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.

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!

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. 💔

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.

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.

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 😁

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 🤞

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.

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.

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.

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.