Living and coping with lupus – our story
It was the October of the year 2000. I was twenty years old and just signed up to a singing class in London. I am originally from Bristol and came to London when I was 18 to pursue a career in music.
As an eager pupil, I arrived early for the first class and was waiting outside the room while the tutor auditioned prospective students. I was standing at the bottom of a long corridor in Goldsmiths College, leaning against the wall, trying to act cool, people watching as students made their way around the university.
I noticed a girl hobbling as fast as she could down the corridor in a panic. As she approached me, wincing with pain, out of breath and looking like she was about to collapse in a heap, she asked if she was late for the auditions. I calmed her down saying the tutor was still auditioning singers and thought it best for her to wait. Suddenly a look of horror came over her face. “My music!!” she gasped. “I’ve forgotten my music!!”. "Not a great start" I thought to myself but supportively suggested she sing something she knew a cappella.
After a few moments deliberating she decided on ‘Summertime’ and waited nervously for the tutor to invite her in. It turns out she didn’t know 'Summertime' that well after all... She sang the first line then forgot the words! Thankfully the tutor was very accommodating and allowed her to stay for the first session to see how she got on as he could hear that she had a lovely voice, just wasn’t that prepared...!
Thirteen years on and this girl is now my wife. We have been together for over twelve
years and happily married for five and a half. Needless to say, Carol was allowed to stay on the course. It transpired that she has the most beautiful voice.
So, a few months passed and after hearing me play piano she asked if we could sing together. I was delighted. We used to meet before class to practice and became good friends almost immediately. Something just clicked. After class one week, she asked me on a date. Now, she will protest that it wasn’t a date, but put it this way, she told me there would be a group of us but surprise, surprise her friends didn’t turn up and so it was just Carol and I having a Pizza Hut and then watching a movie at the cinema.
There are a couple of things that stood out to me about our 'date'.
1) I remember us walking through the car park of the cinema and Carol holding on to me walking quite slowly. As we approached the curb she made a point of navigating to the lowest part to avoid taking a big step.
2) The film was Hannibal - not a great date movie, although I assumed she had planned it so she could act all scared and grab hold of me, which she did, although there was no chance of us smooching in the back row as she was wrapped up like she was about to undertake an expedition to the Arctic.
To me Carol seemed vulnerable and I enjoyed taking care of her, giving her lifts, taking her out. We continued to spend more and more time together and very quickly became the best of friends. It was obvious to those around us that we had strong feelings for each other and after a while we soon realised ourselves and consequently spent hours deciding whether we would make a go of it and start a relationship. It was during these conversations that Carol opened up and divulged more about her illness, her fears for the future and the pain of the past. What if I couldn't cope with her illness? I was only 21 and she feared I would soon rather be out 'enjoying myself' and not caring for my sick girlfriend. What if we broke up and it ruined our friendship?
Carol had joined the singing class at Goldsmiths back in 2000 as a way of rebuilding her life after falling ill while at university in 1997. She had always loved singing and after
spending three years in bed, alone, she needed something positive to focus on and encourage her to get out there and meet new friends. It had taken nearly three years for
her to get diagnosed. She had been so ill and so tired that she had spent literally three years in bed and in doctors surgeries being pushed from pillar to post.
University was a distant dream and her so called friends were too busy getting on with their own lives with no time to visit Carol. She felt her life was wasting away and after finally being diagnosed with Lupus, and referred to the Lupus Unit at St Thomas’ Hospital in London, they were able to treat her. Carol had finally got to the point that if she rested enough she could make it to her singing class once a week, just down the road.
I soon realised the reasons behind my observations on our 'date'; She was holding on to me crossing the car park as she was getting tired. I remember almost dragging her into the cinema. Carol hates stepping up on to the pavement as her knees are always sore. Stairs are also really difficult - we've since bought a cosy one bedroom flat all on one level! And, the cinema attire is a common occurrence as even now she wears her thermals and takes a blanket to the cinema because of the air conditioning.
In fact Carol is always cold. Winter, spring, summer or fall, Carol will be dressed in thermals and sleeping with a heat blanket. Anyone would think I married an 80 year old!! Most nights I will wake up to find her in the lounge next to the heater trying to cope with her joint and gland pain.
And the hobble I noticed from our first meeting at Goldsmiths... Carol usually walks with a limp due to her joint pain. Random people often ask what's wrong with her foot. You can't blame them, they aren't to know. They can't understand why this seemingly fit, beautiful young lady is walking like that. And finally, forgetting her music... Carol can get forgetful, especially if she is tired.
So it's been 12 years of us living with Lupus. I say 'us' as although I don't suffer with the illness myself, it effects both our lives in good and bad ways. Carol's main symptoms are her joint pain and fatigue along with hair loss and skin rashes.
My wife is stunning. I know most husbands say that about their wives, but trust me, she is beautiful. Yet still Lupus has a nasty way of knocking ones self-confidence and self esteem.
Carol worries about her hair constantly. “Do people notice?” “Can you see anything bad?” And if she is having a flare she will spend even longer getting ready trying to hide her rash and dry skin. And we know how ladies like to take their time doing hair and make-up anyway!!
People find the fatigue hard to understand - How can someone sleep and rest all day and still be tired? Carol is therefore unable to work. This is what she finds most difficult – not feeling that she contributes. Little does she know the support and love that she has given me over the years is worth more than any amount of money. But it is still difficult. I can't imagine being 35 and not being financially independent, knowing that whatever I buy is with someone else's money. This is the main reason behind her feelings of guilt.
The truth is that day to day her illness changes. There is no rhyme or reason. She has tried working but either never makes it in or just gets too sore or tired to finish. She could take more steroids but the last thing I want is for her to take more medication. Who knows what the side effects will be in years to come.
The steroids make her put on weight, she gets depressed as she can't exercise, her self-esteem plummets and they don't even make that much difference. She would need to take such a high dose that I fear what they would do long term. Even now she gets stomach pains because of the tablets and pain killers she has to take.
For me the hardest thing is watching the one you love most suffer. It's so upsetting to watch her live day to day in pain, see her disappointment when we are out with friends and have to leave early as she gets tired, knowing how lonely she gets when I am working and she is in bed all day finding it hard to cope staying on top of things. Thank God for her iPad. That was the best Christmas present I bought - it keeps her company.
I feel very guilty when I have to work long hours and having my own business means I am often working in the evenings and weekends. If I call home and can tell she is having a rough day I wish I could just leave and be with her, but it's not always practical. You feel helpless, frustrated. But as we only have one income I need to work the hours to provide for us. It's a huge responsibility and very stressful at times.
But there are also positives. Carol and I have had a truly wonderful time together and feel very blessed. Because she spent so long alone in bed when she fell ill, not believing she would leave the four walls of her bedroom, she enjoys all the little things most people take for granted - long drives, watching the seasons change, sunsets, going to the shops together.
The fact that Carol is unable to work has enabled us to spend quality time together. During the first couple of years we were together I spent a lot of time in New York doing music out there. Carol was able to travel with me and we look back fondly on those times. We were only young when we met, but over the years have been able to travel and experience so much together. She would never have been given time off if she was working.
As I am also self-employed we can spend birthdays, anniversary and special occasions together and in the mornings have breakfast and then lunch with each other as often as we can. We make the best of a bad situation.
I now run singing holidays in Barbados where Carol's family are from. We created the holidays as Carol's health is so much better in the warmer and more humid climate. She says that it's like being in a bath as the heat soothes her aching joints. It's wonderful to see her walking straight without the hobble. Her confidence shoots through the roof as the thick cardigan, thermals and scarves she wears are replaced with dresses, vests and skirts. She feels feminine.
Awareness of lupus is not as high as with other illnesses, people do not understand it.
How can you be well one minute and not the next? Can't you just take some pain killers for the pain? Friends are very sympathetic but no one really knows what Carol goes through behind closed doors and how her life is affected. Lupus is also generally one of those illnesses that you can't see.
I'm getting much better at not overreacting when people stare at us with a look of distain or comment if we use a disabled bay with Carol's blue badge. They just see a young lady, no limbs missing, no wheelchair and don't realise that by the time we have walked around Sainsbury’s she won't be able to make it back to the car without me there. I can't help but be over protective.
I worry about her going out on her own as when she gets tired she loses concentration and can get confused. Carol does make a fair few mistakes, don't we all. But with Carol it's when she is tired and gets forgetful or her brain is not functioning 100% if she starts to fade.
Sometimes she feels she cannot trust herself, but it's about recognising if you are going through a bad patch and resting - easy for me say as the last thing Carol wants to do is rest! She wants to get up, play basketball like she did at university, jog with me in the park, cook a fancy meal and not be so tired come the end that she can't enjoy what she's prepared. She wants to go on a shopping spree with money she has earned and so not feel bad, she wants to buy me my Christmas present with her own money and not my credit card, she wants to feel she contributes to society, is an equal. She doesn't want to worry about being a bad mother (when we start a family) because she is too tired to play with the children or pick them up from school.
What she doesn't realise is living and coping with Lupus is a massive achievement and she has so much to be proud of. She has astrength like no other. She is not only a wonderful human being, but my inspiration.
Carol has always been creative and has recently started to make jewellery. She is so talented and really enjoys it. I see it that Lupus has given her the opportunity to try
something she may never had chance to do, and who knows where it will lead. The reality is we are a team and will work it out.
I wish she never had Lupus but I wouldn't change her for the world and part of who she is and how she looks at life is because of what she has been, and continues to go, through. I am honoured to be her husband. I am immensely proud and have huge respect for people who suffer with long term illness.
She amazes me with how she deals with her Lupus and remains so positive. Yes, there are the rock bottom moments and life is a challenge but we get through it and it makes you appreciate the good things, and each other, so much more.
We focus on the positives and have lots to be thankful for, after all, if she never had Lupus we would never have met
By Mike King, Ambassador St Thomas Lupus Trust.