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! πŸ™‚

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 πŸ™. 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 πŸ™ . 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! πŸ‘

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.

4 thoughts on “What’s been happening….

  1. Hi Lexi

    It was great too read your blog and looking a bit more positive despite the pain that you have at the moment. Did the TMR surgery work or is that still a issue. I know the pain can be so frustrating 😀 and sometimes you just want a solution to take it all away but no matter what you try it does not seem to work. Sometimes people just don’t understand what it is like having something you can’t control and it rules your life. But looking at your pictures your still smiling ☺.
    Glad to hear you finally finished your novel so hopefully you can find some publisher who will take it on board. If not I think there is a site that allows you to publish books yourself but not completely clear about that. Looks like your wife enjoyed her parachute jump, me personally I would be petrified even if I was strapped to someone.
    Well for myself been having physio every week for the past month using the Ppam aid between the parrell bars. My god it ways a ton. But it was nice to be able to stand on two legs even though one is not real. So for a few weeks I was doing that and now walking outside the parrell bars using crutches which is a bit challenging since I’ve nothing to grab hold off if I topple apart from the physio walking beside me. They are wanting me to progress to walking sticks next. Getting a dab hand at going up the stairs in my bum which is not too bad if I am having a good day. I’ve be provided with a shower chair to get about upstairs, so getting from the floor up into it that is a pain but eventually I get up. Also got a bath board so I can get into the bath. It’s fine for lowering myself down from it, but reversing it, is hard due to the fact it has a rim going around it and the battery in my back catches it. So hubby was thinking of a chair lift for the bath, unsure about that.
    I have my first appointment at the disability services which deal with the prosthetic. So will be seeing the consultant, physio and OT too see if I am suitable for one. I am hoping to god they don’t say no because I have worked so hard and been through so much to get this far. The only think that worries me is that they could say no because I still have crps in my stump but so far I have tolerated the Ppam aid, but I do suffer the next day. Any tips on that because it seems to seize up and go into what I would fall horrendous cramp like feeling to the point I cannot bend my knee?
    Keep up the training you will get there and good luck for the 11k virtual

    Regards
    Brenda xx

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  2. Hi Brenda.
    It sounds like you’ve been through alot. With regards to the prosthetic and your crps, you know I have crps in my stump, and I have just started trying to wear a prosthetic again. I used to wear one half the time until my neuromas. Now the crps is quite bad, but I can still tolerate one a bit. The hope is that I will be able to wear it 20% of the time, which is better than nothing. Some walking and mobility is better than none. So fight your corner. It is important for your mental health as well as physical wellbeing to have the chance to have some normality in the face of your new normal. I so hope it goes well for you. The fact you’ve coped with the pam aid shows you should be OK with a prosthetic.
    Mobility is a challenge. I’m still coming up with ways of doing things. Shuffling up the stairs with my wheelchair in tow, so that I can get out and about on my own. I will have to video it one day. People often ask how I do it…its simple when the need overtakes!!
    I hope you have a lovely evening. Let me know how you get on at your appointment. It’s always great to hear how you are getting on. Your doing amazingly well, and have such a good mind set.

    Lexi xxx

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    1. Hi lexi

      It was great to hear from you. For some reason your post didn’t show in my emails. Was just scrolling through some of your posts and came across your reply.
      Well hope you and your wife have had a great Christmas and New year. I know things have been difficult for you with regards to been diagnosed with fibromaliga, hopefully they can get on top of it for you. Did your TMR surgery work? Hopefully it did or even give you some relief. I know Reading some of your recent posts the challenges you have been going in regards to pain can be very distressing. Some people I know seem to say have you tried this and that but all you want to say to them cannot be said on here πŸ˜‚.
      While at the disability services at James Cook I came across a copy of belisma magazine and was reading your article which was interesting. Unfortunately couldn’t get to read all of it before patient transport picked me up. Was having another go at my prosthetic but unfortunately my stump does not want to play ball. It flared my crps up and no matter what we tried it didn’t like it. The person who is doing my prosthetic is trying to think of different things to try. So she has ordered me a silicone liner in the hope that my leg will tolerate it. So next time I am there she is going to do another casting and is going to do it a different way. Also hubby thinks I will be wearing my prosthetic 24/7 he must be joking. He thinks I can go swimming in it and have a bath with it on. So have tried to explain to him that will not be the case. I have told him that they will be times when I can not wear it, but hopefully he will understand.

      Because my stump is a weird shape a dog ear at one side (that’s the name they have given it) and the other side has a large raised flap bit, which when anything is put onto seems to push up over and pulls on the scar. She said she wants to try all options before speaking to the consultant to see if it needs reshaping by surgery. One question would like to ask, did you find the bone still hurts? Just that mine was done last July and the bone still hurts to touch, even on top and the end of the stump.
      Would love to see the video if you ever do one of you taking your wheelchair up the stairs. I’m still stuck with the hospital supplied one. Still trying to get help from the Access to Work scheme but it’s a nightmare, they provide grants to go towards a new wheelchair or anything else you need. Wheelchair services up here are pain in the arse even though promised me a lighter one, they have now said it’s not suitable even though another person said I could get one. It’s like your are battling with the system and I work for the trust.
      Well hope you had a good new year

      Brenda x

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      1. Hi Brenda. Happy new year to you.
        I’m sorry your having so many problems getting a wheelchair. It took me 8 months to get mine. I had to beg and plead! It really is a nightmare.
        I hope your husband does understand. Even when people have a perfect amputation and can run with a prosthetic etc…there are still days where they can’t wear a leg, so when your like us, it is inevitable that we will spend over half our lives on wheels. Its just part of it! It’s hard to accept sometimes, but ats worth the time we can be on 2 legs. I’m lucky that my wife doesn’t mind my wheelchair. It gets in the way of holidays etc, which we have had to rethink, but there are ways around most things. I will keep on plugging away with the prosthetic.
        I’d say, if your stump is causing problems, ie dog ears, which is a surgical term for bots on the end of scars, then you may need a bit of a revision. It will be worth it in the long run.
        My bone does still hurt on the end. It is sometimes very sore and can’t put any pressure on it. I use a gel liner in my socket which helps.
        I will ask my wife to do a video of my stair with chair technique. It’s not too hard when you know how!

        The new year has started a little roughly for me, so haven’t yet had a chance to post anything new, but will be on the case in the next few days. The fibromyalgia is kicking my butt atm! Ha ha!
        I hope you had a lovely Christmas and an amazing New year.
        Lots of love to you

        Lexi xxx

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