Bridgewater world record!

I have been rather hectic over the past few weeks. Prepping for challenges and training and getting over other challenges. We’ll, as you can gather from the title I did manage to set a new world record at the Bridgwater half marathon. Guiness world records set me a time of 2:30 for the half marathon, and I did it in 2:12:02. 18 minutes under the time set. So I broke and set a new world record for the fastest female using a non-sport wheelchair to complete a half marathon. This is, of course still pending official guiness adjudication. I broke the time, now its the paperwork, that I just hope I filled in correctly. I will know if there’s any problems in 2 days, and know if all is perfect in 5, so wish me luck. This wait is more nerve racking than the record itself.

I arrived at Bridgewater rugby club nice and early. Then followed an amazing official announcement to all the runners and spectators of my challenge ahead. Then Phil form Pinnacle photo agency arrived, which I knew about, bit honestly didn’t expect him to come. He was there with cameras, and helped with making the day so special. The course itself was so well organised. Everyone was so friendly and encouraging. I don’t think one runner diddnt say words of encouragement when passing me. I really couldn’t have asked for a better environment. The course itself is advertised as flat. Lots of courses are! But to a person in a wheelchair, this is not the case. It is almost completely up hill. This was rather daunting, and left me pushing harder than I have ever done before. I had no idea if I could do it when the hills kept coming. There were 2 down hills but these led into a 90 degree turn, so I couldn’t get up any descent speed. But I put my head down and went for it, and coming over that line… well I had to hold back the tears! Not sure how I did that! It was an amazing feeling. All that training, and sleepless nights. Now the wait to see that it is all real! It is so difficult. But I have to trust in the system, and that I studied the guidelines thoroughly enough.

So where from here. Well on Saturday I will be off to Goodwood for the 2nd to last event. Then home for a couple of days before traveling to London for the last event and the biggest of all. The London marathon and another world record attempt. Where I hope also to become the fastest female using a non-sport wheelchair to complete a marathon. I have achieved this twice in training. But the marathon is a little tricky. Lots of people to fight my way through, so I only hope that I can navigate these as quickly as possible. I have 5 hours to do it. I have completed it in 4 hours 20, and that wasn’t at full pelt. So fingers crossed for the day. It will be very difficult. But all I can do is my very best. So it is here where I ask anyone who can to please donate to the charity which I am doing all of this for. A charity who have helped me so very much. Blesma limbless veterans. Thankyou ❤️

https://blesma.enthuse.com/pf/lexi-chambers-799fb-d79f9-9e2a2

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!

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 👌

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 😁

Indignity!!

So, right now I’m sat in the waiting room of the accident and emergency department in Exeter. I was bought in by ambulance earlier (will sat why in a minute!). Now I have been wheeled on a hospital wheelchair, one with no chance at self propulsion, into a waiting room, on my own, and I’m dying for the loo!!! I never wanted to feel the way I do now. Completely useless and cast aside. I have literally been dumped. I am totally stuck, unless I crawl across the floor. My wide is at work, and although will be here at some point, I’ve now been waiting for 2 hours! Whilst sat here a number of nurses and doctors have wondered passed. I tried to get the attention of one of them, to no avail. I feel so helpless! Why would someone just dump someone like this, when they know they are immobile?

So, earlier today, I was sat drawing, as usual, on the sofa, when suddenly I had chest pain, then jaw pain, and my heart rate escalated to 206. It felt as if my heart was trying to break through my chest. I felt nauseous, light headed and short of breath. It was absolutely terrifying. I have never before thought I was going to die. Now the nurse in me went straight to impending doom, and with the symptoms it was hard not too. My mouth was dry, my fingers numbing and I was cold sweating. I thought I was having a heart attack. Now, as I’m still here, it is evident that this I not the case. I think I had a panic attack. Very strange considering I was just sat on the sofa. Last time I checked, drawing was a relaxing activity, and although I had Buffy on in the background, it is not scary enough to trigger a panic attack. So another perplexing moment!

So, the paramedics arrived, and with chest pain and a heart rate of 206, they bought me into A&E. Turns out, it was the wrong day to have an episode of any kind, as it is so busy. So, I was taken into a room, they did my blood pressure, asked a bunch of questions to which no one listened to the answer. They were too busy sorting out a drunk lady in the corridor! Next thing I knew, I was dumped in the waiting room. No explanation, no dignity, no help.

Now, I’m still sat. Needing the loo. Nowhere near a toilet, and even if I could see one, no way of getting there! I asked the paramedics to bring my chair, but they said I didn’t need it, and to be honest, at that point I felt as if I was going to pass out, so didn’t think to question it!

I had the pleasantries of two children noticing my lack of leg, who proceeded to amuse themselves greatly with gears of disgust! Not that things like that bother me, because they don’t. They’re just curious, but when your feeling like a lesser human, the last thing you want, is any attention drawn to you. I just want to go home! My wife suggested on the phone, to self discharge. Good idea, but how? I can’t go anywhere. I’m totally stuck!!!

I never want to feel like this again! Not ever. I just want to go home, and have the dignity of being able to go to the toilet before it’s too late! Yet, I can’t, not until my wife can finally get here, if they let her in!

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!).

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!

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.

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.