March-ing on!

This weather we are having is definitely not condusive to training using a wheelchair. For so many put there, myself included, the cold and for me, especially the low cloud, is a trigger for my nerve and crps pain. So, at the moment, I’m waking up 10 + times a night to get heat packs and take painkillers. Not ideal! The nerve pain I had surgery for post London Marathon is in full swing as well. It kind of feels like a knife stabbing you, which then sets off the crps. So things are a little tricky. The fibro is also acting up at the moment. The pain side of this isn’t a huge bother because the crps pain is so extreme that it kind of masks it (little win there!). But I di get the lethargy, migranes and insomnia. So, in short, training for an endurance event is tough. But I don’t give up easily. So it’s about training on days I can. I know when the weather improves, then my condition will improve with it. So I look forward to that 🙂

Otherwise, things are plodding along. I had a bout of a few donations to my JustGiving page for the Aaron Lewis foundation, but these have tapered off again. So I’m working hard every day I can, plugging away about the event. So, in case you don’t know, on the 21st of August, I will be attempting to become the 1st female to travel the greatest distance in 12 hours using a standard non-sport wheelchair. I will be doing this at Exeter Arena. It is not going to be easy. Have you ever tried wheeling in a standard wheelchair? It’s hard in comparison to the sports versions, who are lightweight and aerodynamic and made for speed and endurance. Your everyday non-sport wheelchair is not! But what would be the point making things easier for myself and doing things an easy way? No one would sponsor me for that! On that subject, there is something I’ve noticed in the media. There is a huge disparity between the nationals putting out stories of men vs. women. I have followed some extraordinary women for years who are doing amazing things, and for some reason, they never make it onto the main news. Yet any male who does anything seems to get there fine. Don’t believe me? Look back at the stories. It is not due to a lack of participation.

Anyway, I’m still plodding along. 3 marathons since Christmas using my everyday non-sport wheelchair (in training). With training ramping up at the end of March, I can only hope the weather behaves 🙏 But if it doesn’t, I will carry on regardless.

I have had some amazing support from well wishers as I’m out and about training. It really is amazing to me that anyone knows who I am at all. 😊 I’m just a person who found themselves with a few chronic pain conditions, who still wants to keep exercising. So why not do it for some wonderful charities?

So, back to training. Prep today for a marathon tomorrow. Cross fingers that there will be no rain and minimal head wind 🙏

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.

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.

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.

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!!