Fibro it is then!

Yep, as the title suggests, I have now been diagnosed with Fibromyalgia as well! I must admit, that although I knew it was a possibility, when the words fell from the lips of my Gp, it hit like a baseball bat to the face! I went home, sat, and cried! Now I don’t normally cry much. The only things which draw me to tears are the extreme pain of a crps flare, thinking about the death of my beloved cat, Winkeypoo, and seeing any sence of animal cruelty. But this, for some reason floored me. To have another incurable pain condition? I mean, what did I do in a previous life? Am I Jack the ripper incarnate? I’m starting to think so!

So what is Fibromyalgia, for those of you how are unaware of this bundle of fun. According to NHS.uk ‘Fibromyalgia is a condition that causes widespread pain and extreme tiredness.’ It is that, but there are a few more symptoms to keep one on their toes! For me, I started to realise there was a problem when I was spending time with my friend. She smokes when drinking, so when we meet up, both her and her partner would be opposite me smoking away, and following this I was ending up with a chronic migrane and then at least 5 days of feeling like I had the worst flu ever. I couldn’t move off the sofa. The migrane was relentless and I felt in pain all over. I thought the first time that I had the flu! Then after the 4th time of the same thing happening, I realised it was the smoke that was making this happen! Now I had a bigger problem, how could I tell my good friend that her smoking was making me sick? Well, the answer to that is that I still haven’t (chicken, I know! I will soon!). So needless to say, I knew there was a problem. It was when a friend suggested it that I began reading around it, and saw that smoke can be a trigger for a Fibromyalgia flare up! Hurrah I felt! There’s my answer! But then came the dread! I didn’t want it to be true. But I had to find out. So I spoke to my GP who organised blood tests and a Fibromyalgia test. Well, following all this there was no doubt!

So, what now you may ask? Well…nothing! The treatments are all the same as the ones I have for crps, which don’t really work! I can’t take half the medications necessary to help with some of the issues due to be allergic to them, so it’s a case of learning and self management! As I’ve already been waiting over 2 years for an appointment with exeter pain team, I won’t even bother them with this…its clear that they have no interest in helping me at all. I’m lucky that I have a good GP. He is wonderful.

So for now, I will carry on as before. I’ve managed to complete my 11k for Blesma, and have a 5k on the 2nd of December, where we all dress as santa and run, or wheel in my case around the streets of Exeter, so that should be fun.

Oh, this happened! I had a two double page spread written about me in the blesma magazine. I was so humbled by what they wrote. It was so lovely and kind. I’m so glad that I could be part of getting TMR surgery notariety. I am still recovering from my surgery, but seeing some positive results. I can wear my leg for a few minutes now. I know I will never be able to wear it all of the time, but at least 20% will be lovely.

So for now, I am hoping that this new part to my life will not overtake the wishes I have. I believe that we can overcome most things. It is never easy, and this illness has knocked me for six, but there are things I want put of my life, and I will have to make some adjustments, but hopefully desire will prevail! (Fingers crossed!!).

What’s been happening….

Hi there. Well, what a month or so? And where to begin? My road to recovery has not been smooth. I have been suffering with daily flares of pain. Its a battle that my leg fights with itself. The nerve pain sets off the crps, and vice versa. I try not to let the pain get in the way of my everyday life, but it has had to. This isn’t to say that I haven’t been able to do some things… I take advantage of every good moment… So, the good bits. Firstly I’ve finally finished my novel. It’s a victorian thriller/romance. I have been working on this for 2 years. It is currently with some lovely friends who are reading it for me to see if there’s anything I need changing. Then the all important task of hoping an agent will like it and take me on? I have started the second one. It is part of a trilogy.

The copies ready to go out to readers. Fortunately for me, most people wanted digital versions! 🙂

I have also been busy training, as much as I can for the Blesma 11k, which is on the 14th of November. It is a virtual 11k. Next year I’ve just signed up to 2 half marathons, and a triathlon. I’m hoping also to be part of the London marathon 🙏. I will find out after Christmas weather I’m part of the blesma team. Training has been hard. I am having to squeeze it in whenever I’m able. Which isn’t as often as I’d like. But anything is better than nothing!

Next, I am happy to say that one of my biggest insecurities will hopefully be a thing of the past…In 8 months anyway! I have signed up to invisalign, which is basically like fancy braces. I have to wear a clear shield over my teeth so that they can be straitened over time. They aren’t that comfy and I’m sure I’m speaking differently (although my wife kindly says I’m not!). I have to keep them in for 23 hours a day. Only removing them to eat. It’s great if your a snacker like me, because you have to clean your teeth and the covers every time you eat anything, so snacking is no more! So there’s lots of positives, the main one will be having confidence to smile. Apparently I also have a big over items, which I never knew about. This will also be corrected. I have included a photo of them, and in said photo it shows my teeth (those of a nervous disposition, please skip the next photo). I promised at the start of this that I’d be brutally honest! So here we go…

Next, I have had a bit of another health issue. My Doctor and I both think I may have Fibromyalgia as well as the crps. Why do we think this? Well, I have most of the symptoms of Fibromyalgia, but then alot of these double with the crps. So I’m undergoing investigations into weather I do or don’t have it. I’m hoping to be proven wrong 🙏 . But if it is proved, then there’s not much I can do about it, just try to keep plodding along, and not let another thing get in the way of life (as much as I can, anyway!)

I have to mention my amazing wife, who did a 15000 ft skydive last weekend. I foolishly bought it for her for her birthday. Then spent the month in between then and the jump, terrified that something would go wrong, and I may loose her. She is my heart and soul. We have been happily married for 13 years, and together for 15. She is my world, my very best friend. Life without her would be unbearable. So having your world fling herself out of an aeroplane was terrifying. But she was desperate to do one. She did a jump when she was a teenager and loved it, and asked me for years to do another. I finally gave in. I’m happy to report that all went well. I think I nearly had a heart attack 😳, but she was a trooper. Smiled all the way through, and now of course, wants to do another one!

Lastly, I have now got a leg again! Yes you read right, I have a leg! The brilliant prosthetist at Bristol mobility centre has made me a leg that I can wear. I can only put her on for a few minutes at a time, but that’s better than nothing. I can’t wear her on bad days, which are more often than not at the moment, but I’m assured by my surgeon that this may get better. So when I can I pop my ‘flo’ on. My leg is named after ‘flo jo’ the sprinter. I still have a hope that one day I may be able to walk, and even run. I will always keep trying. Never give up despite the odds. So here is my leg.

So, that’s it for now. My 11k will be on Sunday. Can’t wait! Lots more fun to come.

Flare ups…

If you have CRPS, this term is something which you will be all too familiar with. For those who are not so familiar, it is where your ordinary pain level escalates to the unbearable! For me, using the ordinary pain scale of 0 being no pain and 10 being the worst ever, I live at a permanent 7-8/10. When I have a flare this escalates to 10++. Now, you may wonder how you can get worse than 10, the worst ever. Well, this is simple. Just when you think you’ve reached the worse pain you’ve ever had, crps has a way of letting you know that you were wrong, and there is always more to be suffered!

So that is what a flare up is. Now the worst part of it for me is the fact that it dictates what I can and can’t do. When it’s bad, I can’t do anything. I basically roll about crying, and try my best to do my mindfulness. When it’s a semi flare, so basically a 9 or 10 on occasion. It fluctuates between the 2, this is the most annoying. I get these alot. I’m having one right now. Today I was hoping to go for a wheel, write more of my book and had a few chores to do. But instead all I’m capable of is laying on the sofa, with stumpey covered in heat packs. I feel totally useless, and hate the fact that it is dictating what I am aloud to do today! There is no way I can write my book, as it is so important that I get it right. It is set in the victorian era, and so requires alot of research, which is something that is rather difficult when you are such a high level of pain.

I hate this condition dictating my life. Because I am recovering from the TMR surgery, I am having more flares than usual. While the nerves are finding somewhere to go, and causing a ton of pain in the process, they set off the crps. I was told this before the surgery, and was told it could last for 6-12 months…Well I’m now on month 3…I’m so hoping for the 6 minimum, but with my luck, it will likely be the 12. I’m not feeling sorry for myself, just speaking of reality.

So what can be done in these situations? It is so easy to let them drag you into the pits of despair, and believe me, I’ve been there all to often. Every time, I wonder when it will end, and worry of them beginning. There’s nothing more annoying than having to tell a friend who wants to see you, for the 20th time, that your going to have to cancel! I have lost so many friends because of my flares. But what I realised was they were not very good friends to begin with, or they would still be around, and be understanding! Still doesn’t stop it hurting at the time! So now, I try to accept the situation. I lay on the sofa, and try as best as I can to relax, and wait for the flare to end. Then on the days when I can, I try my damndest to use them as fully as I can. I make sure I exercise, weather it be swimming, handcycling, wheeling or going to the gym. I write as much as I can, and I try to do some household stuff. I feel useless if I don’t. I love a tidy and clean house!

So basically what I’m trying to say is, don’t beet yourself up for not making appointments or meetings with friends. If they don’t understand, they are not true friends! Remember if your having a flare, you need to rest. So take the advantage to catch up on a box set or watch some movies. Try as best as you can to be kind to yourself. They are part of the condition, and although they are the worst part, it doesn’t mean they have to take over who you are. You are strong, and you know they will end.

I hope your having a good pain day 😁

Slowly does it…

Exactly as it says, slowly does it! I am finally getting back out there. I have managed three wheeling sessions, two handcycles, and three swims with gym, in 4 weeks. Not as good as I had hoped, bit also better than nothing! The post surgery TMR pain is now in full swing. At least I hope that is what I am experiencing, and there is nothing worse around the corner. All I can say is, omg… When my lovely surgeon told me to expect 6-12 months of he’ll, she wasn’t kidding. It’s like targeted crps flares. Basically like I’m being stabbed by a red hot poker. It can go on for minutes, but more often than not, it seems to be days. The worst part is that nothing helps. The boiling hot heat packs help with the crps flares, but they don’t seem to help with this new pain. So I have to wait until it goes! Pretty annoying. But, hopefully it will be over within the alloted time period? Fingers crossed for the lesser 🤞.

A successful wheel…

So, also, I’ve been privileged to take part in an article for Blesma magazine on TMR surgery. They have followed me through my surgery, and after. Should be fun to read. Not sure when it will be out, hopefully in the next one.

I must say, I will be glad when things are looking up a bit more. Although I know better times should be coming, I’m getting a little inpatient. There is so much of life I wish to experience, and so much of it depends on pain levels, and the predictability of flare ups. It is rather annoying, having to cancel things all the time. Having to cancel dates with friends, general appointments, and I’m yet to start at the track because I had a flare before my first session last week, which was so upsetting. 😢. I can’t wait to start. Maybe even compete one day? Who knows?

The sofa blues…

Oh how I miss wheeling, and handcycling… yes, as you may have guessed, I’m still not up to par. I’m currently awaiting more blood results which will hopefully tell me why I feel so awful! I’m extremely lethargic, to the point of wanting to sleep all the time. Nausea and lack of appetite kind of go hand in hand, and just feeling generally weak and feeble! So, what do you do when you can’t do what you want? Well if your anything like me, you get frustrated and annoyed with your body. It won’t buck up and get better in the timescale you want. The swimming pool is calling, and my body isn’t listening! I’d like to say that I’m a good patient, but I don’t think that I am. I want to feel better now…and don’t like having to wait for my body to behave! But that is what I have to do. So I’m sat watching the paralympics, wishing to be that good! (Maybe one day!). But it won’t happen from a static position on my sofa!! So for now, when I can I’m writing, and doing a bit of drawing, but finding myself falling asleep doing that! It was my 13th wedding anniversary on the 22nd. I managed to be out with my lovely wife for a couple of hours, but then had to go home. I could eat a tiny bit of my meal, but had to leave most of it. I felt like such a party pooper! But when things are like this, it reminds you to give it your all when you do feel well, and to embrace every moment.

So for now, it’s back to convalescing on the sofa, and hoping to feel better soon. Then watch out David Lloyd, for a will be in the pool as much as I can be. My mum would have said, ‘these things are sent to try us!’ And I completely agree. But still wish they wouldn’t!!

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…. 😁😁

20 days and counting …

As you may have gathered, I’m still in hospital! I mistakenly thought I’d be in and out within 5 days. I was pre-warned that it could take a couple of weeks, or possibly longer, but I thought, I’m tough, I’ve been through lots already, I have a very high tolerance to pain… None of those things make any difference to any hospital stay. It is impossible to predict how you will recover, or how long it will take. I can say, that previous to this experience, I was certain that I had reached the very hight of my pain level. That pain couldn’t possibly be worse that CRPS flares with neuromas… I was wrong. CRPS flares, with surgery is far worse. I was warned, so it wasn’t lime I went into this not knowing that things would be tough. But usual me… I shrugged it off, and thought to myself ‘oh well, what’s a little more pain?’ Well, I can tell you… a lot!!! I’m feeling battered, bruised, sore, sick, tired, and missing my babies. All that said, however, things are steadily improving, and the care and treatment I have received here at the QVH hospital in East Grinstead has been just incredible. All of the staff are just to kind, and caring. They have been there for me through night and day. I know you must be thinking, well thats what is supposed to happen in hospital, well let me say… it doesn’t always happen. After being a Nirse myself for 14 years, I’ve seen a substantial lack in compassion within the field. Yet here, they all have oodles of it. They are warm, and friendly. They make me cups of tea in the night when I’m awake in pain. My surgeon Tania Cubison, the genius, always comes by every morning to check on me. The pain nurses have been in every day, trying everything they can to see me through the tough times. The anaesthetists have been to see me every morning and evening to administer boluses into the nerve catheter in my leg. I am honestly, truly amazed.

So, we have lowered my intravenous pain medications now, and are lowering the local anaesthetic meds going into the nerve catheter in my leg. The pain is rather bad a couple of times a day, which is when the anaesthetists step in. But we’re making improvements in that respect as well. The plan is that the nerve catheter needs to come out by the weekend, as its been in too long by that stage, and could increase risk of infection, which I definitely do not need. So watch this space. Hopefully I will be home by early next week, if not sooner 🤞

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.