Living with CVS
How
would you feel if you suffered with attacks of...?
-
Severe, constant, unrelenting nausea and vomiting.
-
Vomiting up to 6 times an hour for days or weeks at a time
-
Nauseas and retching daily often violent & incredibly painful
-
Severe abdominal pain daily known as abdominal migraine from the moment you
wake up
-
Pallor, often extreme paleness of the skin
-
Headache often migraine
-
Lethargy, unresponsiveness or blackout during attacks described as conscious
coma
-
Dizziness and shaking
Well
this is what I suffer with and I have had it for 23 years. It's called CVS or
Cyclic Vomiting Syndrome, its rare and very little is known about it. It is not
known what causes it but in a small sub-set of sufferers a mitochondrial DNA
mutation it thought to be to blame. For many of us with CVS there is nothing
obvious that starts an attack for others specific triggers can be found.
Stress, excitement, virus, some foods and alcohol are some of the triggers but
many people with CVS find there is no cause. It has been classed the most
severe form of vomiting in humans and there is no cure.
Just
imagine for a minute how you would feel if you were in such pain you thrash
around for hours, you’re so sick you can't even keep water down, you wake up on
the floor after collapsing, you don't know what it is and when you go to the
hospital and doctor your pushed away and branded a liar? That is what happened
to me for 16 years until my diagnosis in 2008. It wasn't the doctor that found
out what was wrong with me it was my Mum, with her determination I now have a
diagnosis and my life of fear is over. With the help of family, new Doctor and
others with CVS I'm now learning how to cope with this awful illness and 5
years on I'm being treated, but it hasn't always been this way. Here is my
story about my long battle with CVS.
It
all started 23 years ago when I was 14 years old. My Mum and Dad were getting
ready to go on holiday the following day and all of a sudden I started to be
violently ill. I was ill all night and in lots of pain but the next day I was
fine. We thought it was a bug or something I had ate. As time went on the same
attacks came along more often and they lasted longer each time. We knew it
wasn't a bug so what was it? I went to the doctor and he thought it was linked
to my cycle because they were coming every month, so he put me on the pill in
the hope it would regulate my cycle, but nothing worked. In the coming years
the pain was so bed during attacks that I would go to the hospital hoping they
could find out what it was. I had several tests, bloods taken and scans but all
came back negative. In time the Doctors and the hospital staff started to doubt
I had anything wrong with me. I have had Doctors say it's all in my head, I've
had nurses telling me to shut up because I'm making too much noise, a doctor in
the hospital even gave me water instead of morphine to test my reaction, I've
even been left on the floor after collapsing because they thought I was faking.
It got to the point I was even questioning my own sanity and wondering if it
was all in my head but deep down I knew it was all happening. I knew it was
real and so did my family.
In
the coming years I had 3 children Sasha in 1998, Liam in 2000 & Aaron in
2002. With all pregnancies I had morning sickness right the way through. Just
after Liam was born I had one of the worse attacks I've had, it lasted over a
week and I wouldn't go into hospital because of how they treated me. As a
result I dropped from 7.5 stone (105lb) to 6 stone (91lb) I was so frail I
could hardly walk, and still the doctors didn't believe me. I suffered many
years of disbelief and scepticism from medical staff which effected my
confidence in the so called medical professionals. Why do I feel so guilty
about being ill? Why am I made to feel like a hypochondriac? Why Oh why? I ask
myself time and time again. Having CVS is not a pleasant thing, but knowing
that whenever I have an episode, I am going to be treated so poorly, does not
make it any easier to deal with.
I
will describe one of my typical episodes…
I’ve
been tossing and turning all night unable to get much sleep, I wake up in the
morning feeling extreme nausea and pain. I go into the bathroom and try to have
a cold wash. It doesn’t work and I feel like I’m going to be sick. I start to
vomit so I go back to bed with a sick bowl. The pain starts to get worse and
the vomiting by now is coming every 10 minutes. I try to take a bath, it helps
a bit but not for long. I’ve been vomiting now for hours and there is no sign
of it stopping. I start to vomit blood so my partner calls the ambulance
because I have no other way of getting into hospital. The paramedics arrive and
give me gas and air for the pain. I arrive to the A+E early afternoon. I tell
them I have CVS then comes the question “what is that? I’ve never heard of it”
30-40 minutes later I see a different nurse, she has seen me before for the
same thing so doesn’t take much notice because she thinks I‘m self-inflicting.
When I’m eventually seen by a doctor I’m given pain relief through injection
and I’m put on a drip to regain some fluid. I’m sent for scans and blood is
taken for testing. I’m still vomiting every 10 minutes. It’s now 10:00 pm and
I’m still vomiting and I’m in awful indescribable pain, I just want to curl up
and die. I’m moved to a ward I have been to before and I am greeted with “Oh OK
it’s you again is it” Some staff are great, others think you’re putting it on
to get drugs or attention and they are cold and hard faced. It’s hard lying ill
in bed while people don’t believe you. I’m even refused water because they
think that I’m drinking it to make myself sick. I’m given pain and ant sickness
medication for days but nothing works. Finally on day 4 things start to calm
down, my colour returns and I can finally eat something. I’m sent home later
that afternoon. It takes 3 days to get energy back and feel slightly normal
again.
In
2008 while researching my symptoms my Mum came across the CVSA-UK website and
realised this is what I had and this is the reason all tests came back
negative. I went straight to my doctor with the news. I could see he was
shocked but even then he didn't believe it. He said “if that’s what you want to
call it then fine" I was so upset, all these years of being ill and now I
had an answer he still didn't want to listen. Reluctantly he started treatment
for CVS and things started looking up. 18 months later at an appointment with
the doctor he asked me straight out if I was anorexic, which was the last straw
I wasn't being treated like this anymore, so I changed my doctor's surgery.
Since changing my Doctor things are starting to look up. They are taking me
seriously and helping me as much as they can. I still get treated badly
sometime when I go to hospital but it's because my record is now marked. Being
labelled a drug seeker or faker is hard but I'm learning to ignore it better.
Having CVS is bad enough without having to go through negativity from medical
staff.
I'm
now trying to make the most of my life with my wonderful family. It's hard for
my children to see me like this but they help me in ways they don't even know
every day. They have all had to witness me go through attacks, something they
shouldn't have had to do in their short lives but they are so strong and I'm
very proud of them all. My partner has stuck by my side all the way through and
for that I am so grateful. If I didn't have my family I would be lost. I have a
CVS group and page on Facebook with lots of other sufferers from all over the
world and their support is a great help. I'm not having as many full attacks
but I suffer with pain and nausea every day, I vomit for anything between 2-5
days a week and I get full attacks 1-2 times a month which can last days. I'm
on lots of tablets to combat symptoms and attacks. I spend my days researching
CVS and supporting others with CVS as well as looking after my family with the
help of my partner.
I
hope one day they find a cure for CVS but until then I'm going to keep
fighting. If you suffer with CVS please get help and change to another doctor
if needed don't suffer like I did. CVS is an awful disorder and not well known.
We need to raise awareness of CVS so others can get the treatment they need.
My
last word is to the medical staff all over the world is...
PLEASE
TAKE US SERIOUSTLY, CVS IS REAL, PLEASE TREAT US WITH A LITTLE RESPECT.
TO
ANYONE WITH CVS YOUR NOT ALONE, I KNOW HOW YOU FEEL.
By
Angie Crooks 2015
