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.

Training in the rain!

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

2 weeks post marathon

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.

In hospital.

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!

Out training.

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. 😍🙏

2 world records in 1 month!

So, incase you haven’t realised. I managed to set the world record for the fastest female using a non-sport wheelchair to complete a marathon, at the London Marathon. But before I talk about that. There was one other event a week before; the goodwood half marathon, which I did complete. It was a tough one. Very strong headwind with uphill section, which covered three quarters of the race track. I had to complete 5 laps. I was exhausted by the end. But it was the last one before the big one. Chichester was beautiful. Unfortunately for the third time, booking.com dis not place me in a disabled room, despite my asking for one. So it was a crawl up 2 flights of stairs. The room was beautiful though, and the owner was amazing. Booking.com are terrible for disabilities. You pop in your preferences, and they always say there are facilities for disabled, weather there are or not! But, despite this little set back, goodwood was great.

At goodwood.

So, now onto the biggie. The epic London Marathon was just incredible. The crowd, well let’s just say, all I heard was my name being called the whole way, with words of support. It was so phenomenal. I did get the world record, with half an hour to spare. It was adjudicated on the day by Guiness world records and they told me when I reached the finish line. It was one of the happiest moments of my life. The whole this was just wonderful.

Me with my world record.

What made it even more special, was the fact that I found out official that I’d got the record for the half marathon the day before. I was sat in out hotel at breakfast, ready to go to the excel to get me number and an email came through. Well, I burst into tears, in front of everyone. They all must have thought I’d recorvwd some bad news, or I was a nutter! But they were tears of elation. Then it was off to the excel. Where I managed to bump into the male record holder for the same record I now hold. A chap called Stephen Salmon. He is phenomenal. He has been beating his own record for years, and managed to again this year. We’ll, it was funny. When we were going into the excel, a photographer took a photo of us two together. It wasn’t until we got in that Cat pointed out, that if only he realised he had just got a photo of both record holders together! I wish I could have a copy of that photograph. Me being me, was so happy to have met him in person (we’ve been chatting on line for ages and speaking on the phone) but had not yet met in person. We are both very similar, and driven by very similar things. So that was the best bit. Then came the number bit. Which was such a relief. My start place had been moved from red to green, so that it could be official with Guiness. So I had lots of going backward and forwards with sorting that out.

At the excel with my number.

The start line was very tricky to find, and unfortunately the marshals sent my wife and I in the opposite direction twice! She must have ran miles pushing me as fast as she could to the line, running about all over the place, until we finally made it. The down side was the singular disabled toilet, which was covered in poo. No joke, it was all over the loo, the seat, the floor, and no loo roll. Not only that, it was the furthest from the start line. I had no choice but to hover, which was not fun! I did speak to the manager of the green zone, and his answer was ‘oh well!’. Not helpful at all! Then came the start, which was amazing. But I found the whole way round that I was fighting to get through people. I think I could have completed the marathon in possibly half an hour or more faster than I did, but just couldn’t get round some people. Some lovely runners stepped in and helped so much, which was amazing. Then I rolled over a massive blob of chewing gum, which got stuck to my wheel and I couldn’t get it off. I had no choice but to stop and try to do what I could. Then out of nowhere came an amazing lady who took off her own glove and used it to remove what she could. Then just ran off. I shouted ‘thankyou’. What a wonderful thing to do. This lady is my hero. It meant I could carry on much quicker and get that record.

Cleaning off the bubblegum!

As for the route. I don’t actually remember much of it. My poor wife and our friend, Kate, ran about London all day, trying to find a point where they could see me. Then they shouted furiously at mile 21 and of course I was in the zone and diddnt see them! I literally saw legs the whole way! But I have lots of photos with thanks to friends and people on the London Marathon Facebook page. Plus London marathon them selves.

Just a couple from the marathon.

I came over the finish line at 4:32:11. A new world record. So 2 new records in less than a month. To sat I am happy is an understatement. It hasn’t sunk in yet. I’m not sure when it will. I’m yet to receive my certificates. They can take 12 working days, so hopefully they will be here soon. 🙏 I did receive my half marathon one, but it had the wrong date and time on it, so I’ve had to ask for another one. According to this one I’m wonder woman, and I’ve set the half marathon record in the future! I thought they couldn’t possibly get it wrong. I was wrong! It is right on line though, which is the most important thing.

My half marathon record.

So hopefully by the time I’m out of hospital (which I go in for surgery again on the 18th October, for more nerve surgery on stumpey) I will have both Records waiting for me at home.

So what’s next… well, big things next year. Another new world record. This time I’m doing something that no one has ever attempted or achieved. I am hoping to become the first person to wheel from lands end to John O’groates using a standard non-sport wheelchair. It will take approximately 30-40 days. It is going to be the hardest thing I’ve ever done, and a huge event. Pinnacle photography are organising the event and sponsorship, which is brilliant. I doubt I could do this one alone. In fact Pinnacle have been so incredibly supportive throughout my whole 7 events. They have been there at both Records taking photos and putting posts out. They are still helping now, and being amazing.

Back training already.

So keep checking in for updates of my epic challenge. We are hoping for August 2023, but the official date is yet to be set. So that’s it for now. Double world record holder, signing off! 💪😊

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.

After the record!

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

Event 4! Kempton Park

So, it has been a while since my last update. I have been rather busy. Training and preparing, so these next two updates will be in quick succession as I have so much to update. Let’s begin with my 4th event, which I finally managed, post covid. It took a while to get over covid, as I’m sure so many people can testify to. It really isn’t very nice. But after 10 days I managed to get back out there training. I had booked in kempton park as a precaution, as my other fall back was demoted to a 10km due to excessive heat. So it was the 3rd race I had booked to attempt to forfill my 4th event.

We made it to London the day before. I must say, I was feeling less that alright. Suffering with a Fibro flare, which for me means lethargy, migrane, muscle aiches and pains, and nausea. But stubbornness kicks in. We went out for some pasta the night before for some good fueling. I am very allergic to Gluten. Not only am I suspected as having coeliac disease (but can’t eat Gluten long enough to have a conclusive test), but if I eat it my whole body swells, and I feel very unwell. Unfortunately there was a mix up at the restaurant, and my wife and I ordered the same dish. I ended up being given the one with Gluten. Well, the next morning I awoke twice my size. Not only that but the fibro flare was still in full swing. But we had travelled all that way, I wasn’t going to let myself or anyone else down. So I just got on with it.

The day before, pre Gluten!

So the other difficultie of the day was set to be the temperature. I knew it was going to be hot, and I always find training tricky in intense heat. But it reached 36 degrees! I had to stop a few times to throw water over my head. The course itself was flat ish, as stated. But being a horse racing circuit, had periods of 50 metres and 150 metres of what I can only describe as a peet like substance, which I had to negotiate 8 times. It was like wheeling on dry sand. It stopped me dead and sapped every bit of strength I had. But I wasn’t going to not finish. So I carried on, and on and on… All 4 laps. I finally came over the finish line at 2:30:45. Actually just missing the world record by 45 seconds. Fortunately it was not the official attempt.

At the end…but v swollen!

It was a good event. Very exhausting. The toilets were very far from the start, and there were none on route, so I spent the whole way around with a full bladder! A but uncomfortable, but the people were nice and friendly. So post event, I unfortunately suffered with 2 days of heat stroke. I have never had this before. Not even when I worked in places like the Carribean or Bahamas. Needless to say, I was rather poorly. But glad I had finished the hardest event so far, and it seemed like the run of bad luck was over…. I was wrong.

After recovering, my footplate broke again. I called Invacare as always, who are responsible for wheelchair maintenance. Unfortunately the woman I dealt with was, I’m guessing having a bad month. She was very uncaring, to put it mildly. I eneded up with 17 days in total waiting for a footplate. Being told engineers would be coming out, so having to not train on those days, then they wouldn’t turn up. Being shouted at down the phone. It was truly despicable. By the time one eventually arrived, I had had to purchase one of my own, which was super heavy at 5kg, and was over £250 out of pocket. A footplate for me is not just somewhere I pop muly remaining foot, but it is where my stump board attaches. I cannot have my stump dangling at all or it sets off a crps flare. So needless to say, I suffered alot of flares, and considerable extra pain because of this. I had a footplate break in the past, and a man and replacement came out that very day! But not that time. But anyway, it worked out in the end as you will soon learn with my next post. Plus that big sponsor I said about… I am now very proud to be sponsored by Cartridges Law. A local law firm, who are incredible. They have been absolutely wonderful getting my challenges out there, and we have lots of plans in the coming months to do more.

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.

Covid test on the Friday!

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 🤞

Training in the heat!

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.

Another one down! Then down I go!

Well, on the 25th of June I made it to event number 3, the Plymouth rehabilitation Triathlon. It was my 1st military event, and I was the only female veteran. It was brilliant. I have not felt that comradory in years. It was so much fun. It started with a bang, and an interview on ITV Westcountry, which I am still yet to see as it aired during my event. We arrived at 8am, but had to wait until 2pm for my wave in the event.

Being filmed for itv westcountry

When the event came, I have to say, I was suffering. I had a fibro flare that morning with a migrane to boot. But I said I was going to do it, and nothing was going to stop me. I felt absolutely awful. But as soon as I got in that water, there was no turning back. The swim was in a sea water outdoor pool, which was freezing cold. I got a mouthful of sea water on my 1st stroke, which completely put me off of putting my head near the water, so I swam the whole lot with my head up. Not easy, and not how I’m used to swimming, bit it was rather that than vomit in the pool!

The swim

Then after the swim came the bike. I was the only female in my category and against men who were using trikes with their legs. Some had battery assist on them (not strictly in the rules) but oh well. I was using my handbike. The course was 4 loops of a very tough downhill, then extremely steep, very long uphill section. It was killer by the 4th lap. But I did it. The crowd support was amazing.

On the bike

Then came the run part, which was with a difference. It was actually a row on a static rower. I chose to use one leg and row fully. It was very hot, and my arms were so tired by this point. But again the crowd and my awesome wife got me through.

The row

Then when it was all done, we all waited til the end of the day where the Royal Marines band played an amazing set. Then came the prize giving, and we all had no idea of how we had done, as there were over 125 competitors. I was gob smacked to hear my name called in the silver medal position for my category. I really didn’t expect that at all.

Receiving my medal from Colonel Chris Haw. A very proud moment.

All in all, it was an amazing day. I can’t thank my wife enough for supporting me all day. She was my cheering section and stood up all day. I am so lucky to have her.

Then a few days later came the crash as we both came down with covid. As a result I had to cancel my Cardiff half marathon, which was 9 days post Triathlon. I felt ready, then poorly. I’ve now had covid for 5 days and I feel terrible. I can barely sit up, and that’s not like me at all. I will work through most things, but I can’t work through this. I have rescheduled to another event which is at Dorney Lake on the 17th of July. I’m just hoping I can make that. I need time to train, and prep myself for the upcoming world record attempts, so this couldn’t be worse timing. I was also supposed to be going to the Aaron Lewis foundation rugby 10’s this weekend, which is now impossible. They have helped me so much. They bought me my handbike so I could compete in triathlons. So I am super gutted about this.

So for now, I am resting, and hoping that I get better soon. Trying the best I can to have a contingency plan just incase, but it is hard. I feel poorly. I have no tastebuds, which is my only vice (food!). I need to be training. Yet I know I can’t. It’s the worst thing for any athlete. But now I must listen to my body, and behave myself, and hope it goes soon.

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.

Training with the sponsorship logos

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.

New tattoo for my 1st Triathlon

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.

Two weeks to go…

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

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

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

Getting out on the handbike.

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

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

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

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

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

Truth about training with chronic pain conditions…

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

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

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

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

Yesterday (top) & today (bottom!)

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