Event 4! Kempton Park

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

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

The day before, pre Gluten!

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

At the end…but v swollen!

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

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

World record confirmation

Things have been a bit crazy over the past few weeks. With increasing distances, and juggling training with half marathon and Triathlon. Then the rest of my time is spent on fundraising. Sending hundreds of emails to hundreds of companies. But it is starting to pay off. I now have 2 official sponsors. Amazing companies as well. Rebel hr which is a small company run by an incredible lady who helps to make people’s workplaces better places, and Bar Venezia on Exeter quay where I live. We have been going in there for years. I was so extatic when the owner recognised me as a customer, and got behind me straight away. There is another on the horizon, but I’m yet to hear the official stance, and a possible other.

Training with the sponsorship logos

My training is always dependent upon how I am feeling that day. If my CRPS or fibromyalgia are flaring, then I have no choice but to listen. I am still learning how to judge things, but they are so unpredictable that it will never be possible to be accurate. But when all goes well, I wheel twice a week. I’m up to 15 miles now. Then the other session is usually around 16km of pure hills. The bigger the better. I am constantly making world record pace at the moment, but I am hoping to keep improving. Guiness have accepted me for the world record fornthe fastest female using a non-sport wheelchair to complete a half marathon. The time is set for 2 hours. Which is fast for a normal wheelchair. But I like a challenge.

I am also having swimming lessons, so that I can improve my technique with a great instructor. Then I use my handbike once a week, and the next Triathlon has rowing in it, so I’ve been doing that as well. I am lookong forward to concentrating on the wheeling after the next event, and trying to get my speed up further.

New tattoo for my 1st Triathlon

So, above is a new tattoo. I have dreamt of the day that I could complete a triathlon, and when it happened, I wanted to commemorate it, so chose this tattoo. I have my next one in under 2 weeks. Then another half marathon a week later. These are going to be tricky events for me. They sit at the point where I often have flares, so I am just going to have to see how I get on. Hopefully all will be well. The pain, I will push through if I have to, but the fibro flares render me almost comatose for a day or more. So I’m just hoping none of these rear their ugly heads.

If you want to keep an eye on progress or even sponsor me (no amount is too small) please pop a follow on my Instagram Lexi.alyx.chambers and follow my linktree in my bio for updates and articles etc.

Two weeks to go…

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

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

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

Getting out on the handbike.

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

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

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

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

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

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!

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???

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!

Getting out and about for Blesma

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…

See… wonkey doesn’t cover it!

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!

My amazing wife! 👏

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.

Lovely flo ❤

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.

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!!

Oh Happy Day 😁

As many blog writers will tell you, through this therapy of sorts, you often receive contact from readers, and some even turn into friendships. I started conversing with my lovely friend Maggie quite some time ago when asking questions on amputee sites. Before my amputation, and when I first discovered I had CRPS, I found the lack of information out there quite astonishing, which is why I decided to write this blog in the first place. I didn’t think for a second that I would end up here, practically begging for treatment, and then finally finding that one Doctor who will help me, because of the amputee sites, and then this blog. Yes, with thanks to Maggie, huge thanks, who kindly put me in contact with her doctor, I am finally on the road to having a diagnosis, and I couldn’t be happier, or more thankful to wonderful Maggie.

I hope she won’t mind me talking of her, but she is one of the kindest people I have ever had the privilege of conversing with. She always checks up on me, and reads my posts, and her kindness has now put me on the road to treatment. For that, I am so greatfull and can’t thank her enough. I know she will read this, so to you Maggie, I thank you so so much.

So, last Wednesday I had a consultantation with a Doctor who is a specialist in stump issues. I was put in contact with her secretary, who booked the appointment. It was via zoom. I was extremely anxious, as I am so used to Doctors dismissing me and lumping everything under the CRPS brush. But to my amazement, she did not. She listened to my symptoms, and guided me through a self examination of my stump. The whole process took over an hour, which is the longest time I’ve spoken to anyone since the surgery. At the end she spoke of a couple of things which could be causing the problem, and what we can do about it. So, when I had surgery, the nerves are cut. When this happens they have nowhere to go and nothing to do, so they go a little nuts! Sometimes said nerves can also be fighting against a suture or clip put on the end of them! So she thinks that my popleteal nerve is either doing this or trapped. So the plan now is to do an ultrasound and some other tests to see if this is the case. This was the first thing which amazed me. I’ve been booked twice now for an MRI. Being told by the non specialists that this is the only way to find a neuroma. What if it isn’t a neuroma, I would ask? Well then we can’t help, they said! If I questioned it, I would be shut down and made to feel as if I had done something wrong. So to find a Doctor who is willing to explain, and say that an MRI is not only the best way, but not the only way to find issues, was just wonderful. It’s as if realising that your not mad!! So, now the plan is to await my appointment, and take the trip to East Grinstead for tests. If it shows what we suspect, then book for TMR surgery. I will explain what that is in future posts, if it is on the cards, but basically it will give my nerves a job to do, and stop them complaining so damn much!!

I honestly can’t even explain how happy I was after this consultation. Someone not only listed to me, but also may be able to help. It meant that some of those dreams which I had lost, may be achievable again. I may be able to walk again! (At least a small portion of the time, I will still have the crps! There is no cure for that bit!). But to have a chance of a reduction in the pain I’m in…and that is everything.

I celebrated with one of my first little wheels in ages!!

Dying for treatment!!

What crps look’s like! I’ve always been against showing stumpey, but to show people is to help them understand. I am not ashamed of stumpey!

Anyone with a chronic pain condition can testify that the road to successful treatment can be somewhat of a minefield, when you have more than one condition. This minefield becomes even more chaotic when Doctors can only see one condition, and deny the possibility, or sheer presence of another. Case in point – I have CRPS in my left stump. I also have this other, yet to be diagnosed issue. I saw a lovely Doctor (finally!!) Who I must say, seemed a little out of his depth, but couldn’t see past the CRPS. No matter how many different ways I explained the different types of pain I’m in, he just kept going back to the CRPS. Frustration doesn’t cover how I felt! On the day, I had my wife with me; and my Blesma representative (amazing veterans amputee charity) wrote a detailed email prior to my appointment, explaining the circumstances. Yet with two advocates, he still seemed to be blinkered to the possibility of something else. I started to feel like an orange ribbon, like the emblem of CRPS charities, and that’s all people see. The prosthetists, the physio, and now the 1st Doctor I’ve seen face to face (other than my GP, who is amazing!).

Symptoms of CRPS.

I am a registered nurse, and throughout my career I have been used to the medical terminology used, and how things work within the NHS, and am yet to receive any tests, or treatments, or interventions of any kind. Instead, I’ve been passed from pillar to post, around the roundabout and house’s, getting nowhere! Meanwhile, the pain and effects of pain, are taking away the enjoyable parts of my life. So I can’t help but worry what happens to those who don’t have an advocate, or a realisation of what should be happening? It’s not easy to speak up, and describe your own condition when your Doctor is telling you that what you are saying is rubbish! When they can’t see past your ‘other’ condition; or are simply out of their depth. How many people out there are desperate? Desperate for treatment? Desperate for someone to listen; really listen to them, so they can have their pain investigated and have a chance of a meaningful life. I have been a nurse for 14 years and have had the privilege of working with some magnificent Doctors and specialists, but I know first hand that anyone can slip through the cracks, or be ignored, or even not believed! This, despite the mantra which all us care givers are taught to abide – “pain is what the patient says it is”. Not all health professionals remember this! Instead we often get labeled as ‘junkies who are just after medication’, or they sometimes go to the other end of the spectrum by medicating, and medicating some more; chucking a plaster over it, instead of diagnosing it!

How many people with pain conditions have reached the point of absolute frustration? If a person is telling their care giver that they are in pain, isn’t it their duty to investigate why? And to treat them. If they refuse to do so, or ignore them; isn’t this pure medical negligence? When, my Mum was in agony with a variety of conditions, she said to me “If I was a dog, they would put me down”, yet we are left, suffering! These people who are responsible for leaving us with such suffering are basically condemning us to death, One way or another! When your pain is horrific and no-one will listen, or help… what else can you do? I was extremely worried and shocked when I learnt that according to a web based survey, 20% of CRPS sufferers had attempted suicide, and 46.4% reported suicidal intentions. This is shockingly 6x higher than those with depression, according to a psychiatry study. With statistics such as these, for my condition alone; can Doctors really justify their ignorance to people who are in pain? I would be lying if I said I hadn’t considered it. Especially with the pain of flare ups, and frustration of no intervention and poor treatment!

According to oatext.com, and I should imagine, anyone with a chronic pain condition – “chronic pain patients are at elevated risk of suicide”. Shouldn’t those who refuse to treat, refuse to listen, refuse to test, to diagnose, to intervene, be held accountable for their actions? Instead of leaving us to suffer? Shouldn’t they be referring us to those who do know how to treat our conditions? Those who may be interested! Isn’t that the definition of ‘proper care?’. Not condemning us to a life of suffering!

Ive got a logo!

My new logo for the challenge.

This is my new logo for the event. I have made some clothes trying to get things out there a bit. I have a hoodie, baseball cap, T shirt, vest, and a long sleeve T shirt. All with my logo on. Cat also has a hoodie. Theyre all awaiting sponsorship logos. I still havnt got any definate sponsors as yet. I am sending emails out all of the time. I will persevere and perhapse change the email. I was sent a T shirt and hoodie from Saltrock which will come in handy post training. Sunwise are also sending me a pair of sunglasses. All of these things are absolutely wonderful, but none of them are getting me closer to my goal. I need to get my event out there. I have been speaking to the British Legion about my wheelchair, and they said they would help me. Im just awaiting a home visit at the moment. Ive just joined BLESMA too. Which is for veteran amputees. They have also been really helpful so far, and will be sending someone out to help. So I have made some progress. Now keep all fingers and toes crossed for the new chair. I only have 15 to cross now, so I need help with the others.

Thankyou to Saltrock for my goodies!

I had a really nice suprise last week. Steel bones had put a feature on their facebook page and web page about me, and what Im doing. I thaught that was lovely. So things are getting out there more and more. But not enough yet. I despirately need some sponsors. But I think that everything is a learning curve, and what doesnt work the 1st time, may need to be changed and adjusted. I will not give up.

TRAINING:

This has been steady. The Gym sessions are going great. Getting some good strength and endurance. Were trying things that weve never done before, which is so much fun. The wheeling or pushing, some people call is, is going well in some ways. But I really just need the chair. The NHS finally came up with my replacement. I was really hopeful. I thaught that it must be a little better than the one I had. It futs better, in that the width of the seat is smaller, and so it fits, but that is it. The extent of the improvements stop there. It isnt lighter, even though its made up of half plastic! The seat is too short. The wheel I use for self propulsion is really difficult to grab and I cant use it without gloves. My padded gloves dont stick at all, like they used to with the other one. I could go on, and on. Safe to say, it is a huge disapointment. I went out today for my 1st training session and it was disasterous. Really slow. The wheels seem to love to go towards every gradient. It doesnt free wheel at all, even downhill! It does have anti tipping, which is amazing. I actually think that the red one was better for training, and thats saying something! But as always. I will keep trying. Keep plodding on. Theres always a plus side to everything. Maybe this is supposes to be this way. Give me some good strenth before I get my real chair. I hope so anyway.