Part 1 dealt with mentally preparing for amputation. This part I am thinking of the physical side ....
Part 2 - Physically
If the operation is planned, and if you are able to, I think it's a good idea to look around your home first and work out how you can cope with little or no mobility. Think along the lines of "If I was on the floor, or a couple of feet off the ground, how would I do this ?"
Can you go to the toilet, wash, make meals, get into bed ? At some point you should be able to get a physio to assess your home and offer you advice on adaptations to do all this. This could be when you are "medically ready for discharge"
Longer term you need to think about stairs, driving and other things people take for granted.
When you check into hospital, make sure your bedspace works for you. You are going to be in bed for at least a couple of days after the op, so it helps to have everything nearby, and keep an eye out for people moving things around and out of reach !. I found a pair of grabbers great for reaching for stuff without having to ask for help.
Here's a list of things I find useful at home as a double BK amputee :-
Handrails at external doors or steps
Frame around toilet (help you push yourself up from toilet)
Adapted bathroom (seat in shower, handrails, low basin)
Bathroom seat (also useful for in the kitchen as they can be cleaned and are quite tall)
Bed frame handle (to help you move around in bed, get in and out of bed safely)
Urinal or bucket in bedroom (for night time emergencies !)
Recliner chair, or footstool
Adapted car (can't drive without feet !)
Walking stick (essential for uneven pavements)
Crutches (backup for a bad leg day)
Wheelchair (backup for a very bad leg day). Note - I think these should be provided for you.
Flexifoot (better ferrule for walking stick or crutches)
Velcro or slip-on shoes
Tegaderm (flexible dressing, great for blisters)
Panic button (lifeline for calling for help if you fall)
Radar key (for when out and about, these keys unlock disabled toilets)
DISCLAIMER - these are just things I use, speak to a physio for guidance
Sepsis is very dangerous because the symptoms can so easily be mistaken for something else. Initially you feel like it's a bad cold, headache, stomach pains. You could easily go back to bed with some paracetamol, and I have heard cases of this happening with very bad outcomes.
The flip side is that you can easily think you have it, but you don't. So you can't scare people into thinking they are severely ill, when it may just be a cold of flu. I have had at least a couple of times since I was ill, where I thought it was happening to me again. I spoke to someone a few days ago who has listened to several of my talks, and she admitted to panicking when she was not well.
Add to this the fact that it's key to get antibiotics into your system as quickly as possible. I was very lucky - I was ill enough that the symptoms were spotted straight away and I was given antibiotics within an hour. If I was less ill then this may have been missed. If I was more ill then I may not be writing this.
That's why Sepsis is so dangerous. It's my mission to help spread awareness. If everyone is aware then it may help save some more people.
Here's some more info from an article in the BBC News :-
Over the last few months I have been invited to attend meetings at a local university, to provide feedback as an ex-patient (service user) into nursing training courses.
It’s a very positive thing that service users are being asked about their experience as a patient, what they would change if they could, and thoughts on what and how students are taught.
I am honoured to be a part of this, to feel that others may benefit either in their careers or by being looked after by someone who has been trained through this process.
I hope that this isn’t just a local thing, and that other universities are doing the same thing.
Returning to work was a major target for me for each of the 3 times I was off sick long term from work.
Being at home long term sick may at first feel a little bit like a holiday, except for the pain ! However after a few days I would feel like I was worthless and not contributing anything to life. I would watch people out of my windows getting on with life. It occurred to me that the world still continues, even though I am stuck inside.
Unfortunately for me, I was off sick because one of my problems was lack of mobility. So I wasn't even able to go out for a walk ! I also couldn't drive because I was on extremely high doses of painkillers.
So the advice I would offer to others is that returning to work is a good thing. It means you are on your way to getting better. You will be around people you know, and it will make you feel worthwhile and normal again.
I’m writing this at 3:20 am. I was sleeping fine, then my leg started hurting. That was about an hour ago, now I need to sleep ! I’m trying to distract myself to make it stop.
To describe it …firstly imagine hiccups. Just when you think they’ve stopped, they’re back. You don’t know when the next one is coming. You’ve tried a few things, you just start to go to sleep, then they’re back.
Now onto the pain itself. There’s a bit of an achy cramp, but there is also someone jabbing a pin into the centre of my leg. Not on the surface, where you could rub it, but deep down inside.
When it happens I jump, or squirm in the bed. It’s pretty high on the ‘out of ten’ score. But then it goes. It’s not like a normal pain where you get a dull pain for a long time after. That’s when you think it’s gone, but then it comes back again.
The medical thinking is that the pains are caused by the brain trying to communicate with the missing limb. In this case, the missing limb has been gone for 3 1/2 years, so they haven’t talked to each other for a while.
I can take painkillers, but I’ll have trouble waking up in the morning. Just going to try to sleep again ….
This post is aimed towards anyone who is going to have to lose a limb. There is quite a lot to write about on this subject, so I might revisit later. For now I am splitting into 2 posts - Mentally and physically.
When you buy a new gadget, you can go on Amazon and get an "idiots guide to...". I almost wish there was something like this around, as I found when I had my operations there was very little advice available at the time.
Part 1 - Mentally
Firstly, as I have said before, this is NOT the end of the world. Although it will most probably feel like it, and there will be a lot of things going through your mind before and after. No matter how much you prepare there will be something that comes up.
I have had a few near death experiences in this journey. I am not sure if it's because of this, or because I am not as able as some people, but I find that now I need to live a fuller life. I find that if I don't fill my spare time and achieve something, then I feel that I have wasted the gift of life for that day. Maybe this will fade over time.
You are going to have a grieving process. I found it helpful to say goodbye to my legs. I patted them, said goodbye, and took a photo ! Even now I have been told I haven't grieved fully... hmmm...
You find out who your friends are - I have an amazing group of friends who have been there for me and helped me emotionally and physically, as well as family. (Thank you to all my friends and family who read this)
It really helps to talk. I find I can't tell people close to me everything, as I worry about upsetting them. So I have been lucky in finding a good councillor. That is very important.
You are going to be on medication for at least a little while. This could be for phantom pains (Yes they do exist !), or other things. These are going to make you feel miserable, perhaps high, perhaps unwell. But they are for a reason.
There will be a list of things you can't do any more, but there will be more possibilities to do things that will challenge you and make you happy. I am not sure if it's best to lose a limb when you are young and can adapt better, or when you are older and have had a chance to live with a limb first. Personally I think I am about the right age.
If you lost a limb to make you physically better, then it will help to focus on this. I lost one to save my life, and the other because the situation of keeping it was making my quality of life deteriorate. So I know I lost them for a good reason.
Ask to meet other amputees. That can be difficult to arrange, but useful to see how they are coping. I was already going to the rehab centre for one leg, so I was already meeting other amputees when I was about to lose my second leg. Seeing a double amputee walk well really helped me to make that final decision.
I have a pair of ‘sympathy shorts’…..
Firstly, walking in shorts is much easier for me than walking in trousers. Trousers tend to rub and pull at the knee on my legs, so I have to put a little bit of extra effort in walking.
Trousers also have the additional weight of the trouser leg, so that’s a little more effort saved. Jeans are actually quite heavy to walk in.
Shorts are a fraction bit cooler. Most of my legs are covered by socks and the liners. So they are normally quite warm, any extra cooling is great.
The other physical difference is that shorts allow easier access to my prosthetics. I can adjust, or have a scratch, without having to pull my trousers down, which is not easy to get away with in public.
Next reason for the shorts is the ‘sympathy’ aspect. I’m lucky in that I seem to be walking pretty well. A lot of people don’t notice I am missing legs.
So if I’m wearing trousers I am treated like everyone else, which sometimes is a problem if I need a little help.
Even with shorts on a fair amount of people don’t look down. But for those that do, they move out of my way. I also get doors opened, seats on a train etc.
Inside every prosthetic is a sock waiting to get out.......
Or in my case ... lots of them for both of my legs, which you can see here drying out on the radiator. The pink ones are just for fun as I was taking this photo for another project I am working on,
After an amputation the end of the residual limb (stump) is VERY swollen. Muscle is used to wrap around the remaining bone to cushion it, so post-op this is a bit angry. Over many months the swelling, then the muscle shrinks down. The end result is that the residual limb (stump) shrinks.
When it comes to a rigid prosthetic fitting over the top of this, this means that it is going to get loose. Also on hot days, or with exercise, your stump will get a little bit bigger and sweatier. On cold days it will get a little smaller. So basically you are playing a juggling game between your stump getting naturally smaller, the temperature of your body, and how tight the prosthetic is. At the start of the day all can be fine, but later you are flopping around or feeling a bit too snug.
If the fit is too lose you can bang your bone into the bottom of the prosthetic, which can be very painful !
The prosthetic can be recast to make it smaller or bigger, but then you are stuck with the size you have until the next cast.
So what can you do ?..... The answer is socks.
The socks are similar to sports socks, except they don't have a heel or an angle between the ankle and foot. So they are basically a tube with a round end.
They come in "thick" or "thin". "Thick" is your sports sock / flannel thickness. "Thin" is like a day to day foot sock, I think 2 "thins" = 1 "thick". So you basically layer these all up until you feel comfy.
Things can get a little complicated if your limb is thicker at one end than the other. So for this you can have "half and half" socks. Where one half is "thick" and the other half is "thin"
Socks can be so much fun... !
I was lucky in that I made the final decision to lose my legs. For me it would have been worse to wake up and find them gone, but I understand sometimes that has to happen to save someone’s life.
That’s the important thing, life comes first. Losing a limb is not the end of the world. In my case I think it opens up new possibilities.
Next after life comes quality of life.
When everyone was trying to save my leg, life was difficult. I coped, but I didn’t realise how difficult and painful it was, until now when I look back on it. I could only walk a short distance, in pain. I was putting on a lot of weight due to low mobility. This brought my mood down and I realised this can’t go on.
Medical staff are amazing. They do everything they can. I was waiting for someone to tell me it had to go. But no one else can help you make that decision. Unless your life is at risk. So I began thinking that the surgeries would just go on and on, and maybe even then I would have to lose the leg.
I spoke to friends and family. They were all supportive but no one could tell me what to do. I understand that. If they said to do it, and it went wrong, then they would feel responsible.
I like lists. I drew up a ‘for’ and ‘against’ list for losing my leg. ‘For’ won. In a way it was a relief when I made the decision. A little bit of me was still unsure, the rest was planning life after.
In the end there was a delay. I was admitted into the surgery waiting area. I was number 2 on the list. Unfortunately number 1 overran and turned into an emergency so I had to go home. First thing on my mind was that I had to go back to work again the next day !!
It was only a month before I was back again and operated on. But in that month I was able to celebrate my birthday and realise 100% I was ready.
So my advice to anyone else. Speak to those that support you. Draw up a list. Think what it’s going to mean for your life if you do and if you don’t.