Life has been quite a whirlwind of ups and downs since leaving hospital. I managed to get a complete package of backing for this year’s venture, which included everything I need to make it happen. Then, unfortunately the wonderful chap became unwell & now that has gone. So everything with regards to this year’s big events are up in the air. I can’t complete a venture like lands end to John O’groates without support, and I can’t plan it all on my own whilst training the amount I need to in order to complete this. But I am ever hopeful that someone will come along on a white horse and rescue this venture. It would be absolutely amazing if I can make it happen. It will be a world first and a new world record. But I also have a plan B, which is the wheel for 24 hours straight using my everyday non-sport wheelchair. This would also be a world 1st and world record. But even though it would be physically extremely demanding for me, it doesn’t feel like a big enough challenge to raise the kind of funds I’d so love to raise for charity. So at the moment I am training as much as I can, and prepping myself for the London marathon again. But it is awful being in limbo, and completely up in the air with plans. One minute everything was set & now, it has gone. Its pretty hard to take. (Although I do completely understand, and absolutely adore the lovely chap who was going to help me). But it is still very difficult not to be thoroughly disappointed.
So I continue to train in the wain and sodden ground, which makes every km feel like 10. I’ve had to adapt things and shorten my sessions, but bring them closer together! It’s the only way to keep going! Those of you with CRPS will testify that this kind of weather is awful for crps. It sets off numerous flare ups of that and then the fibro rears its ugly head to get in the way of things! But I still try my level best to carry on. Making plans for both events, just incase. Of course lands end is preferable, even if it isn’t this year, but next, I still really want to make it happen. It would really put the Aaron Lewis foundation charity on the map, and give me the chance to get CRPS out there. The plan was to complete a warts and all documentary along the way, where I would show exactly what living with crps and fibromyalgia is like. Plus training to a high level with both. As you know on social media it is pretty difficult to show exactly what things are truly like. So it would be great to show everything. To expel some of the myths. Like the favoured question by most of us “you don’t look like your in that much pain!” What is that? It’s such a stupid thing to say! My reply is normally an explanation to try to educate, but often I’d just like to say in return “well, you don’t look that ignorant!” But I don’t. I would guess that none of us do! Anyway, so training continues, and the flares are rife with the rain and drops in atmospheric pressure, but that’s the way of things.
I hope to get something concrete sorted soon. It is very tough attempting to train for two very different events. Both of which I need to ensure are accurately prepped for. My lovely wife, who is always brutally honest, thinks it may be best to do lands end next year now, and prep ourselves. But the amount of funds it would cost to complete this seem impossible to arrange. This was where the lovely chap came in. He knows all the right people who would help. But I never give up on anything. So I won’t give up on this! Hopefully I will have some concrete good news soon 🙏
Lexi's journey through life as an elective amputee for CRPS. 
Hi lexi
Hope you and your wife are well.
How did the operation go? Did they manage to sort it all out this time or are they planning more in the future.?
Its a pity your plans for your challenge have been put on hold but hopefully next year things will be different and you can get a new sponsor to help you out with the challenge. I know life can be hard sometimes but you always seem to have a smile on your face no matter what happens.
Well got another new leg, so far this is my third one so hoping this one will be better fit and allow to walk a little bit longer. Had to see plastics the other week to get my stump reconstructed mainly due to shape, one side is like a dogs ear and the other side has a large raised section which means when i put my leg on it pulls to such an extent that it hurts when i wear my leg. but when i went to see plastics he stated it was something he would not personally do even though it needs doing. He stated that prosthetics need to reconstruct it. I felt like laughing at him since they only make legs and do not perform surgery. I was gobsmacked with what he said. I came out of that consultation has if i had wasted my time and his completely dis-heartened with the whole experience. It comes to something when i work for the same trust as him and get treated like that. So i got in touch with my surgeon who did the amputation so I’m waiting for him to get back to me with what we can do next.
Had surgery on my left foot yesterday, due to severe arthritis in it, my consultant is trying something new before going for a joint replacement (which he did in my right foot which went tits up and had to have leg off). But he is now saying he might be reluctant in doing anything else because he thinks i might have crps in my left leg, which is going to be a bummer, so that will mean both sides affected so watch this space.
well i hope you get a new sponsor and keep wheelie
regards
Brenda x
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Hi Brenda.
Gosh, it sounds like you’ve really been through it. I’m so sorry you are suffering so much. It is rediculous that the plastic surgeon said he couldn’t help you. This kind of surgery is literally what they do. I worked as a registered nurse in theatres for many years, and specialised in plastic and reconstructive surgery. We did this kind of thing often! I’d go to another Dr. It may be that he doesn’t have the expertise or he just is an arse!
I’m so sorry that you may have crps in another foot. You know, I know how bad this condition is. I hope that you don’t have it there as well. But you know that type of pain. It’s like no other.
It is very upsetting about lands end. But if I can get permissions, I will still be going ahead with the other event, The 24 hour wheel. It is more difficult than lands end for me. Even being in my chair for 24 hours is something that none of us do. It will be very taxing. At home, I don’t stay in my chair, I transfer to the sofa, where it is comfortable 😅 so I think that will be the most difficult part. At the moment I can’t train at all. It’s only temporary, bit my freewheel has broken, so I’m waiting for another one to arrive. It is very irritating as I rely on it completely.
I hope that your foot heals well and you don’t need a joint replacement.
Sending you lots of love
Lexi xxx
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Hi Lexi
Well it turns out the plastic surgeon i saw is a complete tit, and will not be willing to reconstruct my stump even though it does need doing. So he has decided to discharge me from his clinic. I can think of a few names for him but will keep it clean. I would love for him to try and walk on a prosthetic which causes pain and discomfort. I am just waiting for my surgeon who did the amputation to get back from his holidays and then hopefully will decide what to do.
Now I have found out that i do have crps in my left leg, so that means my stump and left leg are affected. so it is going to be trying time, what is going to be through in the mix next. How are you coping with your fibromylagia? are you able to manage the symptoms?
hope you mange to get your freewheel sorted.
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Hi there. I’m so sorry about that. Some surgeons just don’t get it do they? It took me ages to find mine, who is amazing and understands amputees. I hope your original consultant does more than the last.
I am also so sorry that your crps has spread. That must be tough. I feel fortunate that mine is, thus far, contained to my stump. Although the nerve issues set it off all of the time, so I jave a constant battle of burning and stabbing pain! It’s rediculous! 🤣
The fibro isn’t pleasant. But again I almost feel fortunate that I have crps in a way, because the pain from that is so bad and so intense that I don’t really bother about the pain from the fibro. It’s a mere niggle compared to the crps. It’s the tiredness that gets to me. If I do too much, I can end up losing a whole day where I can’t move at all, and just fall asleep all the time. I hate it. I’m always doing something. It’s my way of coping with pain. I keep as busy as I can. Plus the exercise helps, with the pain, and with fibro as well. As long as I don’t overdo it!
I have got a new freewheel. It is going through some teething problems atm, but I will get there. New equipment is always a bit of a pain at first!
I hope you get your reconstruction sorted out. Don’t give up. I’d find out other plastic surgeons and send them emails about your problems. One of them is sure to want to help. I hope so.
Have a good Saturday
Lexi xx
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