Alot has happened in the past few days. Where do I start? Well, I was back at the mobility centre and my awesome prosthetist managed to get me an amazing leg. Its almost a blade, its so good. Aparently im the 1st person i the southwest th have a blade like this one. I walked up and down the bars with it on. It felt amazing. Amazing, apart from the pain. Which just increased and increased, until I couldnt bear anymore. Ok this is getting a little worrying now! I tried not to think too much of it. But if your anything like me, trying not to think aboit something, meana you think about it constantly, and your brain just has a battle with itself! So, thinking about it all of the time….and trying to convince myself of anything that it could be, other than what it may be! But even with all this going on, I was still so happy to try my leg. It was only a few days later that I was back at the mobility centre and I tried it again. The same situation occured. Lots of pain! But I decided to struggle on through. I walked with my crutches. Went up stairs, and down, and up and down a slope. I had to stop a few times, but I diddnt care. Because my physio said that if all went well, I could take my leg home after this session. So this session was going to go well. No matter the pain.
I got to take it home. Then came to giving it a name. It cant be called ‘it’ forever. So we went round in circles with my favourite names, but none of them fit. Then came Florance. I was thinking of Florance Griffith Joyner (Flo-Jo) the amazing world record holder for 100m and 200m sprint. My lovely wife said strate away, ‘oh, like Florance and the machine. Shes Florance the machine’. I actually really like that reference. So my leg is now Florance.
So she is now home. I have managed a couple of minutes per day. But then im so sore I have to take her off. Its so annoying. I keep hoping that one day I will put her on and it wont hurt this time. Fingers and toes crossed for this one! But in the mean time, im shuffling along in my wheelchair. Still despirately trying to get funding for my, what I call, proper chair. I have been in contact with the British Legion, and hopefully they may be able to help a bit.
This is what ‘stumpey’ is fast becoming. We’ve gone from being swolen and chunkey, to thin and baggy, hense the name! But now we have made some progress in the world of walking. I have had 2 sessions with the pam aid, which is basically a long blow up leg which goes over your stump with a metal frame, so that you can kind of walk. These all went really well. Then I was casted for my leg. Basically a plaster cast of my stump. This was a really funny morning. Catherine, my prosthetist, and her student both did a casting, and both times stumpey diddnt want to let it go! So the plaster got stuck. We all tried to pull it off, but no luck, so it had to be cut off! But it wasnt the end of the world. Even though it had a big cut in it, the cast could still be used for my new leg. Then before I knew it, my leg was here and I got to try it on. My foot hadnt arrived at this point, so I was using a loan foot, but I got to have a go. First it felt really strange. I hadnt walked without crutches in such a long time. The socket itself felt quite tight and was actually really painful. Me being the stupid me that I am, diddnt say to Catherine quite how painful it was and just tried to go with it and grin and bear it. This is not the best thing to do. The prosthetist needs to know what is happening so that she can make adjustments. So on my second visit, I did say. But unfortunately by this time, I was in alot of pain in general.
IS IT CRPS??
So, Ive been in alot of pain for the past week. It started very randomly when I was sat in my wheelchair in my kitchen. All of a sudden stumpey started to hurt. A combination of feeling like someone was scraping out my bone marrow with a spoon, and horrific painful pins and needles. The concerning thing was that the pain was similar to my CRPS pain. The strength was right up there too. I just hope that I am wrong. Ive had similar pains in my other foot too over the past few weeks. So hopefully its just pains from use. But you know when you get a sixth sense about things. I get this, and Im not usually wrong. But I really hope that I am this time. When we walked using my new foot yesterday, I could tolerate my prosthetic for a few minutes before I had to take it off. The new foot is amazing. Its like a mini blade. Aparently im the 1st person in the southwest to get a foot like this. Its super springy, and almost feels like a real foot. I love it. I may be able to take it home at the end of the week, if all is well. In the mean time, its back to waiting to see doctors for me. Trying to find out what this pain is. Just keep everything crossed for me that its not the dreaded.
Lots of people lately have been asking me why I want to do this challenge. Along with quite alot of comments like ‘your mad’, and ‘your crazy’, and basically alot of other comments along the same lines. I have also had alot of wonderful words of support and encouragement. So why? Well, its not just a case of why? I think the whole need to do something came from the 6 years of not being able to do anything. You see, before all of this I so wanted to do a half ironman triathlon. For those of you who are not sure of what that is, its 70.3 km broken down into 1.9km swim, 90km bike and, 21km run. So when all of this happened and I couldnt even begin to properly train for it, I was devistated. So when my surgery was done, and I started to realise that I could do something. I just had to change my activity.
When I first came up with the idea it was to give me something to do to help get some level of independance and fitness back. Something to achieve now, instead of waiting for the day when I can walk again, and maybe even run (hopefully). But as I started to look into things, it soon became more than that.
I wondered if somehow it may inspire other people to realise that having a disability doesnt have to mean that you cant achieve something extraordinary. Yes Ive lost my leg. But my leg was stopping me from doing everything. I was in a kind of limbo, and now I have a definate sence of who and where I am. So to me being disabled doesnt mean anything other than a new set of challenges to overcome. This will be another one. I think that everyone is capable of anything that they want to do. All you have to do it put your mind to it, and your body will follow. I hope that people will see what is possable in an ordinary wheelchair, by an ordinary person, and see that nothing is too big that you cannot overcome it. All tou have to do is look at it, and find a way. Thats what I plan to do with my event. Take every day as it comes. Do the best that I can, and good willing, make it all the way. I may have lost a leg, but I think ive gained an understanding of alot more. Myself.
Answer…..the wheelchair ive nicknamed ‘big red’, which I used for Wednesdays training session. I thaught Id try going another way along the quay. It turns out that this was a bit of a mistake. It would seem that big red cannot travel over the smallest pebble without tipping over, getting stuck or leaving me wheelspinning! But, never to be defeated, I carried on. It felt like miles and miles of this relentless terrain. Actually it was probabaly a mile! Eventually I found myself near the bridge which would lead me back to a smoother path. But the bridge entrance is massively steep. But again, never to be defeated, I plowed ahead. Wheeling with all I had, up the incline. I made it to the top to face a 10cm metal lip onto the bridge. I tried and tried to get over it, but I couldnt. I even fell out of my chair trying. Which prompeted a lovely lady to stop her car and ask if I needed help. I declined (stubborn as ever!), and managed to hop up, grab my chair with one hand, lift it over the lip, and clamber back in it. Needless to say, I will not be going this way again! Not in this chair anyway!
I made it back to my starting point relatively unscathed. This chair is very heavy, and rattles constantly. Im hoping it will help me with my technique for undulating terrain. It will hopefully help with my strength too.
I am so looking forward to getting a proper chair. I had a fitting with Unique mobility and Sunrise Medical yesterday (Thursday the 13th June). I was fitted for a Quickie Helium. This chair is perfect. Its excellent for my eveeyday mobility and will be perfect for my challenge. The only problem is that the total cost for the chair with a descent cushion so I wont get pressure sores, is just over £5’000. So far ive managed to raise £60. I dont have any savings to use, otherwise I would. So im plugging away at the manufacturers and wheelchair suppliers. Im hoping one of them will be kind enough to sponsor me with a wheelchair. So that I can train using it and complete my challenge in it. Afterall it will be benefitial for them. When its done, their chair will be part of a world record and will have been tested beyond most chairs. It will have traveled nearly 1000 miles on consecutive days. Not to mention the miles I will be doing in training. I am also trying to apply for grants. There are alot out there, bit when you start looking into them it seems that I only qualify for a few. I am also a wildlife artist (probably havnt mentioned that), I am holding an exhibition of some of my work between 4th – 11th of September at the custom house, Exeter Quay, and using all of my proceeds towards my chair/ the event.
Im now a few weeks into training. For the most part it is going well. Im now up to 5.7 miles. I have done this distance twice now, and this sunday (which is my distance day) I plan to increase this. Im still despirately trying to fundraise for a wheelchair. I havnt heard anything yet. Im sending emails out every day, talking to people on the phone, but nothing yet! I have set up a just giving page and have had a few donations already, which is amazing. So fingers and toes crossed!
At the end of my second session I felt a little niggle in my right shoulder. I iced it and diddnt think much of it, but the next day, wow it hurt! I made an appointment with my GP, but as usual the nearest appointment was 4 weeks away. Hopefully I will get to see a physio before Christmas! Anyway, I iced my shoulder three times a day for a week and finally I could see improvement. I was very careful with weights in the gym too. I diddnt want this to be the end of the road already.
So my session on Saturday the 8th of June was brilliant. I only stopped a couple of times, and this was mainly to let people go by. I made almost 6 miles and could have done further. This is all in my silly, heavy chair. So im hoping that by the time I get a lighter, more permenant one, I will fly along!
The gym strength training is going well. My strength has almost doubled. Ive been working on my nurtition, and increased my protein and carbohydrate intake. Huel kindly sent me a box of goodies. A couple of t shirts, and some protein powder, which really came in handy. Its gluten free too! (Im allergic to gluten….very allergic!).
So today im back to using the quite dangerous, red chair. I wont be defeated though. Every hour in the chair helps. Every hour is another step closer to my goal. Hopefully this time next year, I will be getting ready to set off….
This was going to be the make or break. I started a video diary which can be seen on my instagram page (wheelybigchallenge) and my facebook page with the same name. I got myself all prepared. Got comfortable in my extremely heavy NHS wheelchair, the one you can see me in, in the hospital photos! Then I set out. The 1st wheel was just to see where I was at. I managed about 2 miles. With alot of stops. It is actually alot harder than it looks to self propel a wheelchair. There are a couple of small, but steep hills at the quay where I live, but I managed to get up them. It was really tough. I went right through a pair of gloves too. But I did it. I iced both shoulders, and was actually quite pleased.
Along with wheeling twice per week, my plan also involved gym training to build some more strength and endurance in my upper body with sports specific exercises to help prepare myself for the challenge.
Along with starting training. This is when I started to do some research. I contacted guiness world records, and as far as I know there is definately no record of a woman wheeling from Lands end to John O’groates using a standard non modified wheelchair. So I would be setting a new world record. I also started looking into a plan. How would I be able to do this? Why do I want to do this? Support needed etc… The 1st and most important thing that I need is the wheelchair which I will complete my challenge in. I want to make sure that the chair I use is an everyday wheelchair. There are a few makes and chairs that look amazing. The RGK Tiga and max light both look brilliant, as do the Quickie Argon and Helium. The only problem with all of these is that you do not get one of these on the NHS, and because I may be able to walk one day using a prosthetic, I dont get a huge individual budget for a light, and very functional wheelchair. So this is my 1st hurdle. Sponsorship. Trying to get sponsorship for a wheelchair, and so that the event will be possable. I also had to decide which charity I wanted to fund raise for. This was such a difficult decision because they are all briliant.
Wheeling session number two was a little more tricky than number one! Ive mentioned that I live in a 1st floor appartment, and I cannot go out without my wife to get my chair up and down the stairs. So we had to think of a plan so that I could try to go wheeling during the day when she was at work. Before my surgery, I had to use a wheelchair alot as I couldnt walk or use crutches as the pressure on my foot when it was dangling was agonising, so we baught a cheap wheelchair for me to use (the one in the picture). Now this chair is fine for pottering around my appartment, or being wheeled about, but self propelling, its like trying to wheel yourself with a 100lb back pack on. It is really heavy. The weels feel like theyre going to fall off. It doesnt handle any bumps at all, and feels like its going to collapse if you hit any. So this was an absolute nightmare. Couple this with the fact that we had to keep it in the bin store outside, as there is a step in and out of the downstairs hallway, which I cannot get a chair into or out of alone. Well, it was all really difficult. Involving crawling on my hands and knees, which is often the best option, especially for stairs, but it does hurt. Well, eventually I got outside, and into the chair. Strate away it was very uncomfortable. No stump board, which was really bad. Stumpey really could not cope with dangling at all, so I kept on trying to bring stumpey inward so it was on the seat still. This caused alot of pain to my knee. So that was pretty uncomfortable too. I almost fell out 3 times. I did partially tip over once. But I did make it as far as my 1st wheel. O was so proud of myself. It was so much harder, but I did it. Anything would feel easier than this….
In previous pages I have briefly told you about my past. What things were like before the CRPS. I mentioned that I was really into sport and fitness. This was kind of an understatement. It was my career before I became a registered Nurse. I got my 1st fitness instruction qualification at the age of 17. Then my 1st diploma at 18. I worked on cruise ships all over the world, teaching various aerobics classes, and personal training. If youve ever seen the programme ‘the cruise’ with Jane Macdonald, I was on that ship (the Galaxy) and briefly on that programme! I loved teaching. I qualified in sports therapy, massage, sports massage, personal training, fitness testing and numerous other fitness qualifications. I even came runner up for fitness instructor of the year when I worked as an assessor for WABBA qualifications, which was one of the most amazing things id done. I was briefly in the Army. I joined after being on cruise ships. I wanted to be a PTI. But unfortunately it wasnt to be, and I was injured after 8 short months ( thats another story). I competed in natural bodybuilding competitions too. Coming 6th in GB was my best placing. So, basically, as you can tell, fitness from one type or another, has always played a huge part in my life. So when I had surgery on my hammer toes, because they hurt when I ran, then all of this happened. It was nothing other than devistating. One of my driving forces to have my leg amputated was the thaught that I could get some of the old me back again. I could run again. Compete in triathlons, do another half marathon, and do everything I loved to do before all of this. In my head all of this would happen relatively quickly, if the surgery went well and the CRPS was gone. The reality was quite different. I massively has to adjust my expectations, and plans. To be honest, they almost adjusted themselves a little bit.
So the plan was to get back to the way I was before. But I was no longer that person. When my leg came off, it was like some of the old me was removed (and yes I know my leg was) but also my way of thinking seemed to change too. I still wanted to do the old things. But now I almost want more. I had been out of hospital for 2 weeks when the boredom set in, and I was getting tired of doing nothing. The pain was a little better, and I was really needing something to do. A new challenge.
I was sat in my chair in my kitchen, and wheeling backwards and forwards, thinking to myself, ‘this chair is really heavy’. Then came about, the wondering if anyone had wheeled themselves any distance in a wheelchair. Then this simply went to, I wonder how far I could wheel myself in a normal box standard wheelchair, which then lead to the wondering if I could wheel myself from Lands end to John O’groates. This was 3 weeks ago in the afternoon. By the time Cat came home from work, I decided that this was what I wanted to do. This was a good challenge. This would give me a focus. But it soon became alot more than that.