Living with limb loss - Leeds Teaching Hospitals NHS Trust

Living with limb loss
Getting back on
track
The Leeds Teaching Hospitals
NHS Trust
n
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.
Th photographs in this leaflet are of us doing the things we
love despite losing limbs
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Food for thought
As fellow amputees we will have trodden paths that will be
both similar and different to your own. We hope sharing
our experiences with you helps you feel less alone in your
struggles with the hardships of limb-loss - as well as sharing
experiences of what has helped us along the way.
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 hope that
reading this document will be a positive experience for you
and wish you well.
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The challenges of living with limb loss
Organisational skills
Living with limb loss can entail many day-to-day practical
difficulties and challenges that must be responded to:
“Planning ahead is now more important than before.”
“Everything seems to take longer now - getting out
of bed, washing, eating, general stuff, even picking
up phones, preparing to leave the house”
“Things are gradually getting back to normal but it
takes longer to do things”.
Developing skills in effective time management becomes
really important.
Effects on close relationships
Our close relationships have often been positively affected by
what we have been through. Feeling closer to partners is a
common experience:
“Before my amputation my husband used to do his
thing and I did my thing but when this happened he
gave up some of his interests to look after me which
brought us two together more”
4
“The loss of freedom of doing everyday things, has
forced us to engage in a deeper understanding with
each other. My relationship with my wife was very,
very good but there now seems to be an even closer
bond because you have got to be a lot more reliant
on each other. It has brought us closer together, even
though we thought we were very close together
anyway. In a strange way it’s made things better
between us. Nowadays she shouts at me less and I get
away with more!”
Similarly with other family members:
“my granddaughter - she’s only 7½ and I am closer to
her now. I was close to her before but we seem even
closer now. She is trying to mother me, you know
what I mean. If I am out with my daughter and her it’s
“Oh, I will walk with Nanna, just in case she falls!”
This is not always the whole story of course - some of our
loved ones have been traumatised by what we have been
through and this can have enduring effects.
Likewise some find it difficult to be comfortable seeing
our altered bodies, encouraging us to cover our stumps,
seemingly frightened of the look of them, or frightened of
our prostheses:
“I struggle to talk to my daughter about it”
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“my daughter, she finds it hard to accept. She doesn’t
even like to see the leg come off, you know? Sort of
frightened of it. I take it off and she’ll run!”
“One of my brother in laws is frightened to death of
my leg coming off”
Losing a limb can put friendships to the test too:
“Some friends are very good and supportive but some
disappear from your life altogether”
Other people
Once out of hospital and making efforts to get out and about
exposed us to the curiosity of others. Sometimes this feels ok;
sometimes it feels intrusive, or downright rude. The stares and
questions of children seem to feel different from those of adults:
“I was in the supermarket and there was this little
girl about two year old and she is looking at me. I
had a skirt on and she could see my right leg but she
couldn’t see the left one. And she was looking and
she’d look at me then she’d look away and then she’d
look again. Then the next minute she was like this
seeing if she could see underneath my skirt! Stuff like
that makes me laugh”
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“It feels different though when children do it - there’s
an innocence to it”
“I took ten scouts scuba diving a couple of weeks
ago and within five minutes the kids were “Did you
lose it by a shark? Was it a shark bite?” I get out of
the pool, and it’s not easy getting out, I hop into the
changing room into the shower and by the time I
have got out of the shower I would guess that half
of the kids that haven’t seen me before are in the
changing room, watching me get dressed and put
my leg on. One young lad, 8 or 9 year old, asked me,
how did I lose my leg? So I told him. With the young
kids, boom, they just come straight out and ask. My
attitude is, if anybody asks, I will tell them and be as
straightforward as I can make it.”
“With children I think it’s good that they get
educated to a certain degree. It’s human nature to
look at things that are unusual. We all were children
once and we all stared at anything we found unusual.
I think it’s good because it does raise their awareness.
“I have touched the man’s leg and it feels like this”
and they can spread the experience with other
children, so I think that’s a good thing.”
7
Some of us have experienced adults’ interest in a much more
offensive way:
“Just last week there was a man on the train. This was
gobsmacking. My mother was with me. My partner
had gone off to the buffet carriage. A bloke came
up and he was so insensitive and so persistent with
his questions. He was clearly digging for my ‘phone
number but he was so rude: “What happened?
Yeah but what happened though? Why were you
in hospital?” The questions. The questions! And
my mother just sat there with her mouth open. She
couldn’t believe the rudeness of the guy.”
“Some adults are so rude in the way they approach
you. I mean a lot of them think I am a war veteran, a
war hero - like when were on holiday, and I thought
I might get a free ride in this taxi - make a laugh of
it! But sometimes you do get people who are just so
abrupt in their approach. They haven’t asked if you
have had a good day - no introduction, they are just
straight in. And my way of coping with it, if I feel it’s
quite rude to approach me like that I just say “I would
rather not talk about it”. Rather than enter into any
sort of conversation because that’s a stopper. If I feel
that you have been rude enough to ask me in a rude
way, then I will answer quite abruptly. And at other
times I may just talk about it.”
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Wheelchairs
For all of us rehabilitation has involved
a period in a wheelchair; one of us
continues to use a wheelchair to get
about. Being in a wheelchair has brought
us face to face with the prejudice against
wheelchair users that is so common in
our society, both in the attitudes many
people express and the way that our
environment is built on the disabling
assumption that everyone can walk:
“I came out of the hospital on the Monday and on
the Friday we were going to a function at a hotel and
when we got there the function room had steps to it,
and the electric lift was out of order. So I said “is there
any other way I can get to this function room?”. So
they said “well you will have to go out of the hotel,
right round the back to where the bedrooms are in
where you go in to the bedrooms and then there is
another electric lift there”. And I thought “it’s my first
outing, and I am already causing trouble”. So we are
coming out of the hotel, everybody is going in and
they are saying “aren’t you coming?” and I am saying
“No. They have thrown me out. I am legless already!”
But even when I wanted to go to the loo during the
night, they were at the front of the hotel so I had to go
back out of the hotel, right round the street and back
in at the front. I thought, “I don’t want to go out any
more”. I don’t want to go. If this is what it’s like every
time you go out, I would rather stop in.”
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“My first outing when I got home, was in the
wheelchair. We were at the supermarket and nobody
looks at you in the chair, you know. Even though we
saw people we knew, you know, they would say to my
husband, “how is she?” and he would say, well “ask
her! I just felt as if I was losing my identity or being
diminished”
“When I was in the wheelchair people just didn’t
realise I was there. It’s a strange kind of feeling
that people talk above you. It’s not that they are
frightened to talk to you, it’s just that they don’t. It
doesn’t even enter their head to talk to you. It’s like
you have become invisible. We gave up going to the
supermarket- we just got stuff delivered, because we
couldn’t be bothered with it anymore.”
“Suddenly your perception changes. Now you have to
think “what’s the access like for wheelchairs? You have
to re-think: “Are the steps in there? Can I get to the
toilet?” And then you realise, OK I can go to this place
or that place, but, it really was a culture shock. You
realise more and more that there aren’t the facilities.
People say there are all these facilities for disabled
people but there aren’t, are they? I mean they say
it’s accessible but accessible doesn’t mean wheelchair
friendly. Accessible doesn’t mean easily accessible.”
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Feelings
Through the rehab process we have often been alone at home
with little to do. This can make us feel isolated and cut-off from
the rest of society, and vulnerable to panic attacks and feelings
of depression. Not being able to do things as easily as before
can be enormously frustrating. Access difficulties, discrimination
and the awkwardness of doing everyday things can make us feel
both conspicuous and burdensome, and can serve to compound
the emotional effects of our experiences, often knocking our
confidence and having us retreat from normal life.
“Confidence is a
big thing. You have
to rebuild your
confidence, because
you do lose it. I am
a DJ and a promoter
so I am in the media,
and how you dress
and present yourself,
and how you
interact with people
is really important.
Now I am in the chair I am disconnected from the
people that I used to interact with, especially in public
places and clubs”
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“I have found myself thinking what will they think of
me? What will other people think of me?“
“I find I am more confident when I am with people.
When I am on my own I feel really nervous and have
panic attacks, and can’t make myself get out of my
car. I doubt myself. I sit and I look at the Minibank
ten yards away and I can’t get out of my car and go
to it. I just can’t make myself do it. I can sit for half
an hour and talk myself into trying to do these silly
things. But if I am with somebody, if I am with my
partner or my mum or family it’s like being shielded
a bit, you know, a bit safer. And I worry about falling
over as well because I should be up and walking but
I fell and damaged this knee which has set me back
dramatically.
“During the first few months when I first started to
walk again I was exactly the same, I just didn’t want
to get out of the car, didn’t want to do things. When
I was with other people it was fine. But then when I
started going back to work I had to get a taxi and it
was like “I just don’t want to do this”. I didn’t want to
get on a bus at all. And even then you sit at your desk
and just kind of ignore people. It was kind of just a
fear really…”
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Work
Returning to work, for those of us for whom this has been
possible, has been both a challenge and an enormously
important part of the rehabilitation process:
“I think probably the fear of going back to work was
just “Am I going to be able to do this?” “Am I going
to fit in again?” “Is it going to be strange and am I
even going to want to do this again? How are people
going to react to me? “Are they going to try and be
standoffish?” it was very strange…”
“I wanted to go back to work. I absolutely needed
to have a degree of normality. I didn’t want to be
different to anybody else. I didn’t want people to
look at me as an amputee. It was important to me
that I went back to work and I said that’s what I am
going to do. They were brilliant about it and said
“Take your time. Come back when you are ready.
Work a couple of days a week initially or whatever
you want to do and sort of ease yourself back into it”.
“My work were brilliant - “Take your time”. They
adapted my company car and 4 months after my
amputation I was back at work”
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Pain
All of us experience phantom sensations, sometimes pains too:
•• pins and needles
•• a feeling of an electric current going up your leg
•• a feeling that you’ve had a flip-flop on that’s rubbing
between your toes
•• a cold feeling all the way up your leg
•• ‘hot-aches’ like you’ve been out in the snow and got
chilblains
•• a real throbbing pain that feels as if your leg is going to
explode.
Sometimes the pain comes along with ‘jumpy stump’, where it
twitches and moves about quite uncontrollably.
These pains seem worst in the early stages, and generally,
though not always in our experience, fade with time. They
can come on very suddenly with no warning, though some
of us can predict certain activities when they are most likely
to strike - such as relaxing on the toilet. One of us can very
reliably predict the weather according to his pains!
For some of us medications, such as Gabapentin and
Amitryptiline, have been helpful. For one of us though the
side effects have been unacceptable and we have stopped
taking them.
Most of us have found massage helpful - particularly if
someone else does it. Some of us too have found that exercise,
particularly swimming, seems to help with phantom pains.
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Living with some degree of chronic pain - whether it is
pain in your stump, your phantom limb or other areas of
the body - is unfortunately a very common experience for
people who have lost limbs.
Please discuss your pain with the team - there may be
several different things that might help, from making sure
you are on the right medication for you, to improving the
fit of your limb, to learning pain-management strategies.
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Longer-term Rehabilitation
Other things we have found helpful in our rehabilitation include:
Engaging with life
Getting out doing things, spending money, buying
nice things and getting out.
Doing a variety of things brings happiness; doing nothing
at all brings you down. If you engage in a variety of
activities it really helps. If you have a local pub, the more
you go down, the more people will get to know you,
they will accept you and you will feel more comfortable.
I’ve found that more helpful than trying to do too much
by going to too many places. If you can find yourself any
activity it will help stimulate the mind.
Connecting with people
Talking to friends is really important - stopped me
becoming isolated.
Exercise
Exercise is really good too - though it does make your
stump sweat!
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Pilates classes are
particularly good for back
pain - made me stronger
which then takes the strain
off my leg. It doesn’t sound
like the kind of thing a man
should do, but it does work
really well!
Another “stress-buster” is
swimming- just mindless
trundling up and down
and I come out feeling so
much better - my mind’s
relaxed and it’s sorted out
whatever problem I have
got.
Pacing
Taking one day at a time. Resisting the temptation
to expect too much too quickly. Setting small,
reasonable goals. Accepting that I can achieve more if
I take things slower.
I set myself a series of little targets, little goals, and
the trick was not to get too disappointed if you
couldn’t do it straight away, but not to give up
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Forward planning
Planning outings beforehand - asking do they have
steps and access to toilets? If they don’t at least you
know and then it’s your choice. You would hope that
you wouldn’t need to ring up and check these things,
but unfortunately in reality you do.
Asking for help
It’s been important for me to learn what my
limitations are now then ask for help - for assistance,
not for things to be done for you.
Ask people for the help that you need: “Sorry, can
you lift this bag for me?” and “Can you do this
for me?” or “Could you hold the door for me?” or
whatever it is. Learning how to do that just seems to
take off a little burden - a little bit of help, no matter
how small it is, can actually help in a big way. It feels
like taking a risk, and it does take courage to do, but
it can actually help you because you are interacting,
not drawing yourself away. You are taking it to
people and they will respond accordingly - the
majority of people do.
There are lots of people who would do stuff for you,
but they are waiting for you to ask - they don’t want
to offend you by offering.
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Smiling at strangers
If people look at you in your
wheelchair, or with your
prosthetic leg, they often don’t
know how to approach you whether they are intruding, how
to talk to you. Now I lead the
way - I smile at them and say
“Alright mate? How you doing?
Are you having a good day?”. If
they see you smiling they will,
9 out of 10 times smile back,
because you are leading the way.
That definitely works, definitely.
Getting through it together
When I saw my consultant the first time his words to
me were “it’ll have to come off”. Then he followed
up by saying “but we’ll get through this together”.
I’ve never forgotten those words. He meant not
only him but the prosthetists, psychologists, sarcoma
nurses, Macmillan staff, the council, Social Services there is always somebody there that you can talk to.
Writing questions down as I think of them before
hospital appointments helps me remember them on
the day.
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Whatever the problem whether it be financial,
medical, personal, there is someone there that you
have got a number for and it’s just ringing and asking
and just talking. So getting through it together
means you are not on your own.
Remembering that the doctors and other professionals
are there to help me. They are on my side.
Accepting that recovery is not just down to me learning to ask for information and help: practical,
financial, or emotional.
Resisting feeling like a nuisance - not being too shy
to ask. Don’t be afraid to challenge or ask awkward
questions about treatments.
The prosthetists have
wonderful knowledge and
skills but they can only
help you if you tell them
what’s wrong. It’s taken
me a while to realise that
I don’t have to put up
with an uncomfortable
limb - keep on at them,
insisting on a reasonably
comfortable limb.
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Kindness to self
Coping with day-to-day life with a prosthesis can be really
hard work. Allowing yourself the occasional day off from
coping can be an important chance to recharge your batteries,
both physically and emotionally.
Not being afraid of letting difficult emotions out accepting there will be bad days and it’s OK to wallow
sometimes. It doesn’t mean you have to do it all the
time, but, it’s sometimes it’s good just to say “Stuff it I am just gonna sit here and eat bad things and watch
television!”
It’s important to hold onto hope that things will get
better. Trying to talk to myself in an encouraging and
upbeat way. Regarding myself not as dis-abled, just
differently-abled - I don’t want things changed on my
behalf. Being open and honest but not being afraid
to say so if I don’t want to talk about my amputation
- “Look I don’t want to talk about it today. Can we
just talk about normal stuff?”
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Kindness to others
As much as you go through the pain and the
heartache and stuff, if you have a partner try and
remember that they are going through that with you.
You can get wrapped up in yourself but you have got
to drum up from somewhere the strength to realise
that you are sharing this with somebody.
Remembering that life is as hard to deal with for my
partner as well as me.
My partner was affected in a different way than I was
because I was so high on drugs in ICU it was all a bit
of a blur, whereas she had to deal with it all whilst I
was in hospital. She is now getting help for that as
well. It’s useful to know that help isn’t just available
to the patient, it’s available to partners as well.
Road safety
I used to cross the road quite happily without
bothering to go to a crossing. I have done that a
couple of times recently and I have realised, I have
got half way across and a car starts coming and it’s
like “Sh**!!! what do I do now?” because I can’t run
anymore so I can’t pick up the pace. You have got to
learn to try and cross at sensible places.
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Becoming a stump-care expert
In the early stages, your stump shrinks that much. You
can have a re-cast, and it will be fine for a couple of
days, and then you feel as if you have got a floppy
welly on again - it just doesn’t fit at all and you’re
squelching down the road. This can get you down but
it’s helpful to remember that things will settle down
in time.
I always put talcum powder on after I have had a
shower and I have never had any blisters. Also at
night I, use Sudocrem - I make sure it is fully clean
and then put Sudocrem and a fine like stocking type
material over the leg, and that really helped keep
it down. I keep an eye on it too - whenever it starts
looking like it might be getting a blister that I will try
not to wear the leg as far as I possibly can, and kind
of cure it before it gets too bad.
When it becomes loose, you are prone to blisters and
they can be really sore - you can end up back in your
wheelchair. You are not supposed to wear your limb if
you have got blisters.
I wash my stump when I clean my teeth. Morning and
evening. I wash and dry my stump. If I do get a rub I
use surgical spirit which everybody says you shouldn’t
do, because it hardens the skin, (remarkably quickly).
It stings like hell, but it dries the sore patch up.
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Standing up for your rights
If you’ve come out of the car, gone through the
hullabaloo of getting sorted out, going up to the
premises and then you find out you can’t get in, I
think it’s important to tell the manager or licensee
how you feel about it.
My girlfriend is brilliant that way and she feels
very passionate about it. We went to the pictures
on Kirkstall Road, and we went in and found out
that where I had to sit in my wheelchair was quite
removed from where she was sitting, so if we wanted
to share popcorn or hold hands or anything like that
it was a non starter. So she just went straight in and
told the person in charge “It’s unacceptable. Why
are we being discriminated against? Why can we not
hold hands, why can we not share popcorn?” And
he agreed with us and brought a chair so she could
sit beside me. It’s frustrating to have to do it but I
think it would be more frustrating if we didn’t do
something about it. Unless we do something about it
nothing will ever change. There will never be change
unless you fight for it - that’s what I have learned.
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And Finally...
Positive mental attitude
I lost my leg 42 years ago
and since then I have
met a girl, got married,
had children, trained as
a highways engineer and
made a successful career
out of it. I also enjoy
swimming, I run water
sports activities for people
with disabilities and I
regularly do the 25 mile
Doncaster bikathon. I find
that there is not much
that I can’t do. If anybody
asks me, the only thing
that I can’t do is run. It’s
just a case of ‘don’t give
up’, because it is surprising
what you can achieve, even
if it’s just by persistence.
Even if things don’t go well
at first, don’t give up - “try,
try try again”.
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I lost my leg when I was 8. I went to normal school,
went on to university, got a degree in International
Relations and travelled round America for 3 months
on my own. I’ve balanced working for the Citizens
Advice Bureau and for the Leeds Council Housing
Department for many years with, in recent years,
caring for my elderly parents. The people I worked
with all those years forgot all about my false leg - I
never made anything of it.
There are times, particularly first thing on a morning,
when you get out of bed and you swing your leg out,
look down and you see there’s no leg there and it can
get to you for a second or two. Not every day, not
all the time, but it does. I don’t know that anybody
would ever “get over it”. But I can do most of what
I used to do - I have to do it differently in a lot of
instances, but it’s “the system” that’s classified me as
disabled. I don’t feel disabled. There’s an awful lot of
things that you take for granted, that you have got to
learn a new technique to do, but look at me - there is
no stick, there is very little limp and I am mobile and
agile. There are an awful lot of people that I meet
on a regular basis that wouldn’t even know I’m an
amputee. When I’m not at work I teach advanced
motorcycling. When I’m out on my motorbike it’s
like a different world! Life for me and my wife is a
constant series of challenges but our life absolutely
does not revolve around my amputation.
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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 earlier stage of
rehabilitation:
“Living With Limb Loss The Early Stages”
Thank you to all those who generously contributed their
stories, their time, their photographs and their expertise
about living with limb loss: Carol, Caroline, Dean, Greg, Kath,
Lyndsay, Mike, Pauline, Phil and Ralph.
Thanks also to Ambereen Riaz, Clinical Psychology Intern for
co-facilitating the group discussion. And finally a huge thankyou 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.
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