Systematic neglect & lack of treatment!

Sat here this morning, following another sleepless night of pain and discomfort, I can’t help but wonder how things have gotten this bad again. So I started to think about it. I certainly know that I’m not the only person who is suffering like this. There are so many others. Then something dawned on me. There is a distinct lack of action and compassion which our care system and givers are showing us.

As an NHS Registered Nurse myself (at least for a few more months, until my retirement is finalised), it is hard for me to look at or admit to the systematic failure within certain areas. My experience, as some of you are aware, is that of disregard and systematic neglect. Other than my acting GP, and the amazing treatment at kings veterans hospital in London, most others have done nothing but lend accusations of me lying about my condition, accuse me of self mutilation, or ignore me entirely.

My typical day. Spending all day with boiling heat packs to try to help with the pain.

Over the past 14 months, I have received no appointments, No investigations, & No treatment despite numerous visits and phone calls to my GP, which resulted in numerous referrals by him, and yet no appointments, investigations, treatment. My leg has never been examined or looked at at all. Instead I have been left trying to self treat the most painful condition known to human kind.

My condition, returned within weeks of my amputation for the condition itself. How do I know? Trust me, when you’ve had CRPS once, then opted for an amputation to rid yourself of it; there’s no greater fear than that of its return. Believe me; once you’ve had it, you will never forget it. To put it into context for those of you who are lucky enough not to know CRPS, I would ask you to imagine the following: Stick your foot in the oven and turn the temperature up to 300 degrees, and then sit there until you can’t stand anymore, but you can’t remove your foot. That pain and sense of urgency you feel to make it stop, is what any CRPS sufferer is living with every day. There is a reason it’s nicknamed ‘the suicide disease’.

I am sure we have all heard and seen many excuses for the actions, and lack there of, from some care givers. Well I say that there is no excuse for any of it. Refusal to treat, to act, to listen is simply neglect.

I am not writing to elicit a complaint, but to show solidarity to those who have suffered, such as I, at the hands of the Illinformed, and frankly neglectful people. Rather than ignoring us, hurling accusations toward us, stripping us of our medications, and leaving us in unbearable suffering; would it not be a better use of time to look into this horrific condition. My belief as a care giver is to learn and research any conditions which are new to me, and understand them….not make a judgement of ‘it’s all in your head’ It is not.

I had a physiotherapist acuse me of lying about my condition because I needed a wheelchair (and this was after my below knee amputation). A GP spent an hour detailing various similar stories to try to elicit a response from me, which matched her beliefs; that my condition was all in my head. An experienced pain Doctor, who had me in tears, when she told me that she thought amputating my leg because of the agony I was in, was ‘self mutilation’. Even someone I called a friend, tried to tell me I couldn’t possibly have the condition I have, because I don’t make a Broadway show of the pain I’m in. Newsflash idiot: the only person who gets to see me like that is my wife. If I’m having a flare up, I don’t go out or see anyone!

So what can we do? I wish I knew. But I do know that sitting back and letting this happen time and time again is not the answer. We need to build more awareness of our condition. We need to stand up to those who deny our condition exists.

I had the privilege of attending a pain management course which was organised by BLESMA at Kings hospital for veterans in London. The course was via zoom and it was completed a few weeks ago. I had the opportunity to learn more about the science behind pain, and techniques to help. I was told every day that it is not in my head. They were and have been since, incredibly supportive. This is the kind of treatment we deserve. I find myself very fortunate to have been accepted on the course.

This is the kind of treatment we deserve and are in desperate need of. We need to educate ourselves with an armour of informed responses, for those who do not know or understand our condition. Know our treatment options, so we can give our care givers options and ideas, and question when treatment is not given. Then maybe combined with our knowledge we can back up the need for them.

This condition is rare. It is not widely researched or known about; so those of us as the sufferers have the opportunity to educate, I form and help with the treatment we are lacking.

This simply shows where CRPS sits amongst other pain conditions. Enough said!

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.