Two weeks to go…

Yes, I’m nearly there. Nearly at the start line of my first event. 2 exactly yesterday in fact is event number 1, the Exmouth triathlon, then exactly a week later, the Great West run half marathon, which I hope to complete using my normal everyday wheelchair. So, a few weeks have passed since my last post. My wife and I drove the great West run route. Shocked doesn’t even cover it. It was said to be relatively flat! It definitely is not. But I’m glad I knew in advance to get some hill work in. There are 5 very long, very steep hills, that would require standing if cycling up… (gives you an idea of how steep they are!). The worst being University hill past Exeter University. It scared me… But since then I’ve managed to get up an equally long and difficult hill, without too much trouble, so my confidence is not too bad!

Hill training (photos never do justice to the angle!!)

Along with this, I’ve been getting out there on my handbike and of course, swimming. This has been rather tricky, I must say, as I’ve had to relearn how to swim with one leg. I’ve found that I can’t kick at all, as this sets stumpey off in a shivering tangent, which closely follows my sinking, coughing and spluttering!! (Rather embarrassing). So, I’ve had to learn to swim with just arms, and tbh, I’m still learning. So the Triathlon will be a very hard event for me. But I’m super excited.

Getting out on the handbike.

Last week, and this weekend has probably been the most difficult in terms of training, and acceptance when I can’t. I’ve been suffering a huge increase in pain in my stump. Thus followed an appointment with my amazing consultant Miss Tania Cubison. The result being that she thinks there is a problem with another nerve in my leg, and I need to go to East Grinstead again, for an ultrasound and nerve block. So, the pain has been hindering training for a few days. Then I managed to get in a good long wheel, in my fastest time ever, but then my body decided to have a fibro flare, which I’m in day 2 of now! Blooming bad timing as always! If only we could predict these things! I’m hoping that because it’s now, it won’t be when the event is?!

My fibromyalgia, like many other people’s is triggers by a few specific things. Hormone changes is a big one, so being female is a pain. Then there’s smells, hair spray, and cigarette smoke are the worst. Also, stress, so again specific times of the month are against me. For almost 2 weeks straight or sometimes longer, I battle against pmdd, fibro and crps simultaneously! (My poor wife is a Saint!). I train every day that I can, and every opportunity I can. It is hard. It is annoying. But I can’t give in. I met a man out the other day, who asked if I was training for something. I told him what I was doing, and immediately he told me it wasn’t possible (apparently because he hadn’t done it, and he had done EVERYTHING!) And that I was stupid to be event trying to do a half marathon using a normal wheelchair, let alone a full marathon. Well, I was left firstly annoyed, then upset, but now it just makes me want to push through stronger. I told him that not many women have done what I’m doing and I’m hoping to set a world record. His answer was that no one has done it because its stupid! (Thanks for the support!!) But then I suppose you have to expect some people not being supportive. I have the support of blesma, my wife and a couple of online friends. They really carry me through.

Medals collected so far during training and my last good wheel.

So, as for the time being, I’m stuck convalescing on the sofa. Better than yesterday where I barely woke all day (typical fibro!). I’m hoping that I may be able to swim later, but if not, I have to accept that these days happen, and the more I fight, the longer they last. This is the most difficult part for me. Not the training, or the agony of training. It’s my body not letting me train when I want to. Or the looming possibility of more treatment, which could get in the way of it all. The negative people I have encountered are annoying, but I try (now) not to let them get to me. Just prove them wrong! 😉

So, fingers crossed 🤞 and toes! I hope to be fighting fit for my first event, and hope that all goes to plan. That’s all I can do… hope, and keep listening to my body.

Truth about training with chronic pain conditions…

When I began this blog a few years ago, I wanted to tell my story of what my new life was like as a below knee amputee. It then began to converge into a blog about having crps again, and the changes that meant for my life. Along the way, I hoped to inspire and help others suffering with the same and similar conditions, that being disabled isn’t the end of the world. It doesn’t have to be. Yes we all get really bad days. I’m having one today. But the main focus of this was to be brutally honest about what my new life is like. Somewhere along the way I have listened to too many people who have directed me away from honesty, and told me to mute the bad bits, because people don’t want to hear about what it’s truly like to suffer these conditions, and the only people who do know, are the ones who are actually suffering them. But now I want to put a stop to this. I figure, if people want a sugar coated version, then they won’t read this. The truth is, these conditions suck big time. My life has be devastated in so many ways since my diagnosis, then amputation, then rediagnosis, and then getting fibromyalgia on top. I have lost my job as an NHS nurse. I have been bullied by people I called friends, I have lost friends. I have suffered years of discrimination and been called a pain med junkie by the people I used to work around. I have suffered so much indignity, that I can’t remember what dignity is. Yet through all of this, I have realised some important things. My wife, is the most incredible person I have ever met. She has stuck by my side through thick and thin. When pain is at its worst, she is there. When I’m almost screaming, and crying, and talking about ending it all, she makes me laugh and reminds me how much I have to live for.

I know I’m not alone in all of this. There are so many people out there like me. We don’t talk about how we battle every day just to make it through. We don’t say when we have to cancel appointments and dates with friends that every time it chips away at your very soul. We don’t say when we want someone to bash us over the head with a very large bat, just to make the pain go away for a moment! Because it never does. Not ever. Not for one second. I live in a constant 8/10 pain score. As do so many others with CRPS. Then there’s the fibromyalgia, which pops up when you least want it to to add to the pain. Along with it is debilitating lethargy, nausea, migranes and generally feeling like you have the flu. So, yep it all sux.

Yet again, through all of this I have found some amazing things, and people along the way. I have made some wonderful friends, some even part of this blog. I have 1 friend who has truly stuck by my side throughout all of this, and she is wonderful. But other than that I have found a love of writing, and am still working through the edit of my 1st novel. I have found a way to adapt the sports I love, and manage to do them in a different way.

Yesterday I wheeled my furthest yet, almost 12 miles, in an hour and a half using my normal everyday wheelchair. Well on the way yo my first half marathon (yippee!!). Ahead of schedule. The bit you don’t see is today, laying on the sofa, unable to move. In agony, with a sick bowel by my side. I’ve been like this all day. Only now is the first time I could sit up. I’ve had cold packs on my head, heat packs on my neck, legs and stump. I’ve been sobbing, and feeling sorry for myself, and feeling so guilty because I had to miss my swimming session. But that is the nature of these illnesses. You have to take the good with the bad. You have to learn to appreciate every good day, and hope to God that they fall on those days that you need them the most.

Yesterday (top) & today (bottom!)

So, there you have it. I will be speaking out, and telling the truth. I don’t want to hide anymore and pretend that life is easy, because it isn’t, for anyone. Those without any medical problems suffer. Everyone does. We all have our struggles. In this digital age, it is cool to seem happy and perfect all of the time, but no one is. We all have problems, and life is hard. So speak out. Don’t be afraid to tell people that things aren’t always perfect. Own it. We are all human after all. And let’s face it, perfect is kinda boring!! 👌

Progress…

So, in the past couple of weeks I have been making some good progress in training. I have also added another 2 events to the calendar. The Cardiff summer half marathon on the 3rd of July and The Rehabilitation Triathlon for amputee veterans in Plymouth on 23rd June. Both great events, and right in between the others. This brings the official total to 7 events, although there will be a number of virtual ones as well. On theat subject, I managed to complete the niagra falls conquer challenge yesterday, 113km in 29 days. I was very happy with this, as I’ve had to have almost 2 weeks off from training with various flares.

Out an about training.

So, I have had some questions about the gloves which I wear for wheeling. I purchase work gloves from ebay, which retail from £2-7 per pair depending on the thickness. The orange ones in the photo below are warm lined and waterproof, which is brilliant for the winter. The red ones come in various types, and you can bulk buy. They are great for warmer weather, and when it is very warm, I lop off the fingers and hey presto, perfect summer wheeling gloves which virtually eliminate blisters. They are all gripped with a form of latex which is perfect for wheeling.

As for post workout nutrition, I use a sports drink to replace lost electrolytes. Very important if you want to avoid cramp, or other more potential serious health problems caused by an imbalance of electrolytes. I use High 5 as it is gluten and sugar free. Food wise, I’m a bit of a sucker for midget gems, so normally have 50g of them, and some form of protein and carbs, such as a protein bar.

As mentioned, I have now finished my 4th challenge with #theconquerchallenges. They are great fun to do, and really keep that motivation up. I have also now included handcycling, swimming and weights at the gym to my weekly program. I do have a day off a week, and sometimes more when my body dictates it so. Probably the most annoying part of CRPS (next to the pain) is the how unpredictable it is. Also Fibromyalgia follows the same trend = completely unpredictable. Although I have found a couple of triggers, which are so important to identify. I have discovered that cigarette smoke, and pungent hair spray, as well as post menstrual hormone changes are a big trigger for me. These three put me out of training for a week at a time. With CRPS, my biggest trigger is sugar and stress. Also anything touching my leg. So I have to almost wrap myself in cotton wool, and behave, just so I can train. I have had to give up alot of other pursuits to complete this year’s challenges, but it will be worth it, and I’m hoping Blesma will reap the benefits of my labour.

Yesterdays wheel (above), & medals so far 😊

It’s 6 weeks before my first event. My lovely wife will be doing the first 2 with me (running), which will be wonderful. It will be the first time we have both started on the same start line, and her first ever events. I am so happy to be able to share this with her. So, off to do some more training today. Wish me luck!

2022 here we come…

Yes we see 2 weeks in to 2022. So it’s a bit late to say ‘happy new year’, but I’ve said it anyway. For the past couple of weeks I have been suffering a bit. One of those things that people with crps and fibromyalgia can’t control! So it’s taken me a bit of time to writs my ode to 2021! At the moment, I’m laying on my sofa, still suffering a flare of fibromyalgia, so please bear with me if my writing is gobbledegook!

2021 in photos

So, 2021… What can I say? It was a difficult one. It began for me on new years day heartbroken, as just a few hours before I lost my sister, Linda. I had not seen her in a very long time, and because of covid, didn’t get to say goodbye either, which was very tough. Then things looked up a bit with the booking of my TMR surgery. However, the actual surgery was very difficult, and I was in hospital for a month trying to get the pain under control. But eventually, and thanks to an amazing team at East Grinstead hospital, we did, and I got home. Then almost immediately came the access in my hamstring, and the diabolical treatment at the very hospital I had worked in for almost 20 years, the Royal Devon and Exeter Hospital. I was left in a bed for 17 hours in agony. Had my pain medication stolen from my bag, by a nurse when I was in the bathroom. I ended up discharging myself after receiving no treatment at all. A few days later a huge access was found in my leg and I was suffering with sepsis. It was only thanks to my amazing gp that I’m still here at all.

So I eventually recovered from that, and sadly had to retire as an NHS registered nurse. I qualified a few months before meeting my wife. So had been a nurse for 15 years. I loved the nursing side of things, especially my time in theatres. I am a very technically minded person, so found it absolutely fascinating. I met some lovely people, and got along with the Dr’s very well. On my exit interview, with a nurse and friend, she saw how upset I was and said ‘you will always be a nurse’. A phrase I will hold deer. 💔

My early days as a theatre nurse

I was also diagnosed with Fibromyalgia later on in the year, which was not a surprise. But it is rather annoying. It gets in the way of my life in a different to crps. I end up not being able to move for days on end…and for someone like me, who never stops doing stuff, it is a cruel and unusual punishment. Bit it is just another battle that must be fought.

The good bits… I have been out wheeling lots, and managed to complete the blesma 11k, and Mt Everest (virtually). I also wrote the first and second draft of my novel. I am still editing it to try to get it to where I want it to be, and soon will be sending it off to a professional to sort it out, so that I may stand a chance of someone taking it on!

So what’s next? This year I have lots of plans. Finishing my book, and good willing, getting it published is my biggest goal (fitness aside!). Also, I’m working on my usual entry for wildlife artist of the year. I’ve got a few more paintings in a gallery now, which is brilliant.

A few of my more recent drawings using pastel pencil.

Fitness wise! Well, there’s lots. My wife and I began on the 1st of January doing the blesma 90 sit ups a day challenge. Which we have done everyday, and will continue. I have also began my virtual wheel to Mt Fuji, of which I am half way through. I’ve also entered the following: The Exmouth triathlon on 15th May, The great West run half marathon on 22nd May, The Bridgewater half marathon on 04th September, The Goodwood marathon on 25th September, and am still hoping Blesma will let me join their team to do the London marathon on the 02nd of October. Also I am hoping to complete a few marathon distance virtual races along the way. All of which will be raising money for Blesma.

January so far…

So, although January hasn’t got off to the best start, it could be worse. Plus, when you have crps and fibromyalgia, you learn to take everyday as it comes. It isn’t easy, and I’m still learning to be patient with myself. I get very frustrated when my body doesn’t behave in a way I want it too, but I will keep trying. I hope that I get to achieve all the go’s I’ve set myself this year, and will keep plugging away. I’m also hoping that the pain from the TMR surgery will lessen, so I can wear a leg for a few minutes more. I can only wear it a few minutes a day, when my leg is behaving at the moment. Which is great, but I could do better! I am very hopeful for 2022. I hope all my friends have a wonderful, healthy and happy new year.

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.

My article in Blesma magazine

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!!).

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.

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?

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.

Me training!

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!!

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.

Battered and bruised!!

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 🤞

Pin cushion!! 🤣

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.