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.
Official event poster
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 🙏
The date is set. This is the date where I will be attempting another world record. I am hoping to become the 1st female to complete a 12 hour continuous wheel using my everyday non-sport wheelchair. The actual record (pending Guiness approval) will be the furthest distance traveled in 12 hours in a manual wheelchair (female). I am also hoping to beat the male record, if I can! To do this I will have to travel more than 87.5 miles. Not easy! But in my typical fashion, I will give it my all. What is the point in doing something that is easy? If it was easy, it wouldn’t be a new world record!
So I have been training since I recovered from surgery. I manged my 1st marathon just before Christmas. Which was just a month after leaving hospital, following 3 surgeries and 2 infections, totalling a month stay! So I was pleased with that. It wasn’t fast. But that isn’t what it is about at the moment. It’s about time in the seat!
1st marathon this year!
So, 2 days ago I completed my 1st marathon this year, which I was super happy with. Unfortunately as keeps happening, my strava went a bit doolally. I did my usual marathon route. One I’ve completed 4 times now, but for some reason it diddnt count the whole way. The segments are way off as well. But rather than accept what is said which was 37km, and know I’d done the marathon, I kept going until it said that all important 42km. So I actually think I did 55km in total! I’m sure that anyone who has strava knows that feeling! Circling a carpark for a few yards just to make it to the number you wanted?!
So marathon complete. I had hoped this would be the bump in confidence I need. It has helped. But apparently I’m suffering from the same thing all athletes suffer when you achieve what you set out to do! A post achievement lul! I set my 2 world records last year, which I was desperate to achieve. Plus the 7 events and 13 virtual events. Now the records are on the wall, it feel like I’ve never done them at all!
My world records!
How does one go about getting back the mojo? I have no idea.. but i have the desire to try, and that is the most important thing. I really want to make this 12 hour continuous wheel. I will be the 1st recorded female ever to do a something else. In the big plan, there are so many more of these. But I have to learn to pace myself and not stress about having time off!
So, what do I do when I’m not wheeling? Well, most of my time at the moment is taken up attempting to get sponsors. To get backing and to raise funds for the amazing charity I am hoping to raise money for this year, the Aaron Lewis foundation 🙏. They are am awesome charity who help veterans like me get back into sport. They have made it possible for me to complete my Triathlons by purchasing a handbike for me. They also keep in regular contact with me. They are amazing. I just hope I can give something back to them. People keep saying that I should give to one of the bigger charities. I’d get more notariety that way, but that’s not what it’s about. It’s about important charities. It’s about showing what can be done with the equipment you have. So you don’t have a sport wheelchair, but you can still do a 5k, or more in the chair that you have.
So that’s it for now. Today I have the pleasure of feeling sick all day, after having my every 3 day lot of lactulose! Yum! Then tomorrow I hope to be at the gym, depending on how my shoulders are healing from Sundays jaunt!
So, incase you haven’t realised. I managed to set the world record for the fastest female using a non-sport wheelchair to complete a marathon, at the London Marathon. But before I talk about that. There was one other event a week before; the goodwood half marathon, which I did complete. It was a tough one. Very strong headwind with uphill section, which covered three quarters of the race track. I had to complete 5 laps. I was exhausted by the end. But it was the last one before the big one. Chichester was beautiful. Unfortunately for the third time, booking.com dis not place me in a disabled room, despite my asking for one. So it was a crawl up 2 flights of stairs. The room was beautiful though, and the owner was amazing. Booking.com are terrible for disabilities. You pop in your preferences, and they always say there are facilities for disabled, weather there are or not! But, despite this little set back, goodwood was great.
At goodwood.
So, now onto the biggie. The epic London Marathon was just incredible. The crowd, well let’s just say, all I heard was my name being called the whole way, with words of support. It was so phenomenal. I did get the world record, with half an hour to spare. It was adjudicated on the day by Guiness world records and they told me when I reached the finish line. It was one of the happiest moments of my life. The whole this was just wonderful.
Me with my world record.
What made it even more special, was the fact that I found out official that I’d got the record for the half marathon the day before. I was sat in out hotel at breakfast, ready to go to the excel to get me number and an email came through. Well, I burst into tears, in front of everyone. They all must have thought I’d recorvwd some bad news, or I was a nutter! But they were tears of elation. Then it was off to the excel. Where I managed to bump into the male record holder for the same record I now hold. A chap called Stephen Salmon. He is phenomenal. He has been beating his own record for years, and managed to again this year. We’ll, it was funny. When we were going into the excel, a photographer took a photo of us two together. It wasn’t until we got in that Cat pointed out, that if only he realised he had just got a photo of both record holders together! I wish I could have a copy of that photograph. Me being me, was so happy to have met him in person (we’ve been chatting on line for ages and speaking on the phone) but had not yet met in person. We are both very similar, and driven by very similar things. So that was the best bit. Then came the number bit. Which was such a relief. My start place had been moved from red to green, so that it could be official with Guiness. So I had lots of going backward and forwards with sorting that out.
At the excel with my number.
The start line was very tricky to find, and unfortunately the marshals sent my wife and I in the opposite direction twice! She must have ran miles pushing me as fast as she could to the line, running about all over the place, until we finally made it. The down side was the singular disabled toilet, which was covered in poo. No joke, it was all over the loo, the seat, the floor, and no loo roll. Not only that, it was the furthest from the start line. I had no choice but to hover, which was not fun! I did speak to the manager of the green zone, and his answer was ‘oh well!’. Not helpful at all! Then came the start, which was amazing. But I found the whole way round that I was fighting to get through people. I think I could have completed the marathon in possibly half an hour or more faster than I did, but just couldn’t get round some people. Some lovely runners stepped in and helped so much, which was amazing. Then I rolled over a massive blob of chewing gum, which got stuck to my wheel and I couldn’t get it off. I had no choice but to stop and try to do what I could. Then out of nowhere came an amazing lady who took off her own glove and used it to remove what she could. Then just ran off. I shouted ‘thankyou’. What a wonderful thing to do. This lady is my hero. It meant I could carry on much quicker and get that record.
Cleaning off the bubblegum!
As for the route. I don’t actually remember much of it. My poor wife and our friend, Kate, ran about London all day, trying to find a point where they could see me. Then they shouted furiously at mile 21 and of course I was in the zone and diddnt see them! I literally saw legs the whole way! But I have lots of photos with thanks to friends and people on the London Marathon Facebook page. Plus London marathon them selves.
Just a couple from the marathon.
I came over the finish line at 4:32:11. A new world record. So 2 new records in less than a month. To sat I am happy is an understatement. It hasn’t sunk in yet. I’m not sure when it will. I’m yet to receive my certificates. They can take 12 working days, so hopefully they will be here soon. 🙏 I did receive my half marathon one, but it had the wrong date and time on it, so I’ve had to ask for another one. According to this one I’m wonder woman, and I’ve set the half marathon record in the future! I thought they couldn’t possibly get it wrong. I was wrong! It is right on line though, which is the most important thing.
My half marathon record.
So hopefully by the time I’m out of hospital (which I go in for surgery again on the 18th October, for more nerve surgery on stumpey) I will have both Records waiting for me at home.
So what’s next… well, big things next year. Another new world record. This time I’m doing something that no one has ever attempted or achieved. I am hoping to become the first person to wheel from lands end to John O’groates using a standard non-sport wheelchair. It will take approximately 30-40 days. It is going to be the hardest thing I’ve ever done, and a huge event. Pinnacle photography are organising the event and sponsorship, which is brilliant. I doubt I could do this one alone. In fact Pinnacle have been so incredibly supportive throughout my whole 7 events. They have been there at both Records taking photos and putting posts out. They are still helping now, and being amazing.
Back training already.
So keep checking in for updates of my epic challenge. We are hoping for August 2023, but the official date is yet to be set. So that’s it for now. Double world record holder, signing off! 💪😊
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!! 👌
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!
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.
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!
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.
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’ve now been in hospital 9 days. 8 days post op. Had my TMR (Targeted Muscle Reinnervation) surgery on Thursday last week. Had a bit of a rocky ride since then. My pain levels sky rocketed and not much seemed to bring it down, other than visits from an anaesthetist to put a bolus (big volume) of local anaesthetic into the catheter (tube) which was placed during surgery to administer constant local anaesthetic into my leg. We now think that the catheter was rubbing directly on a nerve, so causing more pain. So yesterday, the Dr’s had a pow-wow and decided to take the catheter out. The hope being that the pain would get better. It did with movement, but not anything else, intact it sky rocketed further. I spent the day screaming in pain. Never felt anything so bad. My CRPS was flaring, and my leg was killing, so it was back to theatre to have a new nerve catheter placed.
Pre and post op
Now, the next morning, there is a significant improvement. My pain is back to its normal level. Which is amazing. Along with the pain before, the Dr’s tried a few new medicines. Wish we hadn’t, as they all seemed to cause the same reaction… Sudden Tachycardia (high heart rate over 100 bpm) and light headedness. One of them dropped my BP as well, and another caused extreme shaking all over my body. This happened 6 times in total. Rather scary. So now, today, I will be happy just to have a day with less pain, and no complications.
Pin cushion!
So now I’m still in East Grinstead hospital. I have to say, the staff are all absolutely amazing. Completely different to any other hospital stay I’ve had. They actually believe you when you say that your in pain. They don’t try to kick you out just because they are convinced you should be going home now! Unlike another hospital. Who decided that after a week, I shouldn’t be in as much pain as I was, and started to get quite impatient with me for being in pain!
Here is what hospital treatment should be like. Where nurses actually care, and no one makes you feel like your a burden. I’d actually consider moving here, just for better treatment! So, fingers and toes crossed for the next few days, and with no more blips, hopefully I will start to recover nicely.
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!
Lexi's journey through life as an elective amputee for CRPS. 