CRPS strikes again!

As a scrub nurse, in plastics theatres.

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’!

The hilarity of the loo…

So, I am back at the learning estabishment. Glad to see that my notes on last year were duly considered by the powers that be!!? Which is to say, of course they were not! (For those of you who don’t grasp my sarcastic nature!). If you may recall, I asked for at least one of the couple of disabled toilets to be made a radar key, so that us folk who simply can’t fit through the door of a ‘normal’ bathroom, could actually access the loo when required. A radar key would not discriminate against hidden disabilities and mean we also do not have to keep taking time out of lessons to que for the toilet!

So months have passed, and it still has not been considered. There are two of us folk (ones on wheels) in my class, out of 4/5 in the whole college. Not many I hear you say. But there are so so many ordinary toilets which everyone else can access and yet they feel the need to use our only loo as their personal poo loo. Which means we can never get in the toilet. So far, I have missed over an hour and a half of valuable learning time queuing for the loo. It is worthy of mentioning that it is not just students either, it is also college staff who hog the bathroom.

This is the bathroom… To the left is the men’s, then round the corner, the women’s.

Now I wouldn’t mind it wasn’t for the case that all the other loos are within spitting distance to the disabled one, so it’s not like the normal folk have to treck via Spain to have a wee. They simply have to put one foot in front of the other and shuffle their weiry soles around the corner, as you can see in the photos. So basically this means, they are simply lazy buggers!!

The funny part is, I’ve been sat outside this toilet for over 20 minutes before… What the heck are people doing in there? Having a nap? It is funny, but when your desperate and having to keep leaving lessons to have a quick wee, it’s a nightmare of gargantuine proportions.

So, my quest shall continue. My life seems to have become a challenge of the loo… From one place to another, us disabled folk have to put up with ignorant idiots using the one loo we can get into instead of walking a few metres more to another toilet. What’s more is they never say anything, other than looking rather sheepish, when they see you sat outside in your wheels. I’d like to think they learn, but the truth is, bad we all know, they don’t!

Anyway, other than this, things are still kind of sucky on the treatment front. I have had my first zoom meeting with a lovely Doctor from the CRPS service in Bath. Hallelujah!!! There may be some treatment following also at some point! Thank goodness!!!

Still not able to wheel much at the moment. When your leg feels like it’s being cooked in an oven at 230 degrees it’s a bit tricky wheeling for miles and miles, and so I get out when I can, but by no means have given up. Just another blip in the crps v’s life saga.

Happy times…

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.

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!

It’s all in your head….

So, I had an interesting appointment today. I absolutely trust my GP 100%. He is fantastic. He has helped me so much. But since Covid, it has been impossable to speak to him, let alone see him. So today I had an appointment with a GP who I havn’t seen before, with relation to a new probelm which Ive been experiencing for the past 5 weeks. Basically Im experiencing a lot of pain in my lower back, which keeps me awake at night, and almost constant abdominal pain. I have issues in this area with chronic constipation (sorry for the overshare!). But these other problems are new. So a couple of weeks ago I had a blood test, which thankfully came back ok. Unfortunately the pain is still there. So I finally saw this GP today. She was perfectly nice, but basically suggested that because I already have so much pain from the CRPS, that perhapse I am anticipating and expecting more pain! My 1st thaught on this….. what???? I have enough pain as it is, I do not need, or want more; and it is not in my head! So what to do when a Dr does not believe you, or tells you they think its all in your head…. I wish I knew. The pain is still there right now, so am I supposed to just live with it, like the crps, with no treatment or investigations to find out why it is happeneing? It feels that way. Infact at the moment im feeling like ive been cast aside completely. Ive finally got an appointment with a pain Dr, who is great. But that is not where I live in Exeter, im having to go to Bristol. My GP refered me to Exeter I think about 6 times or maybe more in the past 15 months, and I have not had one appointment or spoken to, or seen a doctor about my crps returning; until I went to London for my pain course, which BLESMA refered me to.

Sorry for the rant… it is so unbelievably frustrating. I have enough with the crps trying to dictate my life, let alone more pain from othet areas. Im trying to come off of my ton of pain medications as they do not help with the crps, but now I am having to take them because of the pain elsewhere!! Not helpful! So the plan now….. hope nothing bad happens, or gets worse!!

On the good side of life, I am loving my hand bike. It is just amazing. Really hard work, which I kind of like. I can do 6 miles at the moment. Practice makes perfect though! The wheeling is also going great. Ive mad my 1st target of Exeter quay to Turf locks, which is about 15 miles. It was awesome. I cant wait to go further, which will be easier when public conveniences re-open!!

Cycling & wheeling 😍

I find myself fortunate that other than an extremely neglectful pain doctor before my amputation, that I have made it this far before having a Dr accuse me of pain being in my head! It seems to be a common thing amongst people with chronic pain conditions. It shouldnt be. Just because you suffer with one pain all the time, does not mean that others are not possable! I have to say, this all left me feeling quite upset and frustrated!

A nice cuddle from Lily helps with everything 😍

So what would I advise others. See another Dr, ask for another opinion. You know your pain, and what you are suffering, others dont. There is no point in waiting for something bad to happen, or suffering for longer because of being afraid to speak up. So I would speak up. I am going to πŸ™€


Well, over a month has passed, and what a busy one! Ive had another installment to my pain management programme, changed my living room around so its actually accessable, recieved conformation of my retirement from my job, and recieved my amazing hand bike!

So 1st things 1st… the pain management programme. This was brilliant as usual. The kings hospital for veterans. We went over lots more mindfulness and recieved great advice on desensitisation. We are working on reducing my medication as well. Anyone with CPRS will tell you that pain meds are more of habbit, and achieveing a sense of control over this condition…they dont get rid of the pain at all. Nothing does! You do, over time get used to a certain level, but thats about it! So when i have a flare up, I usually reach for my morphine; basically out of habbit, rather than necessity. It does calm me down and stop my rolling about like a wet fish on dry land… but thats about it. Basically for those who dont know, a flare up of crps feels like your stump (in my case, but any area which a person has it, will apply) is literally on fire. Your pain levels sky rocket to 10++. Often you feel like youve reached a new hight of pain. Sometimes just to shake things up, the hot burning is replaced with what feels like cold burning! There are lots of other funky things that the affected areas do as well, but I wont bore you with the details! So the pain management programme is not taking away my pain, but teaching me how to cope with it better, which is positive πŸ‘πŸ₯°

We changed our living room around, finally. It was rather crowded and i steuggled to navigate my way around our enormous sofa with my wheelchair. Now it is open and frankly…awesome.

Our new room

The job…or should I say career, is a difficult one. I am not retiring because ive reached that age…ive been medically retired, because of my immobility and illness. I have been a registered nurse for the nhs for the past 13 years. I retrained after leaving the Army. I loved being a nurse, especially in operating theatres. Following my amputation I had high hopes, and wanted to finally persue my dream of going to medical school to train to be a Doctor. Why had I not done this before I hear you ask? Well, I did get accepted before my nursing, but I was doing A levels, and unfortunately half of them were cancelle half way through, and so I ended up applying to do nursing as a way of gaining experiance and hoping to lead to med school….then life kind of got in the way. So this was my window. The time when I could do it. But my leg unfortunately had other ideas. Or, should I say, stumpey!! You cant work as a Doctor if you cant walk! I was hoping to be an anaesthetist, which requires lots of walking, standing, running even! So, anyway, im digressing… the retirement. So I am being retired. I am really sad, I have to say. Especially with Covid, and not being able to help and contribute like I feel I should. But, I am also sad that it is the end of an era for me. My career is over, as are all prospects in this area. But hey ho…. life goes on, and I have lots planned as always.

Me as a scrub nurse ❀

The bike…. the amazing new hand bike arrived. A massive thankyou to the Aaron Lewis Foundation by the way, who kindly funded my amazing new bike. I never thaught there would be a time where I could not ride a bike, until now. I hated that my lovely Moda was sat, lonely in the bike shed. But now I can ride again. I went for my 1st proper ride today, and its amazing. Hard work. Legs are made for movement, and hoyking us about, but arms really are not…found that out! But I will persevere…. cant wait for the next ride.

My new hand bike from ALF.

So there you have it… I hope you are all staying safe in this strange new world of ours.

Freedom & such…

So, some of you may remember; way back when; that I started my just giving page, which was two fold in request. The first being for my freewheel attachment for my wheelchair so that I could finally negotiate the somewhat procarious streets of Exeter, and wheel myself about unacompanied,. The second being for funds for my Osseointegration surgery, so that one day, I may have the chance of walking again.

I am so pleased to report that I reached the 1st milestone, with thanks for some extremely generous contributions, and purchased my freewheel. It arrived just over a week ago, and so far I have been out and about 5 times. I am up to 5 miles. It is brilliant. It helps alot with my confidence, and I have had no further tipping incidences; which plagued my wheeling before. I am so incredably greatful to those of you who were kind enough to share my page, and to donate.

In my carpark with my freewheel.

It is a strange old world which we are living in at the moment. But for me, and others out there who suffer with chronic pain; this life is kind of, the norm. Not to be all melancholy about things, but when you are living with crps and other conditions like it; most of life is spent in isolation. I am lucky that I have the most supportive wife I could ever wish for, and a couple of beautiful fur babies to keep me sane.

I have recently completed the 1st half of a pain management course with King Edwards hospital for veterans in London (via zoom). It has helped so much. In the 4 days I got to work with some of the countries leading experts in pain management. They have written a programme for me to work my way through each day, which includes stretching, desensitisation techniques, mindfulness training and general learning all about pain and what and why it is! I would thoroughly recommend it to anyone who has the chance. I have a family day next week and then another 4 days to complete the course.

I have noticed a few posts on the amputee pages this week, with people suffering with phantom pain. As you may know from my 1st post, I suffered greatly with this post op. It was almost instant, and excrutiating. But, thanks to Marianne at Exeter mobility centre, who came to see me in hospital, and start mirror therapy 6 days after my amputation, I have hardly had any since. I was rigid about following the instructions. I am no saint, and did miss a few days here and there, but it takes all of 9 minutes. I did this 1-2 times a day for a month. So worth it. Now, it is not for everyone, and does have some restrictions as to who can and cant do it; but if you are suffering, do speak to someone who can take you through the training and guide you how and what to do.

I hope you are all safe, and not too bored πŸ˜€

1st Ampuversary

What a year!!

So, a whole year has passed since my surgery. My official ampuversary was a couple of days ago on the 4th of April 2019. As you know, it has been a tough year. It started with so much ambition and anticipation, and although all of the goals and dreams which my surgery was supposed to allow me to achieve; have not come close to being achieved; I will not stop fighting. I have managed to do some things this year. My driving test, which I passed just before Christmas. People ask me why I diddnt do it sooner, simple; I diddnt need to, I used to cycle everywhere, or even walk, which I loved to do. ❀

How stumpey has changed.

I have gone back to college to study english and maths, sadly now though we are all on lockdown and college is no more. I just hope that I have done enough to get a good grade 🀞. My challenge went south, due to injury and having to wait 8 months for a wheelchair which I could use. I still have hopes though of completing it in the future. I did have my 1st solo exhibition of my art which was really well recieved, and was shortlisted for the pastel societys art prize, which was amazing. I sadly lost my baby Winkeypoo to Leukaemia, which is by far the hardest thing Ive ever had to go through. I dont think I will ever get over loosing him. But now we have our lovely little Lily, who is named after the vet who saved Winkeypoos life on numerous occasions. ❀😿

I sadly still have not recieved any help from the pain team. A year and 8 referals later! Thanks to BLESMA though which is an amazing charity for veterans, they have arranged a pain course for me at King Edwards hospital for veterans in London. My course is due to start at the end of June, but I am now unsure as to weather this will rightly, need to be delayed. Also they have gotten me an appointment with a pain consultant in Bristol, but I am sure this will be aranged also. Cant help that though. We must all sacrifice at the moment.

So, whats to come? Well this year the plan is to start my access course to go back to university. As you know my dream is to study to become a Doctor, sadly this has been the hardest dream to give up on/postpone! Unless I can walk again and get my crps under control, there is simply no way I can get accepted into medical school. I wanted so much to become an Anaesthetist. If there is any way in the future, that this can be possible, then you bet your ass, I will go for it! But in the mean time, I have found a huge love for writing. Creative writing especially. My spelling needs work, but, that besides, I am hoping to go back to Uni and study a degree in English and Creative writing. But that will be in 2022. 🀞😘

I will never give up on trying to walk and run again, so this year is about trying to raise as much as possible for my osseointegration. Thankyou so much to those who have so kindly donated already. It means so much. More than you know ❀ I hope to start proving my worth using my wheelchair by doing a 5k, 10k, half marathon and marathon. Of course this is all dependent upon the healing of our great nation, from this disasterous virus. I hope all of you are staying safe and at home. 🀞

Id like to thank all of you who have continued to support me throughout the past year, and you know who you are. My amazing wife, Shannon, who has to put up with me rolling about the sofa crying, endless medication mood swings, sleepless nights, trips to the microwave to get my heat packs, manouvering my wheelchair up amd down the stairs; just to name a few things. She is my hero. My rock. The most amazing person I have ever met, and I feel so lucky to be married to her. ❀ Id like to thank Steve at BLESMA, who has been working so hard to make my life better. They got me my driving lessons, and college, and lots of aids for my home to make my life easier. I hope to raise some money for them in the future as pay them back. Catherine and Emily at Exeter mobility centre, who have worked tirelessly to try to get me walking. We are a long way off, but they never give up, because they know I wont! 🀞❀ Maggie, who always messages me, eventhough I am rubbish and forget to answer strate away. You are incredable. Such an amazing woman, who has shown me so much support over the past year, I cant thank you enough ❀❀

One of my favourite photos of me and Shannon ever. This is our 1st Brighton pride, back when I had 2 legs…

So this disease has taken so much from me so far. My leg, my career, my hobbies, my goals, my dreams. But one thing it has taught me is to never give up.and never give in. I can always make new goals, and new dreams. The old ones will always be there, trying to rear their heads and smack me in the face like a wave of heat from an oven door, but I just have to make sure that I open that door slowly, and dont let them hit so hard. My pain is relentless at the moment, but I am finding ways to cope. I hope that this time next year I will be able to walk without excrutiating pain, but that is my biggest dream. So in truth, Im not sure what the future holds right now. None of us do, in this uncertain world we now live in. I just hope my friends, family and little furbabies are healthy and happy. Much love to all of you, and please stay safe πŸ‡¬πŸ‡§

The King and I?

So some good news. ‘At last’- I hear you say. Indeed! I went all the way to London a week or so ago. Had my appointment at the King edward hospital, for the veterans pain management clinic. You have to be assessed before being accepted. It was a long day. 4 hours of driving each way. I actually drove for an hour and a half, which i’m really happy about as i am still a ‘new driver’.

The clinic was really impressive. I had proper conformation that I have crps. They were shocked that I have not yet, despite 3 referals; seen the pain team where I am. I explained to them my history with them. With the doctor accusing me of ‘self mutliation’ because I elected for an amputation. Then the same doctor being booked to place a block in my leg to try to get my pain under control, and thus reducing the possability of complications. So as you may know, I was admitted 4 days prior to my amputation for this procedure to take place. She was given the dates. Suprise suprise, she diddnt show up, despite my consultant ringing her. Now my crps is back. Did her what I would call, neglegent neglectful behaviour have an influence on my crps returning? Maybe? The doctors in london diddnt conform or deny this is a possability.

So needless to say though, that they said i should have no involvement with the pain team at Exeter. So instead they have refered me to Bristol or london. I have chosen Bristol as its closer. They have also accepted me onto the pain management programme, which takes place in London in June. Fingers crossed that something may help. The pain seems to be getting worse every day, but I am ever hopeful that something will come along which will be of benefit.

So a word of advice that I can give to anyone. If you see a doctor or any health professional that makes you feel upset or like a pile of rubbish, firstly you can complain, and secondly id request another professional. They may just be having a bad day of course, but I think I can confidently sat that in my 14 years being a registered nurse, I never took my mood out on a patient. The patients were normally the best part of my day, and often a welcome distraction from working life in the nhs, which is probably the least compassionate place on the planet to work, when it comes to caring for its staff! But thats another story!

So for now, im plodding along. I havnt yet gotten my hand fixed, and so cant train. But I am looking foreard to the day when I can. I am getting to the gym and still working with weights, so that when I can return to full function, I will not have lost all muscle mass, apart from that in my leg, which now looks like a twig! Ha ha!.

Stumpey trying local anaesthetic plasters….diddnt work, but it was worth a go 😊
Little Lily is growing up so fast ❀

I passed….

So as you may remember, last Friday was the day I had been waiting for…. the 2nd attempt at my driving test. I was extremely nervous, and not very confident; but I passed. I was so extatic. The poor examiner…I ended up bursting into tears in the driver seat, when he told me that I had passed! It means so much. I can have a little independance again. We chose our car specifically so that I can get my wheelchair in and out of the car by myself.

The past week has been a definate learning curve. Driving without the reassurance of the lovely Darren at second 2 none driving school, is a little scary. But ive managed it. Ive taken myself to the hospital for my CRPS appointment, and to physio, and to college. Its amazing. Once more, my poor wife can now; finally rest and stay at work, rather than having to clock out every day to take me here, there and everywhere. So a welcome break for both of us 😍

So, as for the rest of the week. I finally had my pip assessment on Wednesday, after waiting over 9 months to have my face to face appointment. For those of you who dont know, you are supposed to be seen within 6 weeks!! I have had my appointment changed 4 times. Then at the beginning of December, myself and the amazing Steve from BLESMA, (who has helped me so much); went to what was going to be my face to face, and the assessor left the building before even seeing me. She basically walked past us and went home! Then because of the mess ups, I was assured that I was going to be seen within 2 weeks of that date (4th December), and I was finally seen yesterday….and then It was delayed by 2 and a half hours!! But I was seen…. the lady was very lovely too. She was very kind and had actually heard of CRPS, which is amazing. Almost nobody has heard of it.

Todays appointment was not too helpful. Now we are trying a bit of tape on my stump…. I understand the premis behind the confusion which my pain receptors are in, and the tape may confuse them….but ive been waiting for 9 months for treatment…and so far we have tried local anaesthetic plasters…which made it worse, and now tape! I still have not seen a Doctor at the pain team, or a specialist of any sort. I have learnt that there are a few treatments which I should have had early on, which may have helped; but I diddnt recieve. An all too familiar story. The same as the pain Doctor who was supposed to arrive on the ward prior to my amputation, to put in a block and try to control my pain prior to surgery, and she diddnt show up; despite being reminded, and my consultant telling her she should be there. This was the same Doctor who accused me of, and I quote ‘self mutilation’, because I elected to have my amputation due to the crps. Those of you who have it, will know why I made this decision.

Anyway, I would also like to thank the wonderful lady who gave a very generous donation to my Just Giving page, where I am raising funds for my freewheel and eventually Osseointegration. This lady knows who she is, and gives me so much support. She is absolutely amazing and completely restores my hope for humanity; showing that there really are some amazing people out there. Thankyou so so much ❀ I have had a few requests to share my page, so I have put a link below.

For those of you who have CRPS, I learnt something interesting today. Aparently what Ive been doing for months….applying heat packs to my stump that is effected; has proven to help lots of people with CRPS. I have 3 of them, and spend alot of time with them on my stump. I wish I could find one which would last more than 5 minutes though!🀣. Also, I have been accepted for a clinical trial on CRPS, so will be winging my way to London in a couple of weeks for an assessment. On the same day I have my assessment for the veterans pain clinic in London, where they offer a residential course with CBT and other coping mechanisms. This I am so greatful for. Ive heard great things about the king edwars hospital, and am looking forward to hearing all about it. Hopefully it will help.

I do hope that all of you are having a good January and are sticking to those new years resolutions 🀣🀞. I have to say, that I made a couple, well, they are more like goals; so watch this space as I hope to fulfill every one of them. Lets hope that this year just gets better and better…..