Living with limb loss

Transcription

1 Living with limb loss The early stages The Leeds Teaching Hospitals NHS Trust n

2 This leaflet has been written collaboratively by people who have undergone amputations and who attend Seacroft Hospital for their prosthetic care, and Dr Rob Whittaker, Clinical Psychologist for Prosthetic Rehabilitation. Who are we? We range in age from our 30s to our 60s. Some of us are Yorkshire born and bred - some from much further afield. We are all many different things - parents, grandparents, husbands, wives, partners, carers, public sector workers, private sector workers, sports enthusiasts, gardeners, even TV stars (!) One thing we have in common is that we all attend Seacroft Specialist Rehabilitation Service for prosthetic care. We are living with limb loss for a number of different reasons. Some of us have lost limbs in adulthood as a result of motorbike accidents, some as a result of medical problems such as cancer, anyeurism, deep vein thrombosis, chronic pain, and complications arising from surgical procedures. Some of us have lost our limbs in the last year; others several decades ago. One of us lost a limb at the age of eight as a result of problems arising from spina bifida and club foot. Some of us have below-knee amputations, some above knee. One of us has amputations to both legs and hands. 2

3 Food for thought As fellow amputees we will have trodden paths that will be both similar and different to your own. We offer you our stories for your reflection - we do not intend them to be taken as an indication of what is normal, or as authoritative advice about what you should do. We have shared our experiences with the intention of helping others - hopefully helping them feel less alone in their struggles with the hardships of limbloss - as well as sharing experiences of what has helped us along the way. We hope that reading this document will be a positive experience for you and wish you well. Experiences of the amputation Some of us were aware beforehand of the decision to amputate; some of us were not. Some of us had time to think about it and talk about it beforehand. For some of us this was a huge shock: the word amputate seemed to echo in my head for ages. I felt as if I had left my body and the consultant wasn t speaking to me. My husband sat behind the curtain and all I wanted him to do was put his arm round me and tell me that I was dreaming. But I wasn t. For three weeks I was in a daze and I struggled to get my head around the situation On the day of the operation it still hadn t really sunk in what was happening to me. It was all very clearly explained to me but I still thought they weren t talking about me. There were plenty of tears as I made light of the situation but I was still hoping it wasn t true.

4 For some of us it was not so much of a shock: after a week in there the consultant more or less said what I was beginning to suspect anyway, that this wasn t working and it got to the point where my life was under threat because of all the toxins that were building up and if they didn t do something then I would be in a real mess, so it was agreed that they would amputate and I guess at that point it hit home. Prior to that, it was always in the back of my mind. By this stage the leg was in such a mess so they took the decision that they had to perform the amputation. I think at that point I was ready to accept it and I didn t stress about it unduly I could see on the X-ray of my knee that it was smashed and there was a flesh infection and a bone infection. It wasn t very nice. It didn t smell very nice. I had had 12 months of bloody agony. The amputation was the 24th operation I had had in twelve months. I knew it wasn t going to get any better. When I saw the specialist it wasn t a shock when he told me. 4 As kids we said goodbye to my leg before the operation: Bye, bye you know. won t see you again kind of thing. Us kids who were in and out of hospital so much had developed a bit of a sense of humour. I don t recall it as being awfully traumatic. It didn t feel like a death, you know. Oh My God, this foot s gone! It meant I would be able to do many more things once I d got my bendy leg

5 For some of us the shock was more difficult for our loved ones: My wife found it very, very difficult to cope with and that was probably the low point. I was ready to accept it, but it was really difficult for my wife It was an extreme shock when I came back and told my parents. It was a shock to them My husband and I just drifted through it all. Not saying much about it seemed a way of not upsetting each other For some of us the first we knew of the amputation was when we came round after the operation: The hardest part was waking up and looking down and seeing your leg isn t there the only thing that was weird was when I sat up. The leg hadn t bent for 12 months and when I sat up and just, you know, sat up on the bed and put my legs down. The phantom leg was down there which was somewhere it had never been for 12 months and that was weird. 5

6 (Seeing it) that first time it was literally a jolt. It was an electric shock, because you knew it was gonna happen but it was only when you saw a stump there that you realised For others though, the fact we had survived against the odds was the important thing. For one of us there were ongoing difficulties that overshadowed the realisation that the leg had gone: I was in ICU and couldn t move but I knew my leg wasn t there. Being on ICU was hard - I went a bit daft, seeing things that weren t there like rats or my husband on a platter surrounded by fruit like a suckling pig.* Other patients kept dying and I would see how hard it was for their parents. But my family would come in and sing to me and talk to me. I already knew my leg was gone - it wasn t a shock *Hallucinations while in ICU are very common. ICU syndrome is a recognised condition, caused by a combination of exhaustion, powerful drugs such as sedatives, and the partial awareness that the patient has of what they are going through. While these hallucinations can be very vivid, and often upsetting, they are not a sign that patients are experiencing mental illness and they do not generally occur again after the patient leaves ICU. 6

7 Being in hospital For some of us our stay in hospital was brief and uncomplicated; for others it was long and arduous. At points for most of us it was a very emotional time: The occupational therapist came round to organise with my husband what equipment I would need for when I got home. Grab rails, perching stool and walking frames were ordered for me. Then came the day they organised a wheelchair for me. It was brought to my bed and I immediately broke down and cried. I couldn t bear the thought of having to use a wheelchair. I was told it was good to cry but it still didn t change anything. Back when I had my amputation they didn t allow parents to stay with their children in hospital. So apparently I used to refuse to have anything to do with the parents when they did come to visit, turned way from them. Who are these horrible people who have left me here? Visitors were generally really important though - helping us feel supported, helping us along with their humour and their hopes for our recovery: After the operation I was on the high dependency unit for a few days. I know it was probably the drugs but my thoughts were that it wasn t as bad as I had expected it to be! I had no pain at all. 7

8 our two grown up daughters were absolutely brilliant: I had had the operation in the morning and they came mid afternoon and had got a toy parrot and they put it on my shoulder and said we are trying to get you a part in pantomime and the whole ward was in uproar and I laughed Laughing was part of our coping mechanism, you know, laughing and getting on with it. Our eldest grandson was saying there are swimming legs and this legs and that legs, you know, and he says swimming legs? what do they do? put a propeller on? - that helped enormously. Friends too played a big part because motorbikes are my absolute passion and it really hit me hard to think that I might not ride a bike again but friends from the bike club that I belong to came to visit and they were sorting out adaptations on the bike before I could even get out of bed! I began talking to my psychologist weekly and I enjoyed talking to her. It was good to be able to talk freely about how I was feeling without upsetting any of my family 8

9 Going home from hospital Being discharged from hospital was a time of mixed feelings - often an enormous sense of enormous relief was tempered by some worries about the next stage. For some of us this was when we first felt how much life was going to have changed. For some this was when the emotional impact of what had happened really hit home. I had been in hospital three months. I was desperate to get out of hospital but I didn t want to meet the real world. I felt detached - as though I d stopped and the world was going on around me. I felt my spark had gone - I was no longer me It s like being institutionalised because I was in for 8 weeks and you feel cocooned. I was very anxious about coming home. It was great when I did, but there was an anxiousness, definitely. The first thing I did when I got home was I put a load of washing on - it felt great! It was a lovely day for hanging the washing out. The first thing I wanted to do was get out and go for a pint! 9

10 For one of us, going home after the operation was only a brief respite: One week after coming home, I had an outpatients appointment with the consultant and she said you an MRSA infection. At this time there were a lot of scary stories in the media about MRSA. The psychological impact was dreadful. I had just started to pick myself up and then somebody comes and knocks you down again in a big, big, way. The treatment was so uncomfortable, and it was relentless, and eventually I said enough. I just can t do this any more. And it was just so, so bad it really was - like stepping onto somebody else s Merry-go-round and you have no control over it and there is nobody telling you when you can get off. The treatment for the MRSA was the absolute low point for me. We have experienced a marked loss in our independence and have had to learn to accept help and ask for help. As rehabilitation progresses we have found that it can be difficult for those who care about us to achieve a balance between looking after us enough, and leaving us to get on with things independently: My granddaughter s like oh, Nanna I will do this for you. Now she only wants to help but I have got a pair of hands and I can do it myself, you know, Please go away! - but you can t say that can you? 10

11 My wife wanted to do absolutely everything for me. Bless her. She really did, you know. She became nursemaid, mother, the whole thing and I didn t want that. - it caused a few arguments. It was all with the best intentions but it was smothering me and I didn t want her to pass me stuff, I wanted to get it myself. It didn t cause massive friction and I think we rapidly learned each other s boundaries. In a way I think she felt a little bit sad, when I regained my independence and mobility, because it meant I was away again out of the house and gone. This is the end of our reflections on the early stages of limb loss. We hope you have found reading it helpful. Please see the other leaflet we have produced about the next stage of rehabilitation: Living With Limb Loss - Getting Back on Track 11

12 Thank you to all those who generously contributed their stories, their time and their expertise about living with limb loss: Carol, Caroline, Dean, Greg, Kath, Lyndsay, Mike, Pauline and Ralph. Thanks also to Ambereen Riaz, Clinical Psychology Intern for co-facilitating the group discussion. And finally a huge thank-you to Alison Sherry our fantastic typist! My role has been facilitating discussion and editing this document. Do contact me if you would like to discuss any of the issues raised in the document, or if you have any concerns or other feedback. Dr Rob Whittaker Senior Clinical Health Psychologist for Specialist Rehabilitation Services. The Leeds Teaching Hospitals NHS Trust 1st edition Ver 1.0 Developed by: Dr Rob Whittaker, Clinical Psychologist Produced by: Medical Illustration Services MID code: /NR Printed by: The Leeds Teaching Hospitals NHS Trust Print Unit W***** Publication date **/**** Review date **/****