So, right now I’m sat in the waiting room of the accident and emergency department in Exeter. I was bought in by ambulance earlier (will sat why in a minute!). Now I have been wheeled on a hospital wheelchair, one with no chance at self propulsion, into a waiting room, on my own, and I’m dying for the loo!!! I never wanted to feel the way I do now. Completely useless and cast aside. I have literally been dumped. I am totally stuck, unless I crawl across the floor. My wide is at work, and although will be here at some point, I’ve now been waiting for 2 hours! Whilst sat here a number of nurses and doctors have wondered passed. I tried to get the attention of one of them, to no avail. I feel so helpless! Why would someone just dump someone like this, when they know they are immobile?
So, earlier today, I was sat drawing, as usual, on the sofa, when suddenly I had chest pain, then jaw pain, and my heart rate escalated to 206. It felt as if my heart was trying to break through my chest. I felt nauseous, light headed and short of breath. It was absolutely terrifying. I have never before thought I was going to die. Now the nurse in me went straight to impending doom, and with the symptoms it was hard not too. My mouth was dry, my fingers numbing and I was cold sweating. I thought I was having a heart attack. Now, as I’m still here, it is evident that this I not the case. I think I had a panic attack. Very strange considering I was just sat on the sofa. Last time I checked, drawing was a relaxing activity, and although I had Buffy on in the background, it is not scary enough to trigger a panic attack. So another perplexing moment!
So, the paramedics arrived, and with chest pain and a heart rate of 206, they bought me into A&E. Turns out, it was the wrong day to have an episode of any kind, as it is so busy. So, I was taken into a room, they did my blood pressure, asked a bunch of questions to which no one listened to the answer. They were too busy sorting out a drunk lady in the corridor! Next thing I knew, I was dumped in the waiting room. No explanation, no dignity, no help.
Now, I’m still sat. Needing the loo. Nowhere near a toilet, and even if I could see one, no way of getting there! I asked the paramedics to bring my chair, but they said I didn’t need it, and to be honest, at that point I felt as if I was going to pass out, so didn’t think to question it!
I had the pleasantries of two children noticing my lack of leg, who proceeded to amuse themselves greatly with gears of disgust! Not that things like that bother me, because they don’t. They’re just curious, but when your feeling like a lesser human, the last thing you want, is any attention drawn to you. I just want to go home! My wife suggested on the phone, to self discharge. Good idea, but how? I can’t go anywhere. I’m totally stuck!!!
I never want to feel like this again! Not ever. I just want to go home, and have the dignity of being able to go to the toilet before it’s too late! Yet, I can’t, not until my wife can finally get here, if they let her in!
As many blog writers will tell you, through this therapy of sorts, you often receive contact from readers, and some even turn into friendships. I started conversing with my lovely friend Maggie quite some time ago when asking questions on amputee sites. Before my amputation, and when I first discovered I had CRPS, I found the lack of information out there quite astonishing, which is why I decided to write this blog in the first place. I didn’t think for a second that I would end up here, practically begging for treatment, and then finally finding that one Doctor who will help me, because of the amputee sites, and then this blog. Yes, with thanks to Maggie, huge thanks, who kindly put me in contact with her doctor, I am finally on the road to having a diagnosis, and I couldn’t be happier, or more thankful to wonderful Maggie.
I hope she won’t mind me talking of her, but she is one of the kindest people I have ever had the privilege of conversing with. She always checks up on me, and reads my posts, and her kindness has now put me on the road to treatment. For that, I am so greatfull and can’t thank her enough. I know she will read this, so to you Maggie, I thank you so so much.
So, last Wednesday I had a consultantation with a Doctor who is a specialist in stump issues. I was put in contact with her secretary, who booked the appointment. It was via zoom. I was extremely anxious, as I am so used to Doctors dismissing me and lumping everything under the CRPS brush. But to my amazement, she did not. She listened to my symptoms, and guided me through a self examination of my stump. The whole process took over an hour, which is the longest time I’ve spoken to anyone since the surgery. At the end she spoke of a couple of things which could be causing the problem, and what we can do about it. So, when I had surgery, the nerves are cut. When this happens they have nowhere to go and nothing to do, so they go a little nuts! Sometimes said nerves can also be fighting against a suture or clip put on the end of them! So she thinks that my popleteal nerve is either doing this or trapped. So the plan now is to do an ultrasound and some other tests to see if this is the case. This was the first thing which amazed me. I’ve been booked twice now for an MRI. Being told by the non specialists that this is the only way to find a neuroma. What if it isn’t a neuroma, I would ask? Well then we can’t help, they said! If I questioned it, I would be shut down and made to feel as if I had done something wrong. So to find a Doctor who is willing to explain, and say that an MRI is not only the best way, but not the only way to find issues, was just wonderful. It’s as if realising that your not mad!! So, now the plan is to await my appointment, and take the trip to East Grinstead for tests. If it shows what we suspect, then book for TMR surgery. I will explain what that is in future posts, if it is on the cards, but basically it will give my nerves a job to do, and stop them complaining so damn much!!
I honestly can’t even explain how happy I was after this consultation. Someone not only listed to me, but also may be able to help. It meant that some of those dreams which I had lost, may be achievable again. I may be able to walk again! (At least a small portion of the time, I will still have the crps! There is no cure for that bit!). But to have a chance of a reduction in the pain I’m in…and that is everything.
I celebrated with one of my first little wheels in ages!!
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!
So, today was an interesting day. The end of an era as a registered nurse. Today my medical retirement, and thus termination on medical grounds, was done. (Incase those of you are wondering, I’m no where near the proper age of retirement). It was sadder than I had originally thought it would be. It felt so final. So definite. The lead nurse, hr lady, and nurse which I know and have worked with, were all lovely. Before I went she said ‘you will always be a nurse’, which of course opened the flood gates, igniting a sniveling wreck!
I graduated from university 14 years ago, and started working as a nurse in operating theatres. I loved every second of it. I was that annoying person who would be there early, leave late and even go in when I wasn’t meant to be. I did extra work for the plastics department as a student, becoming one of the first student nurses to complete an audit for the surgeons. I went on to work in the private sector and did agency work in theatres all over the country. A year or so after I was married, I no longer wanted to work away and so took a job in the endoscopy department, where I have worked for the past almost 9 years.
I had hoped that following the amputation of my leg would mean I would return to work and then to theatres, it was of course one of the considerations for having the surgery in the first place, but CRPS had other ideas. This condition seems to be a rather selfish one. It keeps on taking and taking, and never gives! I don’t like things to get me down, but today was difficult. The end of working in a place on and off for 20 years. A place where I did all of my training, and met some wonderful people. I will mainly miss the patient’s and amazing doctors who I’ve worked with over the years.
So where now? Well, I always like to think that no matter how convoluted, everything happens for a reason, and I hope that this new chapter will bring great things. I am yet to receive treatment, but have finally been given an appointment for Friday! Yippee!! So I hope that we may soon have a plan, and some assistance. So onward and hopefully upwards…
Some photos of me in my nurse regalia!
I have to say, that I am very much, like lots of you; looking forward to 2021. With hopes of treatment, ease of pain and a new beginning. Life has inevitable set backs, and trials and tribulations which are there is test and overcome, hopefully with lessons learnt. As the saying goes ‘when life brings you lemons, make lemonade’, well im not sure about that one entirely, I rather like the idea of ‘when life brings you lemons, give em back as ask for a lime’!
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!
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.
I wanted to document my journey from before my amputation, when my life changed forever, to my decision to complete my Wheely big challenge.
Before all the surgery started and the pain followed, over 6 years ago, I was quite active and fit. I used to run (alot) and cycle, swim and climb, lift weights and play tennis. Id pretty much try most sports, and loved all of them. Then one day after a long run my left foot started to hurt. At this time my day job was as a Theatre Nurse at an Orthopaedic Surgery day surgery hospital. I asked one of the surgeons to look at my feet. He said I had hammer toes, and would require surgery to sort them out. I had seen this surgery alot, and scrubbed for it many times. Although it was quite brutal (orthopaedic surgery is. Its the carpentry of the medical world). So I saw my GP, who refered me to an Orthopaedic doctor. He took Xrays and said that 4 of my toes on both feet needed surgery. He opted to start on my left foot, as it was the worst one. He said that I could either wait for surgery, or have it done now. He advised that it would be better to do it sooner than later, as I was young and fit, and would heel well. He said I should be back to running within 3 months. So I had the surgery. It took considerably longer than the 45 minute surgeries that I had been part of. Mine took about 3 hours. I was told this was because my foot was hard to dissect.
So I went home that day, and felt fine. I had a block in my foot to make it numb for a few days. When the block ran out I was in quite alot of pain, but managed to handle it ok. It wasnt until about week 12 that I started to think that something was not quite right. My woulds healed fine, and the bones fused, but I was still in alot of pain. As the Nurse put it, a disproportionate level of pain to the stage of healing which I was at. So I started to think I must be a complete wimp. Others were walking without crutches by now, and I was still completely dependant on them. I remember at about 14 weeks, taking a trip to Sainsburys, and whilst crutching my way around, I saw one of the Orthopaedic Nurses who was involved with my surgery. He hollared across the shop, “you should be off those by now”. Well, this made me feel terrable. I started to think that the pain must all be in my head, and that I had to get off my crutches.
At this point I was still on alot of pain killers and could not reduce them, if I wanted to sleep!. So I stayed on them. I could not reduce them. I started trying to get used to pain, and trying to walk without my crutches. After 8 months I had no choice but to go back to work as a Nurse. Pay had run out and we were facing living in a cardboard box if I diddnt. So I went back, but has to reduce my hours from full time, to 22 hours a week. A huge pay cut, but better than no pay at all.
Work was hard. Alot of walking, and although the Nursing profession is supposed to be a caring one, after being off for the whole of summer, I found that there was not much compassion at all, and alot of comments like “enjoyed your summer off did you? “, “it’s alright for some, being off all summer!”. This made life for me quite difficult. I had always been a very competant Nurse. I had alot of experiance in scrubbing for very complex surgeries, and so when my training and development was halted (“because id had surgery, and been off for so long”). This was a little hard to take. Especially as my foot was getting worse. I diddnt tell anyone. I was hoping it would just start getting better. But it diddnt.
So after being back at work for a couple of months I requested to see a new Orthopaedic surgeon. I was convinved that something must have happened in the surgery, because it took so long, and that must be why I was still in pain. So I thaught that a second opinion was best. I was refered to a lovely Doctor. Not that my other one wasnt nice, because he was, but this chap made me feel very comfortable and at ease, and put my mind at rest that the pain was not in my head. He took more xrays and saw that the toes id had fused, had not fused entirely straite, and I needed the same surgery again (a revision). So I had this done. I remember waking up in alot of pain. The poor nurses in recovery struggled to get on top of it. Eventually after having most of the pain medications in the drug cupboard, and after being in hospital all day, I went home with more pain medications.
The recovery was pretty much the same as the first surgery. My foot in a large bandage. An appointment to have my stitches out. Me explaining that I was in alot of pain. More than before. Being told it would get better, and that I just had to be patient. It diddnt get better. I was off work for 10 months this time. All the while, trying to adapt myself to being in pain, and accepting that this was going to be my new life.
So after 10 months I returned to work. The same reception met me as before. I started to feel like I was being punished for being off sick. So the last thing I needed was to still be in pain and having to have more surgery. Id spend every day at work trying not to limp. I certainly would not complain.
But as before, after trying my hardest to live with the pain, it became unbearable. Alot of it was centred around 1 toe. It was migrating to the left. So I had surgery to remove the joint. This diddnt work, so I asked my doctor to remove the toe. This still didnt work, and the pain was moving to the next toe. Well, all over the foot, but I thaught it was around that toe. So I asked for that one to be removed too. This was done in April 2018.
This was my last Orthopaedic surgery before my leg was amputated. Needless to say, I had been off work alot, and although at this point I had been there for 7 years, people who had just started and been there for 6 months, made more career progression than I was aloud. So life was pretty rubbish.
Im hospital 3 days to amputation
I was fed up with being in pain. Fed up of not being able to run. Fed up of my life taking a path that I had not planned for. So I decided that I wanted my foot off. This was causing all of my pain. I was living on maximum pain killers. Not sleeping. Could not walk at all, and I was getting to the point of being totally dependant on being wheelchair bound. I could not have my foot dangling at all as it was too painful. I was asked alot what the pain was like. Id simply say ” have you ever stubbed your toe, and remember that gut wrenching pain that makes you want to throw up?”. Well it was like that, all of the time.
Lexi's journey through life as an elective amputee for CRPS. 