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.
Doing normal, everyday things as a new amputee, is like learning any new, difficult, sometimes technical skill. From the simple, like filling up my water bottle, to the more complex, of getting in and out of the bath. Everything presents a challenge, and because I live in a 1st floor appartment, also a logistical nightmare. All of a sudden I was house bound. Dont get me wrong, It wasnt like I was out alot before the surgery, CRPS kind of prevented that but, I could go short distances on my crutches. But now, I cant go anywhere unless someone bumps my wheelchair down the stairs, and its not light! So yes, housebound!
The 1st week was absolutely fine. Dispite suffering alot of phantom pain, my mirror therapy was going really well. It was strange going from the hospital environment, to home. I went from having lots of support and people about, incase anything happened, to nothing. Just me and Cat. But we made the most of that week. We hadnt been on holdiay for 3 years because of my foot, so it was nice to have a week off pretending we were. We went out for a while every day. I tried to push myself places, which was laughable! I made it for about 3 minutes at a time. You never notice all the tiny gradients on a pavement until you use a wheelchair. The one I was given was so heavy too. Its like trying to wheel a mini with your arms (well, maybe slightly lighter than that), but you get the idea. But I did my best. Pushing a bit, then Cat would take over. We went to the Zoo. I hadnt been to a zoo since I was tiny. It was awesome. I met friends at a food festival. Come to think of it, I did more 2 weeks post op with my amputation, than I did for any of my foot surgeries. I was progressing. My pain was slowly easing too.
The 1st thing I wanted to do when I came home from hospital was to have a bath. I couldnt use the one in hospital as the bathroom it was in, was reserved for a patient with an infectious condition. The bath proved to be my Everest! Cat ran the water for me. I tried to hop, and discovered that this was really dangerous. Its alot easier to hop when you have another leg to balance you. So cat had to help me to the bath. Our bathroom isnt very big, so you cant fit me and the chair in it. Then it came to getting into the bath. Cat had to help we with this too. There was no way for flinging myself around our skinny edged bath without her. I tried, and she had to catch me when i wobbled (its a good job we have a strong relationship, with no secrets!). She helped me lower in the water. The 1st thing I noticed is that stumpey floats! Really strange, but it does. I lay down in the water, and when I went to sit up, ended up flailing about like a fish out of water! I could wash most of my main bits, but when it came to my nether yeya, another challenge arrived. You see, im not sure how all of you wash this bit, but for me I was used to standing up (probably too much info!). Standing on one leg, in the bath, is definately a safety no, no. So Cat had to help me here too (I wont go into detail!). Then getting out, was more tricky than getting in. Basically the same procedure as getting in, except that I was wet! So then, Cat was too (diddnt plan for that one). On the floor it was for me, to dry, which was so cold. All in all, my bath would usually be about 10 minutes, well all this took about 45! I think now, 8 weeks on, ive gotten it down to 40! So not a huge improvement. But I always need my wife there for help and safety. So just the bathing process added alot of time to our ‘everyday processes’. For that matter, everything seems to take forever!
So, at this point I was feeling pretty pleased with myself. I was wheeling about the hospital. I had taken my catheter out. I was off the pumps of morphine. I had to have my dressing taken off because I had blisters around my wound. But other than that, all was great. I made a lovely friend too. She helped me through some of my toughest days. When Cat (my wife of 11 years) came in to see me, which was every day, we all used to sit and talk. She made me laugh so much. Who would have thaught id make such good friends with a 75 year old?
So after being in hospital for 12 days, the Doctors decided that I was doing so well, and I could go home. This was the best news ever, so why did I keep on bursting into tears? Was it that I would miss my friend? Maybe I was scared of going home as Id been safe and looked after so well in hospital? Was it hormones? ( although it couldn’t be as that ship had saled last week!). Well, it turns out that It was none of those things.
Before I was aloud to go home, we had to get on top of the phantom pain that I was getting. It was pretty much constant. A very unpleasant mix of electric shocks and intense pain. So I was started on mirror therapy. It was the strangest feeling. I was sat with a mirror between my legs. Looking at a leg that was no longer there, and it flet like my leg was growing back! Like id had really bad pins and needles, and the blood was finally rushing to my foot. But it couldnt be! I no longer had a foot! I then did some exercises, which was also very strange, and then had to look at my foot relaxed again, and this time it felt like the blood was running out of my foot and it was going numb again. What an amazing organ our brain is!
I was aloud home on the Sunday. 13 days spent in hospital, and 9 days post op. All the while I kept on crying at nothing. It was so great to be home. To see my two little boys, Winkeypoo and Jelly bean. Dont worry, they are my cats, im not a complete odd ball!! They are kind of like replacement children though. ( I wont bore you to death with tales of my cats, as most devoted fur mummies will tell you, we can go on for days!).
So I was home. I was really happy to be home. To eat some nice food. Not that the hospital food wasnt nice, because it was. Its just that as someone who is allergic to gluten, the menu had the same stuff on it every day. So unless you stay for 4 days or less, you get rather bored.
That evening, I kept on crying on and off. My poor wife must have thaught that I diddnt want to be at home. When this was definately not it. I love being home. I was in alot of pain.
The next day we went back to the hospital to visit my friend. She was waiting for a care package, so was really fed up with waiting. She was ready for home over a week ago. It was grear to see her, and a few other ladies who I had made friends with. From there we went out for lunch and then spent a nice evening watching movies. It was then that it happened….
I had a day dream. I was in a dark room, and in front of me was an old furnis. The door was open, and I could see the hot coals and fire bellowing. On the right hand side there was a large yellow bag, lined with a thick brown paper bag. I walked over to it and inside was my leg and foot. I stared at it for a minute and noticed that my toes were crying. It then spoke and asked me why Id done this. Why did I get rid of it?
Well, following this, I cried more than ever, and then It hit me. I was grieving for my leg. I was told that it could happen, but thaught it was kind of silly, and wouldnt happen to me (a sentance which you would think Id learnt to never use by now!). But here we were. Me sobbing like crazy, with Cat trying her best to console me. It took a while, but I finally came around.
The next day I felt so much better. I was not crying anymore. Cat had taken the week off work, so we were getting out and about. It was here that I started to realise all the things that my prosthetic councellor had told me about. All the things which she said I would find hard, and all the difficulties I would have. But I was home, and now I couldnt stop smiling.
As you can tell, I finally got a new date. I was to go into hospital on the 01st of April 2019. Typical, I thaught. April fools day. Says it all really! The couple of months leading up to this date were really hard. Things took a steady decline, and I was in more pain than I could handle. So when the date finally came, it was such a relief. The plan was to go in to hospital on the 01st and have my amputation on the 04th. My surgeon wanted to get me in early so that they could get my pain under control before the surgery.
So I sat in hospital and waited, and waited, and waited, then got dressed for my block in my leg that was going to relieve my pain, but this was cancelled. So I waited some more, and before I knew it, it was the night before my amputation, and still no block. Well this was a bit disappointing. My surgeon was equally dissapointed. The pain doctor diddnt book me in for the block, like she was supposed to, so I had to be put on the emergency list. But there was always bigger emergencies than my block (which I understood).
The night before surgery was absolutely fine. I thought that I wouldnt sleep. But I had my usual amount of a few hours around pain killers. I was 1st on the list, so my wife came to the hospital first thing. We sat and waited, and waited, and waited, and then all of a sudden a friend arrived who I used to work with in theatre. She had come to take me. It was so strange. Almost all of the staff were ones who I used to work with. From the lady who collected me, the scrub nurse, my surgeon, and my anaesthetist. I was in the anaesthetic room for a while. I was really nervous about the block, but it was fine. I diddnt feel much at all. Once that was done I dont remember much. Normally I remembered the bit just before I went to sleep, but this time I diddnt. I remember waking up though.
I woke up in recovery in what I can describe as absolute agony, but with itchy toes too! (Strange considering they were no longer there). The block had worked on half of my leg, but not the other half. I was told this may happen. (I should know by now, that if there is a complication, I will probably get it!). The recovery nurse was also one of my old nursing friends. She was great. The anaesthetist came strate away and put up a morphine pump. This helped a bit, but not much. It made me sleepy. But id been living on a high dose of morphine for years leading up to this, so it was not very effective. I spent what felt like, forever in more pain than I thought possable. The doctors and anaesthetist coming in and out of my bed space. They eventually took me back to the anaesthetic room, and did another block. But this still diddnt help. I was still in alot of pain. My wife took a picture of me when I was quite bad. (As you can see below. Not my best look!). That night was just awful. Doctors were coming in as my blood pressure was really low and my heart rate high. This was mainly because of the pain and morphine. Alot of that day was spent in pain. I eventually saw a lovely anaesthetist who decided to do an epidural.
Before the surgery I was given the option of a block or epidural. I opted for a block as I felt that the risks of epidural were too high for me, with the fact that I seemed to get complications with every surgery. But after spending over 24 hours in writhing agony, I quickly changed my mind. I just wanted the pain to go. So back to the anaesthetic room I went.
I felt the pain ease after a few minutes. I was so much happier. I still had pain, but not as much. So, this is how I spent the next 5 days. Which is the maximum amount of time that an epidural can stay in. The doctors had to keep topping up the epidural as I was still in alot of pain. But it was gradually easing. Then the day arrived for my epidural to come out. I was warned that one of the side effects was something called an epidural headaiche. I diddnt think much of it at the time, but of course, in true Lexi fashion, 12 hours after the epidural was removed my head was killing. It was unbearable. Id had migranes before, but this was far worse. I kept vomiting every time I moved. No pain medication helped. So again, I was a conundrum. Nurses and doctors kept trying their best to help, but nothing did. It did takethe focus off my leg though.
So I spent over 24 house writhing in agony, again! Then eventually a nurse put up IV paracetamol, and I was given an anti sickness injection, and The pain went. We will never know if it was this combination, or it was just time for it to end, but end it did. Oh my goodness, I was so happy. The next morning, the physio came and got me out of bed and I wheeled myself in the wheelchair they had given me, to the cafe amd back. I thaught Id go for a coffee. But then disabled life showed me my 1st limitation. I couldnt reach the bloomin cups! So I settled for a 7up. The sense of achievement was just amazing. I was mobile again, and really happy.
So I had made up my mind. I wanted my leg gone! (Well, a bit of it anyway. The bit below the knee, with the foot on!). I joined as many amputee facebook groups as I could. Managed to speak to alot of really helpful people who had suffered the same fate as me. I found quite alot of elective amputees too, which gave me alot of hope for the future, as the vast majority of them where living a normal life now. I spoke to my friends, who were really supportive. My wife was amazing. I asked what she thaught, and if she would have a problem with it. She simply said “why would I have a problem? You will be my bionic wife”. I am very lucky to have such an amazing wife, and friends.
I told work. I diddnt really hear much. A meeting before with HR to see if there was anything they could do to help, and ask how long I may be off!. Then the rumour mill started. I think the funniest one was, and I quote “I bet she’s having an her leg amputated just to get more time off work”. I had alot of these kind of remarks from a couple of people at my work place. Not exactly helpful. But I find that ignoring sillu people to be the best thing!.
I started with a long email to my Orthopaedic surgeon. He was fantastic. He said immediately that there was nothing else that he could do, and that he thaught it was a good option for me. He put me in contact with one of the vascular surgeons. Luckily it was one of the doctors which I used to work with in my operating theatre days. He is absolutely fantastic and his work amazing. The day I saw him was the best day ever. It was August 2018. He said he was happy to do the operation. We had a date in mind. November, before my birthday. But there was alot of work to do first. I had to see the pain doctor again to see if we had exhausted all avenues. That was an interesting appointment. She agreed that there was nothing else which could be done for me, other than maybe trialing a nerve stimulator. Now, Id read all about these, and read about the likelihood of them being curative for crps. The answer was no. At best, if nothing went wrong, and put me permenantly into a wheelchair, I may reduce my pain be around 30%. Well, that was not enough for me. I would still be just as incapacitated as I was before, just with a little less pain. I declined this option. I feel that with my pensaty towards complications, that I was best off not doing it as there was no chance of a cure. Whereas amputation could cure me. The Doctor was quite persuasive. She said “you should try the nerve stimulator instead of resulting to self mutilation”. What a strange way of putting things, I thaught. I know amputation is extreme, but so is my pain! I never thaught of it as self mutilation. Bad choice of words maybe? On her part!.
So after seeing the pain doc, I had various appointments with a prosthetist and prosthetic councellor. They were both lovely. Really put me at ease and helped with all of my questions. Once they agreed that I was ready for the surgery I was booked in. The date was set for February 2019.
On the lead up to my op we had a farewell party to my left leg. It was amazing. My best friends were there. Kate and Dave, and Ruth and Roger. We went to Starz bar in Exeter. They put one legged banners up. Ruth made me the best gluten free carrot cake leg. Just brilliant. Then they all dressed up as pirates. It was so lovely. The perfect way to say goodbuy to something that had been with me for 40 years.
The day of my admission came round quickly. I had pepared my appartment, and myself as mucb as I could. We arrived at the hospital at 10am. We got directed to a chair to sit on. Then there we stayed for 3 hours before being told that there was a bed crisis and my surgery had to be cancelled, and would be rebooked for April!. Well, gutted doesnt even begin to explain how I felt at this point. The pain in my foot had gotten so bad by now, that I couldnt sleep for more than a couple of hours at a time. I couldnt have my leg dangling down because it felt like it was swelling, and ready to pop, which was incredably painful. So I would spend most of my day laying on my sofa with my foot up on around 6 pillows. The higher it was, the more pressure relief. Sometimes I would just lay and try not to drink much all day, so I diddnt have to get up and use the toilet, because the pain was so bad when I did. So when I was told it was going to be cancelled was the worst news id ever had.