It’s been a while!!

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 can not see me!!

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.

The end of Phantoms👏

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.

Excuse me, would you like a push?

I thaught id tell you all about something odd which happened to me the other day. I have been previously warned before that things like this could happen, and honestly diddnt believe it. Until now that is!

Cat and I went to the International air show at Yeovilton. Absolutely awesome doesnt even cover it. Were both huge fans of fighter jets. I think having being baught up in the era of Topgun did it! So there we were, enjoying the day. It got rather chilly and I decided to wheel myself through the crowds to see if I could find some trousers to purchase, rather than continuing to freeze in shorts. So lesson number 1 for that day is always take a spare pair of trousers when out for the day, and the weather is unpredictable.

So there I was, weaving myself through the tightly packed picnic blankets and foldable chairs, when all of sudden I started to wheel a bit faster, which was soon followed by a man saying ‘do you want a push’! I said ‘no thankyou’, regained control of MY chair, and was hoping to be on my merry way. Then he proceeded to ask me questions. The easiest was to explain this is to put it into conversation format.

Man: How did you loose your leg, was it an IED?

Me: No

Man: What was it?

Me: A chronic pain condition called CRPS.

He then proceeded to ask me what that was and I explained it. Then followed…

Man: how are you coping?

Me: fine, it is what it is!

Man: Do you have a fake leg?

Me: yes.

Man: why dont you wear it then?

Me (getting a little annoyed!), because the CRPS is back in my stump and its too painful to wear a leg for more than a few minutes!

Man: oh i see, but it must be awful for someone so young, are you on anti depressants?

Me: No, im fine, it is what it is.

Man: well thats brillinat, you take care.

With that he was gone! How massively random! And incredably strange. Not to mention a little insulting.

At the air show! Rocking the geek hat! 🤣

After this random event, I was left a little taken a back. Personally I wouldnt dream of asking a stranger if they were taking antidepressants. I wouldnt even ask my friends that! When he left, I got a chance to see the faces of the picnic people who surrounded me, and it was conpletely hillarious. The shocked look on their faces. Followed by the shaking of the head and mouthing of ‘omg im so sorry’! Was quite funny. I kind of just took it as it is. Another strange experiance in the world of being an amputee. Lesson number 2 for that day. Be prepared to answer random questions from random strangers about your private life! Now I know why ive been advised to make up a funny story ahead of time. Ive heard things like,’a shark bit it off’, or look mortified and just simply say ‘my leg is missing….how did that happen?’ And wheel off. I think this is my personal favourite.

I hate morphine 🤬

Its 3 days since the flop. Stumpey is extremely angry. Letting me know just how galacticly stupid I was to fall on her! (Yes stumpey is a her!). Ive seen a few ladies with ‘him’ stumpeys, but mine is definately not. I think its because shes happier when taken care of, clean shaven and pampered a little. So I have had alot of flare ups in the past 3 days. Ive had to up my morphine to its maximum and it doesnt do alot. I actually just found out that morphine doesnt help with a CRPS flare up anyway! Aparently one of the only things which helps is Ketamine, and Im not going down that road. I think that my fall has triggered the crappy pain syndrome into action! The anoying part about morphine when you are no longer used to a high dose, is that it makes you sleepy, forgetful, dopey and uncoordinated. Now, if you ask my wife, im these things all of the time anyway 🤭🤣, so any exacerbation is just plain silly! So for the past 3 days ive hardly done anything. I couldnt do my wheel on sunday as I was in too much pain. I did manage to go to the gym yesterday, but that was after sleeping half the day on the sofa. A bit like today. Oh yes, we have joined a new gym and its fantastic. Loads of kit, and a lift between the 2 floors. Experianced another new disabled part of life too. I never need an induction to a gym as im a very qualified instructor, but at this gym I had to have a disabled induction. Not to show me the kit, but to give me a seperate code for the disabled door, and show my the other disabled bits!! I thaught it was good, if not somewhat anoying. Cat could train from the minute we signed up, but I had to wait for this induction, and when the gym your currently using has no air conditioning during the hottest point in the year, you really dont want delays! But now we are in. We love it.

Stumpeys bruise is coming out more!

Things are looking up in other ways. The carpet is finally being put down in the hallway, which means no more bottom chafage for me! I also had a visit from the British Legion today to see if they can help me with my wheelchair. I am keeping everything crossed. The one im using at the moment is jusr rediculous. Its again, not set for active people that want to self propell. Ive currently got 2 sprained hands, 2 sprained wrists and 1 sprained shoulder. I hope this means that Im getting the injuries out of the way early. It will be like all my Birthdays and Christmasses rolled into one when I finally get that chair. Im finding it a little difficult to comprehend at the moment, that I may have to give up on my dream of walking, and running again. But, im not going to stop trying. Where theres a will, theres a way!

They told me not to use crutches!

Yesterday was another new experiance for me, in my new world of being a below knee amputee. Not the greatest of experiances I have to say, but a definate learning curve! We had just come home from the gym after a very heavy, strength building back weights session. We had gotten changed and were on out way to do some shopping. Cat had gone to get the car as we left my chair in the boot because we were only going to be home for a short while. So all I had to do was make it the very short distance from my front door, through the hall, bum shuffle down the stairs, and then along the corrodoor downstairs to the car. A journey ive done loads of times. Everytime we go anywhere. I dont do this journey alone though. I cannot go out on my own because I only have 1 wheelchair and I cannot get that down stairs by myself. So my independance is completely in the hands of my wife, and the people that dont seem to think its important to be independant! (But thats another story!)

So I went out the door, realised id forgotten my wheeling gloves, so went back in the door, got them, and on the way back out it happened. The bottom of my left crutch just clipped the lip on the door. This was enough for me to loose balance, and before I knew it I went to put my foot down. But if course I dont have one, so instead it was stumpey that plumeted full pelt with 9 and a half stone me on the end of it, into the concrete floor! Im not normally lost for words, but I literally could not speak, or breathe for that matter. The pain was unbearable. Worse than any pain I have ever experianced. I eventually just lay on the floor kind of screaming and whimpering. I had to get back into my appartment. So I went in on my bottom. Leaving my crutches in the hallway. Cat was outside in the car. I had no way of getting to her. I ended up shuffling to the balcony door, opening it and just shouted for help. Whimpering away to muself in absolute agony. I was so terrified of taking off my shrinker and seeing what damage was done. Ive seen so many pictures of peoples wounds that have ripped open from falling, and I fell on concrete. We are supposed to have carpet back in the hall by now! Cat came running in. I managed to get myself on the sofa. She pulled off my shrinker and I was so happy to see that there was no blood. Stumpey was in tact. Thank goodness. Then, my lovely wife, trying to be helpful, did what I used to ask her to do when I had bad phantoms, grab hold of stumpey and rub, lots… So in her head, this helped when I was in pain before. It diddnt help this time! Agony all over again. Bless her. I could see that she diddnt know how to help. I couldnt stop crying and whimpering in pain. She went and got an ice pack, which still now im not sure if it helped or hindered. But in my head, it was doing something. I’d had all of my morphine. I have been used to 5mg every 4 hours lately, but on this occasion I opted for the full whack of 20mg. It diddnt do alot. I knew at this point that its probably best to get it looked at. I put a post on Amputees uk to see if others had done this, and what they did after. Well, practically everyone had done the same thing. This was really reassuring to know that im not the only person who totaly ignored all the medical professionals who said ‘dont use crutches, they are dangerous, and you will fall’! My lovely friend Liz advised me to go for an xray. So thats what we did. I shuffled all the way along the halls to get to the car. I wasnt going to use my crutches again. Evil things!

Todays bruise. Stumpey is not happy!

So off to A & E we went. It was absolutely packed. So I was completely shocked that it only took about an hour and a half for my whole experiance. I had an xray, and no breaks that they could see. Thank goodness. Im so happy about that. That would have been a nightmare. I dont want any set backs. The xray was interesting though. They were all so impressed with how amazing stumpey looks considering im only about 12 weeks post op. Have to credit Mr Cowan for that.

Well needless to say our shopping trip was off, as was the beach that we had planned to go to after. I really felt sorry for Cat. She was really looking forward to going to the beach, and again because of me, it was off. She was her usual graceful self, and told me not to worry about it, and that it wasnt my fault. But sometimes you cant help but to feel guilty. Especially as we had a conversation the night before about adjusting our 10 year holiday plan, because there are lots of places that I wont be able to go to now, if the CRPS is back, and I cant wear a leg all of the time! Im not one to ever be defeated by anything, as you may have gathered, but I think Everest basecamp in a wheelchair may be slightly difficult and out of my capabilities!

So this was my day. Laying on the sofa, popping pain meds, and with Cat trying her best to help with the pain. I think at this stage a mallet over the head would be best for her (to lop me with!). She could get some peace then instead of making me cups of tea (lol).

The moral of this day has been. Listen to your physio, Doctor, and every other amputee that has done this, and experianced the gut wrenching, agonising, vomit inducing pain, from falling on your stump, and DONT USE CRUTCHES!!!

Life is just one ‘wheely big challenge’! 🤣

Those of you who have been following my progress will know that I had my amputation in April 2019 for CRPS in my left foot. Since the surgery I have struggled with phantom pain, and overcome that. But also Ive had alot of stump pain. Yet to recieve an official diagnosis, but this pain does mimic what I felt with my CRPS. So personally, I think that this may be back in my stump. I am struggling to wear my awesome new leg for more than a few minutes at a time, and then it will be left hurting for hours. On the plus side, even if this is the outcome, im still glad I had the amputation. Why? I hear you ask? Well, its simple. I was in limbo land before. With an agonising foot. Not wanting to use a wheelchair. Disabled, but not. People dont understand what they cant see. So when you tell them your in alot of pain, unless your sobbing uncontrolably or screaming or gurning like a cabbage patch doll, then they dont think your pain is ‘that bad’. Infact I even had a friend tell me that one thing. That my pain couldnt be that bad because im never crying, or flailing about like a horizontal Michael Flatley. Well, I dont like to make a show, and if Im bad, I dont go out. I dont like fuss, or sympathy. I just want to get on in life with as little resistance and hastle as possable.

So here we are. Strong CRPS possibility. Lots of people have asked me what CRPS is, so I thaught id explain it in the best way I can.

CRPS (Chronic Regional Pain Syndrome is a poorly understood condition where a person experiances persistant, severe and debilitating pain. ‘Most cases of CRPS are triggered by an injury’ (NHS). However the bodys reaction to the injury is much stronger than usual and may affect more of the limb than the original injury did. The pain usually only affects one limb, but it can sometimes spread to other parts of the body.

Top pic is stumpey normal colour, bottom is its other colour!

Doctors sometimes make a distinction between 2 types of CRPS.

TYPE 1: Follows an injury such as fracture or sprain or surgery but with no nerve damage.

TYPE 2: Follows damage to a nerve in the limb.

I have type 1! Anyone can be afdectes by CRPS (although it seems to be more prevelant in women). It most commonly affects the hand & wrist, foot& ankle, or knee. Although sometimes the whole limb can be affected.

CAUSES? No one knows exactly what causes it, bit a fracture or other injury sometimes seems to act as a trigger. It’s thaught that the nerves of the affected limb are much more sensative than normal, and that pain pathways between the affectes limb and the brain may change so that pain continues long after the origional injury has healed. The pain and other symptoms also affect a wider area other than original injury. CRPS can occur after other problems such as a stroke or operations to a limb. In about 1 i 10 sufferers it develops without any obvious trigger factor.

So there you have it. In a nutshell, Its awful and no one know why you have it! Maybe we did something wrong in a previous life? I have to say that all other pain does seem tiny in comparison. I hope that as its early on this time, I may be able to get some help. Time will tell.