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.

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!!

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.

Cuddling my little Lily 💙

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.

Me in A&E. Not looking too happy!

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.

Me on the ward…

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 🤞

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!! 🤣

TMR progress…

I’ve now been in hospital 9 days. 8 days post op. Had my TMR (Targeted Muscle Reinnervation) surgery on Thursday last week. Had a bit of a rocky ride since then. My pain levels sky rocketed and not much seemed to bring it down, other than visits from an anaesthetist to put a bolus (big volume) of local anaesthetic into the catheter (tube) which was placed during surgery to administer constant local anaesthetic into my leg. We now think that the catheter was rubbing directly on a nerve, so causing more pain. So yesterday, the Dr’s had a pow-wow and decided to take the catheter out. The hope being that the pain would get better. It did with movement, but not anything else, intact it sky rocketed further. I spent the day screaming in pain. Never felt anything so bad. My CRPS was flaring, and my leg was killing, so it was back to theatre to have a new nerve catheter placed.

Pre and post op

Now, the next morning, there is a significant improvement. My pain is back to its normal level. Which is amazing. Along with the pain before, the Dr’s tried a few new medicines. Wish we hadn’t, as they all seemed to cause the same reaction… Sudden Tachycardia (high heart rate over 100 bpm) and light headedness. One of them dropped my BP as well, and another caused extreme shaking all over my body. This happened 6 times in total. Rather scary. So now, today, I will be happy just to have a day with less pain, and no complications.

Pin cushion!

So now I’m still in East Grinstead hospital. I have to say, the staff are all absolutely amazing. Completely different to any other hospital stay I’ve had. They actually believe you when you say that your in pain. They don’t try to kick you out just because they are convinced you should be going home now! Unlike another hospital. Who decided that after a week, I shouldn’t be in as much pain as I was, and started to get quite impatient with me for being in pain!

Here is what hospital treatment should be like. Where nurses actually care, and no one makes you feel like your a burden. I’d actually consider moving here, just for better treatment! So, fingers and toes crossed for the next few days, and with no more blips, hopefully I will start to recover nicely.

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!

Oh Happy Day 😁

As many blog writers will tell you, through this therapy of sorts, you often receive contact from readers, and some even turn into friendships. I started conversing with my lovely friend Maggie quite some time ago when asking questions on amputee sites. Before my amputation, and when I first discovered I had CRPS, I found the lack of information out there quite astonishing, which is why I decided to write this blog in the first place. I didn’t think for a second that I would end up here, practically begging for treatment, and then finally finding that one Doctor who will help me, because of the amputee sites, and then this blog. Yes, with thanks to Maggie, huge thanks, who kindly put me in contact with her doctor, I am finally on the road to having a diagnosis, and I couldn’t be happier, or more thankful to wonderful Maggie.

I hope she won’t mind me talking of her, but she is one of the kindest people I have ever had the privilege of conversing with. She always checks up on me, and reads my posts, and her kindness has now put me on the road to treatment. For that, I am so greatfull and can’t thank her enough. I know she will read this, so to you Maggie, I thank you so so much.

So, last Wednesday I had a consultantation with a Doctor who is a specialist in stump issues. I was put in contact with her secretary, who booked the appointment. It was via zoom. I was extremely anxious, as I am so used to Doctors dismissing me and lumping everything under the CRPS brush. But to my amazement, she did not. She listened to my symptoms, and guided me through a self examination of my stump. The whole process took over an hour, which is the longest time I’ve spoken to anyone since the surgery. At the end she spoke of a couple of things which could be causing the problem, and what we can do about it. So, when I had surgery, the nerves are cut. When this happens they have nowhere to go and nothing to do, so they go a little nuts! Sometimes said nerves can also be fighting against a suture or clip put on the end of them! So she thinks that my popleteal nerve is either doing this or trapped. So the plan now is to do an ultrasound and some other tests to see if this is the case. This was the first thing which amazed me. I’ve been booked twice now for an MRI. Being told by the non specialists that this is the only way to find a neuroma. What if it isn’t a neuroma, I would ask? Well then we can’t help, they said! If I questioned it, I would be shut down and made to feel as if I had done something wrong. So to find a Doctor who is willing to explain, and say that an MRI is not only the best way, but not the only way to find issues, was just wonderful. It’s as if realising that your not mad!! So, now the plan is to await my appointment, and take the trip to East Grinstead for tests. If it shows what we suspect, then book for TMR surgery. I will explain what that is in future posts, if it is on the cards, but basically it will give my nerves a job to do, and stop them complaining so damn much!!

I honestly can’t even explain how happy I was after this consultation. Someone not only listed to me, but also may be able to help. It meant that some of those dreams which I had lost, may be achievable again. I may be able to walk again! (At least a small portion of the time, I will still have the crps! There is no cure for that bit!). But to have a chance of a reduction in the pain I’m in…and that is everything.

I celebrated with one of my first little wheels in ages!!