Managing your mental welfare following an amputation
A message from amputee, Darren Bishop
When Darren Bishop was left with an above-knee amputation, following a series of medical mistakes, his mental health was severely impacted. Six years on from the surgery which saw his life dramatically change, Darren has a very simple message for others in his situation, as he stresses the importance of taking your recovery at your own pace. Here, Darren explains in his own words, just how important it is to process this new reality with a professional, and to never be forced into rushing your recovery.
“Take the journey one day at a time.”
[vc_separator][vc_column width=”1/2″]In 2014 I went to A&E with severe pain in my right foot. I was recovering from a blood clot at the time, and thought it was something to do with that. The doctors examined me but said there was no sign of deep vein thrombosis, so they sent me home.
I went back and forth to my GP and the hospital several more times, until eventually they told me I’d need a below-knee amputation. I had the operation just a few days later – two weeks after I’d first visited the doctor. But the wound didn’t heal well, and not long afterwards, I had a second operation to remove the knee.
You can read my full story here.[vc_column width=”1/2″][vc_single_image image=”25547″ img_size=”full”]
Be sure to go at your own pace
My experience is that everything just happened so fast. It was only a couple of weeks from first going to the doctor to losing my leg, and when they first told me how serious it was, I was in shock. I immediately started to cry and was whisked off to surgery so they could try to get the blood flowing. But it didn’t work, and they had to amputate.
In the early days of my recovery, I really struggled. I’d feel guilty about sitting around doing nothing. And you’re so reliant on other people doing things for you, I’d feel bad for that too. I came out of hospital in the July and wasn’t fitted for my prosthetic in the November, because I had to wait for my stump to heal properly. But once the physio started, there was definitely some pressure in terms of ‘where I should be up to’ and how quickly I was progressing. The physio team really push you, and they mean well. But emotionally, I just wasn’t ready.
It meant that some days, I just didn’t want to participate. I didn’t want to wear the leg, I didn’t want to do the physio, I didn’t want to leave the house. There was a time when I started to resent going to physio because I felt like I hadn’t developed enough, and they might start pushing me too hard. But I soon realised that actually, if I wasn’t feeling good about my treatment – the journey would be even harder. So, I needed to start doing what was right for me.
“Ultimately, this is your journey – no one else’s.”
That meant taking some time to just be myself. Allowing myself time to just watch TV, sit and be by myself. Not wearing the leg, not trying to do too much. And I think allowing yourself to just do what feels right for you, and progress at your own pace is so important. Ultimately, this is your journey – no one else’s.
I also think it’s important to take small steps and tackle one thing at a time. In my mind, I felt like mastering the stairs would be a real achievement. In the early days, there’s a lot of shuffling around on your bum! But I really wanted to be able to get up and down the stairs, so I could gain some of my independence back, so I tried to focus all my energy on that.
First of all, I started shuffling up and down on my bum. Then when I was confident with that. I’d start hopping down and back up again. I’m quite physically strong so it only took me about a week or so to get used to doing that without the fear of falling. And believe me – you do feel like you’re going to fall over all the time until you retrain your balance. When I’d cracked that, I really felt like I’d achieved something.[vc_separator][vc_single_image image=”25566″ img_size=”full” add_caption=”yes”][vc_separator]
Talking to a professional does help
It’s true what they say – it is good to talk. After the surgery, I really struggled with the speed of it all. I’d sometimes look back and think ‘how did I go to the doctor with a sore foot and end up with no leg just a few weeks later?’ That was really difficult to process. So along with the pressure I’d been feeling around my physiotherapy, I decided to see a counsellor and got so much off my chest.
There are so many things to think about and consider when you’re going through something like this, so even just talking about my financial situation, how I’m feeling and how the physiotherapy was going, really helped.
I think I saw her for about a year, and I felt so much better afterwards. It even got to a point where I went to see her one day and I just looked at her and said; ‘I’ve got nothing to say to you.’ Whereas before, I’d go into that room and just wouldn’t stop talking for the whole hour. And she said; ‘Well, obviously you’re done with me.’ And I was.
It took me a year to get it all out, but it was so worthwhile.
Phantom pain is very real
Six years on, I’m still on the same pain killers as I was when I was in the hospital. A few weeks ago actually, I started to wean off them a little bit – but I had to phone an ambulance, I was in so much pain. So it’s important to keep taking your pain killers even if you’re feeling well.
I experience the pain at the end of my stump, but weirdly it’s a few inches down – below your stump. Its just this constant tingling sensation, like when your arm falls asleep or something. But there’s actually a few different types of phantom pain to be aware of; this tingling feeling and another where it just feels like someone is jabbing a needle in the bottom of your foot.
“At the start, you’re relying on everybody else to do things for you. But now, I have the freedom to get in my car and go down to the beach.”
Weirdly, I can tell exactly where the pain is in my foot – even though the foot isn’t there anymore. I get this stabbing feeling and I could tell you if it’s in my heel, my toe, the ball of my feet. It’s really strange. It’s all to do with the nerves in your stump.
But I’ve learned now that I can manage this with my pain killers. I have a patch which delivers pain relief on a regular basis, and when I change that – the pain is really bad for a day or so. But now I just take that day for myself. I don’t go out, I don’t drive, I don’t wear my leg. That’s my day off, so to speak. I’ll just sit and watch TV until my pain killers kick in again. And I don’t put pressure on myself to do anything else – I think that’s important.
Accepting the past, the planning the future
What has been difficult for me, is that everything came down to that one doctor who sent me home in the beginning. If he had just transferred me straight to hospital, my life could have been normal. I wouldn’t have had to deal with any of this. And that really is a hard pill to swallow.
I still have the odd day when this gets to me, but I have learned to move forward. I’ve learned to accept what happened and I know that there’s no point getting angry. And in all fairness – if I walked past the guy in the street tomorrow, I wouldn’t know who he was.
“Take time for yourself and don’t push yourself too hard.”
Of course, losing a limb is difficult. But after a couple of years, you do come to terms with it. Having a good support network is so important. Fletchers have been amazing. Working with a good legal team who can reassure you and help you get access to all the resources you need, can really help to keep you going.
For me, I lost my dominant leg, so that meant I couldn’t drive for a while. In fact, I didn’t drive for five years. But when my settlement landed, I was able to finally get a car with the right adaptations and I have more independence now. Before the surgery, I went fishing a lot too. I really enjoyed that. And now that I have a car where I can carry all my fishing gear, I feel like I can do that again in the future.
At the start, you’re relying on everybody else to do things for you. But now, I’m more mobile. And I have the freedom to just get in my car and go down to the beach if I want to. I don’t even need to get out of the car – just having the option to travel independently is a huge relief.
Darren’s advice for new amputees
- Consider what adaptations you need in your home. You’ll definitely need a ramp and grab handles; and your doorways will probably need widening to allow for wheelchair access. Think about your level of mobility though and consider what other adaptations you might need – wet-rooms are a godsend!
- Take it one day at a time. This is your journey, and only you understand how you feel about each stage of the journey. Take time for yourself and don’t push yourself too hard.
- Talk to a professional. There are so many things to think about and it can be overwhelming to get your head around. I spoke to a counsellor for a year and it really helped.
How to spot acute limb ischaemia
Darren describes the affected foot as being a ‘purple blotchy’ colour and extremely cold to the touch – like it had been sitting in a freezer. The ambulance team were also unable to find a pulse in his foot, which is a classic sign of the condition. Here, we describe the 6 P’s of acute limb ischaemia, and how to spot them.