A letter arrived through the door last week. An appointment. Not unusual at all, as I have an abundance of these. But this one baught a sigh of relief. It stated that on the 21st of November I will be finally collecting my newwheelchair. This month, things may finally start to turn around. I have my driving lessons through the week of the 11th of November to the 15th, when I have my driving test. 6 hours a day of driving. Its going to be quite a test of endurance for me, as ive been off work for quite some time. Then my chair 10 days later. Amazing.

So how is the new leg? Its amazing. It looks so much better than my last. It is much smaller so my trousers fit alot better. I have been visiting the tailors and sewing alot myself, to fit 20 inch zips into the inside seam of my trousers, so that I can remove my leg when I need to; without dropping my trousers! Its such a simple fix, and yet so life changing. I love my clothes. Ask my wife! She dispares everytime the postman arrives! “Been shopping again Lex?” She normally says! But to be fair, I am lucky. I hit the jackpot with my wife. She never minds me spending anything. She knows that im an avid bargain hunter, and as we are almost the same size; we get to share clothes!

So back to the leg. It is amazing. But unfortunately I cant wear it much at all. My pain has gotten much worse. I have now developed the all too familiar aldonia, which is where your skin hurts to touch. I had this periodically before my amputation. Mainly with heavier touch or in the bath, but now it is with most things. Also, my skin has gotten extremely baggy, as I am shrinking really fast. So my ‘baggy boob’, as my wife calls it; is now a pendulous baggy boob! So the skin is rubbing on itself. My Fibula, which is the bone next to the Tibia (bones of the lower leg) is rubbing on my prosthetic also. I have another appointment with my prosthetist on the 20th of November. I think this problem is just going to get worse; as is the nature of crps. I still have no word about an appointment to see a specialist. But I remain ever hopeful.

Training is still much the same. I can work hard in the gym, but wont be able to commense proper chair work until I recieve my new chair, and get my hand fixed. I also need my shoulders looking at to see if there is any lasting damage. Lets hope not.

Still, there is alot to look forward to. I am causiously optimistic about my future. I am a realist and believe that you can change so much, but you have to accept those things which you cannot change. I have crps again, and that will not just dissapear. My choices are simple. Hope that soon I get to see a specialist and maybe try some treatment. Try this spinal stimulator, although im yet to read any positive results with a crps patient. If all else fails, and I can raise the £50’000 needed; then I want to try osseointegration. There is a lovely lady in America who has had it, and has crps, but she will be able to walk despite it. Failing that, its trying an above knee. Thats something I really do not want to do unless absolutely necessary. But I cannot give up and just accept that this is the way things are. I had a few weeks where pain was less, as if to tease me into a false sence of security; and it was amazing.

So, in this journey of my new normal, I am finding an ever increasing amount of wierd and wonderful (if you can call it that) attempts to make a disabled persons life easier! That coupled with the constant battle of the able bodied insisting upon using the only disabled toilet as their personal poo toilet! So in the spirit of sharing, I thaught id do just that.

Firstly I may have mentioned before that whilst I cannot work in my profession as a registered nurse, I am topping up my GCSE’s. Also, because I love to learn, and kind of go a bit stir crazy if I cant! So at my college there are a few funny attempts to make my life a little better. The first being the disabled stair lift to get down to the costa cafe, and then the same to get to one of the only disable friendly toilets.

Firstly the lift. I have shown a photo below, as it has to be seen to be believed! In order to get on the lift at the top of the stairs you have to position yourself on the edge of the steps, and then lean forward; hope to god that you dont topple out of the chair; then grab the heavy leaver, and pull down the platform to get on the lift. Now assuming you have arms like a power lifter, then you would still struggle with this. So firstly thats a problem. Then once your on the lift. Your stuck, unless you can miraculously shimmy down to the bottom of the stairs to press the button that operates the lift! Yep you read right, the button that operates the lift is at the bottom of the stairs! Then if you manage to grab some poor person, who lets face it, probably has better things to do with their time, then it takes bout 5 mins to travel down just a few steps. After which, in order to go to the toilet, you would have to repeat the pricess again. So its fare to assume that one task could take half the morning. I get to college at 7am, which is the only time my wife can drop me off. There is no one else there at that time. Not until at least half 8. Lets face it, who would want to be unless necessary.

Now, assuming that all of these things happened, and you make it to the toilet, then you reach another hurdle. Each disabled toilet has male toilets and female toilets either side; you can guarentee that someone is either camped out in there, or have just left; pleasantly leaving behing the mornings emination. Why, oh why, do people insist on using the disabled toilet as their personal poo toilet? There are plenty of others which they can use, and only a couple which I can, and yet i have to either que or risk the activation of my gag reflex!

So my challenges seem to come every day. Things that I never thaught id face. I do wonder what smart engineer thaught of putting in a disabled lift, with a button you cant reach! The college is very conscientious towards me as im only one of 2 wheelchair users in the college. So you would think that I wouldnt have any problems using the loo! I will be asking if they would consider making one of the toilets a radar key entry. We only get a 15 minute break in the morning and I never have time to wait for and get into the toilet. When you use a chair, or a prosthetic for that matter, its a nightmare to get anywhere fast! This way if there are any other disabled, non wheelchair users then they can use the bathroom as well.

So my top tip of the day would be, pee before you leave home. Have a radar key, which you can get from your local council, and maybe take a mask soaked in perfume, so that you dont have to smell the previous toilet occupent!

Sounds ominous!! But it is the BIG day for me. After months of relentless begging, and pleading, I will finally be getting my new socket! Hopefully filled with just one sock. This came as a huge suprise. My good friend Kate came with me to my last appointment at the mobility centre, for moral support. I was met both my physio and prosthetist, and went strate into the casting room. This was a suprise. Unbeknown to me, earlier that week a friend of mine had spoken to them and told them that i was not happy with what was going on. This seemed to help and put them into action and finally recasted me for a new socket. Thank goodness. I couldnt be happier. The only problem is that i feel awful when i go there now. I hate conflict, and yet I now feel that Ive upset the people that I really like and respect by not being happy with them. (Im far too sensitive sometimes!) If only the chap that felt the need to chastise me for something that I diddnt even do, had maybe asked me first before acusing!!! Surely things are not supposed to be this difficult or stressful!

As for the other bits of life, well I still dont yet have my chair, but I am trainig hard in th gym. Every day without it pushes the achievable date back. This is supposed to be a positive thing. To show what can be done with alot of will power and determination, and to show that being an amputee and having to use a wheelchair, is not the end of the world. Yet I have mainly been met with distain. People seem to think that i need my wheelchair just for the event. This is not the case. I need the chair because I cant wear my leg much due to the crps. When I cant wear my leg, I still want to be active, so I need an active chair. It is that simple.

College is going well. We had our first assessments this week. Maths was, well, ok ish!! I will find out the verdict next week. I’m loving english. The creative writing is amazing. Im writing a continuing piece about a victorian female serial killer… I quite like the gothic era. I know I messed up one of my questions in the english exam. I completely forgot to describe the styles of writing, in the section which askes you to do just that! Instead I rambled on about the story itself; analysing it within an inch of its life!! Oops!!

So keep your fingers and toes crossed for me that my new socket will fit and be much better than the one which I have now. Its certainly going to be smaller, so I can finally wear my old clothes again (simple pleasures!)

The new chair should be similar to this. Pretty cool, I think!

Last week, I started a new chapter in my life. One to keep that Frontal Lobe in check. I started at college (again). This time ive decided to redo some of my GCSE’s and do a few new ones. I absolutely love learning, and whilst I still cant go back to work, and probably cant for some time, its great to be learning again. As a Registered Nurse, you are learning all of the time, so this is part of my job which I miss the most. Its been 17 months since I was last at work. My art work does keep me occupied, but its not massively brain taxing. So although ive been to university with the qualifications which I have, I decided to challenge myself with improving my grades in Maths and English, and completing new GCSEs in Chemistry, Physics, Biology, and Human Biology. Its alot, but im loving it!

So, what is all of this for? Well, I have to be realistic and prepare for the fact that there is a chance that I may not be able to go back to being a Registered Nurse. I hope that I can, but there seems alot standing in my way at the moment. Mainly pain and mobility issues.

So when it comes to training. Im still hitting the gym 4 times per week. Working on strength and endurance as best I can. I cant use my chair much at all as I still have the old one which has given me recurrant Tendonitis. So I am doing the best I can until my new one arrives.

As for my prosthetic. Well, all i can say is that its a nightmare. Try wearing 6-7 fluffy sports socks, and a thick rubber like liner and a thick plastic socket….all summer. Ive been back to my mobility center 3 times now, practically begging to be recasted for a new socket and each time my current one gets filled with more stuff. So I now have a massively baggy leg that hurts my knee, that im wearing 7 socks with, that has made my mobility reduce so much. It hurts to wear it more than it did before. So I try not to, but I cant use my chair because that hurts my shoulders and agrivates the Tendonitis due to the poor set up of the chair. So sometimes I just shuffle around my apoartment on my hands and knees! ( what a picture!!)

I had an encounter at the mobility centre on Friday which left me feeling so stressed and demorolised. My old physio came into my session with my new lovely physio to basically have a go at me. He claimed that when I had my wheelchair assessment, I told the people that I cant wear my leg at all. Now, my wife was with me at this meeting, and at no time did I ever say that. I told them why I need an active wheelchair. Because im an active person. Because my current one has left me with injuries. Because I live in a 1st floor appartment with no lift, and so unless someone takes my chair outside for me, I am basically house bound. Im due to start my driving lessons soon, and need to have a chair which I can get in and out of the car myself. When my crps is bad, I cant wear my leg at all. But the rest of the time I do my best. It always hurts. It always causes alot of pain, but im not one to give in. To be honest, id be much better off in my chair permenantly. Id have less pain, and all the associated things with it (like sleep deprivation etc) would be better. But i want to do the best i can. Walk whilst i can. I cant walk far, or for long. A few metres. I have to use a stick or crutches as well, but im upright. Which is amazing. So the fact that this chap felt the need to come to me to say id said something which I diddnt say, and my wife is a good witness, I find disgusting. I tried to tell him, but he didnt listen. He basically tried to call me a liar, then went on to say that he had faught for me, and id still be getting my chair! So not only is he calling me a liar, he makes himself the hero in the same sentance! Cat thinks that the student who was taking the minutes for the wheelchair meeting probably tried to simplify them and it ended up with a poor account of what was actually said. I think this is a strong possibility. But the fact that my old physio has known me from the start and knows I have crps, and yet still questions why one day i wear my leg and the next i cant, is disgusting!

I have another appointment on Thursday. With my prosthetist. To beg again for a new socket. Im not hopeful. Its like the whole system is set up for you to fail. I need a new socket. The one I have is huge. Its painful. I have to wear tons of socks. I cant wear any clothes with it because its so wide….. So im keeping all of my fingers and remaining toes crossed.

In other parts of the country, you get recasted when your up to 3 socks!!!

I cant wait for these things to be sorted. For all of this waiting to end. This is the 1st time that I have been upset about having my amputation. Even finding out the crps is back, as easier to take than the endless appointments with completely demorolising outcomes!

Anyway, I will try my best to keep positive. I have alot of great things going on and alot to look forward too. I also know that im not the 1st person or the last to have struggled to get help with mobility.

So on a lighter note…. heres my little boy, Winkeypoo. Having recovered from yet another bout of Pancreatitis. He is such a little trooper. He keeps me company, and sane (well, sort of), if you call talking to a cat, and insisting that he answers you, sane?

So, it has been a few weeks since I last wrote about anything. There has been alot happening in the world of Lexi! Where do I start? Lets start on a high note. The NHS have finally conceeded that I need an active wheelchair. So I am eagerly awaiting the arrival of my Quickie Argon. Im so excited. They said it could take uo to 12 weeks for it to arrive, and I saw them about 3 weeks ago….so hopefully it wont be much longer. The chair that I have is still causing quite bad injuries, so I have had to cut my training down to a minimum. What does this mean for my event? Well, if the chair comes soon and there is no lasting damage to my shoulders, then fundraising depending, I can still go ahead with June next year as planned. If however I need any treatment on my shoulders, ie Surgery, then it will have to be postponed to later in the year, or worst case scenario, the following year. But I will be doing it still. It would have to be a major incident to stop me. Im more determined than ever now. Just need to get on with some more fundraising when my chair arrives. With thanks to the lovely lot at Invictus active, I have been able to do some training on the indoor wheelchair trainer, which they have leant me. It is amazing. Its set up in my living room, behind my sofa at the moment. So I can hop on and off (so to speak!) Whenever I want.

As I think Ive mentioned before, im also an artist, and have an exhibition on at the moment at the Custom House in Exeter, Devon. I have 2 days left! Ive managed to sell some pieces, which Im so happy about. The weather hasnt been that great, so I havnt had tons of bodies through the door, bu there have been a few. U fortunately none of my friends have come in as yet. One of them is currently in hospital after having babies, so she is forgiven! As for any others, ‘sham on you’. Just kidding! People are busy. I understand that.

So what else has kept me from here….

Well, I have enroled back in college. Im redoing some of my gcse’s. I diddnt get bad grades. Just not the A and B which I need in a couple of subjects, to hopefully go back to university in a couple of years. I wont say too much about that, as I dont want to tempt fate with telling anyone (other than the wife of course) about what Id like to study, until I get accepted (hopefully!). I am also doing 3 other gcse’s on line, thanks to BLESMA, who have funded me. They have also paid for me to do my driving lessons. I passed my theory the other day (which was quite a shock!). They recommend that you take it whilst driving, and I havnt even started yet! I start my weeks course in November. So watch out roads! It will be fantastic though. With the new chair and driving, I will finally be independant. Which will be absolutely amazing. You take for granted simple things like, getting out of your own home to pop to the local shop for a pint of milk. Little things like this, I just cant do. I rely on my wife to take my wheelchair down stairs, and put it in the car and drive me places. I cant go far in my current chair because of the damage it has caused to my shoulders, and so she now has to push me alot. I find this impossable to take. I hate being reliant on anyone, let alone the person who is my world, my wife. I dont want her to become my carer too. (Not very sexy!). But that is wha has heppend. She is just amazing. One in a million. I am so lucky. She loves ‘stumpey’. She thinks its amazing. My ‘floopy boobie’ she says it looks like!! She likes to draw on it and turn it into a vast array of animals (as you can see below!).

Im still fighting with ‘flo’ and my wonderful prosthetist. My leg is quite baggy now. Its been filled out twice so far, after I was wearin 5-7 thick socks with it. Imagine wearing 5-7 thick sports socks on your foot in this summer heat!! Not much fun. On top of that the pain of the crps being back in my stump, is not very condusive to prosthetic leg wearing. So im awaiting an appointment at the end of September where we hopefully agree that it is time for me to have a new smaller socket. I may be able to wear some of my old clother again. Yippee….i have 3 pairs of trousers out of the, well estimated twenty pairs which I have. Its a nightmare. None of them are smart either. So ive gone from wearing chinos, shirt, belt, nice shoes and often a blazer, to wearing tracksuit bottoms or shorts everywhere! Not fun for me. I love my clothes! So I cannot wait to get a new socket. Hopefully one which fits and is smaller. I can only wear it for short periods of time. Its very much dependant on the day, and how much pain I can cope with. As with the nature of crps. The pain is always there. The flare ups are the worst. But im forever hopeful that I will be one of those who sends it into remission. I seem to spend alot of time waiting for things. Im waiting to hear from the OT who saw me over a month ago, who was supposed to ring me the very next day, who diddnt. Im waiting to see my prosthetist, im waiting for my chair, im waiting to see my consultant. Thats the funniest one. My GP put in a request for an URGENT appointment with him over 3 months ago!

Anyway. Here we are. Im waiting for alot. When it is all here. My life will be much better. Alot easier. But until then…..

You may have noticed, or not, as the case may be, my lack of training for the past couple of weeks. This certainly is not voluntary! I still have my absolutely awful wheelchair. This thing has now given me a multitude of injuries! A torn rotator cuff. Tendonitis in both shoulders. Sprained wrists and swollen hands. Also, lower back pain. So as I can not get about any other way without a considerable amount of pain (unless I develop the ability to regrow a limb!), I keep using it for every day use, which in turn, keeps the damage going!

So now im trying to use my prosthetic more. My pain is a permenant 6/10 at the moment. When the leg goes on this becomes an immediate 8/10 (oh, the joys of CRPS!). But im nothing but stubborn. So I will now keep it on until I cant tolerate any more (sshhh, dont tell my physio!). Im trying to train myself to cope with, and deal with more pain. So that a semi normal life may one day be possable. So one way or another at the moment, I cannot sleep. Its either the shoulders waking me up, or the CRPS. Im getting a little fed up with not sleeping. Its just rather annoying. So, training in my chair is impossable at the moment. Im hoping that the chair I need will arrive one day. The British legion and BLESMA have said that they will help. Which is just amazing. Im not one to ask for help to be honest. I dont like asking at all. But when it comes to my mobility, which is already rather terrable, being compromised even more, then help is necessary.

So my challenge is now becoming a challenge, within a challenge. Getting the chair as soon as possable, so that I can resume training, so that the date ive set for LEJOG can still stand. Now, anyone who knows me well, will know just how stubborn I am, and I am determined to make this all happen. Even though there is alot against me at the moment. Im my experance though, nothing in life comes easy. Some people seem to have a nice easy time of things. I know people who have. They need something, and there it is. But Ive never been one of those, and its ok. I dont mind. If I have to wait, and fight for things, then thats ok. As long as its not to the detriment of others.

Something funny (strange, not ha ha) that ive noticed recently, is that apparently if you dont wince, whine, screw up your face, shout out, moan or make some obvious display of pain, then aparently, you dont have any. At least thats what ive been told. I dont like to make a fuss. I dont like to make a show. When im in pain, which lets face it, is an everyday occurance, I wont go about showing everyone, or telling everyone. I dont mind if others do, as we all have our way, and coping stratagies. Mine is absolute denial! If I ignore it, it will go away! But to be told that my pain isnt that bad, in comparison to others, is to be frank, bloody rediculous. Pain is not a contest, and it is completely incomparable. Maybe I should sit and cry in public. Whining and moaning to myself! Then will it be acceptable to realise that my pain is real! As for those that try to tell me that they are in more pain than I. What the heck is that about? Again, is it a competition? Well, anyone with CRPS will know who the winner is here! Try to google the worse pain a human being ca go through, the top 2 answers are CRPS and amputation! There we have it plonkers! Us folk are in absolute agony, alot of the time. I hate that I feel the need to explain myself to people. I wish that I could go back to before my 1st surgery, and never have had it done. But I cant. Life has handed me this path for a reason. I have no choice, but to follow it and see why? I think everything happens for a reason. Im yet to see what the CRPS is for, but im sure I will find out one day.

While im discovering the meaning of life, pain and stuff, I hope to get back to training soon.

• 

Lots of people have been asking me about Phantom pain and my thaughts on various therapies to help with it. I had my below knee amputation at the beginning of April this year, and by June I was free from phantoms. So how did I do it? Not with drugs! I am allergic to all of the usual medications which help with phantom pains, so these were never an option for me. I woke from surgery with absolutely horrific phantom pains and strange sensations. My 1st sensation which diddnt go for a few weeks was cold toes! The phantoms were relentless. I was lucky to have a great prosthetic councellor who is a specialist in mirror therapy. She started me on this 5 days post op. It was the best thing I could have done.

Mirror therapy was invented by Vilayanurs Ramachandran to alleviate phantom limb pain. You place the good limb on one side of a mirror and the amputated stump on the other. I sat in my wheelchair with a large mirror between my legs. You then look into the mirror on the side with the good limb. Then you ‘mirror’ movements made by your good leg. Ie, leg extention, extend leg at knee, both legs at the same time (mirror symmetric). Because you see the reflected image, it appears that your phantom limb is also moving. When I first started this it felt like my foot had grown back. I got all sorts of sensations. It could be quite uncomfortable at times. But it was worth it. The trick is to do the therapy when you are having phantom pain. I did the therapy between 2-3 times per day. It can seem that it isnt doing much. Like you are putting alot of effort in, for not much reward. But just hang in there and be patient. The biggest reward will come. Being pain free is the best reward of all. I diddnt realise that it had done anything until I realised that I hadnt done it for a few days, and this was simply because I diddnt need to. The pain had gone. Whilst working on the mirror therapy I would also spend a little time each day desensatising stumpey. Using heat packs, and different massage. I would put cream on several times a day. Massage would sometimes help with the phantoms too. I would get cracking with it as soon as you can, and dont give up. The results will be worth the effort and time you put in. Each session only lasts for about 10 minutes. Which is nothing really. This really does work. Im proof of it. So give it a go. What have you got to loose. Its got to be better than being in pain, and taking medications that make you hungry and gain weight.

Top Tips:

1) Get comfortable.

2) Go somewhere quiet, where you wont be disturbed.

3) Do at least 2-3 sessions per day.

4) Dont give up.