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.
This was one on my 1st conundrums. We are lucky and have an en-suite, but it is far too small for a wheelchair. So I tried using my chair to the bathroom, but cant get close enough to hop the rest of the way, and it really isnt safe too. Crutches are really quite dangerous in the night, so I finally settled on using my hands and knees and crawling there and back. Do be advised though not to sneak up on your unsuspecting other half in the middle of the night. One looks like something from a horror movie when crawling in dull light 🤣🤭.
2) CARRYING A CUP OF TEA IN A WHEELCHAIR – Very tricky!
This was another difficult one. I love hot drinks, especially tea and coffee. Im fine when my wife is home as she makes them for me (I know, im lucky), but what to do when Im on my own. I tried wheeling with one hand, but this is a no, no, as I ended up going into the wall, and spilling my tea! I tried a flask, which is a great idea, but hard to sort from a wheelchair, and managed to burn myself. So now, I have a hand towel on my stump board, and I make a cup of tea, half filling a large cup, and then put the towel between my knees and the cup in it, so that if it spills, it wont burn me. Then I wheel very slowly. I have still spilt, but not as often.
3) PHANTOMS – Things I found helpful.
If you are lucky enough to go through this whole process without phantom pains, then you are one lucky person. I get a mixture of sensations and pains. Mine started as soon as I woke up from surgery. I had cold toes! Then continuious electric shocks and quite excrutiating pain. It was just awful. It wouldnt go away no matter how much pain relief I was given. Whilst in hopsital, as you may have read, I was given mirror therapy. Well, this was just amazing. I did this 3 times a day for 2 weeks, and my pain was almost gone. I get relapses every now and then, but mainly in rainy or cloudy weather. I also find hot compresses helpful and massaging my stump with cream (E45 not clotted!). This isnt to say that mirror therapy is for everybody, because it isnt. But your prosthetic councellor, doctor and prosthetist will be able to advise of methods that are helpful.
4) FITTING THROUGH DOORWAYS WITHOUT GRAZING YOUR KNUCKLES!
This is one that Im still trying to figure out. When im paying attention to what im doing im usually fine, becaues then I use the tyres to wheel through the doorway. But if I use the other part, the wheely part (im sure it has a better name than that), but if I use this bit going through a normal size door, I scrape my knuckes and omg it hurts…alot! I have had lots of bruises and cuts, and only 5 minutes ago, another bruise! Im not sure if there are any short cuts or quick fixes for this one, just dont forget that doorways are not much wider than your chair!
5) WHEELCHAIR ACCESSABLE TOILETS – Used by all!
Having to use a wheelchair accessable toilet should be a simple thing. But it really is not. I recently went to a big event where there was over 40 regular sized toilets and 2 over a mile apart which would fit a wheelchair. I was quite taken back when I found myself at the end of a large que of people standing in line for one of the 2 disabled toilets. I know that disabilities can be hidden, but if you can use a regular toilet, and there are only 2 that will fit a wheel chair, wouldnt you use one of the others? The worst thing was that, all of them saw me too. I have since decided that a little bravery is needed on my part, to speak up in the future, (its either that or learn to self catheterise!).
6) URGENT TOILETING – Plan to live outside the loo!
Im sure this is quite an obvious one, but it took me by suprise. I have taken morphine for so long that going to the loo normally, without alot of medication, is really an impossability. So having to drink Lactulose by the cup full was normal for me. As was traveling at lightening speeds to the bathroom on my crutches. So when I was completely wheelchair bound, I thaught I had this one sussed. I was wrong. I am not going to go into too much detail, but I thaught somehow that as I was sat down in the rush to the loo, that it would all be alright. It wasnt! So all I will say is, plan agead!
7) SLEEPING ON YOUR SIDE.
Personally I use a cushion. I find it really strange when I lay on my side, and my knees touch but my feet dont. I also found that my hips got quite sore, so I simply place a pillow between my knees and it really helps me.
8) BE PREPARED FOR QUESTIONS
You will be asked, alot, what happened? The 1st few people who asked me, I explained things to them about CRPS, and I think I terrified them. I suppose the thaught that you could have a relatively minor surgery, and end up an amputee is quite scary! So now I just say it was the result of injury. Im hospital my fellow patients thaught it must be because of diabetes, which is a common presumption. In fact, alot of people make presumptions. You just get used to it.
9) DISABLED TOILETS DONT ALWAYS FIT A WHEELCHAIR.
This was quite a new one for me too. I had to use my wheelchair quite alot before my surgery but I diddnt really go out anywhere. Almost all of the disabled toilets that I have tried so far have been really difficult to get into and out of in a wheelchair, and forget about turning around. They often double up as baby changing, which is fine, except that the nappy bins seem to take up alot of room in the tiny toilets. I have got stuck in 2 already. One of them, I managed to get in, but couldnt get to the toilet as there were 3 nappy bins! The ones which require a RADAR key are often the best ones, so I would get one. These come from your local council and on line.
10) FORGET ALL YOU KNOW PRE AMPUTATION – IT WILL CHANGE.
Im my short 8 weeks of experiance, I have learnt alot, and I can honistly say, to expect the unexpected. Ive found out who my friends are. Ive found out what I can do. Ive seen my life through different eyes. Some people are lovely to people in wheelchairs, and some are not. You get stared at, alot. Ive just learnt to accept that and just smile. People are naturally curious after all. Id say that the most important thing that ive learnt is to be confident. I know that I have gone through alot to get me to where I am, and I have a long road ahead. It is still the best decision I have ever made, and although I could sit back and get depressed about it all, and believe me, ive had my days. I want this to be the making of my life, and not the end of it. I see everything as a new challenge, and experience. Some good, and some bad, but all difderent.
So, along with the bath, everything was a learning curve, and yes, I mean everything. I had to completely forget about the way I used to do everything. I was quite reliant on a wheelchair leading up to a surgery, but I had 2 legs. One there to balance on, and another to land on (even though it killed) if I needed too. The other learning curve was the age old saying of ‘you find out who your friends are’, when big events happen. I was quite lucky here. My best friends, and they know who they are, there are 4 of them, were amazing. They came to visit me in hospital. My closest 2 came almost every day. I was never alone for very long. My mum in law even came in twice, which was just lovely. When it came to work people however. Well, out of my whole department, and theres probably about 50 of us, one person bothered to come in and see me. Well, mortified doesnt really cover how I felt about this. My department is 3 wards up from the ward I was on. They all knew I was going in. I put it on facebook and visited the department. The killer was, that I have worked there for 8 years. Yes Id had alot of time off, but all those people that ‘claimed’ to be my friends, diddnt really seem to be. I was in for 2 weeks. I saw some of them in the corridoor, and they were very nice, and said theyd ‘pop in’, but diddnt. Its not all doom and gloom. I saw a couple of the consultants which I work with, and they were just wonderful. So kind. One of them diddnt have a clue that I was having this done and held my hand and said ‘if there is anything you need, please say’. This almost made my cry. It comes to it that you work with a ton of people, and the consultants are the nicest. Im not saying that they shouldnt be, and in my experiance theyre just wonderful, but they seem to get a bad rap from Nurses.
So couple the lack of visitation from work people with all of the rumours which were flying about, and this was pretty hard to take. The funniest rumour was that I had my leg chopped off to get out of work! (If you dont laugh, you cry). There was alot like this. Little did those people know that I still had friends in my old work place, and the hospital is actually quite a small place, so they heard them and told me. One of my old work friends came in to see me twice too.