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. 😍🙏

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.

Out an about training.

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!

London marathon here we come…

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

Above is hopefully the link to my fundraising page for Blesma. So, you may have read on pervious posts that I plan to complete a series of events this year to raise money for Blesma. As you also may have read, this charity is very close to my heart. They have helped me and my family so much since my amputation. So I feel it is only right to try to give back. Last week I received the wonderful news that I have been accepted to complete the London marathon as part of #team blesma. I am so honoured to have been selected. I am hoping to raise at least £2000 for them. I have set a fundraising page to include all the events I plan on completing this year. I will be completing 2 half marathons, 2 marathons and a Triathlon. On top of this I will be completing a number of virtual events. All of this will be completed using my normal everyday wheelchair, my Quickie Argon 2. I have heard that I will be the first woman to complete a marathon using a normal wheelchair like this. I know lots of women have completed a magnitude of distances using a sport chair, but not their day one. Maybe I’m the only person crazy enough to try! Ha ha!

Here she is… The chair which I will be self propelling all those miles…

I have set up a Facebook page, titled the same, and shared my page amongst my 400 Facebook friends, yet so far only received 1 donation, and I can’t thank that lovely chap enough. I am hoping my page may be shared far and wide so that I can raise as much as I can for such a wonderful charity for limbless veterans.

I will be keeping everyone updated along the way of this journey. My CRPS and Fibromyalgia are going to definitely present a challenge, but I am extremely motivated and have longed to complete a marathon and Triathlon for years. It was whilst training for these events over 8 years ago that my feet began to hurt, which led to my 1st surgery, which led to my CRPS, which 8 surgeries later, led to my amputation, which brings us back to my having crps again! So, if you can’t run it…wheel it!

Bring on the London Marathon…

https://blesma.enthuse.com/pf/lexi-chambers-799fb?utm_campaign=website&utm_source=EnthuseSendGrid&utm_medium=Email

So the above link is for my fundraising page. This year I will be raising as much as I possibly can for the wonderful charity, Blesma. Most of you may know that they have helped me a great deal since my amputation almost 3 years ago. They have been there through some of the toughest times, and helped with my independence, sporting activities, my change of career and been a huge advocate for me when no one else would listen. I owe them so much. So I have planned 2 years of challenges. This year begins in May with a Triathlon, and a week later my first half marathon using my wheelchair. I then plan on completing the Bideford half marathon, The Goodwood marathon and I’ve just been accepted to be part of Blesmas team to complete the London marathon. In between these I will also be completing a series of virtual events. My hope is to raise the agreed amount in order to be selected for the London marathon, which is £2000, but I really hope to raise at least £5000. I will be completing all events using my normal, everyday wheelchair.

Out wheeling. Getting some training in.

Now, unfortunately I have exhausted my usual friends for donations. Well, let’s be honest here, hardly any of my friends have actually donated at all. I think people are a bit strapped because of covid. So I am asking for people to please just share my page. If you can, donate a small amount. Even £1 is helpful. Anything is helpful. It all adds up. This charity is much smaller than the other charities for veterans like me, but they do just as much. They deserve so much, and give so much. I will keep everyone updated with my progress. I am still doing my virtual challenges along the way. I’m currently half way through my kilamanjaro. Then will come more. I even plan on slotting in a couple of virtual marathons during the year! I will let you know nearer the time when these are.

We finished our 90 sit ups a day for January challenge.

So, as you can see above, we finished our 90 sit ups a day for blesma challenge. It was actually great fun. Tricky doing proper military situps with one leg, but I managed it with the help of a belt to strap my legs together. My left hip flexor is now very strong!!

My wife will be completing the Triathlon and two half marathons with me, also for Blesma. She will be running hers. We hope that this year my body will allow me to complete these challenges. I never know what CRPS is going to do, from one day to the next, or the Fibromyalgia. They like to rear their ugly heads at the most inappropriate times. So we’re keeping all fingers and remaining toes crossed.

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!

2021 in photos

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. 💔

My early days as a theatre nurse

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.

January so far…

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.

Mount Everest, here we come…

Virtually of course! I wouldn’t get too excited! But, for a very long time, since I first discovered climbing when I was at secondary school, I’ve wanted to climb mount everest. Now, as you may guess, this is quite a feet (no pun intended) when you only have one! So unless I can wear a prosthetic long enough, this dream will remain so. Also, the wife! She will not let me go! She is terrified, that with our terrible luck in life, that I will never come back! I have to say that with our luck, it is a real concern. But we have agreed that if I ever can, then we will go back to Kathmandu one day, and do the Everest Basecamp treck. There I get to see her, the big one, up close. Just wonderful! So what does this all have to do with now? Well, I discovered the Challenge medals. Virtual distances where you can run, cycle, or in my case, wheel a certain distance, to get to a certain place. They have Mount Everest on their list. So that was it…straight away, I signed up. One week in and I’m 55% there. I set myself 3 weeks to compete the 64km, but should hopefully do it in 2.

The journey so far…

So, why these? I needed some inspiration to keep getting out there. Anyone with CRPS and fibromyalgia will tell you, that the cold weather is not your friend. It sets off both conditions. So going outside, deliberately to wheel for an hour or more is quite mentally and physically taxing. So I needed some inspiration to get me out that door. I have found it. For some reason, as soon as I have a task to complete, my brain can’t cope if I don’t do it! So there we go… or off I go! It has been rather challenging. I haven’t had one dry day as yet. It hasn’t been terrential rain, but wet on the ground and sporadic rain. But the weather would be worse at Everest, so I keep going.

I would encourage anyone to set themselves goals such as these with crps or fibromyalgia. It has been clinically proven, that exercise helps with both conditions. I certainly feel better. I find it hard to go out, but when I’ve finished, I am alot happier (mentally). The physical side can be difficult. I’ve been having alot of flares of my crps lately, which is very draining, but I try to carry on.

I missed my wife’s Christmas party due to a crps flare!
My wheeling route…

With views like the one above, on a nice autumn day, it is so wonderful. So, hopefully by Friday, I will have completed my challenge, and then it’s decision time, as to which one I do next. Most people know that I’m hoping to wheel from lands end to John O’groates at some point. Hopefully 2023, if all goes well. I will be doing this for blesma. But I could always do the distance in training as well? Huum???

Fibro it is then!

Yep, as the title suggests, I have now been diagnosed with Fibromyalgia as well! I must admit, that although I knew it was a possibility, when the words fell from the lips of my Gp, it hit like a baseball bat to the face! I went home, sat, and cried! Now I don’t normally cry much. The only things which draw me to tears are the extreme pain of a crps flare, thinking about the death of my beloved cat, Winkeypoo, and seeing any sence of animal cruelty. But this, for some reason floored me. To have another incurable pain condition? I mean, what did I do in a previous life? Am I Jack the ripper incarnate? I’m starting to think so!

So what is Fibromyalgia, for those of you how are unaware of this bundle of fun. According to NHS.uk ‘Fibromyalgia is a condition that causes widespread pain and extreme tiredness.’ It is that, but there are a few more symptoms to keep one on their toes! For me, I started to realise there was a problem when I was spending time with my friend. She smokes when drinking, so when we meet up, both her and her partner would be opposite me smoking away, and following this I was ending up with a chronic migrane and then at least 5 days of feeling like I had the worst flu ever. I couldn’t move off the sofa. The migrane was relentless and I felt in pain all over. I thought the first time that I had the flu! Then after the 4th time of the same thing happening, I realised it was the smoke that was making this happen! Now I had a bigger problem, how could I tell my good friend that her smoking was making me sick? Well, the answer to that is that I still haven’t (chicken, I know! I will soon!). So needless to say, I knew there was a problem. It was when a friend suggested it that I began reading around it, and saw that smoke can be a trigger for a Fibromyalgia flare up! Hurrah I felt! There’s my answer! But then came the dread! I didn’t want it to be true. But I had to find out. So I spoke to my GP who organised blood tests and a Fibromyalgia test. Well, following all this there was no doubt!

So, what now you may ask? Well…nothing! The treatments are all the same as the ones I have for crps, which don’t really work! I can’t take half the medications necessary to help with some of the issues due to be allergic to them, so it’s a case of learning and self management! As I’ve already been waiting over 2 years for an appointment with exeter pain team, I won’t even bother them with this…its clear that they have no interest in helping me at all. I’m lucky that I have a good GP. He is wonderful.

So for now, I will carry on as before. I’ve managed to complete my 11k for Blesma, and have a 5k on the 2nd of December, where we all dress as santa and run, or wheel in my case around the streets of Exeter, so that should be fun.

My article in Blesma magazine

Oh, this happened! I had a two double page spread written about me in the blesma magazine. I was so humbled by what they wrote. It was so lovely and kind. I’m so glad that I could be part of getting TMR surgery notariety. I am still recovering from my surgery, but seeing some positive results. I can wear my leg for a few minutes now. I know I will never be able to wear it all of the time, but at least 20% will be lovely.

So for now, I am hoping that this new part to my life will not overtake the wishes I have. I believe that we can overcome most things. It is never easy, and this illness has knocked me for six, but there are things I want put of my life, and I will have to make some adjustments, but hopefully desire will prevail! (Fingers crossed!!).

Slowly does it…

Exactly as it says, slowly does it! I am finally getting back out there. I have managed three wheeling sessions, two handcycles, and three swims with gym, in 4 weeks. Not as good as I had hoped, bit also better than nothing! The post surgery TMR pain is now in full swing. At least I hope that is what I am experiencing, and there is nothing worse around the corner. All I can say is, omg… When my lovely surgeon told me to expect 6-12 months of he’ll, she wasn’t kidding. It’s like targeted crps flares. Basically like I’m being stabbed by a red hot poker. It can go on for minutes, but more often than not, it seems to be days. The worst part is that nothing helps. The boiling hot heat packs help with the crps flares, but they don’t seem to help with this new pain. So I have to wait until it goes! Pretty annoying. But, hopefully it will be over within the alloted time period? Fingers crossed for the lesser 🤞.

A successful wheel…

So, also, I’ve been privileged to take part in an article for Blesma magazine on TMR surgery. They have followed me through my surgery, and after. Should be fun to read. Not sure when it will be out, hopefully in the next one.

I must say, I will be glad when things are looking up a bit more. Although I know better times should be coming, I’m getting a little inpatient. There is so much of life I wish to experience, and so much of it depends on pain levels, and the predictability of flare ups. It is rather annoying, having to cancel things all the time. Having to cancel dates with friends, general appointments, and I’m yet to start at the track because I had a flare before my first session last week, which was so upsetting. 😢. I can’t wait to start. Maybe even compete one day? Who knows?

Come on! Let me train!!!

Well, as you may guess, I’m starting to go a little stir crazy! This infection is relentless. I’m now on another type of antibiotic, Co-amoxiclav. The Flucloxacillin ran out the other day. It was very strange. I went to bed feeling a bit better. Then by lunch time the next day, after not having any antibiotics, I was back to feeling awful again. My heartrate was over 100 again, known as Tachycardia. I felt extremely tired, to the point that I couldn’t stay awake. I felt very sick and had no appetite at all. I also felt quite shakey. I had no temperature, but have not had a significant temperature (pyrexia) throughout the whole period of my illness. There is a common misconception that you have to have a temperature to have an infection or sepsis. My consultant said he thought I was septic when I finally received IV antibiotics. There is such a thing as hot sepsis, where you have a temperature (a temperature above 37.6) and cold sepsis, where your temperature is normal or below. Normal is different for everyone, but in general the normal range is 36-37 degrees. I am normally 36-36.5 when I’m well, so I know if I’m at 37.5 I’m usually not too well. We’ll my temp was a bit up bit not into the 38 plusses, which is where worrying begins. So at first they just focused on that. Until they finally realised that my other observations, like high heartrate (over 100 bpm) and low blood pressure was telling a story. Normal blood pressure is 120/80. Low is considered 90/60 or below. High is considered to be 140/90 or above. Mine was 60/40 at one point. My heartrate was 140-160 at rest, whilst laying in a bed. So there was no doubt I had a problem.

So, observation lesson over, I was basically feeling rubbish again. I decided to try 111 first before going to A&E, hoping to speak to an on call Dr. I spent over an hour with the phone on hold, and eventually gave up. So we were off to A&E again. We’ll bloods were taken and my platelets were high, my red blood count was low, and my crp was up. All showing infection. So I started on antibiotics again! The next day I felt a little better. Then on Monday these ran out and I fortunately spoke to a great GP at my local Dr surgery who decided to try another one. So here we are. Awaiting more blood results today! But still feeling rubbish to be honest.

Me training!

So here I am. Still feeling to rubbish to train. We now have access to a new pool and gym. My wifey, who is amazing joined us up to David Lloyd whilst I was in hospital, as she knew how desperate I was to swim again, and start training for a Triathlon. So now I’m at home, my handbike now accessible, my wheelchair itching to get going, the new pool and gym waiting for me…and I’m still stuck to the sofa. Finding it difficult to eat more than a bowl of cereal and a piece of toast in a day. My muscle mass is deteriating, and I’m feeling absolutely rubbish. No energy at all. Then I’ve been sat watching the Olympics, which makes me want to train more than ever. I want to do my half marathon, but now I know I can’t. I want to do a marathon. I want to start training to do Triathlons. Hopefully one day an Iron-man. I have so many ambitions, and yet being glued to the sofa, is not one of them! It is quite depressing to be honest. I’m not too patient at waiting to do things I love! I just wish this infection would listen to me, and GO AWAY!!!

So for now, it’s fingers crossed. Try to eat, and be patient 🤣. One day I will be back out there…and that day will be amazing!!