1) NIGHT TIME TOILETING – Have a plan!
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.
Lexi's journey through life as an elective amputee for CRPS. 