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.
1) Get comfortable.
2) Go somewhere quiet, where you wont be disturbed.
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?
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?
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.
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.
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.
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!
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!
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!!!
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.
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.
This is my new logo for the event. I have made some clothes trying to get things out there a bit. I have a hoodie, baseball cap, T shirt, vest, and a long sleeve T shirt. All with my logo on. Cat also has a hoodie. Theyre all awaiting sponsorship logos. I still havnt got any definate sponsors as yet. I am sending emails out all of the time. I will persevere and perhapse change the email. I was sent a T shirt and hoodie from Saltrock which will come in handy post training. Sunwise are also sending me a pair of sunglasses. All of these things are absolutely wonderful, but none of them are getting me closer to my goal. I need to get my event out there. I have been speaking to the British Legion about my wheelchair, and they said they would help me. Im just awaiting a home visit at the moment. Ive just joined BLESMA too. Which is for veteran amputees. They have also been really helpful so far, and will be sending someone out to help. So I have made some progress. Now keep all fingers and toes crossed for the new chair. I only have 15 to cross now, so I need help with the others.
I had a really nice suprise last week. Steel bones had put a feature on their facebook page and web page about me, and what Im doing. I thaught that was lovely. So things are getting out there more and more. But not enough yet. I despirately need some sponsors. But I think that everything is a learning curve, and what doesnt work the 1st time, may need to be changed and adjusted. I will not give up.
This has been steady. The Gym sessions are going great. Getting some good strength and endurance. Were trying things that weve never done before, which is so much fun. The wheeling or pushing, some people call is, is going well in some ways. But I really just need the chair. The NHS finally came up with my replacement. I was really hopeful. I thaught that it must be a little better than the one I had. It futs better, in that the width of the seat is smaller, and so it fits, but that is it. The extent of the improvements stop there. It isnt lighter, even though its made up of half plastic! The seat is too short. The wheel I use for self propulsion is really difficult to grab and I cant use it without gloves. My padded gloves dont stick at all, like they used to with the other one. I could go on, and on. Safe to say, it is a huge disapointment. I went out today for my 1st training session and it was disasterous. Really slow. The wheels seem to love to go towards every gradient. It doesnt free wheel at all, even downhill! It does have anti tipping, which is amazing. I actually think that the red one was better for training, and thats saying something! But as always. I will keep trying. Keep plodding on. Theres always a plus side to everything. Maybe this is supposes to be this way. Give me some good strenth before I get my real chair. I hope so anyway.
As my journey into the life of an amputee is progressing. Im finding that there are alot of challenges, but also alot of things that you can do as well. I went to Exeter Arena for a trial on the sport wheelchairs. It was absolutely incredable. Actually alot harder than the pros make it look. But amazing. I had a one to one coach for the hour from southwest athletics academy, who taught me how to wheel, and turn. The gloves were the funniest. You need help to get into them. Theres a hole for your thumb and 2 for 2 fingers, and another 2 for the other 2. Then your fingers get taped shut into a sort of fist, and you punch the wheel to make it move! Its really tricky to get the right movement. But a couple of times it went really well and I felt like I was flying. It was amazing. Id love to do more of this. Especially when my challenge is completed. Maybe look at sprinting? If any of you get the chance to give it a go, I would thoroughly recommend it. Just so much fun.
By the time id gotten to my training session on Sunday, my body was rather exhausted. So far this week its been to the gym 4 times, wheeled around the track and wheeled in the heavy brick for 5 miles! So sunday was a hoot!! Very slow. Very tiring. But still good. Everything hurt. Which I see as a kind of test. If I can keep going through the pain now, then It will prepare me for the pain during the event. Get used to it now, so it will be better then.
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.