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.

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.

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!! 👌

…inspite of CRPS & fibromyalgia…

So, what’s this all about? Well, as you may know by now, I have CRPS and Fibromyalgia. As you may also know, I’m training to do a series of events this year using my normal everyday wheelchair, including the London marathon. I get lots of questions around the subject of how I manage to do all of the training for this and keep on with my other stuff. Some of you may know that I’m trying to be a writer, and am now going through the 4th rewrite of my novel, following an amazing manuscript assessment from Jericho writers. I am also a part time wildlife artist, with work in a few galleries. So, spinning a few plates!

So how do you keep going when illness, and pain is constantly slamming doors in your face, telling you to stop right there, and sit down? I wish I had an easy fix to tell you. I am very stubborn. I get more stressed by self perceived failure, than pain and suffering. Sounds stupid, doesn’t it? I suspect I’m not the only person who feels this way. I suspect most people are the same. The fear of failure is such a powerful force. Don’t her me wrong, I am forced on a fairly regular basis to stop. I literally have no choice sometimes. When crps flares come along, believe me, anyone with it will agree, you can’t do anything else, other than roll about in a trance like state of agonising pain. So you kind of, have to stop then. Also, when the fibromyalgia decided to rear its ugly head, and bring a barrage of lovely symptoms, which I can only describe as, exhaustion to a level of virtual catatonia, extreme flu, and migranes… all at once. When this comes, again you have to stop. I’ve found that the only way to get through is to listen to your body on a daily basis, and do what you can, when you can.

Current training for the London marathon 💪

Take today for example. Yesterday, pictured above I was out training… Went to bed last night at a respectable 9:30pm. Then was awake at 3am in pain. I had to get up, and smother myself in bean bags, take my alloted amount of Oramorph, and wait for it to go back to its usual level. So I sat on the sofa, with a decaff coffee, watching Britain’s most evil killers (very interesting viewing at 3am!!). I sat and waited and waited. Eventually at 6am I was able to get a bit of sleep, but was up at 6:30am, as my body told my my usual medication was due! (Amazing how it likes to do that!). So my plan today of wheeling a 10k, and getting on with my character revision for my novel, has gone out of the window. Spending most of the day attached to the sofa, trying my best not to waste the time, when I need to be the most active and allert.

Not looking too good at 3am… oh new hair BTW!

So the answer I have, is to listen to your body and not push it. If it’s telling you to stop, often you have no choice in the matter, so do… Don’t fight it, just take it as it is… Everything is a marathon, not a sprint, so use the off days as best you can, and try not to let them get you down. It is difficult. I struggle with them, but I’m learning all the time, the same as everyone else with these conditions.

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.

Finished Everest, then all went down hill…

So, yep, I finished the Everest challenge. I set myself 3 weeks, but managed to finish it in 9 days. I am so happy that I immediately signed up for the next one, Mt Fuji. Yet, my body had other ideas. Apparently it has been telling me ever since that I’ve overdone it and now it won’t to anything I want it to. I have a huge list of things which need doing before Christmas, and I’m stuck on the sofa! Fibromyalgia flares and CRPS flares are ruling the days!

This is probably the worst thing for me. I’m not one who likes to sit and do nothing, or copes with it at all. I’m used to the crps flares. When these happen the pain is so intense that I don’t notice the world. Yet this new fibromyalgia thing is worse in a way. The pain is manageable, but only because the crps is so severe, that nothing else comes close. Its the nausea, the brain fog, the extreme tiredness and lethargy that I find impossible. Today, I hope to take my boxes to cats protection and little valley animal shelter. A thing I do every year. I put together boxes for the cats for Christmas. I can’t stand the thought of them having nothing on Christmas day, as well as having no home. I would give them all a home if I could. But because of my stupid illnesses I couldn’t take them. I’m hoping that I will be able to do it tomorrow. But I said I’d be there today… I have to change things, and rearrange things, and it’s torture. Anyone with these conditions will tell you. But there is literally nothing I can do to stop it, other than wait for it to pass, and hope it does so, in time for Christmas.

I’m one of those people who believes that christmas is all about tradition. We have lots in our house. As well as the boxes for the cats, we take some chocolates to age concern. We like to spend the lead up to Christmas turning our home into Santa’s grotto. I make gluten free brownies and banoffee pie (my favourite). We buy far too much cheese. 😋 I love to wrap presents and find the perfect gift for people. My mum loved Christmas, and I guess I got that gene!!

My tree, which I love, and my beautiful snowflake made by my good friend Maggie, next to our dedication to our boy, Winkeypoo ❤

So, what do you do when these stupid conditions treated to ruin it all? I honestly don’t know? But I’m hoping that they won’t. I’m hoping for a bit of good luck. 🤞. Our little family hasn’t has much of it this year… Maybe now it will be our turn? But I did wheel to everest (virtually) so that was awesome 👌

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 😁