Written in 2011
for the Kings College Limb Reconstruction Trust Web Site
Adrian Heathfield
has been a patient for seven-and-a-half years. He is on his fifth frame,
stuggling to get benefits, putting up with the public staring at his frame and
even being abusive, desperately trying to keep fit for his planned swim across
Dover Harbour in summer 2011. And yet, despite it all, he remains positive and
upbeat. This moving diary is an inspiration to all. It also highlights how
physio and counselling have been essential to his mental and physical
well-being.
Adrian's diary
Writing a diary
of my highs and lows in 2010 was a problem: it has been an exceptionally tough
year, with many good times too, so I decided to write a general diary instead.
I would like to thank all the people who have looked after me at Kings, not
just Mr Groom’s team but many more too numerous to mention. You are all in my
thoughts and do a brilliant job!
January - a
new role with the Tri Club and bad news on the benefits front
After a
fun-filled Christmas and New Year it is back to reality. The month started
well. My pin site infection looks like it is under control so I started
swimming again, and it went well considering I took three weeks off. I didn’t
have a rest from the physio as I suffer too much if I do; everything just locks
up in my calves and foot and makes it very uncomfortable. Giving the swimming a
rest for a while gave me some rest time.
I took over as
membership secretary for Ashford Tri Club and have been very busy as membership
is up for renewal in January. Hopefully I will do as good a job as my
predecessor Christine. She also started the club but has now moved up to the
lakes. The club in general has supported and encouraged me so much on my short
return at the beginning of last year and also when my leg re-broke.
I received a
letter from Employment and Support Allowance (ESA) saying that I am not
entitled to help as I scored zero on my medical back in November. I have
appealed the decision in writing and will hopefully get a reply back soon.
It is five months
since my fourth frame has been put on but the x-rays this month show very
little growth. At least I was allowed to use only one crutch and hopefully this
will stimulate the bone to grow.
February -
Fitness is suffering and pain is increasing
I had infections
for about a week, took antibiotics and they finally did the job. I think it
might be best to ask Mr Groom to move the pin as it always seems to be the same
one causing trouble.
I did swim when I
could but it was very on and off depending on whether the pin site was weeping.
My fitness is beginning to suffer a bit after the last couple of months of on
off infections and the Christmas break.
I am still
struggling with my general mood. I appealed the ESA decision and they paid
money I wasn't expecting. It looks like they may have ruled in my favour but it
feels like I am always fighting for the scraps.
I am still on one
crutch outside. I am not sure how it will go until it all starts to settle down
a bit. I am suffering a lot of pain across the top of my toe and up the foot. I
am still getting pain in the bottom break site which feels quit sharp but this
doesn’t mean that it will not unite. I am also getting a numbing sensation at
the top site which happens now and then even though it is completely united. I
am going up to Kings every week to see Helen (the unit’s specialist
physiotherapist) for physio. These sessions are hands on work (myofascial
release, deep tissue massage, trigger point management and frictions) as they
know I do enough exercise at home.
I had a small
operation to remove the problem wire down by my ankle and replace with a half
pin. We were hoping this might stop the burning sensations I get across the big
toe. It hasn’t but at least it won’t keep weeping and getting infected now.
I gave a talk
about the frame to sports science students in Maidstone. This part of their
course is about sports injuries and the psychological impact, although you
can’t really explain the psychological effects without giving some
physiological background. I talked and answered questions for about an hour and
a half and really enjoyed it but felt really tired afterwards. There were about
25 in the class, all very young and they had never seen a frame before. They
were a pleasure to talk to as they showed a genuine interest and asked tons of
questions.
I have been
looking for work now for three months, have sent out loads of applications but
have not had any luck as yet. All the applications have been for office based
work but employers don’t seem to be interested. You have to be honest but with
the number of people looking for work I get the feeling that as soon as
employers see my history, they just bin my application. I’m feeling very
disheartened but just have to keep going.
I rang the ESA
about my benefits and they said that because of the back log my appeal case
would not be heard until about July. I am just receiving the appeal benefit
rate and it just doesn’t cover the bills.
I came off the
crutches at the end of this month which was a nice 35th birthday present. The
leg is still very uncomfortable but it feels so good to be without crutches and
it’s a move in the right direction. Hopefully it will stimulate the break site
to fuse. The physio has been going well and I have been given the okay to use
my adapted exercise bike. Using the bike when I can’t swim will make things a
little more interesting.
Swimming has gone
well since I started again. I have had a good four weeks with no operations or
weeping pin sites. This good routine has produced results. I have managed to
swim three times a week and my 1000 metre times are improving. I also did my
fastest 1600 metres in a frame by a couple of minutes so far. The physio is
still going well. The leg is feeling much stronger after Helen gave me a few
more different exercises to increase weight bearing which is also more
interesting for me.
I’m still looking
for work but as yet have not got anything. All I can do is keep sending out
application forms and CVs. It would be nice just to get a couple of interviews
as I have applied for so many.
I went to a frame
awareness and training demonstration put on by Helen for physios in the South
East NHS Trust. I really enjoyed talking to them in small groups at the end of
the session. I also learnt a lot about the frames and how they can be used for
different things. There was much I did know but a good percentage that I
didn’t.
I went up to
Bromley Town Hall by train for a wine tasting evening in aid of KCH LRT and had
a brilliant evening. A big thanks to Karen (clerk to the Trust) for the work
she put in and for the good company, it was a fun night.
May - Still no
work and a new operation looming
Things have just
gone from bad to worse. I haven't found a job yet and my leg will not unite if
left as it is. It has also deformed so the medical team are starting again and
they have put me on the list for the operation.
Mr Groom is going
to do what he did with my third frame: cut the break site out, compress it with
the frame and use the stacked frame again to stretch it from a proximal
corticotomy.
I still haven't
heard when the ESA benefit court case will be but am not too worried about that
at the moment; it will happen when it happens and I will just be happier when
they get me in for this operation so I can start improving again.
The thought of
amputation is still in my mind even when things are going well but I will go
along with the frame. In the long run I really just don't know. All the effort
I put in to try and find work has just gone down the drain again because there
is no point until I have had the op and have recovered a little.
I am membership
secretary and a coach for Ashford Tri Club. As East Grinstead sprint triathlon
was the club’s target race for this distance I went along to cheer them on. We
had over 20 members taking part, quite a few competing for the first time.
After the race we all got together for a meal and a few well deserved beers.
June - Abuse
from the public and a new coaching role
Some Irish psycho
stopped his car and had a go at me while I was waiting at the bus stop. He was
looking at my frame as he drove past and nearly drove into the central
reservation, then came back and started accusing me of staring at him. His
partner was in the car with him and I think he just felt really embarrassed. I
wasn't about to get into an argument with him; he came across as a bit unhinged
and I just bit my lip.
I have stopped
looking for work at the moment as I am going back into hospital to start again
on my leg and no one will take me on at this point. I will start again as soon
as I am out of hospital and a little recovered. I am keeping busy getting fit,
as I always recover much quicker from operations when I am.
I have passed my
Level 1 British Triathlon Federation coaching course, so have been coaching
swimming pretty much every week. The swimmers are all improving by the week,
which is nice to see. It also helps keep me motivated as I can’t let the
younger ones get too far ahead of me. This makes me push myself when I start to
lose motivation, I can’t let the frame be an excuse.
I was planning to
go over to mum and dad’s on Father’s Day but dad got taken into hospital with
appendicitis which turned out to be gangrenous. It was lucky it got caught in
time and he had it taken out that night. He came out of hospital at the end of
the month and it is good to see him making a good recovery and enjoying what we
have of the sun.
On the 1st of the
month I did an endless pool session with Trilife who coach and test triathlon.
I really enjoyed it. I received brilliant coaching from them and some good
underwater footage to use to improve my technique when I start swimming again
after recovering from my operation on the 7th.
The call to go up
to Kings on the 6th did not come until 6pm, so by the time I got on the ward it
was nearly 9pm and I felt completely shattered. The operation the following day
went well and to plan. They also sent bone samples to micro biology to make
sure there were no underlying causes stopping the leg from re-uniting.
This is my fifth
frame and the pain is no better or worse than usual. I always expect it which
makes it very easy to deal with it. The worst thing you can do is try and fight
it; sometimes it is best to just accept it and go with it, serenity.
Unfortunately I
can’t control infections and micro biology found a very small bone infection
that would need a short course of antibiotics. As they did more tests the
infection became more serious and unusual - Propioniibacterium acnes - and they
weren’t sure what to treat it with. After treating with Vancomycin for just
over two weeks I had a picc line inserted. I have to be given Teicoplanin at
home every day by the ICT. I am a little unsure of having people I don’t know
coming round. I would rather give it to myself but I won’t be able to connect
the picc line to the syringe with one hand. The picc in general was a big
issue. Mr Groom’s team said that I wouldn’t be able to swim with it in and that
I might need to keep it in until the bone unites. I know from past experience
that this could be a long time. I wasn’t happy and to say I was distressed
would be an understatement, but I know that if it needs doing it needs doing.
I have always had
a really low resting heart rate and have always competed in different sports,
sometimes at a very high level. Those looking after me have always seen this as
me just being very fit but not this time, which was the final straw. The ECG
and echo came back clear. It was low but strong and to be expected with my
background. With everything else going on, it just puts a small doubt in your
mind that I could have done without. Everyone keeps asking if I will be glad
when I go home; it just feels like for the first time, I have nothing to go
home for.
I’m back home now
and the ICT nurses are all really nice. However, in the first week, the line
came out about four inches when they changed the dressing. I spent the morning
at our local hospital getting an X-ray to make sure it didn’t need replacing,
and luckily it was okay. It could have been partly my fault because I didn’t
realise I wasn’t supposed to do any heavy stretching. That means my plan to do
some weight training is out of the question until the picc line comes out.
So it looks like
it will just be physio and core stability training for me.
I’m trying to
stay upbeat for people but feel pretty numb at the moment and just mentally
shattered.
August - How
to control pain and depression sets in
I have been
waking up about five times a night. I can control pain and just ignore it while
awake but can’t control what is happening while I am asleep. I go back to sleep
within a couple of minutes of waking by just slowing my breathing and relaxing
but, with these breaks in my sleep, I am waking up shattered. After talking to
Debbie (limb reconstruction nurse) and saying I don’t want to take sleeping
tablets as they wipe me out, I have started taking Tramadol at night just to
help take the edge off the pain. It is a pain killer, not a sleeping tablet,
but I’ve used it in the past and it takes the edge off the pain while I am
asleep. I am feeling more rested when I wake up now, even though my sleep is
still broken.
I have just about
finished the distraction and everything is nicely in line. The muscles are very
tight and my daily physio sessions have really helped. It does get a little
gutsy but it stops contractures and eases pain, so is well worth the effort.
You can’t complain if you’re not prepared to do anything to help yourself.
I have pushed
myself relentlessly now for about seven and half years and think it has started
to take its toll. I can’t really explain but it just feels like someone has
flicked a switch off and I can’t turn it back on: I’m not getting anything
sorted out, I can’t look back, am not interested in what happens in the future,
everything is upsetting me and I am just so tired! I spoke to Debbie and Helen
who have always been so supportive, and also to Miss Phillips. I then spoke to
Mr Groom who wrote to my GP. He has organised for me to start counselling. Just
knowing I can get things off my chest made me feel better.
September -
The benefits of counselling
I finished the
distraction prescription this month which is brilliant as the skin and muscles
where starting to get so tight. I managed to avoid contractures by doing loads
of physio. The bone is nicely in line, the length is back to normal and there
are signs of growth which is very encouraging. All my blood tests have been
normal since coming out of hospital. They were before I went in as the
Propionibacterium I had is unlikely to raise inflammatory markers. Micro
biology are unsure how long I should keep taking Tecoplanin. If I had metal
work going across the break site they advised that I should stay on the
Tecoplanin until we achieved union. As the metal work I have goes into the leg
but not across the site they don’t know, so we will just continue until the
beginning of next month.
I had my
psychological assessment for counselling. The very pretty young woman who
assessed me was very nice but she did seem to be a little distressed by the end
of the session, so it is better that I will be seeing another therapist. Things
have been a lot better though, just knowing that I will be getting some help
and will be able to talk to someone who doesn’t know me. Friends have been very
supportive but, like I told them, it is not something they can help with. When I
see my friends the last thing I really want to talk about is problems, I just
want to have some fun.
Tri Club had its
standard distance club championships at the Lydd race. I couldn’t go and
support them as I was having treatment that morning, but met up with them for a
late lunch and a catch up. It was really nice to see one of our old members and
the former men’s team captain come along. He is in the army and is based in
Bermuda. He is over here for a couple of weeks and came along even though he
wasn’t very well, good company and good food.
October - Back in the pool and happiest I have been all year
I made a bit of a
snap decision and got my car back. I can’t really afford it but it has given me
some freedom and my own space. When I use the bus I sometimes get one too many
questions when I don’t really want to talk about it, especially to complete
strangers.
I stopped taking
Teicoplanin at the beginning of the month and three weeks later the line was
removed after further blood test came back normal. However, it was unlikely to
show in the inflammatory markers. I hope my mood will improve and that I can
start exercising again. I just need to motivate myself to do it. It was a
little strange that I didn’t miss the exercise while I couldn’t do it or perhaps
I just accepted it eventually, I don’t really know.
I started
swimming again with the triathlon club but just did my own thing as I have had
no exercise for three months and carry twice as much frame on my leg. It did
feel good to be back in the pool but only for the first length; the rest of the
session just showed me how unfit I was and I didn’t enjoy it at all but felt
unbelievably positive afterwards and probably happier than I have been all
year. I have also started doing some weight training at home but again am very
weak. Although I haven’t really put on any weight, I have lost a lot of muscle
and really struggle with body weight exercises. I know it will improve with
time and regular training.
Weight bearing
increased from touch to 50% but within two weeks a wire snapped. They do go
sometimes, especially close to distracted sites, it is just wear and tear, but
is a bit of a pain just as things where improving. Debbie removed the wire
which was very uncomfortable and they will replace it as soon as possible with
a half pin or maybe two, just to stabilise the frame a little better. It is
back to touch weight bearing for now and also ease back with the harder bands
with the physio.
I had two half
pins put in at the start of the month to replace the broken wire. There were
very few options as to where they could be positioned as I have half pins there
already. It is also just below the knee so is very sore and has reduced knee
mobility by about 50%, but we can sort that out with physio. I can only do
touch weight bearing for four to six weeks as they want the pins to anchor
properly. This also means more mobilising rather than building physio again.
The counselling
has been brilliant. It only really highlights what I already know, but I find
it an outlet as I don’t have to worry about upsetting the person I am talking
to and don’t have to care what their reaction is or what they might think of
me. Unfortunately my local health care trust will only give me six sessions.
They have now come to an end so I am very happy that Mr Groom has arranged a
counsellor for me at Kings. The initial review is at the beginning of December.
After the skin
healed around the new pins I started swimming again. This and the physio I do
in the pool is really helping the mobility in my knee. Everything is very
backwards and forwards at the moment. I can’t really get settled into any real
progressive programme but it is better than not being able to do it at all and
I have done it all before. You just have to be a bit relentless in your
pursuits.
I spent an
afternoon at Charlton Athletic football ground helping to collect money for KCH
LRT. It was so nice for me to talk to people who were so friendly and giving.
After a very strange year it kind of puts your faith back in the fact that
people in general are good.
We had the first
snow fall of the winter and now I have the car back I quite like it. Looking
back on the snow last year and being back in the frame waiting for buses, it
was hard and cold. Having the car makes life a lot easier. Trains are so
unreliable that I have missed a couple of appointments.
While the
original break site being compressed is showing good signs of uniting, the proximal
site is not and there seems to be very little happening. I think it is just
growing slowly but Mr Groom thinks there could be a cyst. I have booked an
ultrasound but the earliest appointment is on 13 December. It might be better
if there is a cyst because at least there would be a reason for it not growing.
It would also give micro biology a chance to see if the Propionibacterium
infection has cleared up. Debbie is going to organise an Exogen machine for me
to try and stimulate some growth. I used one about six years ago and it worked
for a while, so is worth a try, even just to kick start some growth.
Dad got shingles
after recovering from his appendicitis operation. It was not great as it was on
the face and he then suffered the nerve problem which often comes after
shingles. Thankfully he is a lot better now. He is not one to complain for
nothing and I know he was in a lot of pain. I am just glad it didn’t last for
years like I know it does with some people.
December - A
new problem with a cyst but it's a wonderful Christmas
The pesky snow
was back at the beginning of the month. It looks pretty but I would rather have
just a tiny bit. The trains just give up so I ended up missing quite a few
appointments at Kings.
I have only been
swimming once a week. It’s going okay although I am still struggling with my
fitness. It will take time but I have until next July to prepare for my
sponsored swim in Dover Harbour, so it should be fine.
The ultrasound
showed a big cyst in the proximal site. It measured 27mm by 19mm. I didn’t
expect it but at least it can be treated and micro biology can check that the
infection has cleared. This would be a big worry off my mind. It might seem a
strange way of looking at it but in the past when I have had non union problems
there has never been a reason for it, so to have something that can be treated
is quite positive for me.
I was admitted to
have the cyst removed and cement beads inserted in the proximal site. I have
now had the sutures removed and the skin is healing very well. It is very red
but I’ve been told this is normal with the beads.
I only managed to
swim for the first two weeks of this month but have done some weight training
and a lot of core stability work every week. I feel like I am starting to get
some fitness and strength back which I hope will help when I eventually get
back in the pool.
The Ashford Tri
Club Christmas do was a brilliant evening I think. I can’t remember much after
about half way through the evening as members were keeping me well topped up with
red wine from the second I got in the door. Thanks guys and girls, not for the
hangover though.
Finally five days
before Christmas I got a letter from the employment and support allowance
saying that the tribunal had taken place. I said I wanted a hearing so I could
hear what was being said but was told not to split hairs. However, they ruled
in my favor which is the important thing. It has taken over a year on appeal
but I got there.
Christmas was
brilliant. I spent it with my mum, dad and my brother at their house. I ate way
too much, drank way too much, and the scales really tell the tale as I am 10lbs
heavier than I have ever been in a frame and my weight is still creeping up. My
brother was 30 on the 30th and we had a brilliant time at a friend’s Chinese
restaurant - it was a really good way to finish off the year.
It’s not been a
good year but it has been a testing one, physically but even more mentally.
That is now behind me and I have had a wonderful Christmas and New Year, so
more of the good times for 2011 please.
All the best for
the New Year and decade!
Ade
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