East Grinstead hospital

So, you may have been wondering (or not) where I have been since the London marathon. Two weeks post marathon I had scheduled surgery for another nerve issue in my stump which was getting considerably worse throughout my training. I had another TMR surgery with muscle graft, which went really well. Unfortunately I had a nerve catheter in my leg for pain control post op. These work really well and really help with pain, but for me, they seem to cause infections. We diddnt know this trend until this point. I had the catheter removed after 4 days and was already very poorly with a huge infection. I ended up going back to theatre to have more surgery, and my leg was filled with puss. I was then put on very strong Intravenous antibiotics, but after another week the infection returned, and so this meant more surgery. More antibiotics, more cannulas and more pain. I felt pretty unwell. I lost about a stone in the month I spent in hospital. The saving grace was that my surgeons were phenomenal, and the nurses at East Grinstead hospital were amazing. They were so efficient and attentive. I can’t thank them enough for their care.

After a month, I was finally well enough to go home, but was still in a considerable amount of pain. But after a week more, I decided it was time to get back to training. Unfortunately I had lost quite a bit of muscle and strength, and so the marathon distance which I was used to wheeling, had become almost impossible, especially in the rain and freezing cold weather. But all hope is not lost. I am still out there training as before and building my way back up to marathon distance. My goal being to make it back to marathon before Christmas day. This will be weather depending, but I will do my very best to get there. I don’t give up easily, as you all know!

I can’t wait to get back to where I was before. Some exciting news came when I was in hospital, I have been accepted for the London marathon again next year, so I will be entering and attempting to beat my own record. So this provides a huge incentive for me to get back there ASAP. Also, if all goes well, we are a go for attempting lands end to John O’groates using my everyday non-sport wheelchair, which will be another world record. We are hoping for August 2023. So this is another huge incentive. So it’s training, training, and more training for me. I am loving it, and hating the cold! It makes wheeling exceptionally tricky, which very slippy hands. But, it is all good strength work, and I can’t wait to reach some new goals. 😍🙏

Come on! Let me train!!!

Well, as you may guess, I’m starting to go a little stir crazy! This infection is relentless. I’m now on another type of antibiotic, Co-amoxiclav. The Flucloxacillin ran out the other day. It was very strange. I went to bed feeling a bit better. Then by lunch time the next day, after not having any antibiotics, I was back to feeling awful again. My heartrate was over 100 again, known as Tachycardia. I felt extremely tired, to the point that I couldn’t stay awake. I felt very sick and had no appetite at all. I also felt quite shakey. I had no temperature, but have not had a significant temperature (pyrexia) throughout the whole period of my illness. There is a common misconception that you have to have a temperature to have an infection or sepsis. My consultant said he thought I was septic when I finally received IV antibiotics. There is such a thing as hot sepsis, where you have a temperature (a temperature above 37.6) and cold sepsis, where your temperature is normal or below. Normal is different for everyone, but in general the normal range is 36-37 degrees. I am normally 36-36.5 when I’m well, so I know if I’m at 37.5 I’m usually not too well. We’ll my temp was a bit up bit not into the 38 plusses, which is where worrying begins. So at first they just focused on that. Until they finally realised that my other observations, like high heartrate (over 100 bpm) and low blood pressure was telling a story. Normal blood pressure is 120/80. Low is considered 90/60 or below. High is considered to be 140/90 or above. Mine was 60/40 at one point. My heartrate was 140-160 at rest, whilst laying in a bed. So there was no doubt I had a problem.

So, observation lesson over, I was basically feeling rubbish again. I decided to try 111 first before going to A&E, hoping to speak to an on call Dr. I spent over an hour with the phone on hold, and eventually gave up. So we were off to A&E again. We’ll bloods were taken and my platelets were high, my red blood count was low, and my crp was up. All showing infection. So I started on antibiotics again! The next day I felt a little better. Then on Monday these ran out and I fortunately spoke to a great GP at my local Dr surgery who decided to try another one. So here we are. Awaiting more blood results today! But still feeling rubbish to be honest.

So here I am. Still feeling to rubbish to train. We now have access to a new pool and gym. My wifey, who is amazing joined us up to David Lloyd whilst I was in hospital, as she knew how desperate I was to swim again, and start training for a Triathlon. So now I’m at home, my handbike now accessible, my wheelchair itching to get going, the new pool and gym waiting for me…and I’m still stuck to the sofa. Finding it difficult to eat more than a bowl of cereal and a piece of toast in a day. My muscle mass is deteriating, and I’m feeling absolutely rubbish. No energy at all. Then I’ve been sat watching the Olympics, which makes me want to train more than ever. I want to do my half marathon, but now I know I can’t. I want to do a marathon. I want to start training to do Triathlons. Hopefully one day an Iron-man. I have so many ambitions, and yet being glued to the sofa, is not one of them! It is quite depressing to be honest. I’m not too patient at waiting to do things I love! I just wish this infection would listen to me, and GO AWAY!!!

So for now, it’s fingers crossed. Try to eat, and be patient 🤣. One day I will be back out there…and that day will be amazing!!

So good to be home.

I’m home, as you may have guessed from the title. I finally made it home at 7pm on Tuesday. I think it was probably the longest discharge in history! Saw the Dr’s o Tuesday Morning at approximately 9am. They said they’d have me ready for lunch time!!! My wife made her way after work at 2pm. I ended up sending her home before she even made it to the hospital, knowing I was nowhere near discharge. I had gotten myself dressed, and my bag was packed. By 3pm I gave up, and my pyjamas were back on!! 🤣 My wife then remade her way at 5pm, as we were told that things were ready! At 7pm finally I was discharged. I waited 10 hours for a discharge letter and a few tablets! But, to be honest, I didn’t care. By the time I got through my front door, and into my pyjamas again, and was cuddling my little Lily, nothing else mattered.

My experience on Wynard ward was thankfully very different to the disastrous 13 hours on AMU. All of the staff were lovely. I had a fantastic student, and I wish I remembered her name, (I’ve always been useless with names!), but she was incredible for her level. She’s only a few weeks away from qualifying, and I’ve met nurses who have been qualified for years who don’t sho her professionalsm, level of caring or expertise. She will make a fantastic nurse. I do know she had a job already, and will be mentored in it by my best friend from university, which is amazing. The Nurses were all lovely. The endless cannula attempts. I think I counted 24 attempts in total! My veins completely gave up, and ran for the hills!!

I am still a little weak, and on antibiotics. Am very much looking forward to getting back to training. My lovely wife joined David Lloyd whilst I was in hospital, so I can swim again. In a pool which will not be overcrowded. It also has a handbike in the gym. I’m hoping to do my first swim on Saturday, all being well. I’m also going through classification for Triathlon for next year. There’s one in May which I’d like to do. As for my half marathon on the 5th of September! I’m going to have to see how I get on with training. I’m desperate to do it, but I know I’ve been through alot in the past 6 weeks, so have to build up slowly, and accept it if I can’t do it. I will find another to do instead! So for now, I’m trying my best to eat when I can, and stretching. The antibiotics make appetite a challenge, and make me very nautious, so the only thing I can stomach at the moment is toast, cereal and midget gems!! Not the best diet for fitness!!! But again, I’m home…. 😁😁

And I’m in again….

So, it’s been a few weeks. Finally made it home on the 19th of July from East Grinstead QVH hospital. They were incredible. Their treatment and kindness blew me away. Unfortunately on discharge, and just before I started having pain in the back of my leg where the nerve catheter was situated. We hoped it was just bruising and swelling from the sheer quantity of fluid that had gone into my leg. So after a couple of days at home, the pain got worse, and a tennis ball sized lump started to form in my hamstring (muscle in the upper back of your leg). I couldn’t sit on it, or even touch it. Systematically I also wasn’t doing too well. My heartrate was permanently over 100bpm which is known in the profession as Tachycardia, and my blood pressure was very low. These are all signs of infection. After a few days I put through an econsult with my gp. I was told they would phone between 1-6 on the Friday, but no one called. By 8pm the pain was so unbearable that we made the decision to go to A&E.

So after a bit of a wait I was trialed, and seen by a lovely Dr, who said I had to be admitted. They were very busy, and I was told that when I got to AMU, which is an emergency ward, I would be given pain relief, and they would scan my leg or do an ultrasound, and would be started on antibiotics. She reassured that they would get to the bottom of it. Well, none of this happened. I spent over 12 hours in a bed begging for pain relief, and no one would listen. Not only that, but they took my own medication from my bag, without my knowledge when I was in the bathroom. I have a chronic pain condition, and can’t go without my usual medication, and they wouldn’t even give me those. They did no tests, gave no treatment, and basically ignored me completely. I asked why, and was told they were busy. There were 5 other people in my bay and all 5 relieved treatment. Yet I was treated like I was a junkie asking for meds. They made a judgement and that was that. It wasn’t until 13 hours when I had asked repeatedly to speak to the ward manager that she showed up. She was lovely, and had no idea of what I was suffering. She immediately gave me my own medication back and I told her I wanted to go home. The crps was out of control by that point. I was briefly seen by a Dr, and despite the overwhelming symptoms pointing towards an infection, he refused antibiotics. Over the weekend I deteriorated further. I saw my gp on the Monday, who said I needed immediate treatment. But I had to go back to the same place. Well I just broke down. I couldn’t bear to be treated that way again. But she was amazing and spoke to the manager. Told her what had happened, and asked if I could be seen in the other part of the ward. So I was. There I had an ultrasound where they found a large sack filled with fluid inside my muscle. I was started on antibiotics and let home with an appointment for a scan the next day. I had my scan which showed a huge amount of swelling and a large fluid filled sack. The next day I was admitted for treatment. I ended up on the sister ward of amu and they were much nicer. I ended up being moved to Wynard ward where they’ve been wonderful. I had the lump drained by an amazing consultant in radiology. It was filled with what he called, pea soup… lovely puss. He took one look at my observations and said that I was septic. I was immediately started on IV antibiotics and oral antibiotics… and here we are. They know there is stafflococcus in my leg, but not sure as yet if its the MRSA (MRSA is a type of bacteria that’s resistant to several widely used antibiotics. This means infections with MRSA can be harder to treat than other bacterial infections) or another type. So I’m in isolation just incase, and awaiting news from microbiology, hopefully tomorrow.

They have been lovely on this ward. All the nurses and Dr’s have been fantastic. My veins are all rather rubbish now, so if my antibiotics need to continue longer, I may need a more permanent solution, like a long line or central line. Pretty scary stuff to be honest. So now I’m just waiting for news. Crossing all fingers that I can go home soon, and finally be on the road to recovery. The access and infection are a very rare complication of having a nerve catheter. So of course, being the Queen of rarities, it was bound to happen to me 🤣. Still, onwards and hopefully upwards. I’m busy watching Nurse Jackie box set, and my wonderful wifey has been to see me every day, so can’t grumble too much. The TMR surgical wound is so neat and I think it’s already helping. So, hopefully good news for tomorrow 🤞

The countdown begins…

In 3 days, or 4 including today, I will be taking that trip again to East Grinstead. This time for a few days (5-14 – depending on pain!). I will be having my TMR surgery. I must admit, a fair amount of trepidation this time. I’m not unfamiliar to general anaesthetics, this will be my 10th! Yet for some reason, this time I’m a bit scared! I think it’s because I will be so far from home, and my wife won’t be there when I get back to the ward, which so far, she always has been. But mixed with the anxiety is a ton of hope. Hope that this will work, and I will be able to wear flo (my prosthetic) again. Even if it’s just some of the time! I’d even take 20% right now! I’ve accepted the fact (mostly!!) that I can not run again, and my sports will need to be slightly different, but I can’t accept never walking again.

The above photo was taken last week. Yep, I’m back out there, training for my first half marathon using my wheelchair. On the 5th of September I will be wheeling through Bridgewater in their half marathon. I can’t wait. Then who knows? Hopefully a marathon next! My wife will be running it too, although she will probably have time for a cup of tea and a nap at the finish line, by the time I get there!! But it’s all good fun.

So with the pending hospitalisation in mind, a few people have asked what the most important thing is for one to take into hospital. So I have thought of a few, which I wouldn’t be without.

1) Ear plugs. Hospitals are supposed to be a healing environment, but trust me, you won’t get much sleep, especially post operation. As an ex registered nurse, I can tell you, I was one of those annoying people who would wake my patient at all hours to take their blood pressure! To put in needles, remove needles, pop in tubes, remove tubes, change dressings, check your daily oblutions! You name it, the list is endless. Plus, unless your accustomed to communal sleeping arrangements, you can pretty much expect that half the room will snore! So, ear plugs are a definite necessity.

2) My portable dvd player and a ton of dvd’s. Why do I take this, in this technical age of tablets etc.. Well you may be surprised to know that not all hospitals will let you have their WiFi password, and the tvs can be hideously expensive, up to £20 for 3 days in some places. So as a fail safe, I take my own entertainment.

3) Your own snacks and Tea bags! If your like me, and allergic to gluten, you can never tell what food your going to get. Although I have to say, so far it’s been pretty ok, the snacks are pretty limited. When I’m in pain I struggle to eat, and when I’m nautious, even more so. So I like to have my haribo to hand, which is about the only thing I can stomach when pain and nausea come calling. Tea bags… well, I can blame Piers Morgan for that one. I never used to be a Tea snob, until one morning, whilst watching GMB, good old Piers mentioned he only drinks Yorkshire gold. So one day I decided to see what the fuss was about… Needless to say no other Tea bags will now suffice, and as a result I will be taking in my own bags for a proper cup of tea!

As for other bits and bobs, it’s up to you. I would of course recommend pants and pyjamas, and some good reading. I will be taking in the first part of my manuscript to continue the editing process, which never seems to end! Plus a couple of books to read.

So for the next few days, and for a few before, I am on strict isolation. The boredom is setting in… although I have lots of work to do, I miss riding my hald bike and wheeling. But not long now and if all goes well, I will be back to it. Have a great weekend all 😁

It’s a Neuroma!!!

Finally, after two years of saying that I have pain, other than my crps in my stump, I finally had an MRI. The results showed a neuroma and a second area of thickening around my stump. Finally, after being rebuffed, ignored, made to feel awful… I was right. So, I recieved a call from Bristol to tell me the news. They said that there was a few treatments, but we’re still reluctant to do surgery or even touch it because of the CRPS! This is despite the fact that it would seem that the Neuroma(s) are setting of my CRPS. People are so focused on not setting off the crps, that they are prioritising it over long term treatment, basically confiding me to my wheelchair for life! Luckily for me, I had my appointment in East Grinstead, and the amazing team there see things differently. They believe in treatment, with the realisation that my crps may get worse, but they inform and let me decide.

During my visit, I had an ultrasound, which was thoroughly explained, and had the consultant present. I then saw my consultant, Dr Tania Cubison. She was amazing. She explained everything. I saw videos, photos, and was told the actual facts and statistics of probability of recovery. I felt fully informed, which I have to say, I’ve never had before. I don’t know if it’s because I’m a nurse, or weather others have had such treatment, but at my local hospital, I’ve never had as good a treatment as I did at East Grinstead. After I saw my Dr, I then saw a anaesthetist, who was again very thorough, and explained everything. Now this is a big thing for me, as when I went in for my amputation, I was taken into hospital 4 days before the surgery to have a block by the pain Dr, who didn’t show up to do it! As a possible consequence of this, my CRPS came back! The anaesthetist resured me that he will show up, and couldn’t believe that someone, or a service would be so unprofessional. He plans to put in a block the day before the surgery, and then they will place two other blocks when I’m unconscious. He stressed the importance of doing this so that they can ensure it works, and doing it right before having surgery, doesn’t give you a gauge of weather it is placed correctly, which is what happened to me!

Above is a picture of a neuroma.

So then I was off to see a pre op nurse. They were also very nice, and seemed quite knowledgeable. The were very thorough. I have never had bloods taken before in a pre op assessment either. I have also never been made to feel so welcome. I have to say, I am very glad I will be going there for my surgery. The thought of going to the Roayl Devon and Exeter again, where they’ve ignored me, treated me like a sub human, and neglected me, wasn’t very favourable. So this should be happening in August, we think. The plan is to do TMR surgery on three of my nerves. There will be an approximately 8-10 inch scar on the back of my leg. I have been told to expect a hospital stay of 3 days to 2 weeks, and their goal is to ensure my pain is under control before they kick me out. Another refreshing change…

We have a plan… I couldn’t be more relieved, and grateful to my friend Maggie, who without her referring me to this amazing specialist Doctor, I would not be in this fortunate position. It is amazing that I’ve had to go so far away, just to be taken seriously, and to have treatment. It angers me, as I’ve worked at the RD&E for almost half of my life, including doing my nurse training there. I’ve been a registered nurse there for 14 years. Yet I received such diabolical neglect, that they were just going to leave me in pain for the rest of my life. I still have not received an appointment with the pain team, despite 2 years of urgent referrals being sent. This is how poor the treatment has been for me… having none! Anyone with a Neuroma will tell you, it is excruciating, as is CRPS, and one sets off the other.

All I can do now, is wait for the date. I couldn’t be happier with East Grinstead. Just wonderful.

Indignity!!

So, right now I’m sat in the waiting room of the accident and emergency department in Exeter. I was bought in by ambulance earlier (will sat why in a minute!). Now I have been wheeled on a hospital wheelchair, one with no chance at self propulsion, into a waiting room, on my own, and I’m dying for the loo!!! I never wanted to feel the way I do now. Completely useless and cast aside. I have literally been dumped. I am totally stuck, unless I crawl across the floor. My wide is at work, and although will be here at some point, I’ve now been waiting for 2 hours! Whilst sat here a number of nurses and doctors have wondered passed. I tried to get the attention of one of them, to no avail. I feel so helpless! Why would someone just dump someone like this, when they know they are immobile?

So, earlier today, I was sat drawing, as usual, on the sofa, when suddenly I had chest pain, then jaw pain, and my heart rate escalated to 206. It felt as if my heart was trying to break through my chest. I felt nauseous, light headed and short of breath. It was absolutely terrifying. I have never before thought I was going to die. Now the nurse in me went straight to impending doom, and with the symptoms it was hard not too. My mouth was dry, my fingers numbing and I was cold sweating. I thought I was having a heart attack. Now, as I’m still here, it is evident that this I not the case. I think I had a panic attack. Very strange considering I was just sat on the sofa. Last time I checked, drawing was a relaxing activity, and although I had Buffy on in the background, it is not scary enough to trigger a panic attack. So another perplexing moment!

So, the paramedics arrived, and with chest pain and a heart rate of 206, they bought me into A&E. Turns out, it was the wrong day to have an episode of any kind, as it is so busy. So, I was taken into a room, they did my blood pressure, asked a bunch of questions to which no one listened to the answer. They were too busy sorting out a drunk lady in the corridor! Next thing I knew, I was dumped in the waiting room. No explanation, no dignity, no help.

Now, I’m still sat. Needing the loo. Nowhere near a toilet, and even if I could see one, no way of getting there! I asked the paramedics to bring my chair, but they said I didn’t need it, and to be honest, at that point I felt as if I was going to pass out, so didn’t think to question it!

I had the pleasantries of two children noticing my lack of leg, who proceeded to amuse themselves greatly with gears of disgust! Not that things like that bother me, because they don’t. They’re just curious, but when your feeling like a lesser human, the last thing you want, is any attention drawn to you. I just want to go home! My wife suggested on the phone, to self discharge. Good idea, but how? I can’t go anywhere. I’m totally stuck!!!

I never want to feel like this again! Not ever. I just want to go home, and have the dignity of being able to go to the toilet before it’s too late! Yet, I can’t, not until my wife can finally get here, if they let her in!

CRPS strikes again!

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’!

Systematic neglect & lack of treatment!

Sat here this morning, following another sleepless night of pain and discomfort, I can’t help but wonder how things have gotten this bad again. So I started to think about it. I certainly know that I’m not the only person who is suffering like this. There are so many others. Then something dawned on me. There is a distinct lack of action and compassion which our care system and givers are showing us.

As an NHS Registered Nurse myself (at least for a few more months, until my retirement is finalised), it is hard for me to look at or admit to the systematic failure within certain areas. My experience, as some of you are aware, is that of disregard and systematic neglect. Other than my acting GP, and the amazing treatment at kings veterans hospital in London, most others have done nothing but lend accusations of me lying about my condition, accuse me of self mutilation, or ignore me entirely.

My typical day. Spending all day with boiling heat packs to try to help with the pain.

Over the past 14 months, I have received no appointments, No investigations, & No treatment despite numerous visits and phone calls to my GP, which resulted in numerous referrals by him, and yet no appointments, investigations, treatment. My leg has never been examined or looked at at all. Instead I have been left trying to self treat the most painful condition known to human kind.

My condition, returned within weeks of my amputation for the condition itself. How do I know? Trust me, when you’ve had CRPS once, then opted for an amputation to rid yourself of it; there’s no greater fear than that of its return. Believe me; once you’ve had it, you will never forget it. To put it into context for those of you who are lucky enough not to know CRPS, I would ask you to imagine the following: Stick your foot in the oven and turn the temperature up to 300 degrees, and then sit there until you can’t stand anymore, but you can’t remove your foot. That pain and sense of urgency you feel to make it stop, is what any CRPS sufferer is living with every day. There is a reason it’s nicknamed ‘the suicide disease’.

I am sure we have all heard and seen many excuses for the actions, and lack there of, from some care givers. Well I say that there is no excuse for any of it. Refusal to treat, to act, to listen is simply neglect.

I am not writing to elicit a complaint, but to show solidarity to those who have suffered, such as I, at the hands of the Illinformed, and frankly neglectful people. Rather than ignoring us, hurling accusations toward us, stripping us of our medications, and leaving us in unbearable suffering; would it not be a better use of time to look into this horrific condition. My belief as a care giver is to learn and research any conditions which are new to me, and understand them….not make a judgement of ‘it’s all in your head’ It is not.

I had a physiotherapist acuse me of lying about my condition because I needed a wheelchair (and this was after my below knee amputation). A GP spent an hour detailing various similar stories to try to elicit a response from me, which matched her beliefs; that my condition was all in my head. An experienced pain Doctor, who had me in tears, when she told me that she thought amputating my leg because of the agony I was in, was ‘self mutilation’. Even someone I called a friend, tried to tell me I couldn’t possibly have the condition I have, because I don’t make a Broadway show of the pain I’m in. Newsflash idiot: the only person who gets to see me like that is my wife. If I’m having a flare up, I don’t go out or see anyone!

So what can we do? I wish I knew. But I do know that sitting back and letting this happen time and time again is not the answer. We need to build more awareness of our condition. We need to stand up to those who deny our condition exists.

I had the privilege of attending a pain management course which was organised by BLESMA at Kings hospital for veterans in London. The course was via zoom and it was completed a few weeks ago. I had the opportunity to learn more about the science behind pain, and techniques to help. I was told every day that it is not in my head. They were and have been since, incredibly supportive. This is the kind of treatment we deserve. I find myself very fortunate to have been accepted on the course.

This is the kind of treatment we deserve and are in desperate need of. We need to educate ourselves with an armour of informed responses, for those who do not know or understand our condition. Know our treatment options, so we can give our care givers options and ideas, and question when treatment is not given. Then maybe combined with our knowledge we can back up the need for them.

This condition is rare. It is not widely researched or known about; so those of us as the sufferers have the opportunity to educate, I form and help with the treatment we are lacking.

This simply shows where CRPS sits amongst other pain conditions. Enough said!

Now it’s done!

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

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

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

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

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

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

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

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

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

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

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

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