…inspite of CRPS & fibromyalgia…

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

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

Current training for the London marathon 💪

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

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

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

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!

2022 here we come…

Yes we see 2 weeks in to 2022. So it’s a bit late to say ‘happy new year’, but I’ve said it anyway. For the past couple of weeks I have been suffering a bit. One of those things that people with crps and fibromyalgia can’t control! So it’s taken me a bit of time to writs my ode to 2021! At the moment, I’m laying on my sofa, still suffering a flare of fibromyalgia, so please bear with me if my writing is gobbledegook!

So, 2021… What can I say? It was a difficult one. It began for me on new years day heartbroken, as just a few hours before I lost my sister, Linda. I had not seen her in a very long time, and because of covid, didn’t get to say goodbye either, which was very tough. Then things looked up a bit with the booking of my TMR surgery. However, the actual surgery was very difficult, and I was in hospital for a month trying to get the pain under control. But eventually, and thanks to an amazing team at East Grinstead hospital, we did, and I got home. Then almost immediately came the access in my hamstring, and the diabolical treatment at the very hospital I had worked in for almost 20 years, the Royal Devon and Exeter Hospital. I was left in a bed for 17 hours in agony. Had my pain medication stolen from my bag, by a nurse when I was in the bathroom. I ended up discharging myself after receiving no treatment at all. A few days later a huge access was found in my leg and I was suffering with sepsis. It was only thanks to my amazing gp that I’m still here at all.

So I eventually recovered from that, and sadly had to retire as an NHS registered nurse. I qualified a few months before meeting my wife. So had been a nurse for 15 years. I loved the nursing side of things, especially my time in theatres. I am a very technically minded person, so found it absolutely fascinating. I met some lovely people, and got along with the Dr’s very well. On my exit interview, with a nurse and friend, she saw how upset I was and said ‘you will always be a nurse’. A phrase I will hold deer. 💔

I was also diagnosed with Fibromyalgia later on in the year, which was not a surprise. But it is rather annoying. It gets in the way of my life in a different to crps. I end up not being able to move for days on end…and for someone like me, who never stops doing stuff, it is a cruel and unusual punishment. Bit it is just another battle that must be fought.

The good bits… I have been out wheeling lots, and managed to complete the blesma 11k, and Mt Everest (virtually). I also wrote the first and second draft of my novel. I am still editing it to try to get it to where I want it to be, and soon will be sending it off to a professional to sort it out, so that I may stand a chance of someone taking it on!

So what’s next? This year I have lots of plans. Finishing my book, and good willing, getting it published is my biggest goal (fitness aside!). Also, I’m working on my usual entry for wildlife artist of the year. I’ve got a few more paintings in a gallery now, which is brilliant.

A few of my more recent drawings using pastel pencil.

Fitness wise! Well, there’s lots. My wife and I began on the 1st of January doing the blesma 90 sit ups a day challenge. Which we have done everyday, and will continue. I have also began my virtual wheel to Mt Fuji, of which I am half way through. I’ve also entered the following: The Exmouth triathlon on 15th May, The great West run half marathon on 22nd May, The Bridgewater half marathon on 04th September, The Goodwood marathon on 25th September, and am still hoping Blesma will let me join their team to do the London marathon on the 02nd of October. Also I am hoping to complete a few marathon distance virtual races along the way. All of which will be raising money for Blesma.

So, although January hasn’t got off to the best start, it could be worse. Plus, when you have crps and fibromyalgia, you learn to take everyday as it comes. It isn’t easy, and I’m still learning to be patient with myself. I get very frustrated when my body doesn’t behave in a way I want it too, but I will keep trying. I hope that I get to achieve all the go’s I’ve set myself this year, and will keep plugging away. I’m also hoping that the pain from the TMR surgery will lessen, so I can wear a leg for a few minutes more. I can only wear it a few minutes a day, when my leg is behaving at the moment. Which is great, but I could do better! I am very hopeful for 2022. I hope all my friends have a wonderful, healthy and happy new year.

Finished Everest, then all went down hill…

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

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

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

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

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

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.

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!

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.

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!!).

What’s been happening….

Hi there. Well, what a month or so? And where to begin? My road to recovery has not been smooth. I have been suffering with daily flares of pain. Its a battle that my leg fights with itself. The nerve pain sets off the crps, and vice versa. I try not to let the pain get in the way of my everyday life, but it has had to. This isn’t to say that I haven’t been able to do some things… I take advantage of every good moment… So, the good bits. Firstly I’ve finally finished my novel. It’s a victorian thriller/romance. I have been working on this for 2 years. It is currently with some lovely friends who are reading it for me to see if there’s anything I need changing. Then the all important task of hoping an agent will like it and take me on? I have started the second one. It is part of a trilogy.

The copies ready to go out to readers. Fortunately for me, most people wanted digital versions! 🙂

I have also been busy training, as much as I can for the Blesma 11k, which is on the 14th of November. It is a virtual 11k. Next year I’ve just signed up to 2 half marathons, and a triathlon. I’m hoping also to be part of the London marathon 🙏. I will find out after Christmas weather I’m part of the blesma team. Training has been hard. I am having to squeeze it in whenever I’m able. Which isn’t as often as I’d like. But anything is better than nothing!

Next, I am happy to say that one of my biggest insecurities will hopefully be a thing of the past…In 8 months anyway! I have signed up to invisalign, which is basically like fancy braces. I have to wear a clear shield over my teeth so that they can be straitened over time. They aren’t that comfy and I’m sure I’m speaking differently (although my wife kindly says I’m not!). I have to keep them in for 23 hours a day. Only removing them to eat. It’s great if your a snacker like me, because you have to clean your teeth and the covers every time you eat anything, so snacking is no more! So there’s lots of positives, the main one will be having confidence to smile. Apparently I also have a big over items, which I never knew about. This will also be corrected. I have included a photo of them, and in said photo it shows my teeth (those of a nervous disposition, please skip the next photo). I promised at the start of this that I’d be brutally honest! So here we go…

Next, I have had a bit of another health issue. My Doctor and I both think I may have Fibromyalgia as well as the crps. Why do we think this? Well, I have most of the symptoms of Fibromyalgia, but then alot of these double with the crps. So I’m undergoing investigations into weather I do or don’t have it. I’m hoping to be proven wrong 🙏 . But if it is proved, then there’s not much I can do about it, just try to keep plodding along, and not let another thing get in the way of life (as much as I can, anyway!)

I have to mention my amazing wife, who did a 15000 ft skydive last weekend. I foolishly bought it for her for her birthday. Then spent the month in between then and the jump, terrified that something would go wrong, and I may loose her. She is my heart and soul. We have been happily married for 13 years, and together for 15. She is my world, my very best friend. Life without her would be unbearable. So having your world fling herself out of an aeroplane was terrifying. But she was desperate to do one. She did a jump when she was a teenager and loved it, and asked me for years to do another. I finally gave in. I’m happy to report that all went well. I think I nearly had a heart attack 😳, but she was a trooper. Smiled all the way through, and now of course, wants to do another one!

Lastly, I have now got a leg again! Yes you read right, I have a leg! The brilliant prosthetist at Bristol mobility centre has made me a leg that I can wear. I can only put her on for a few minutes at a time, but that’s better than nothing. I can’t wear her on bad days, which are more often than not at the moment, but I’m assured by my surgeon that this may get better. So when I can I pop my ‘flo’ on. My leg is named after ‘flo jo’ the sprinter. I still have a hope that one day I may be able to walk, and even run. I will always keep trying. Never give up despite the odds. So here is my leg.

So, that’s it for now. My 11k will be on Sunday. Can’t wait! Lots more fun to come.

Flare ups…

If you have CRPS, this term is something which you will be all too familiar with. For those who are not so familiar, it is where your ordinary pain level escalates to the unbearable! For me, using the ordinary pain scale of 0 being no pain and 10 being the worst ever, I live at a permanent 7-8/10. When I have a flare this escalates to 10++. Now, you may wonder how you can get worse than 10, the worst ever. Well, this is simple. Just when you think you’ve reached the worse pain you’ve ever had, crps has a way of letting you know that you were wrong, and there is always more to be suffered!

So that is what a flare up is. Now the worst part of it for me is the fact that it dictates what I can and can’t do. When it’s bad, I can’t do anything. I basically roll about crying, and try my best to do my mindfulness. When it’s a semi flare, so basically a 9 or 10 on occasion. It fluctuates between the 2, this is the most annoying. I get these alot. I’m having one right now. Today I was hoping to go for a wheel, write more of my book and had a few chores to do. But instead all I’m capable of is laying on the sofa, with stumpey covered in heat packs. I feel totally useless, and hate the fact that it is dictating what I am aloud to do today! There is no way I can write my book, as it is so important that I get it right. It is set in the victorian era, and so requires alot of research, which is something that is rather difficult when you are such a high level of pain.

I hate this condition dictating my life. Because I am recovering from the TMR surgery, I am having more flares than usual. While the nerves are finding somewhere to go, and causing a ton of pain in the process, they set off the crps. I was told this before the surgery, and was told it could last for 6-12 months…Well I’m now on month 3…I’m so hoping for the 6 minimum, but with my luck, it will likely be the 12. I’m not feeling sorry for myself, just speaking of reality.

So what can be done in these situations? It is so easy to let them drag you into the pits of despair, and believe me, I’ve been there all to often. Every time, I wonder when it will end, and worry of them beginning. There’s nothing more annoying than having to tell a friend who wants to see you, for the 20th time, that your going to have to cancel! I have lost so many friends because of my flares. But what I realised was they were not very good friends to begin with, or they would still be around, and be understanding! Still doesn’t stop it hurting at the time! So now, I try to accept the situation. I lay on the sofa, and try as best as I can to relax, and wait for the flare to end. Then on the days when I can, I try my damndest to use them as fully as I can. I make sure I exercise, weather it be swimming, handcycling, wheeling or going to the gym. I write as much as I can, and I try to do some household stuff. I feel useless if I don’t. I love a tidy and clean house!

So basically what I’m trying to say is, don’t beet yourself up for not making appointments or meetings with friends. If they don’t understand, they are not true friends! Remember if your having a flare, you need to rest. So take the advantage to catch up on a box set or watch some movies. Try as best as you can to be kind to yourself. They are part of the condition, and although they are the worst part, it doesn’t mean they have to take over who you are. You are strong, and you know they will end.

I hope your having a good pain day 😁

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?

The sofa blues…

Oh how I miss wheeling, and handcycling… yes, as you may have guessed, I’m still not up to par. I’m currently awaiting more blood results which will hopefully tell me why I feel so awful! I’m extremely lethargic, to the point of wanting to sleep all the time. Nausea and lack of appetite kind of go hand in hand, and just feeling generally weak and feeble! So, what do you do when you can’t do what you want? Well if your anything like me, you get frustrated and annoyed with your body. It won’t buck up and get better in the timescale you want. The swimming pool is calling, and my body isn’t listening! I’d like to say that I’m a good patient, but I don’t think that I am. I want to feel better now…and don’t like having to wait for my body to behave! But that is what I have to do. So I’m sat watching the paralympics, wishing to be that good! (Maybe one day!). But it won’t happen from a static position on my sofa!! So for now, when I can I’m writing, and doing a bit of drawing, but finding myself falling asleep doing that! It was my 13th wedding anniversary on the 22nd. I managed to be out with my lovely wife for a couple of hours, but then had to go home. I could eat a tiny bit of my meal, but had to leave most of it. I felt like such a party pooper! But when things are like this, it reminds you to give it your all when you do feel well, and to embrace every moment.

So for now, it’s back to convalescing on the sofa, and hoping to feel better soon. Then watch out David Lloyd, for a will be in the pool as much as I can be. My mum would have said, ‘these things are sent to try us!’ And I completely agree. But still wish they wouldn’t!!