Disclaimer: The following is a guest post from a fellow reader of this blog, and a person living with type 2 diabetes as well as HIV. The thoughts and opinions expressed here are not necessarily my own, nor are they intended to diagnose, treat, or advise anyone's medical condition. Expression and platform for all experiences of living with diabetes are intended as a tool to generate awareness, increase our empathy and understanding and generate questions which we may take to our medical team.
The Cause
What I’m about
to write might sound like a lost script from some soap opera or an episode of
Casualty or Holby City. Come to think of it the producers would kill for a
story line like this as it’s complicated enough.
The amount of
people I’ve spoken to about what I’ve been through whether it be friends of
those in the profession have all had similar reactions of disbelief and come to the same conclusion what I’ve been through shouldn’t have happened. It even led
to one consultant describing what I’ve been through as the perfect storm.
Definition: A
perfect storm is an expression that describes an event where a rare combination
of circumstances will aggravate a situation drastically.
My name is
George Rodgers I’m 50 years old, I’m mixed race and I’m HIV. In 2000 I started
taking a combination therapy regime containing ddI. I was fine for four weeks
then started suffering agonising abdominal pain. I stopped my HIV drugs and two
days later the pain went away. But by that time the damage had been done.
Blood tests had
made it clear I had had pancreatitis (inflammation of the pancreas). As I
subsequently found, the ddI regime had turned someone with a family history of
diabetes into someone with the condition and quite a severe form at that. It’s
resulted in a long struggle (as late as July 2010) to find a HIV therapy that
didn’t make things worse.
There is a third
type of diabetes that exists, which is caused by toxic damage to the pancreas.
Although the most common cause is alcohol use, some drugs can also cause it,
including HIV drugs which is what happened to me.
I received
different reactions to my pancreatitis from my HIV consultant and a
diabetologist I subsequently saw. My HIV doctor said, “Your amylase is up by
25% and we normally only start worrying if they’re up 50%.” The diabetologists
reaction was “It’s a good job you stopped when you did or you would have been
dead”
I feel HIV
physicians are overly focused on HIV and not given my diabetes sufficient
attention. Repeated requests to be referred to a diabetes specialist have been
met with some reluctance both at St Thomas’ Hospital and at Queen Elizabeth
Hospital. I found out about the diabetic team at St Thomas via my GP and I had
to use blackmail to get an appointment to see the diabetic team at Queen
Elizabeth Hospital (more on that incident later).
The pancreatitis
had scared me from taking HIV drugs and I went on a treatment break for 18
months. My diabetes at that time was manageable with diet and exercise. When I
restarted, with a CD4 count of 150, I went on AZT/3TC (Combivir) and
nevirapine, chosen with diabetes in mind and did well for 18 months. Then
unfortunately in 2003 I became resistant to the nevirapine and got accused by
my consultant that I wasn’t taking my medication properly.
After some
chopping and changing I was eventually kept on the Combivir and switched to a
boosted protease inhibitor Norvir, indinavir/ritonavir. My glucose levels
suddenly doubled to 12mmols/l. I felt really unwell, with high glucose levels
you feel kind of speedy. I got bad tempered and emotional, alternated between
feeling hyper and exhausted.
When my sugar
levels shot up I went back to my HIV doctor. He said, “It can’t be the meds it
must be your diet” and didn’t propose any diabetes medications. Despite being
reassured 18 months earlier that if the anti-virals did start affecting my
diabetes there was something they could do about it.
Once again I
found myself changing consultants and met with the same response despite both
my partner and me at the time and my CPN explaining in full the reason why I
was having problems with anti-virals. I even sent her a letter out lining the
issues I had. But I met with the same blinkered attitude that I’ve had all the
way through this from consultants. Doctor Lyons response was “I don’t see what
your problem is!”
Different Hospital Same Attitude
Once again I
found myself back at square one and after a long talk with my partner and
hammering home the point that if things go wrong this time I will not be held
responsible for my reaction. He convinced me to change hospitals and see the
same consultant that he was under at Queen Elizabeth Hospital.
I went to Queen
Elizabeth Hospital and met with the same kind of reaction despite the consultant
there knowing the problems I had at St Thomas Hospital. When I raised concerns
about the medication she was giving me and asked, “How is Kaletra
lopinavir/ritonavir going to affect my diabetes?” She totally blanked the
question telling me it was down to my GP to sort my diabetes out.
Knowing full
well that my GP doesn’t know anything about HIV medication I had no choice but
to stay of medication. Not only that I wasn’t too sure how my G P’s reaction
would be to treating someone who is HIV as I had just transferred to a doctors
surgery that was closer to home. Not only that all this was starting to have an
effect on my relationship as my partner couldn’t understand why I was having
problems with Dr. Mitchell when
his treatment and care was going so well.
The Fallout
The answer to
that is his medication didn’t trigger of pancreatitis and leave him with
diabetes type II. On several occasions he accused me of asking for too much and
even went as far as accusing me that I was giving the consultant enough time to
know me.
The consultant
involved would have gotten to know me if she had had the decency to listen to
what I was saying and not be so blinkered in her attitude and listened to my
concerns. For 3 months I was telling her the concerns I was having about the
medication she was going to give me. I only asked what anybody else would ask
in that situation. Not only that she knew what I had been through at St Thomas’
because my partner had kept her informed, it wasn’t like I was going in as a
cold case.
In the end I
stopped seeing the consultant and I ended up moving out of my own home because
I couldn’t get my partner to understand why I was reluctant to go back on
anti-virals without my question being answered and precautions being put in
place. I was taking this stand just as much for his benefit as mine, I saw the
look on his face of sheer terror when I was doubled in agony when I got
pancreatitis.
I moved back
home just before Christmas 2007 and I made an appointment for the both of us to
go and see a psychologist at Queen Elizabeth Hospital as I needed my partner to
understand why I was so reluctant to go back on medication and why he needed to
back off.
That went well,
he backed off and I ended up getting the therapy sessions which lasted three
weeks after I got a lecture in regards to the fact that I needed to be an A1
patient when it comes to taking anti-virals. My response to that was I’ll be an
A1 patient when I get an A1 doctor and never went back after that.
It was roughly
around this time that I went for hypnotherapy to try and get over how angry I
was with what happened at St Thomas’s. I was told that I should take the anger
down a level to just being annoyed and that doctors aren’t infallible they make
mistakes and it seemed to work until I hit the same brick wall when I was at
Queen Elizabeth Hospital.
I did take one
piece of advice from that therapy session and that was to write down what I was
feeling or what I needed from my consultant and so in June 2008 I wrote a
letter to the consultant agreeing to go back on medication, by this time my CD4
was down to 29. I was given two choices I could start on a lower dose,
something I asked for two years previously when I first transferred to Queen
Elizabeth and was told no, or hit it hard by going on a higher dose.
The Fights
After a talk
with the adherence nurse specialist and feeling comfortable after being
reassured that if I had any problems with my medication I should hesitate to
ring the hospital I opted for the higher dose but after three days of being on
it I was suffering from some serious side effects. I rang the adherence nurse
specialist and the response I got was, “This doesn’t happen to other patients”
and had the phone put down on me. This was after explaining to her that I had
previously been diagnosed with pancreatitis. Once again I had no choice but to
stop medication.
The consultant’s
response was no better when I saw her a week later. I was accused that maybe it
could be psychological. There was nothing psychological about my sugar levels
going into double figures, my metabolism going ten to the dozen and being sick
two minutes after taking medication, I was bringing up bile and two minutes
after eating my breakfast I was really hungry again. But it fell on deaf ears
and so I ended up using blackmail and refused to go back on meds until I had
spoken to someone from the diabetic team. I did see the diabetologist there,
that’s was the very first time someone actually told me my diabetes was due to
drug induced pancreatitis. The diabetologist also informed my consultant that I
was right to be concerned the effects anti-virals have on my diabetes, as left
unchecked diabetes is just as deadly as HIV if left unchecked.
Up until October
2009 I thought I was a so called unique case, I was even prepared to let go of
my anger as I was transferring my medical care back to St Thomas’ (a consultant
there had heard the problems I was having, he had read the article I did for
NAM and had agreed to see me).
Then I broke out
in shingles that’s how stressed out I had been about the whole thing, the
doctor explained to me why I might be having trouble with certain medication
and it’s all down to my genetics and something called micro toxicity. Thinking
that this was something new I did a Google search and found out that this
information has been around as late as 1999. Along with articles on HIV related
diabetes: A Complex Interaction between liver damage body mass and genetics”
and was reported by NAM way back in 2004.
I have had to go
through hell and back with no proper support to get to where I am now. Not only
has this had an effect on my health it also affected me on an emotional level
and it had an effect on my relationship with my partner as we split up after
eleven years. I don’t normally get violent but because of all the stress I was
under g it was having an effect on my adrenaline levels which as we found out
was having an effect on my sugar levels and because my partner was defending
the consultant I was seeing as he hadn’t had any problems with her we ended up arguing
and I got to the point that I actually went for him.
The first time I
went for him was New Year’s Day 2010, we had had an argument the night before
over the TV, there was more to it than that but that was the final straw and on
New Year’s Day I just went for him. The only reason I stopped was because I was
going to hit him over the head with a chair and so I walked out the house. The
only trouble I was so pumped up that if anybody had said a cross words to me I
would have gone for them.
The second time
I went for him I nearly put his head through the bedroom floor and the only
reason I stopped was because he bit me and that’s when we realised something
was wrong. In the eleven years we had been together I had never got violent
towards him. This was no ordinary case of domestic violence it wasn’t until the
third time I went for him I managed to pick up a chair in one hand turn it
round and ended up pin his head against the wall. That’s when I ended up doing
a search on the Internet and I came across the effects of adrenaline on
diabetics.
Adrenaline is a
chemical that is produced by the body when it thinks it is under attack that is
why you get adrenaline junkies because the rush can leave you feeling high.
Stress can also cause adrenaline to rise the only trouble is adrenaline cannot
tell the difference between a diabetic and a non-diabetic and that’s where the
problems start and what was even scarier about the whole none of the
professionals took any notice despite a community psychiatric nurse visiting
our home and she must have notice the damage that had been done. It wasn’t
until I rang the hospital and told my consultant at the time that I was getting
violent that anyone intervened but as usual it was too little too late and that
was when I made one of the toughest decisions of my life and after eleven years
of being together I called time on our relationship because I didn’t trust
myself when it came to my outbursts of anger.
How My Past Helped Me Through
When I first
became HIV I ended up going for counselling. It wasn’t just about dealing with
HIV it also helped me get over my low self-esteem caused by what I went through
with my parents when I was younger.
My adoptive
mother was warned about taking a mixed raced baby into a white family as there
could be problems. And oh boy were they right, I could understand being picked
on at school because of my colour but to have to go home and face it especially
off my younger brother and no one done anything about it.
One of the
questions I was asked was why didn’t I get angry at my parents for the way they
treated me and my response was no matter how bad things are you always respect
your elders and that’s how I saw doctors.
I was taught how
to do the circle in cognitive therapy, I tried applying it to the situation I
was in with doctors but it didn’t seem to work or so I thought because I found
myself comparing to what I was going through with what I went through when I
was younger.
My birth mother
gave me up for adoption because she thought I would have a better life my
adoptive mother was given that trust to look out for me and she didn’t she
buried her head in the sand and I ended up suffering because of it.
The same thing
happened here I was told that I could trust Dr Bubu, I was also told I could
trust Dr Mitchell instead I got the exact opposite but instead of bottling
things up I fought back and in some strange way I found the strength to do that
by confronting my past.
And as hard as
it was remembering what I went through when I was younger it helped me fight
back and I did it on my own.
And The Fight Continues
It’s like the
other day I received a Depression Scale form through the post because I’ve been
prescribed antidepressants. I ticked all the relevant boxes then after reading
through it I realised that all the questions asked how you are feeling yet
there wasn’t a question on why you feel that way.
The reason I’m
feeling the way I am isn’t because I’m depressed or the fact that I’m living
with two chronic illnesses I’m feeling this way because the NHS let me down and
put my life at risk. Not only that the damage that has been caused some of it
is irreversible. At times I feel like I’ve gone through a car crash, at least
if I had been in a car crash people could see the trauma that’s been caused and
I would get the support that I need to get my life back on track. Instead I’ve
had to do it on my own. Not only that the lack of consistency in my care
doesn’t help either, if I can’t get the ‘professionals’ to understand just
because we are diabetic we are still individuals and what works for one person
it doesn’t necessarily mean it’s going to work for everyone else.
The
‘professionals’ can’t even agree on what our sugar levels are at or what diet
we should be following. Here are two good examples. When I first become
diabetic I was told by my diabetic nurse that my sugar levels should be
slightly higher that someone who isn’t HIV because my body is working overtime
because of the anti-virals, I was also given this advice last year by one the
diabetic doctors at St Thomas’ Hospital. I tried telling this to one of the
consultants at the hospital and he wouldn’t have it despite the fact that I
become Mr Hyde when my sugar levels fall below 5 and as usual I got the same
old crap that it’s just my body adjusting to the lower levels.
Try telling that
to a policeman when I get arrested for thumping a complete stranger in the face
because their baby was crying. “Oh excuse me officer I was having a hypo!” I
haven’t actually done it but I came close to it the other day though when I was
on my way home from my friends’ house.
I was on the 188
everything was fine, was in a nice relaxed mood. Then someone got on the bus
with a baby and half way through the journey it started crying normally I would
just ignore it but the more it kept on crying the more agitated I got, then
someone started talking on the phone and the noise just seemed to have
intensified and I just wanted to tell everyone to shut the fuck up. When I got
home my sugar levels were 4.5, I wouldn’t have minded so much if hadn’t been
for the fact that for breakfast I had two slices of toast, two boiled eggs and
a bowl of cereal.
The other
example is how the ‘professionals’ can’t seem to agree which diet to follow
either everyone in the profession has been saying we should be eating plenty of
carbohydrates, now the only problem with that is eating to many carbohydrates
as recommend by the NHS and the government would be like drinking six cans of
coke and the consequences of that leads to high sugar levels as I found out the
other day. Wanting something to snack on I decided to go for a healthy option
and brought a packet of those Ryvita Thins that they have been advertising on
the television recently. Not giving it a second thought I started eating them
as I was working on this before I knew it I had gone through a whole packet.
Half an hour later I felt drunk, I did my bloods and my sugar levels had shot
up to 17. I ended up falling asleep and my friend had to put me to bed as I was
so disorientated. It took me two days to get over that.
Now some in the
profession are saying we should be following a low card diet, which makes more
sense and though it makes more sense so yet again the goal post have been
changed.
Getting Family and Friends to Understand
One of the
questions on the form asks do have thoughts that you would be better off dead,
my answer is yes I do and it’s not because I feel depressed it’s because I’m
having to deal with an illness where the goal post are constantly changing and
I wouldn’t mind if it didn’t have to involve family and friends.
It’s bad enough
having to get your family and friends why you have bad mood swings the worst
one is when you find yourself becoming introverted and switching off from
everything despite explaining it to those close to you whether it be friends,
family or partners well in advance that you do get days like that they still
find it uncomfortable like they have done something wrong which becomes
frustrating for the diabetic as it ends up making them feeling bad.
No Pressure Then
Part of the
reason a someone with a chronic illness finds themselves wanting to switch of
is because the whole thing can leave you warn out and there is nothing you can
do about it because you don’t know when it is going to happen. So imagine what
it’s like living with two!
It’s like a
friend of mine he does shift work and he can’t understand why I’m so tired all
the time despite me trying to explain the reasons why. The reason I get tired
so much is because my internal organs are on constant overdrive and as much as
I try to live a normal live there are times through no fault of my own when
having two chronic illnesses to deal with is going to take its toll no matter
how good you are at managing things, the only trouble is you don’t know when
it’s going to happen.
Another problem
with all of this is the constant pressure we are under to get our sugar levels
below a certain figure we are under pressure to keep fit. I have come to
realise that I don’t have the same energy levels that I did when I was first
diagnosed with diabetes, it’s all right for someone to sit there and say “we
should be doing 30 minutes of exercise a day but it’s not always possible and
we shouldn’t end up feeling guilty because we aren’t well or the weather is to
hot or too cold.
Making A Change
There’s a strong
sense of feeling that we are being treated like guinea pigs, HIV medication may
be keeping us alive but it’s causing other problems as well and there seems to
be no back up when situations like these arise.
I can’t change
the past; once again I’ve got to live with the damage that has been done not
only on a physical level but on a psychological level as well, for the past
twelve years I’ve felt like I’ve been on an emotional roller coaster ride and
though I’m in a better place now, I have a very good consultant and a very good
diabetic nurse, (they both communicate with each other and take on board what I
say and I’m not expecting them to have all the answers)..
I’m also
beginning to realize that the one size fits all attitudes doesn’t only apply to
HIV it seems to apply to diabetes as well and that isn’t good for the patient
especially when they have two chronic illness to cope with. Some good has come
out of this in knowing that I wasn’t asking for too much and I have a letter
from an MP to back me up.
Taking an Holistic Approach
In the last
decade the government and the NHS have been promoting a ‘patient-centred
approach’ to health care which encourages ‘expert patients’, previous
experience has shown that some healthcare professionals are unable or unwilling
to deal with patients that do their own research and come to consultations with
more information and questions than the ‘professionals’ can deal with. Rather
than collaborating with the patient and help them set up a link with the
different specialists we end up being bounced around from one doctor to another
and none of them have a clear understanding of all the patient’s conditions and
how they (and the medication that treats them) might impact upon each.
It’s no good
getting the healthcare professionals to take a more centred approach if the
various support services don’t take a more holistic approach to the service
users that access their services. Not everyone who wants counselling has issues
around family, sexuality or drug use and I’m a good example.
My issues centre
on what I’ve been through and the damage it’s caused some of it irreversible:
- I feel like I’ve been on a non-stop roller coaster ride these past twelve years.
- At times I felt like I’ve been in a game of Russian roulette and I wasn’t the one holding the gun.
- I feel like I’ve been robbed of something and that is time.
- I feel like Humpty Dumpty who’s fell of the wall and I’m having difficulty putting the pieces back together again.
- And on top of everything else there’s a sense of guilt.
