Page 36 - N&V Winter 2019

Cheryl Marcus - A personal view

The following article is based on a talk I gave last year at a
“Lupus and Hughes Syndrome” meeting. I do hope that maybe
some of the experiences I have been through will be of some help

Briefly my lupus history started when I was painful and worrying symptoms.
25, in 1975. I was married with a baby An added aggravation is that the lupus
son. I then became desperately ill with patient on higher doses of steroids has to
many awful symptoms and this was to lead
eventually to a diagnosis of lupus. Sadly I face the weight gain problems, the moon
then spent many months in hospital being shaped face and often hair loss, and hair
massively over medicated with steroids growth in areas you don’t want!
and my condition not improving. I had All of which makes fighting the medical
major joint problems, severe skin symptoms harder. When I looked in the
involvement, continual infections and an mirror I felt as though I was looking at a
ESR that was through the roof. stranger. But I live to tell the tale! These
I was incredibly lucky that my late father are temporary problems that should be He also found that confiding in his boss
being a GP, after much research, was able addressed by your medical advisors and was an advantage, and he became more
to contact Prof Hughes who was going to the correct advice given. understanding if he had to take time off
then enter my life and gradually reduce I wore a wig for some time and became work. My parents proved a lifeline by
the steroid medication and introduce adept at wearing make-up - these may be selling their home and we sold ours, in
immuno-suppressants and anti malarials, minor things if you are healthy, but major order to enable us to buy a house
plus intense physiotherapy to get my if not. Your confidence can be boosted together so that they could help look after
mobility back and then very slowly I was so much. me and my little boy.
able to return home. It was beyond our expectations, but so
Although I have found that having lupus
I often complained to Prof Hughes about and using make up can also be willingly accepted. Some years later when
the loneliness of having an illness that I became stronger we were able to live
nobody seemed to have heard about, and infuriating, as often I am told how well I independently again and hopefully made
I did not know anyone else with lupus, so look when I’m having a really grotty day, my parents later years easier.
he encouraged me to do something about and would really like some tender loving
it!! So, after radio broadcasts, and a lot of care and sympathy. I’m sure many of you Martin found our friends and family were
letters a group was started that was can connect with that. all too willing to help and they would
eventually to become LUPUS UK. I have found having a hobby that will often feel hurt if we didn’t ask them, so do
take all the help that is offered.
divert me from my discomfort and worries
This was a lifeline for me. My husband He strongly believes that being able to
Martin and I meet up regularly with the very important in my life. Some
very first lady, Joyce, who responded to advertised regularly are art, pottery, pursue his own interests, whether it was
my radio broadcast for anyone with lupus book clubs, talks, language lessons, bridge, playing tennis, table tennis or golf or just
to contact me and we have become close antiques, and local walks. Anything you going out with his mates made life loads
friends. We are both so grateful to have can take an interest in certainly helps and easier for him. There is a tendency, which
found each other and know that in 1978 also puts you in contact with a different set must be resisted he says, to stop your own
neither of us thought we would see the of people and well away from the medical life, but this diversion means that you both
year 2019, so miracles have occurred in world, which can be overwhelming. stay sane and are more able to face the
both our lives, many miracles due to being I joined a local art group that I find difficulties of an unwell partner.
in the right place at the right time, but also really relaxing despite my being rubbish As I am writing this he is on the golf course
by being knowledgeable ourselves as to at it. I discovered a new art form called and before he left he made me a flask of
what steps to take with our lupus. “Cheryl Art”. As thankfully I am good at coffee and made sure I can navigate our
Coincidentally in the last three weeks we cake making, I take some along for the tea bungalow easily on my crutches. I’m sure
have both gone through hip replacement break and the proper artists now welcome he is enjoying his golf, while I am happy
surgery and our frequent e-mailing, me with open arms! having independence.
comparing notes has helped us both
greatly. And we have also been able to I asked my husband Martin what advice he We do try to live as normal a life as
give each other advice and keep our would give the partner or family of a possible, but accept and understand the
spirits up. We now look forward to lupus sufferer, as I worry very much about inevitable limitations.
meeting up when we can celebrate the toll it must take on him. We moved into a bungalow seven years
ditching our crutches. ago as my mobility was rather limited, and
He started by saying how hard it is living
Starting LUPUS UK played a major part in with someone whose condition is life is so much easier now, but the
my determination to get stronger and it unpredictable and you always have to be downside is having a kitchen so near the
certainly made for a more educated me. prepared for the unexpected. That often bedroom means that I sometimes raid the
I didn’t have time to feel sorry for myself means cancelled restaurants, holidays, fridge in the night! Not so good for the
and meeting other lupus patients was a seeing friends etc etc. Making sure that waist line!
major bonus. There have been thousands the journey for the medical appointments is So I do feel at almost 70 and having had
of patients since 1978 that thankfully do possible, are there steps at the station, if lupus for over 40 years, that I am in a
268C appointment out of
not face the isolation of a strange going by car is the pretty unique position to give my views on
sounding condition, plus, of course, all the rush hour, is there car parking? what sometimes I have felt were
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luPus uK NEWS & VIEWS SUMMER 2019