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!

Now it’s done!

So, at this point I was feeling pretty pleased with myself. I was wheeling about the hospital. I had taken my catheter out. I was off the pumps of morphine. I had to have my dressing taken off because I had blisters around my wound. But other than that, all was great. I made a lovely friend too. She helped me through some of my toughest days. When Cat (my wife of 11 years) came in to see me, which was every day, we all used to sit and talk. She made me laugh so much. Who would have thaught id make such good friends with a 75 year old?

So after being in hospital for 12 days, the Doctors decided that I was doing so well, and I could go home. This was the best news ever, so why did I keep on bursting into tears? Was it that I would miss my friend? Maybe I was scared of going home as Id been safe and looked after so well in hospital? Was it hormones? ( although it couldn’t be as that ship had saled last week!). Well, it turns out that It was none of those things.

My 1st full day out of hospital. Lunch at Coal.

Before I was aloud to go home, we had to get on top of the phantom pain that I was getting. It was pretty much constant. A very unpleasant mix of electric shocks and intense pain. So I was started on mirror therapy. It was the strangest feeling. I was sat with a mirror between my legs. Looking at a leg that was no longer there, and it flet like my leg was growing back! Like id had really bad pins and needles, and the blood was finally rushing to my foot. But it couldnt be! I no longer had a foot! I then did some exercises, which was also very strange, and then had to look at my foot relaxed again, and this time it felt like the blood was running out of my foot and it was going numb again. What an amazing organ our brain is!

I was aloud home on the Sunday. 13 days spent in hospital, and 9 days post op. All the while I kept on crying at nothing. It was so great to be home. To see my two little boys, Winkeypoo and Jelly bean. Dont worry, they are my cats, im not a complete odd ball!! They are kind of like replacement children though. ( I wont bore you to death with tales of my cats, as most devoted fur mummies will tell you, we can go on for days!).

Just incase you were wondering what they look like, grey and white is Winkeypoo & black and white id Jelly bean.

So I was home. I was really happy to be home. To eat some nice food. Not that the hospital food wasnt nice, because it was. Its just that as someone who is allergic to gluten, the menu had the same stuff on it every day. So unless you stay for 4 days or less, you get rather bored.

That evening, I kept on crying on and off. My poor wife must have thaught that I diddnt want to be at home. When this was definately not it. I love being home. I was in alot of pain.

The next day we went back to the hospital to visit my friend. She was waiting for a care package, so was really fed up with waiting. She was ready for home over a week ago. It was grear to see her, and a few other ladies who I had made friends with. From there we went out for lunch and then spent a nice evening watching movies. It was then that it happened….

I had a day dream. I was in a dark room, and in front of me was an old furnis. The door was open, and I could see the hot coals and fire bellowing. On the right hand side there was a large yellow bag, lined with a thick brown paper bag. I walked over to it and inside was my leg and foot. I stared at it for a minute and noticed that my toes were crying. It then spoke and asked me why Id done this. Why did I get rid of it?

Well, following this, I cried more than ever, and then It hit me. I was grieving for my leg. I was told that it could happen, but thaught it was kind of silly, and wouldnt happen to me (a sentance which you would think Id learnt to never use by now!). But here we were. Me sobbing like crazy, with Cat trying her best to console me. It took a while, but I finally came around.

The next day I felt so much better. I was not crying anymore. Cat had taken the week off work, so we were getting out and about. It was here that I started to realise all the things that my prosthetic councellor had told me about. All the things which she said I would find hard, and all the difficulties I would have. But I was home, and now I couldnt stop smiling.

The Surgery

Photos taken before and after my surgery.

As you can tell, I finally got a new date. I was to go into hospital on the 01st of April 2019. Typical, I thaught. April fools day. Says it all really! The couple of months leading up to this date were really hard. Things took a steady decline, and I was in more pain than I could handle. So when the date finally came, it was such a relief. The plan was to go in to hospital on the 01st and have my amputation on the 04th. My surgeon wanted to get me in early so that they could get my pain under control before the surgery.

So I sat in hospital and waited, and waited, and waited, then got dressed for my block in my leg that was going to relieve my pain, but this was cancelled. So I waited some more, and before I knew it, it was the night before my amputation, and still no block. Well this was a bit disappointing. My surgeon was equally dissapointed. The pain doctor diddnt book me in for the block, like she was supposed to, so I had to be put on the emergency list. But there was always bigger emergencies than my block (which I understood).

The night before surgery was absolutely fine. I thought that I wouldnt sleep. But I had my usual amount of a few hours around pain killers. I was 1st on the list, so my wife came to the hospital first thing. We sat and waited, and waited, and waited, and then all of a sudden a friend arrived who I used to work with in theatre. She had come to take me. It was so strange. Almost all of the staff were ones who I used to work with. From the lady who collected me, the scrub nurse, my surgeon, and my anaesthetist. I was in the anaesthetic room for a while. I was really nervous about the block, but it was fine. I diddnt feel much at all. Once that was done I dont remember much. Normally I remembered the bit just before I went to sleep, but this time I diddnt. I remember waking up though.

Just after my surgery. Back on the ward.

I woke up in recovery in what I can describe as absolute agony, but with itchy toes too! (Strange considering they were no longer there). The block had worked on half of my leg, but not the other half. I was told this may happen. (I should know by now, that if there is a complication, I will probably get it!). The recovery nurse was also one of my old nursing friends. She was great. The anaesthetist came strate away and put up a morphine pump. This helped a bit, but not much. It made me sleepy. But id been living on a high dose of morphine for years leading up to this, so it was not very effective. I spent what felt like, forever in more pain than I thought possable. The doctors and anaesthetist coming in and out of my bed space. They eventually took me back to the anaesthetic room, and did another block. But this still diddnt help. I was still in alot of pain. My wife took a picture of me when I was quite bad. (As you can see below. Not my best look!). That night was just awful. Doctors were coming in as my blood pressure was really low and my heart rate high. This was mainly because of the pain and morphine. Alot of that day was spent in pain. I eventually saw a lovely anaesthetist who decided to do an epidural.

Before the surgery I was given the option of a block or epidural. I opted for a block as I felt that the risks of epidural were too high for me, with the fact that I seemed to get complications with every surgery. But after spending over 24 hours in writhing agony, I quickly changed my mind. I just wanted the pain to go. So back to the anaesthetic room I went.

Not too flatering, but this was when I was in alot of pain!

I felt the pain ease after a few minutes. I was so much happier. I still had pain, but not as much. So, this is how I spent the next 5 days. Which is the maximum amount of time that an epidural can stay in. The doctors had to keep topping up the epidural as I was still in alot of pain. But it was gradually easing. Then the day arrived for my epidural to come out. I was warned that one of the side effects was something called an epidural headaiche. I diddnt think much of it at the time, but of course, in true Lexi fashion, 12 hours after the epidural was removed my head was killing. It was unbearable. Id had migranes before, but this was far worse. I kept vomiting every time I moved. No pain medication helped. So again, I was a conundrum. Nurses and doctors kept trying their best to help, but nothing did. It did takethe focus off my leg though.

So I spent over 24 house writhing in agony, again! Then eventually a nurse put up IV paracetamol, and I was given an anti sickness injection, and The pain went. We will never know if it was this combination, or it was just time for it to end, but end it did. Oh my goodness, I was so happy. The next morning, the physio came and got me out of bed and I wheeled myself in the wheelchair they had given me, to the cafe amd back. I thaught Id go for a coffee. But then disabled life showed me my 1st limitation. I couldnt reach the bloomin cups! So I settled for a 7up. The sense of achievement was just amazing. I was mobile again, and really happy.

Im mobile again 😁