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…
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’!
A few months ago; at college; in my English lesson, my teacher asked us to write a piece of creative writing about a time when we were happy. Usually my assignments have followed a similar path of 19th century crime; but this time I decided to use my own experience and share one of my happiest times. So I thought I would also share this with you. So this is a short story of my happiest times, by me; Lexi Alyx Chambers.
When you dream at night; or even have an afternoon daydream; what is it you dream of? For me, it’s simple – running. The feel of running along soft sand, dampened by the early morning tide.
I used to run at the first blush of each morning. From one end of the ocean front to the other, and back; in one continuous unbroken effort; culminating in a charge up and down the rolling dunes.
Years previous, I would have balked at the idea of running so far, so often; but at the time, I relished the prospect. Donning my ritualistic combination of runners apparel. My Asics Gel running shoes, and double layered, hyper-absorbent 1000 mile socks. My favoured, somewhat garish shorts made from tangerine coloured shell suit material; lightweight and easy to run in; although unfortunately rather decadent of 80’s fashion. More of a reminder; a level of familiarity to where it all began.
Thick beads of sweat would drip down my face; leaving a salty sting as they dampened my eyes; leaving behind a salty taste of the sea. My gate, almost silent; as my shoes kissed the sand beneath. Each step became miles; which passed in a wonderful, exhilarating blur. Movements so often practiced that they had become an automatic sense of perfection.
Some like to listen to music, traveling to the beat of an inspirational tune. I loved to run and think. Daydream of a better life. If only I had known back then; that I was already living it!
Each delightful morning would follow the same trajectory, culminating in roosting upon the ridge of the tallest dune. I would kick off my tight, suffocating running shoes and peel of my nasty socks dampened by the lather of my run. Feeling the morning breeze caressing my face; my feet; slowly drying the beads of effort from my expelled energy. Breathing in the salty flora; that fragrance which conjures a sense of delight, of peace, or joy to soothe the soul. The light would rise upon the horizon. A gift to anyone who dared to open their eyes to see the world awaken. Growing brighter with every passing moment; welcoming a brand new day.
Walking forward from the hills; the large masses of sand formed by aeolian processes. From the ridge of energy; standing to feel the steady warmth from the crystalline blanket of white. A million molecules of muted earth beads, massaging and exfoliating my weary feet; whilst sinking between my toes.
I would make my way to the darker hue of sand; dampened by the morning tide. The cool water soaked sediments relieving the heat. Waves crashing upon the shore with a soft hiss. Retreating slowly; inhaling. Then peeling away and reworking sediments; exhaling; spewing the torrents in an undulating surge and swell of the tide. As if the earth itself were breathing.
There stood I. Alone, content. Barefoot upon the sand. Breathing deeply the ocean carried air. Miles of dune fields amidst vacant pearl and copper sand. Hypnotised by the percussion, rhythm and steady roar of breaking waves. Feeling the cool breeze, within the pallet of colours, which grew brighter; dappling the sky; imparting their warmth, and comforting my tired sensibility. Hearing the happiness within, without uttering a word. Lost within the atmosphere; within my thoughts.
I was yet to find that life would decide to augment itself, with a lesson which I am yet to fathom. I was to learn a cruel sense of irony; to have surgery for pain in my foot; caused by the very thing I loved most; running. Only for the very thing which was supposed to be my cure; meaning the end of running for me. The multitude of surgeries were supposed to get me back there; back to running; albeit with the assistance of a carbon fibre half-leg, to replace the obsolete one which I was born with. Now, over a year later, I could not be further away.
At first my dreams felt shattered, but if the very activity I dream of taught me anything, it was to never give up. So although my dream will always be to run along the sand, and feel the cool water upon my feet / foot. Temporarily, I shall embrace the reality of my racing wheels, replacing my running legs; racing from afar, upon the beachfront.
The simplicity of running taught me about life. Every little thing can be broken down into one step at a time. If you look ahead at the whole journey, you remain lost in its longevity; but if you just take that first step, you never know how far you will be able to travel. It let me escape reality and gave me a focus to give everything my all. The past which I took for granted, has now become the dream which I long for. But for the time which I had it, I was happy.
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.
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 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.
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.
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.
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.
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!).
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.
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.
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.
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.
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.