Breathing and such…

For the past two weeks, I have been attending another pain management course via zoom. This one is slightly different from the last one, as it is targeted towards CRPS. I am half way through my second week, and it is quite helpful (at the start of writing this). It has been great to talk face to face with other sufferers of this rediculous condition, and hear stories which mirror each other! The only thing which differs is the fact that the others have had treatments of all different kinds, and I have not. But on the positive side, I have had the opportunity to learn about the treatment which seem to have a good effect on pain. One lovely lady recieved Lidocaine infusions. I’ve heard of them, but obviously have not been able to try them…and the results seem to be really positive. Hopefully when I seen the people in Bristol, I may be able to have the chance at some treatment. I am extremely hopeful anyway!

My introduction to the pain management course targeted at CRPS.

I would thoroughly recommend the course to others with crps. It offers a different way at looking at things, and a realisation that the pain is there to stay, no matter what you do! Sounds ominous! But you can look at this in two different ways; using it, or not! I am not cured; far from it, but it doesn’t offer that. It offers a chance to try to live with it. Now I’m only on day 1 post course, so I can’t tell you if I am going to be able to apply all of the measures, or that they truly make a difference, but what the course has given me, is an opportunity to try; and some new knowledge of my condition.

A bad CRPS day…

As for Bristol, I am hopeful that this will be the beginning of a new chapter. I have been almost 8 years with this condition. It took 5 to get a diagnosis, and then it came back post amputation. I’ve now had it for two years again. Inspite of this I walked with a prosthetic for almost a year. It wasn’t just the CRPS which stopped me being able to wear a prosthetic; it was this other issue. The problem when you have something like CRPS is people lumping everything else under the same heading. When you have CRPS you know what it is, and what it feels like (you have no choice in the matter), so when something else crops up, you know about it! My hope is that I may be able to wear a prosthetic leg again, at least some of the time! I’m not asking for miracles, just a chance of treatment, of a diagnosis, of some intervention. A chance to be me again. I know I will never run again, and believe me, that has been the most difficult part to accept, but I could at least walk, sometimes. I refuse to give into this condition. I started to…and believe me, it’s not a good place to be…

Progress and reflection…

What a strange world we live in, where we have to beg and plead for treatment! I find it absolutely rediculous! So, as you may be aware, I am fast reaching my 2nd ampuversary. Yes, almost two years has passed since I opted to have my leg removed due to the amount of pain I was in. You also know, that I was unfortunately one of the unlucky ones where my crps returned. Yet I will never regret the decision I made. I could not live in that level of pain, and saw a possible cure, so took it! Now, I am still in the same situation… However this time it is slightly different, as half of the pain in my stumpey is caused by something yet to be investigated or diagnosed!

How do I know it is different? Anyone with CRPS will tell you that there is no mistaking the pain it caused. Burning doesn’t even cover it! Yet the other pain I have is completely different. It responds, albeit only slightly, to pain medicine, whereas the crps does not. It is the reason I cannot wear a prosthetic. To be fair I could only wear one for a short time because of the crps anyway, but when you can’t walk at all, a few minutes, half an hour, of walking is everything. It was recently suggested to me that perhaps the doctors are ignoring me because I complained about the treatment of the pain consultant in Exeter, and her accusing me of, and I quote ‘self mutilation’. To which the hospital tried to tell me that I was lying! This is despite having a witness to the conversation and a letter from her proving her, frankly, malpractice. Where, and I’m sure I’ve mentioned before, she planned my admission to hospital to administer a block 4 days prior to my amputation, and then did not turn up to give it! This, as I’ve been informed by a very experienced pain doctor, could have been the reason why my crps returned! So now because I spoke up, I am being blacklisted for treatment?! How on earth is this even possible, let alone moral! I have been an nurse for 20 years, if you include my training, and part of that training states that you treat everyone the same…there is no discrimination. Yet because I chose to speak up…. To say something about a Doctor who did something wrong, I am being neglected because of it! It is just disgusting!

I love the NHS, and have worked for them for half my life… Yet this situation is not just isolated to me. I have heard of other stories of similar discrimination….. Anyway, there may be some light at the end of this very long tunnel. Blesma, who are an amazing charity, have been trying to help, and get me the treatment I desperately need, have finally managed to transfer my care, or lack thereof, to Bristol. So I am now awaiting an appointment, with, hopefully someone who will help.

To be honest, being left to suffer like this has taken so much from me. I have had to take a learning break from college, because the pain has got so bad that I can’t concentrate. My exercise has gone down considerably, as I can’t stand the cold on my leg, and am having so much pain that I cannot move most days. I haven’t left my appartment for about 3 weeks now! Things are pretty rubbish, I don’t mind telling you. So to have no treatment in sight, is just disgusting, and soul destroying! So now to see some light, is just miraculous. However having two years of my life, destroyed because of speaking up against abhorrent behaviour, is just disgusting. We should not be silenced by mistreatment… Surely we should be aloud to speak out about bad treatment… I feel very lucky that I have Blesma in my corner.. I worry for those who do not have anyone.

New year… New drugs!!!

Anyone with a long term pain condition will tell you, that their home becomes a variable pharmacy of medications. When you have CRPS you will fast realise that most of them do not help at all, but you take them. You take them because the do a little something, and more importantly, give you a sense of control, which this condition; any pain condition, removes. I have tried every sort. I am allergic to all of the ‘pentins’ such as Gabapentin etc, and all the medications which help with neuropathic pain; and so my only options are Opiates.

I have had all of them, bar one. For some reason, I have always been reluctant to have the dreaded Oxycodone. I’m not sure why. Irrationality probably, and worrying of addiction. Which is rather silly, considering any of us in long term pain, are medication dependent… It comes with the territory. But after trying all the others, and my recent  disaster of a medication, which began before Christmas; I am now beginning a new regime of a medication called Targinact (more about this later!).

So, before Christmas I was advised to try long acting Tramadol Hydrochloride. I had been on tramadol before, quite a lot of it before my amputation, and it caused some awful mood swings. But after reaching desperation caused by repetative flare ups, I decided to give the long acting ones a go. I was told that it could stop the amount of flares I was getting. So certainly worth a try.

Well, at first it was quite good. Almost over night I saw a reduction the flares and all seemed to be looking up. Then after only a few days my poor wife noticed a difference, and I remember the moment; she said ‘your not due on again are you? It hasn’t been a month yet’!! So, needless to say, I was acting like I had the worst PMT ever. I shrugged this off, but did start to realise that I was getting rather down, and teary. My insomnia was getting worse than ever, and I began to not handle things too well. Little problems  began to seem as if gargantuan ones! It was as if I was living in a cloud of stress and negativity. My anxiety and depression was getting out of control.

Christmas is normally my favourite time of the year; always has been! Yet, I struggled to find any happiness here either. I thaught it may have been the news of my dear Sister, which did contribute; but it was something else. It was the medication. Even then I didn’t fully realise the extent as to how I was behaving until I finally spoke to my GP and asked to try the other medication which had been recommended. The only one I had not yet tried. I was given 5mg of Targinact, which is Oxycodone and Naloxone combination. I was given this particular sort because I suffer with chronic constipation as well, and the Naloxone bit gets rid of the constipation causing part of the opiate. Now, the dose was massively too low, and I ended up spending one of my worst 12 hours ever, in excruciating pain and going through the worst withdrawals I’ve ever had. Shaking, cold sweating, legs hurting so much, it was as if someone was scraping out the marrow with a spoon! Yet, through it all, when my wife came home; after only a few short minutes she simply said ‘thats the first time I’ve seen you smile in months’. Through all the suffering…I felt better. The fog had started to lift and I felt more like ‘me’ than I’d felt in years!

Unfortunately I had to temporarily go back on the dreaded Tramadol for a week more, as the dose was far too low of the Targinact, and my GP had to seek advice as to the correct dose… So again, I was back to stressed fog! Which was good in a way, as it cemented my suspicions.

Now… I have been on the new drug for 4 days. We are still finding the right dose, but suspect that we are nearly there at 40mg… Considerably higher than the original 5mg!! Explains the withdrawal symptoms!! But more importantly I feel so much better, and am behaving much better. My wife is happier. She deserves a medal for what she has put up with! She is truly wonderful.

It is only now that I can accurately reflect on the true horrors of this drug. I’m sure it doesn’t cause problems for everyone, but I have subsequently heard of quite a few. The listed side effects don’t really cover the actual experience. I have recently even found that it was affecting my monthly cycle. I thaught I was going through very early menopause, as my periods were extremely sporadic, when they had never been before; but this was due to the Tramadol as well! So why am I telling you all of this you may ask? Hopefully if there is someone who you know, or even yourself that is suffering such as I was, that is on a new medication; it may show you that you can do something. No one should have to suffer, just to have pain relief. So many of these medications really help people, but they also can come with awful side effects. If you are suffering, I would speak to your GP about a change. Ask yourself if there is a change in your mood, or ask others. We need the pain relief, but when medications affect our lives so dramatically, it is not living! It is torturous.

2020…. Thank goodness it’s gone!

So, as we are all probably thinking right now… Christmas is over, and wasn’t that a strange one? I personally didn’t change much. I live spending Christmas with my wife and Cats, which we did again this year. Unfortunately we didn’t get to join our friends at their annual Christmas Eve party in kentesbere, which is just amazing. My lovely wife Cat, made such an effort. She panicked on Christmas Eve that she hadn’t really gotten me any presents, and went off with the bank card…. Aaahhh!!!! Is all I can say! I asked her to get a £6 bottle of fenjal moisturizer for the mother in law. We get her some every year, to go with other prezzies, and we’ll betides our forgetting… So off she went… Now we share an account, so when the card is used I get an instant email to say what has left the account! So it went a bit like this… £15, £25, £8, £65, £49….. What…stop! Hold on a minute!! What the dickins has she been buying for that lot!! So I decided not to panic. I was obviously in for a very lovely Christmas this year…

So on Christmas Eve she arrived home, with a few rather nice looking bags, one with l’Octaine on it….I know that shop…I walk past it because it is rediculously expensive…. But there was a bag! Then another from the perfume factory…. Well, I like that too. So quite good so far!

So she sent off to wrap up the prezzies, and slowly and subtly baught into the conversation that she couldn’t find the fenjal stuff for her mum and so baught a nice little set from l octaine……what!!!! What!!!! This is for a woman who thinks that fenjal is the height of luxury and prefers dove shower gel over all others. So my wife thaught that spending £49 on a soap, a bath bomb and some shower get, was a good decision…especially for a woman who couldn’t care a less!!!

My prezzies were lovely. My wife has no concept of bottle sizes for aftershave, and so just got me the biggest bottle ever of Calvin Klein at £65 for the bottle! Her thinking was, it will last me a couple of years!!! And it probably will…and then some!!

Our baby puddy tats has a whale of a time. Lots of prezzies and treats. It was wonderful to see them having so much fun.

So most of you know the worst thing this Christmas. I found out just before that my big sister was poorly. She was fighting for her life in hospital. She has numerous health conditions, and then contracted covid as well. We were told that she was not going to make it..but we thaught there may be a chance. I didn’t get to see her due to the covid restrictions, but her children did, and that’s the main thing. She loved Christmas as much as me, and she made it through Christmas 🎄. But then took a bad turn and passed away on new year’s eve. By niece said she would go out with a bang…. And she certainly did. ♥️

This is one of the few photos I have of her. My sister, Linda in the middle holding my nephew Michael. I’m on the left in the white shirt with my Niece Amanda, and the other two are friends of Linda’s.

I can’t believe this is one of the few photos I have to remember her by. I can’t believe she is gone. It had hit me like a whopping great sledge hammer. She was only 49. That is not old. There was so much life she should have had. Addiction is such a deviating disease. So indiscriminate and unfair and cruel. she deserved a long and happy life, not one of pain and suffering. ❤️

I will miss her till the day I die. I am proud she was my big sister. We had lots of fun when we were growing up. Never saw eye to eye as adults, which is one of the reasons why we weren’t close in the past 14 years. But I still loved her, and always will. ♥️

So now what of 2021? Who knows?

These are my highlights of 2020, for wheeling and cycling.

I am hoping to get back out there, and raise some money for those who have helped me so much. The Aaron Lewis foundation and BLESMA. I hope to complete a half marathon and then a marathon or two… And then who knows? This year I hope to finally get some treatment for my leg, for the pain I am in and for the new issues! With a lot of luck and determination, I am determined to walk again. Even if it’s only for a few metres a day, that’s fine…bit more would be amazing. Bring it on!!

So for the 12 months ahead… Well, my college life will be tricky, on line learning is a nightmare, but you’ve just got to get on with it!! It’sa nightmare getting any treatment for any problems, but that’s hardly surprising. I don’t blame the government. I think they have an impossible job, and are never going to please everyone. I have been looking at the unfolding situation right from my window, and you can see how diabolical it is becoming by seeing the amount of cars in the car park…all day over Christmas….full. people just wondering about the quay. No social distancing going on anywhere. 80% of them were not exercising. Just meeting for a catch up… Which is fine when we’re not in the middle of a crisis! It worries mule that they will even listen now with this lockdown, because they didn’t on the last one. It was busier than ever out there. I had to give up hand cycling because I couldn’t move… And all the years I’ve been here, I’ve never seen that!

Took this fro my bedroom window. As the cars were piling in for the quay!

I hope beyond all hopes, that people listen this time to the advice. It is not fake, and it’s no one else’s fault that those who are refusing to follow the rules. And we see them everywhere. We can all be responsible for saving lives. The lives of our loved ones, and friends and family. It’s down to us. 👍

I hope you all have. Wonderful new year. Make the most of what you can, and never give up. When life throws lemons…make lemonade 👍🎈😁

Tis the season….

Good morning. Well it’s nearly here! The day of celebrations and fun! I absolutely love Christmas. It was always a huge deal in my house, growing up. My mum would go all out. Even when I was really young, and my mum was a single parent, we didn’t have much money, but she would make it the most magical day. We would sit to the usual huge Christmas dinner, which always started with a prawn cocktail, and then a huge dinner with every vegetable known to man, and finishing with Christmas pudding. She would always put money in the pudding, and my two sisters and I would eat as much as we could to get the allusive pound coin! 🤪. But she would make everything herself, and it was so delicious that we would have eaten it anyway.

Things now a days are not much different with myself and my wife. She didn’t really celebrate Christmas in the same way, so I introduced her to what a proper Christmas looked like (to me anyway!). Lots of decorations, and food, and fun. She absolutely loves it. I haven’t spent Christmas with my family for a long time. My mum passed away during my first year at university, when I was training to be a nurse, and then the same old story; we just lost touch. There were alot of other details involved, but there’s no need to go into that ☹️.

Next to our tree, after completing the Santa 5k.

Last year was unfortunately dampened by our boy Winkeypoo passing away at the end of November. But we baught it together in the end, and celebrated for him, as he loved Christmas as well. He loved opening his presents and rolling about in the tinsel! So we decided to dedicate every Christmas to him.

Winkeypoo at Christmas.

This year has been a very difficult one for everyone. Covid has ridden us of our rights to see our loved ones. I think that alot of us want to assign blame for this, but the only thing we can blame is covid itself. I think we have to get on and enjoy the best we can. Our Christmas is never going to be the same. My sister is extremely poorly in hospital at the moment. She is a fighter, and loves Christmas as well. We were told on Tuesday this week that she had hours to live, but she is still hanging in there. I believe she is hanging on for Christmas. That time of year where we were always so happy ♥️. I have not been aloud to see her due to covid rules. Lots of people keep asking me if I’m not angry that I can’t see her. What good would that do? Being angry would not change things. She has her children with her, who are the most important people right now. ♥️

Now my point of telling you all this, is no matter what your circumstances, try to enjoy the best you can. For yourself, for your loved ones, past and present. Try to be kind and help where you can. Spread some joy! And remember your loved ones.

It breaks my heart to think of people being alone. No one should be alone at Christmas. So, if you are aloud in your covid restrictions to bring someone into your home on Christmas day, please do. You won’t regret it. Sharing your joy, passing it on, is probably the best gift you can give.

So, in the best way possible, have a lovely Christmas. Keep your spirits up and do the best you can. Remember it has been a hard year for the world, everyone is in the same boat, so cheer up who you can, and help who you can. I hope everyone has a lovely Christmas. ❤️

Finally, I saw a Dr!!

So, as the title says, after 19 months I finally saw a vascular surgeon! It was short; the appointment, not him! He seemed fairly nice. He was basically only interested in checking that my leg wasn’t dying! I’m happy to say it isn’t. But as for the other problems, well I am not exactly sure. He said he will book me in for an MRI to see the deeper tissues! But there could be a wait… Hopefully not another 19 months! At this rate, if I can ever walk again, it will be with a Zimmer frame!!

It was nice to finally feel like something might be done. We discussed the possibility of an above knee amputation. This, as you may know is something that I am considering, if all else fails. He said that it would make my mobility worse!!! Worse! I’m already wheelchair dependent! How much worse can you get!! 🤣

Seriously though, I know what he means, but I’m fast approaching the decision that this may be my only avenue to walk again! This condition has taken so much from me, the only thing I ask for in return is that I can one day walk again. I want to walk, to run, to go back to Kathmandu and see Everest base camp. To walk down the road, hand in hand with my wife, which is a bit tricky when your wheeling! Last time I tried I ran over her foot, and my chair bruised her shin!! 😂.

So, I sit (again) and wait for an appointment. Hoping that I will receive one some day!!

Until then, back on the bike today (yippee) to fight my way through the crowds of people shuffling along the cycle path of Exeter Quay. It’s the birthday tomorrow! Another year older!! A birthday on lockdown. A ride in the morning, and then movie day with my favourite person (my wife). Have a great weekend all🤞

Last weekend on the bike 😃

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!