Thunder & rain!

Life has been quite a whirlwind of ups and downs since leaving hospital. I managed to get a complete package of backing for this year’s venture, which included everything I need to make it happen. Then, unfortunately the wonderful chap became unwell & now that has gone. So everything with regards to this year’s big events are up in the air. I can’t complete a venture like lands end to John O’groates without support, and I can’t plan it all on my own whilst training the amount I need to in order to complete this. But I am ever hopeful that someone will come along on a white horse and rescue this venture. It would be absolutely amazing if I can make it happen. It will be a world first and a new world record. But I also have a plan B, which is the wheel for 24 hours straight using my everyday non-sport wheelchair. This would also be a world 1st and world record. But even though it would be physically extremely demanding for me, it doesn’t feel like a big enough challenge to raise the kind of funds I’d so love to raise for charity. So at the moment I am training as much as I can, and prepping myself for the London marathon again. But it is awful being in limbo, and completely up in the air with plans. One minute everything was set & now, it has gone. Its pretty hard to take. (Although I do completely understand, and absolutely adore the lovely chap who was going to help me). But it is still very difficult not to be thoroughly disappointed.

So I continue to train in the wain and sodden ground, which makes every km feel like 10. I’ve had to adapt things and shorten my sessions, but bring them closer together! It’s the only way to keep going! Those of you with CRPS will testify that this kind of weather is awful for crps. It sets off numerous flare ups of that and then the fibro rears its ugly head to get in the way of things! But I still try my level best to carry on. Making plans for both events, just incase. Of course lands end is preferable, even if it isn’t this year, but next, I still really want to make it happen. It would really put the Aaron Lewis foundation charity on the map, and give me the chance to get CRPS out there. The plan was to complete a warts and all documentary along the way, where I would show exactly what living with crps and fibromyalgia is like. Plus training to a high level with both. As you know on social media it is pretty difficult to show exactly what things are truly like. So it would be great to show everything. To expel some of the myths. Like the favoured question by most of us “you don’t look like your in that much pain!” What is that? It’s such a stupid thing to say! My reply is normally an explanation to try to educate, but often I’d just like to say in return “well, you don’t look that ignorant!” But I don’t. I would guess that none of us do! Anyway, so training continues, and the flares are rife with the rain and drops in atmospheric pressure, but that’s the way of things.

1st time wearing my London marathon t shirt!

I hope to get something concrete sorted soon. It is very tough attempting to train for two very different events. Both of which I need to ensure are accurately prepped for. My lovely wife, who is always brutally honest, thinks it may be best to do lands end next year now, and prep ourselves. But the amount of funds it would cost to complete this seem impossible to arrange. This was where the lovely chap came in. He knows all the right people who would help. But I never give up on anything. So I won’t give up on this! Hopefully I will have some concrete good news soon 🙏

East Grinstead hospital

So, you may have been wondering (or not) where I have been since the London marathon. Two weeks post marathon I had scheduled surgery for another nerve issue in my stump which was getting considerably worse throughout my training. I had another TMR surgery with muscle graft, which went really well. Unfortunately I had a nerve catheter in my leg for pain control post op. These work really well and really help with pain, but for me, they seem to cause infections. We diddnt know this trend until this point. I had the catheter removed after 4 days and was already very poorly with a huge infection. I ended up going back to theatre to have more surgery, and my leg was filled with puss. I was then put on very strong Intravenous antibiotics, but after another week the infection returned, and so this meant more surgery. More antibiotics, more cannulas and more pain. I felt pretty unwell. I lost about a stone in the month I spent in hospital. The saving grace was that my surgeons were phenomenal, and the nurses at East Grinstead hospital were amazing. They were so efficient and attentive. I can’t thank them enough for their care.

After a month, I was finally well enough to go home, but was still in a considerable amount of pain. But after a week more, I decided it was time to get back to training. Unfortunately I had lost quite a bit of muscle and strength, and so the marathon distance which I was used to wheeling, had become almost impossible, especially in the rain and freezing cold weather. But all hope is not lost. I am still out there training as before and building my way back up to marathon distance. My goal being to make it back to marathon before Christmas day. This will be weather depending, but I will do my very best to get there. I don’t give up easily, as you all know!

I can’t wait to get back to where I was before. Some exciting news came when I was in hospital, I have been accepted for the London marathon again next year, so I will be entering and attempting to beat my own record. So this provides a huge incentive for me to get back there ASAP. Also, if all goes well, we are a go for attempting lands end to John O’groates using my everyday non-sport wheelchair, which will be another world record. We are hoping for August 2023. So this is another huge incentive. So it’s training, training, and more training for me. I am loving it, and hating the cold! It makes wheeling exceptionally tricky, which very slippy hands. But, it is all good strength work, and I can’t wait to reach some new goals. 😍🙏

Bridgewater world record!

I have been rather hectic over the past few weeks. Prepping for challenges and training and getting over other challenges. We’ll, as you can gather from the title I did manage to set a new world record at the Bridgwater half marathon. Guiness world records set me a time of 2:30 for the half marathon, and I did it in 2:12:02. 18 minutes under the time set. So I broke and set a new world record for the fastest female using a non-sport wheelchair to complete a half marathon. This is, of course still pending official guiness adjudication. I broke the time, now its the paperwork, that I just hope I filled in correctly. I will know if there’s any problems in 2 days, and know if all is perfect in 5, so wish me luck. This wait is more nerve racking than the record itself.

I arrived at Bridgewater rugby club nice and early. Then followed an amazing official announcement to all the runners and spectators of my challenge ahead. Then Phil form Pinnacle photo agency arrived, which I knew about, bit honestly didn’t expect him to come. He was there with cameras, and helped with making the day so special. The course itself was so well organised. Everyone was so friendly and encouraging. I don’t think one runner diddnt say words of encouragement when passing me. I really couldn’t have asked for a better environment. The course itself is advertised as flat. Lots of courses are! But to a person in a wheelchair, this is not the case. It is almost completely up hill. This was rather daunting, and left me pushing harder than I have ever done before. I had no idea if I could do it when the hills kept coming. There were 2 down hills but these led into a 90 degree turn, so I couldn’t get up any descent speed. But I put my head down and went for it, and coming over that line… well I had to hold back the tears! Not sure how I did that! It was an amazing feeling. All that training, and sleepless nights. Now the wait to see that it is all real! It is so difficult. But I have to trust in the system, and that I studied the guidelines thoroughly enough.

So where from here. Well on Saturday I will be off to Goodwood for the 2nd to last event. Then home for a couple of days before traveling to London for the last event and the biggest of all. The London marathon and another world record attempt. Where I hope also to become the fastest female using a non-sport wheelchair to complete a marathon. I have achieved this twice in training. But the marathon is a little tricky. Lots of people to fight my way through, so I only hope that I can navigate these as quickly as possible. I have 5 hours to do it. I have completed it in 4 hours 20, and that wasn’t at full pelt. So fingers crossed for the day. It will be very difficult. But all I can do is my very best. So it is here where I ask anyone who can to please donate to the charity which I am doing all of this for. A charity who have helped me so very much. Blesma limbless veterans. Thankyou ❤️

https://blesma.enthuse.com/pf/lexi-chambers-799fb-d79f9-9e2a2

Covid & heat!

My last event was scheduled to be 9 days after my last Triathlon. 2 days after my wife came down with what we thought was a cold. So I went out and purchased a covid test, just as a precaution. Unfortunately she tested positive. From that second we wore masks and she lived in the bedroom and I lived in the living room. Despite our precautions I still ended up with covid. I still felt awful the 2 days before the half marathon, and was still testing positive, so u had to make the difficult decision to cancel. So I then booked in another half marathon for 2 weeks later. It took a couple of weeks before I could wheel without feeling like I was breathing through a plastic bag. But I was back to it. I was left with no tastebuds or sense of smell, which is awful.

I kept going, and kept training. Then came the weather warning, and an email from the event saying that if the temperatures were predicted to be over 30 degrees on the Sunday (17th) then the half marathon would be demoted to a 10k. As you know, all of my wheeling events are either half or full marathon distance. So a 10k was not far enough. So another difficult decision had to be made. We had a hotel booked as it was near London, and the predicted temperatures were above 30 degrees. So we had to cancel again! Such a nightmare. One thing after another! So now I have another event scheduled for the 13th of August at Kempston Park. Hopefully nothing else will go wrong 🙏 Surely that is it for the bad luck! Oh, amidst the chaos of covid and heat, my footplate on my wheelchair cracked as well! So that’s the 3 events of bad luck 🤞

So I am still working hard. I’ve had to reduce the milage in the past few days to accommodate for the heat. So instead I’ve increased days training. Being mindful of resting adequately and icing my shoulders regularly. In the heat I always wear a hat, and carry an electrolyte replacement drink, as well as energy gels for longer distances. I am now up to 30km distance, but have lots of km to add on. A marathon is 42km. But, I’m almost there. I hope to complete my first marathon in training in the next month.

As for the world records. These have been negotiated with guiness, who have set my times in accordance to the male record as no female records yet exist. This I find a little difficult to fathom. The male who set the record did not have a time to beat, he just set the record originally. Also, the current male record holder, is firstly male, so is naturally stronger than I could ever be. He is also massively taller with much longer limbs, which increased propulsion. So I argued this with guiness, who finally agreed on a more realistic, but still very difficult time for the half, but then now the battle is for the full marathon. They have given me an extra 45 minutes to complete a further half marathon to make it a full marathon, instead of taking the half marathon time set. It’s a little irritating, all the back and forth, and the lack of communication with each other, but hopefully they will get on top of it before London.

As all of you know, I am doing all these events for Blesma. For the support workers who help people like me and their families. The support workers, like mine, who is called Steve, are incredible. I have a set amount that I have to raise before the marathon of £2000. I am hoping to raise £5000 for all of my events and the world records. I have been told by corporate that I must raise £1000 by the 2nd of September and the full £2000 by the marathon or I will not be able to complete it. I need all the help I can get with this. Please share my twitter page @lexialyx and my Instagram page Lexi.alyx.chambers so that I may have a chance of reaching the target set. If I can’t do the marathon, then I can’t attempt the record.

I have some fantastic news coming of a new sponsor, who are incredibly supportive. So hopefully this is the breakthrough that I need for fundraising help. So I will keep you posted of the upcoming fundraising events planned. It is all very exciting.

World record confirmation

Things have been a bit crazy over the past few weeks. With increasing distances, and juggling training with half marathon and Triathlon. Then the rest of my time is spent on fundraising. Sending hundreds of emails to hundreds of companies. But it is starting to pay off. I now have 2 official sponsors. Amazing companies as well. Rebel hr which is a small company run by an incredible lady who helps to make people’s workplaces better places, and Bar Venezia on Exeter quay where I live. We have been going in there for years. I was so extatic when the owner recognised me as a customer, and got behind me straight away. There is another on the horizon, but I’m yet to hear the official stance, and a possible other.

My training is always dependent upon how I am feeling that day. If my CRPS or fibromyalgia are flaring, then I have no choice but to listen. I am still learning how to judge things, but they are so unpredictable that it will never be possible to be accurate. But when all goes well, I wheel twice a week. I’m up to 15 miles now. Then the other session is usually around 16km of pure hills. The bigger the better. I am constantly making world record pace at the moment, but I am hoping to keep improving. Guiness have accepted me for the world record fornthe fastest female using a non-sport wheelchair to complete a half marathon. The time is set for 2 hours. Which is fast for a normal wheelchair. But I like a challenge.

I am also having swimming lessons, so that I can improve my technique with a great instructor. Then I use my handbike once a week, and the next Triathlon has rowing in it, so I’ve been doing that as well. I am lookong forward to concentrating on the wheeling after the next event, and trying to get my speed up further.

So, above is a new tattoo. I have dreamt of the day that I could complete a triathlon, and when it happened, I wanted to commemorate it, so chose this tattoo. I have my next one in under 2 weeks. Then another half marathon a week later. These are going to be tricky events for me. They sit at the point where I often have flares, so I am just going to have to see how I get on. Hopefully all will be well. The pain, I will push through if I have to, but the fibro flares render me almost comatose for a day or more. So I’m just hoping none of these rear their ugly heads.

If you want to keep an eye on progress or even sponsor me (no amount is too small) please pop a follow on my Instagram Lexi.alyx.chambers and follow my linktree in my bio for updates and articles etc.

2 down, 5 to go…

Where to start? It’s been a heck of a few weeks. As the title gives away, I have managed to battle through my first 2 challenges. The Great West run on Sunday the 22nd of May (only a few painful days ago) and The Exmouth Triathlon exactly a week prior. What can I say? Both events were epic, in so many ways. Firstly hills… I can honestly say I have never encountered hills like them in my training at all. Not handcycling for the Triathlon or wheeling using my non-sport wheelchair for the half marathon. Then the support… There were so many people cheering me on. I did not account for that level of support. It was just incredible. I almost burst into tears coming into Exeter Stadium on Sunday.

This was my first ever triathlon. I had dreamt of becoming an age grouper before my amputation and was training my socks off, which is when my feet began to become even more problematic than when I was in the Army. So when I thought that I could not only never realise my dream, bit never do a triathlon, my world almost fell apart. Then Blesma and the Aaron Lewis Foundation stepped in and helped me by providing a handbike, and I began to realise that this may be possible after all.

The event itself was hell…. but a good hell. I went out too fast on the swim, took in half the pool and almost drowned… so my time was terrible. Then got stuck in transition as it was very off road, and I had to get in and out of my wheelchair. Then came the handbike, against an enormous headwind. I battled through. I’d cycled 10k many times, so thought to myself (you’ve got this…) oh how wrong I was. The hill came, and it continued, and continued, and continued… it was probably about 4k long, bit felt like it was 25. I saw a snail on the way and felt the need to comment “I know your pain!” I was going that slow. To give it context, imagine doing seated rows at the gym on your maximum effort, continuously for about an hour! That’s what it was like. The coming back down the hill was good though. Then into transition. Most people had finished by this point and I still had my wheel to do. This really is my thing… but again I was wrong. Across uneven grass, I got stuck. A Marshall then told me the wrong way to go. To be fair to him it wasn’t his station. Then the wind increased and the heavens opened. I battled through and came into the finish to a soggy applause from the organisers, and my amazing wife, who waited for my in the pooring rain. My wife, came 3rd in her category. I was and am so proud. I missed her presentation though, which I am so gutted about. But how well she did.

Someone took a photo for me, wifey is on the left.

After a week of ice, heat, massage and recovery we were onto event 2, The Great West Run. My first ever half marathon using a non-sport wheelchair, or any wheelchair for that matter. We arrived in the village, and I had a lovely interview with ITV Westcountry whilst in the epic que for the loo. There were no disabled toilets, but luckily I can hop a bit. I was, to be fair the only wheelchair entry. Stood in the line of 4’000 people, the excitement built…then bang! We were off. First came a downhill. Then up hill… then more up hill…then steeper up hill… then a few down hills where I flew…then back to uphill… then near the end was the worst hill ever! I could barely move. But again, my lovely wife who was with me, was there by my side. Telling me I could do this… and, “what would chiefs women do?”. We are big supporters of Exeter chiefs women rugby team, and I find their courage, sporting ability and resolve under immense pressure, very inspiring. Hence the comment!

I made it up the very large hill, and thought I was home free. Iwas wrong. Then came more hills.. and more…and, well, you get the gist! But finally after 2 hours 40 minutes my wife and I came over the finish line. I could have been happier. I got the word out about my challenge and more importantly Blesma. I really can’t thank the crowds enough.

I’ve also managed to secure my 1st official sponsor. Rebel HR who are an amazing company who help make workplaces more bareable (you should take a look). I will be wearing their logo with pride, throughout the next 6 months of training, and everywhere I go.

So after a half marathon, what do you do? I’m not sure what everyone else did, bit we went straight (via a quick bath) to Sandy Park to watch our Chiefs women beat Bristol bears and secure a place in the Allianz 15’s Final! Gosh this made that day one of the best days of my life, so far.

Well, that’s it for now. I’m still a little sore. Strangely my right leg is the worst! Odd considering I don’t use my legs! Now it’s a week of rest and recovery, then training commences for the next event in 5 weeks, Triathlon 2 in Plymouth, then a week later, the Cardiff half. So no let up. Plus I’ve got to begin wheeling further than 13 miles on the ramp up to 26.2 for the Marathons. Wish me luck!

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!! 👌

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!

…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.