Dying for treatment!!

What crps look’s like! I’ve always been against showing stumpey, but to show people is to help them understand. I am not ashamed of stumpey!

Anyone with a chronic pain condition can testify that the road to successful treatment can be somewhat of a minefield, when you have more than one condition. This minefield becomes even more chaotic when Doctors can only see one condition, and deny the possibility, or sheer presence of another. Case in point – I have CRPS in my left stump. I also have this other, yet to be diagnosed issue. I saw a lovely Doctor (finally!!) Who I must say, seemed a little out of his depth, but couldn’t see past the CRPS. No matter how many different ways I explained the different types of pain I’m in, he just kept going back to the CRPS. Frustration doesn’t cover how I felt! On the day, I had my wife with me; and my Blesma representative (amazing veterans amputee charity) wrote a detailed email prior to my appointment, explaining the circumstances. Yet with two advocates, he still seemed to be blinkered to the possibility of something else. I started to feel like an orange ribbon, like the emblem of CRPS charities, and that’s all people see. The prosthetists, the physio, and now the 1st Doctor I’ve seen face to face (other than my GP, who is amazing!).

Symptoms of CRPS.

I am a registered nurse, and throughout my career I have been used to the medical terminology used, and how things work within the NHS, and am yet to receive any tests, or treatments, or interventions of any kind. Instead, I’ve been passed from pillar to post, around the roundabout and house’s, getting nowhere! Meanwhile, the pain and effects of pain, are taking away the enjoyable parts of my life. So I can’t help but worry what happens to those who don’t have an advocate, or a realisation of what should be happening? It’s not easy to speak up, and describe your own condition when your Doctor is telling you that what you are saying is rubbish! When they can’t see past your ‘other’ condition; or are simply out of their depth. How many people out there are desperate? Desperate for treatment? Desperate for someone to listen; really listen to them, so they can have their pain investigated and have a chance of a meaningful life. I have been a nurse for 14 years and have had the privilege of working with some magnificent Doctors and specialists, but I know first hand that anyone can slip through the cracks, or be ignored, or even not believed! This, despite the mantra which all us care givers are taught to abide – “pain is what the patient says it is”. Not all health professionals remember this! Instead we often get labeled as ‘junkies who are just after medication’, or they sometimes go to the other end of the spectrum by medicating, and medicating some more; chucking a plaster over it, instead of diagnosing it!

How many people with pain conditions have reached the point of absolute frustration? If a person is telling their care giver that they are in pain, isn’t it their duty to investigate why? And to treat them. If they refuse to do so, or ignore them; isn’t this pure medical negligence? When, my Mum was in agony with a variety of conditions, she said to me “If I was a dog, they would put me down”, yet we are left, suffering! These people who are responsible for leaving us with such suffering are basically condemning us to death, One way or another! When your pain is horrific and no-one will listen, or help… what else can you do? I was extremely worried and shocked when I learnt that according to a web based survey, 20% of CRPS sufferers had attempted suicide, and 46.4% reported suicidal intentions. This is shockingly 6x higher than those with depression, according to a psychiatry study. With statistics such as these, for my condition alone; can Doctors really justify their ignorance to people who are in pain? I would be lying if I said I hadn’t considered it. Especially with the pain of flare ups, and frustration of no intervention and poor treatment!

According to oatext.com, and I should imagine, anyone with a chronic pain condition – “chronic pain patients are at elevated risk of suicide”. Shouldn’t those who refuse to treat, refuse to listen, refuse to test, to diagnose, to intervene, be held accountable for their actions? Instead of leaving us to suffer? Shouldn’t they be referring us to those who do know how to treat our conditions? Those who may be interested! Isn’t that the definition of ‘proper care?’. Not condemning us to a life of suffering!

Ive got a logo!

My new logo for the challenge.

This is my new logo for the event. I have made some clothes trying to get things out there a bit. I have a hoodie, baseball cap, T shirt, vest, and a long sleeve T shirt. All with my logo on. Cat also has a hoodie. Theyre all awaiting sponsorship logos. I still havnt got any definate sponsors as yet. I am sending emails out all of the time. I will persevere and perhapse change the email. I was sent a T shirt and hoodie from Saltrock which will come in handy post training. Sunwise are also sending me a pair of sunglasses. All of these things are absolutely wonderful, but none of them are getting me closer to my goal. I need to get my event out there. I have been speaking to the British Legion about my wheelchair, and they said they would help me. Im just awaiting a home visit at the moment. Ive just joined BLESMA too. Which is for veteran amputees. They have also been really helpful so far, and will be sending someone out to help. So I have made some progress. Now keep all fingers and toes crossed for the new chair. I only have 15 to cross now, so I need help with the others.

Thankyou to Saltrock for my goodies!

I had a really nice suprise last week. Steel bones had put a feature on their facebook page and web page about me, and what Im doing. I thaught that was lovely. So things are getting out there more and more. But not enough yet. I despirately need some sponsors. But I think that everything is a learning curve, and what doesnt work the 1st time, may need to be changed and adjusted. I will not give up.

TRAINING:

This has been steady. The Gym sessions are going great. Getting some good strength and endurance. Were trying things that weve never done before, which is so much fun. The wheeling or pushing, some people call is, is going well in some ways. But I really just need the chair. The NHS finally came up with my replacement. I was really hopeful. I thaught that it must be a little better than the one I had. It futs better, in that the width of the seat is smaller, and so it fits, but that is it. The extent of the improvements stop there. It isnt lighter, even though its made up of half plastic! The seat is too short. The wheel I use for self propulsion is really difficult to grab and I cant use it without gloves. My padded gloves dont stick at all, like they used to with the other one. I could go on, and on. Safe to say, it is a huge disapointment. I went out today for my 1st training session and it was disasterous. Really slow. The wheels seem to love to go towards every gradient. It doesnt free wheel at all, even downhill! It does have anti tipping, which is amazing. I actually think that the red one was better for training, and thats saying something! But as always. I will keep trying. Keep plodding on. Theres always a plus side to everything. Maybe this is supposes to be this way. Give me some good strenth before I get my real chair. I hope so anyway.