Thunder & rain!

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.

1st time wearing my London marathon t shirt!

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 🙏

East Grinstead hospital

So, you may have been wondering (or not) where I have been since the London marathon. Two weeks post marathon I had scheduled surgery for another nerve issue in my stump which was getting considerably worse throughout my training. I had another TMR surgery with muscle graft, which went really well. Unfortunately I had a nerve catheter in my leg for pain control post op. These work really well and really help with pain, but for me, they seem to cause infections. We diddnt know this trend until this point. I had the catheter removed after 4 days and was already very poorly with a huge infection. I ended up going back to theatre to have more surgery, and my leg was filled with puss. I was then put on very strong Intravenous antibiotics, but after another week the infection returned, and so this meant more surgery. More antibiotics, more cannulas and more pain. I felt pretty unwell. I lost about a stone in the month I spent in hospital. The saving grace was that my surgeons were phenomenal, and the nurses at East Grinstead hospital were amazing. They were so efficient and attentive. I can’t thank them enough for their care.

After a month, I was finally well enough to go home, but was still in a considerable amount of pain. But after a week more, I decided it was time to get back to training. Unfortunately I had lost quite a bit of muscle and strength, and so the marathon distance which I was used to wheeling, had become almost impossible, especially in the rain and freezing cold weather. But all hope is not lost. I am still out there training as before and building my way back up to marathon distance. My goal being to make it back to marathon before Christmas day. This will be weather depending, but I will do my very best to get there. I don’t give up easily, as you all know!

I can’t wait to get back to where I was before. Some exciting news came when I was in hospital, I have been accepted for the London marathon again next year, so I will be entering and attempting to beat my own record. So this provides a huge incentive for me to get back there ASAP. Also, if all goes well, we are a go for attempting lands end to John O’groates using my everyday non-sport wheelchair, which will be another world record. We are hoping for August 2023. So this is another huge incentive. So it’s training, training, and more training for me. I am loving it, and hating the cold! It makes wheeling exceptionally tricky, which very slippy hands. But, it is all good strength work, and I can’t wait to reach some new goals. 😍🙏

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.