital. Reading the 19 papers, I see I'm already being referred to. I've accepted an invitation to a meeting about disabled parking and now seem to be a member of the Transport Services Steering Group. Well, I've got wide experience of hospital transport...

The meeting is at 4pm and starts with a photo call for new governors. I think I'm going to wear the birthday boy rosette that Arden gave me (though maybe not for the photographs). I like the idea of 25 governors and associated staff singing me happy birthday. And I'll take my iPhone in its amazing new neoprene cover, designed and made by Griffin. I'll never lose my phone again...

Badly botoxed

On Wednesday I was in hospital for my bladder botox injections, something that happens every four months. This was the fourth time I've had the operation and the first that I had a friend who volunteered to come with me. They drove, waited around and then drove me home. It made a real difference and got me wondering about how much anxiety and fear I deny in myself. Because I could talk about it, I realised before the procedure that I was actually quite nervous. Not so much that anything would go wrong, but that it would hurt. That just because I couldn't feel, didn't mean that my body wouldn't respond. I wrote about this before and during the operation, I realised that there was considerable pain.

I was the last operation of the day. This time I didn't have a local anaesthetic. I imagined this would be fine because I have zero sensation. I deliberately didn't look at the colour screen by my head because I didn't want to see the clouds of blood that burst every time the needle pierced my bladder. But my body could tell when each injection went in. It jerked slightly and I got an increasingly bad headache. By half way (number eight of fifteen), I was praying that I could hold on without going dysreflexic again. I managed it, counting down with the surgeon. It was not a pleasant experience.

Next time, I'll be asking for the local anaesthetic. Maybe it will help my body recover better too. I'm still in pain from the operation (my back is unusually stiff, my spasms are worse), I seem unable to empty my bladder properly (I've had to call the district nurse to put in an indwelling catheter for a few days) and there's been blood in my urine. It's not been the best of times.

Sailing away

I went sailing today for only the second time since my accident. I tried once when I was still in the Spinal Unit: we hired a van and drove to Portsmouth for the day where I sailed a Challenger, a stable single-handed trimaran.

Sailability at the New Forest and District Sailing Club is staffed entirely by volunteers. They rely on a combination of grants, donations and membership fees to stay afloat. They offer sailing opportunities to over fifty people with disabilities twice a week.

I went out with an instructor in an Access dinghy, supposedly impossible to sink. We had fun, especially when I took the helm. If they decide I'm good enough, I'll be able to come back with Griffin next week and take out a boat.

It looks like I won't be competing in the 2012 Paralympics though. The team's already been chosen and they're not looking for new recruits. Looks like it maybe 2016 before I have a chance!

Stoned

I've always preferred Avebury to Stonehenge. It's one of my favourite places. I was born about eight miles from there in the now gone Princess Margaret Hospital at Wroughton. There are far fewer people. And you can touch the stones. You used to be able to touch the stones at Stonehenge: no longer. The ones at Avebury are much smaller and there is less of a stone circle but there's a real sense of ancient power about the place. I used to love hugging the stones, running my hands along the smooth smooth surfaces, laying my cheek against the warm rock.

I've not been back since my accident, even though it's only a fifteen minute drive. I pass it all the time on my way to Swindon but I've been concerned about access. I didn't want to spoil my many memories of the place by discovering that I could no longer visit.

We went back today. I could get in. And I could touch the stones. It's a short steep slope to reach them, and in the wet it will be impossibly muddy. But today in the warm sunlight I just needed a strong push to be able to reclaim the space. Pure contentment.

The Circle Restaurant is accessible too. An uneven path and cobbled pavement to get there but you can park in the centre of the village with a blue badge. It's then a short push to excellent cappuccinos and delicious all vegetarian options. Accessible toilets, albeit awkward to get in to because when the door's fully open, you can't manoeuvre past it - you need to open the main door back into the cafe. 

We didn't check out the museum and barn (where they have wonderful children's activities. I've spent many pleasant hours drawing with the kids). We'll save that for another time. But I'm warm with happiness now I know I can visit the stones any time I want. I feel like I've come home.

Falling to pieces

I got the results back from my bone density scan yesterday. They show that I have slight osteoporosis of the left hip. I've been told I must drink at least half a pint of milk a day or eat a cheese sandwich, goat's cheese acceptable. My nightly hot chocolate or Ovaltine can count toward my total and can now serve a greater purpose than just being a soporific.

This deterioration is not unusual with a spinal cord injury. I spend most of my time sitting down and so my hips aren't weight bearing. I'm standing three times a day when I'm at home, but because I start to pass out, I never manage more than three minutes. I'm going to get a corset/binder from the hospital and that should help. If I want to build up my legs again, I need to stand for a lot longer. I'm not sure what I'm doing wrong: when I was in the Spinal Unit, I used to stand for up to half an hour. Time to go back for an assessment.

But the deterioration is sobering. Over time my shoulders will give way: they're simply not designed to take the weight they must carry when I transfer. It's hard to know how much of this is inevitable. I suppose I just have to wait and see. I'd just rather I hadn't had the first indication of premature ageing quite so soon.

Musical delights

Arden's orchestra was amazing at the National Festival of Music for Youth yesterday! They ran on, led by a girl with an olympic torch, to shouts of "We are the champions". Then the 80 or so musicians launched into the first in a series of five pieces about sport. They played beautifully.

Of the 18 groups playing, they were one of the best. Not the best - that prize should go to some of the extraordinary brass bands. Not the most topical - that accolade belongs to St Mary's RC Primary School Choir in London who sang a blistering piece about children's rights about the UN Declaration of the RIghts of a Child.

They didn't win, but what an incredible experience. The venue itself was easy to get around: good level access, accessible toilets (locked with a RADAR key, though a little too heavy to open with ease). Parking was a little too far away. Let's hope we're back again next year!