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

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.

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.

Some photos from the Triathlon

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!

Official photos of event 2.

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.

My 1st official sponsor.

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.

Exeter chiefs v Bristol Bears

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.

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!! 👌

…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!

Some of my artwork 😍

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.

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.

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!!).