This week I am going to take a slight
diversion from my normal knitting talk, and share a bit about my experience of
Lupus. October is Lupus Awareness Month
and there have been a few articles floating around on the net – especially
since Selina Gomez has been diagnosed with the disease.
So what is Lupus? Lupus is an auto
immune disease – basically it’s your own immune system turning on itself and
attacking like it’s a storm of Orcs in the Lord of the Rings! Mind you the most distressing thing about the
disease is that you never know where it’s going to turn up – some people have
rheumatoid arthritis, some have chronic skin rashes and some, like me are
unfortunate enough to sustain organ damage.
It’s a nasty disease, which is only really just being
understood.
Each Lupus sufferer has a different story
to tell – and yes they can be so different that you may think they are
suffering from a totally different disease – but each one of us can tell you
how much it affects every aspect of your life.
I was diagnosed finally at the age of 24,
after having 2 years of seemingly constant illness. Every six weeks or so I would get a ‘stomach
bug’ which would put me to bed for 2 or 3 days and take a further 2 or 3 days
to get over, with terrible headaches, vomiting and urine which looked the same
colour as a class of Coke. Each time
would be worse than the last, but although I was ill I still looked really fine
– no particular weight loss (I was slim at the time already) and because I was
fairly fit at the time too, I bounced back quite quickly.
So I kept on working and struggling to
maintain some semblance of normal in my life.
I had just got a really good job where I was travelling around the UK
and I put on a brave face. But it was
terrible – I would be throwing up at work and back at the hotel at night. I remember one particular time being so ill
that I actually threw up in the reception of a hotel (The Cumberland in Oxford
Street) whilst trying to check out – to the chorus of disapproving “Should not
have drunk so much last night”…………… why, when seeing a young woman clearly
sick, do people think you have been drinking or are pregnant! Work was no better – they accused me of taking
too much sick time and because of that they were going to give me a poor
performance review – clearly they thought I was making it all up because I ‘you
look well – you don’t look ill’ – but the reality was that each day was a
monumental struggle to get through and I did not know what the heck was wrong
with me. Doctors made some wild
assumptions including Porphyria – the same disease that ‘Mad’ King George had
in the 18th Century! I was put
onto antibiotics and went for many blood tests but to no avail.
Eventually one foresighted doctor referred
me to the Royal Airforce Hospital, Halton, Renal Unit. There I had 3 kidney biopsies and eventually
they came to the diagnosis of Lupus! I
of course had never heard of it! My
consultant, Wing Commander Rainford, specifically told me NOT to go off to the
library to look up Lupus! So what did I
do…………yes you have guessed it – I went off straight there and saw in an old
book that Lupus was uncurable (yes that’s still the case) and that most people
died within 2-3 years of diagnosis (wrong wrong wrong!) – well, as you can
imagine at 24 this was pretty devastating!!
Of course then, as now, progress
was being made all the time and now 25 years plus later – I am still around
(well not without some other major health issues – but I am still here!!).
So the great thing was that I was no longer
going to being sick every 6 weeks – this was going to make my life so much
better – yes! …………………NO! Instead I had
to take a cocktail of drugs to keep my immune system in check – including the
heinous Prednisolone!!
Prednisolone made me fat, made my face swell,
made me even more tired, made my hair brittle and made me super sensitive to
the sun (added to the fact that Lupus makes you sensitive to the sun
anyway!). Vitamin D made me itch – itch
like there was no way of ever escaping (in the end I refused to take it!!) and
other immunosuppressants made me break out in warts!
Coupled with regular trips to the hospital
(which was over 80 miles from my house), sometimes as an inpatient and
sometimes just for a check up, I found out what it was like to have a Chronic
disease.
I was 24 – my life was ahead of me – a life
which was now going to be dominated by illness (and still is to some extent,
although I have had to learn to live with it!)
I had a disease which no one understood which made me look well (note
‘wow you have put on some weight in your face – you ARE looking well’!!) – with
no idea where it was going to lead me. I
wanted children – that was going to be pretty much out of the question now. It
was all pretty gloomy.
I’d like to tell you it all ended with a
happy ending – it didn’t, it doesn’t…………..
My symptoms came and went over the next 5 years– sometimes my Lupus was
really raging and I would be ill again, and sometimes it would be in respite
for a couple of months. I never knew
what it was going to do next. My periods
were heavy, I had a rash on my
face, I was tired, I got migraines – we
never knew if it was Lupus or something ‘normal’.
And then when I was 29 I got pregnant! Lupus was pretty quiet at the time, I was
‘just’ tired and picking up every cold going – but aside from that the Doctors
agreed that with care we could proceed with the pregnancy.
I am not going into the details too much
but Lupus was sited as the reason I got pre-ecplampsia, delivered a month early
and why I was carrying the Streptococcus virus which passed to my unborn
daughter in the birth canal, and why she died 12 hours later……………… Her death certificate sited cause of death as
‘Lupus’. Whilst she may not have had the
disease herself – it caused her death.
I was of course devastated, I felt like I
had let my partner down – of all the people he could have chosen I was the one
who was sick, who had caused the death of his daughter – I was not in a good
place.
Lupus is an evil disease and preys upon you
when you are at your lowest! It flared
up (Lupus ‘flares’ are those times when the disease is active) and I was very
ill – mentally and physically. Wing
Commander Rainford told me that the only thing to do before too much more
damage was done, was to put me onto Chemotherapy (Cyclophosphamide, same drug
as is reported Selina Gomez been given).
Now this was not the intensive chemo that cancer patients have to bear,
but was a once a month trip to the hospital for over a year to have a cocktail
of lethal drugs which made me feel absolutely vile for 2 or 3 days (and
although I can hardly believe it now, I drove the 80 miles there and back each
time!!!). Thankfully I have a mad mop of
hair and I did not lose too much, but I
went back onto steroids as well – a low time.
It was then that we decided to get married
and right up until 1 week before the wedding, we did not have a photographer –
I did not want photos of me on my happy day, looking so awful. We did go ahead and get a photographer and
even now when I see my wedding photos I feel a flutter in my stomach – this was
not how it was supposed to be – I was supposed to look like my friends did on
their wedding days– the gorgeous bride………….I wore a big hat to try and hide my
huge moon face. Yes you might say that
that’s very vain of me – but this disease had chosen me – it wasn’t fair, why
had it not chosen anyone else – pointless thoughts of course.
Fast forward four years and Lupus had finally
gone into remission. The disease had
only affected my kidneys (not sure if I should be thankful for that or not) and
RAF Halton had closed down so I was referred to the only Lupus unit in the country
at the time at St Thomas’ Hospital under the care of Professor Hughes – the UK
pioneer of Lupus research. Professor
Hughes agreed that we could try for another baby so we did just that and fell
pregnant very quickly. There were lots of complications in the pregnancy, but
our daughter Florence was born 8 week premature at St Thomas’s hospital on 27th
December 1996.
And then my kidneys completely failed………………………………………and
my Lupus completely disappeared from my system – like the Orcs, it fled leaving
devastation behind!
I have had many more problems since then
(Dialysis, Transplant, Cancer – I can save those for another day!) Lupus is a
devastating disease and its twists and turns can be cruel and unpredictable. I am the lucky one, I got my transplant, I have a beautiful daughter and son (born after my kidney transplant) - I consider myself lucky - others are not so lucky.
I wish Selina Gomez the very best, my hope is
that she can do more to promote understanding and research into Lupus – but
give her space, somedays she will be looking her usual glamourous self, but
underneath she will be a vulnerable 23 year old, who is tired beyond anything
she has ever felt before and getting to grips with the fact that her life will
never be the same again.
My heart goes
out to her and all my fellow sufferers throughout the world in this awareness month.
More information on Lupus can be found at:
