Showing posts with label bendy photos. Show all posts

DaDa Fest - Working Lives - Here and There Press Release

Next month as part of the annual DaDa fest in Liverpool there is a photography exhibition of disabled people's working lives, including a photo of yours truly taken by Adam Lee. Details of the exhibition below


DaDaFest - Working Lives - Here and There Press Release

Extreme Vegetable Chopping - Bendy Style

Entitlement to the lower rate care component of Disability Living Allowance is assessed on the claimants ability to prepare a meal using fresh ingredients and an oven or hob, ie not a microwave ready meal. This video was made on a particularly good day, as on bad days I cause chilligeddon incidents just trying to get a meal prepared for me out of the microwave.



What neither Truffle or I realised is that it took me the best part of 5 minutes to chop up half a cucumber. That seemed entirely normal to both of us, but I assume most people can chop up an entire salad in less than that time...

Spoilt Rotten

A few weeks back, or maybe days or even hours, my concept of time being about as accurate as my proprioception, an American facebook friend made some comments about their concerns of the consequences of a socialised medical system. I responded to say the NHS was the thing we British should be most proud of, then promptly forgot to give an explanation of why. 

It niggled away at me though, how to explain to people who've never had it's benefit, and to those of us who've had the benefits for so long we take it completely forgranted, what a wonderful, valuable institution the NHS and whole concept of health care, free at the point of need truly is. 

I'm under a great deal of pressure at the moment, having decided that the best option to surmount the difficulties with access to my current flat is to move to another flat without access problems. So, over the next month I'll be moving home and filling in my DLA application as my current award runs out later this year. Moving house is supposed to be one of the most stressful things anyone can do, but frankly it's a sunny stroll in the park compared to a DLA form. That stress has meant that when I found myself struggling more than usual to get basic tasks done, and finding myself short of breath I pushed it to the back of my mind and vowed to be a bit more careful about resting when I need to. 

On Friday I went to my physiotherapy appointment, and what had not been obvious to me, was fortunately immediately obvious to J my physiotherapist. I explained I was finding breathing increasingly hard work and exhausting, that I could only wear a bra for an hour or two before my ribs collapsed under it and breathing got even more difficult. When she examined me J found that my ribs were in various positions, none of which would be found in an anatomy textbook, that my thoracic spine was fixed and rigid, and that my diagphragm was stuck and unable to move properly. Half an hour later J had worked her magic, released my diaghragm and spine which meant I could take a full breath. Unfortunately all that inability to breathe properly had allowed my lungs to fill up with gunk at the bottom and as soon as I could move enough to breathe it was evident I had a chest infection and needed antibiotics. J and I agreed I needed to see a GP before the weekend and that if necessary she would be available to explain to the GP what treatment she'd had to provide. 


When I left J I went straight to my GP practice, and got there close to 1pm on Friday afternoon. Like most GP's they were fully booked, but the receptionists know me, like they do all the patients with frequent need to see the GP and knew I needed to be seen that afternoon so managed to fit me in for a couple of hours later. They'd have got me to sit and wait to be seen sooner but my GP was out on home visits. 


I went back a couple of hours later and saw TopDogGP. As it was my own GP when I started mumbling about dislocated ribs and shortness of breath he didn't require any explanation of how EDS could cause such problems, nor did he need to bother listening to my chest as the whole practice had been treated to my 'barking' as I waited. I left a couple of minutes later with a prescription for some Keflex, codeine linctus and instructions to use lots of steam and if possible take some of the leftover Oxycodone* to suppress my cough reflex. Half an hour later I had my prescription filled and was back at home. 


The NHS does acute care brilliantly. I was seen, diagnosed, treated and prescribed for all in the same afternoon. I did not have to pay to see my GP, nor for my prescriptions**. Had I needed it I would have been sent to hospital in an ambulance, admitted and treated all without needing to worry about how much it would cost me, whether any insurance policy would cover it, whether there would be any excess to the insurance, or whether I could access further specialist treatment. As the person who asked the original questions about the NHS is an organ transplant recipient, had I been unfortunate enough to be so unwell I needed I transplant, the NHS would pay for all my care, treatment, therapies, medications and if a suitable organ could be found, the transplant, the recovery and required medications. For the rest of my life. For free at the point of need. We're so used to that in the UK that we have no real idea what the rest of the world would give just to see a doctor, let alone have access to essential medicines. 


What the NHS does less well is treatment for chronic conditions. I have to pay for my physiotherapy privately because the kind of specialist physiotherapy for conditions like Ehlers Danlos Syndrome is not well provided. I could see a general rheumatology physiotherapist on the NHS but they would not neccessarily have any expertise or experience in treating EDS, or even generalised joint hypermobility. 


As someone with a relatively rare chronic condition I'm more exposed to the gaps in NHS provision than your average person. I have struggled with overly complex bureaucratic regulations governing who exactly can have what type of wheelchair and when, with limits on treatments such as physiotherapy or occupational therapy which make my life more difficult and the overall bill to the state in terms of benefits more expensive. Deficiencies in the system which need attention and thought to discern how to make them more accessible to those who need them at a cost affordable to us all. It can make my life, and the life of those with conditions like mine more difficult to navigate, but, frankly that is a small price to pay for the incredible privilege of being able to see a doctor whenever we need, without having to worry whether or not it's affordable.


*I ignored that part!
**prescriptions are dispensed free of charge to those in receipt of certain welfare benefits, otherwise there is a charge of approximately £7 per item.

Being Bendy- A cuppa tea & a collapsing hand!

Guess the diagnosis

in the New England Journal of Medicine.

via Madison Rose.



It's a beautiful Spring afternoon, the first day it's been warm enough to go outside without a coat. Warm enough to turn the heating off and open the windows, although as I lost sensation in both my hands and feet a while ago it's probably time to put the heat back on.

I'm having to admit that my hip might actually be a bit screwed up. Only might though, I'm not ready to concede completely. Missing out on the bench is a dead give away the pain fairy has been attacking me with glee.

Instead I'll stay here with my feet up, behaving for once, and share some of the photos I took earlier this month.