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
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 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.