LUPUS: A Guide for Nurses
Living with lupus from the age of 12 years, I have found that you have to respect the condition you have acquired but not allow it to rule your life. Since lupus can mimic other diseases it can therefore produce a variety of symptoms. I could call myself lucky that I acquired the disease before I became conscious of my appearance. However I have still had to cope with symptoms such as skin rashes and hair loss which can lower your self-esteem and remind you of what you have to live with.
Depression, an unavoidable symptom, needs to be tackled since it can be responsible for prolonging a flare of the disease. Many factors can cause depression such as having to increase drug doses, trying in vain to cover up skin rashes with camouflage creams or just not being able to brush your hair for fear that the alopecic patch may get bigger.
Being a person that loves the outdoors, the sun has been my biggest enemy. However we are learning to respect one another. I have been lucky enough to visit South America and Africa, both equatorial regions! And I have learnt that if I want to remain happy and healthy sun protection is vital. I lead a relatively active life, I work with animals, I horse ride, work out at the gym, dance and recently hiked in the Andean Mountains.
Joint pains and lethargy, you may ask. Yes, I do suffer from both, but I find varying activity seems to help prevent my joints from seizing up, by keeping them supple. Lethargy is lessened by not overdoing exercise, but also not resting too much.
Finally, read books and articles on lupus but nothing can replace a person who understands and listens. Everyone is individual and the disease can affect us all so differently.
My lupus was diagnosed five years ago by simple chance and a wrong blood analysis being taken. I remember those first few months with my new label, which, although it explained so much of my past, was nonetheless so very daunting. I read all I could about SLE, but the more I read the more it seemed the future was bleak and I searched for all the reasons why it should be me!
For me SLE manifested itself in many ways - terrible joint pain, pleurisy, pericarditis, skin rashes, that overwhelming tiredness that only perhaps lupus people can understand, and weight loss. This all seemed like a lot of baggage to carry around for short and long periods of time. Lupus or SLE frightened most doctors who were aware only of the notes written in old textbooks citing it as a terminal illness. Life has to be adapted to it and many things were out of the question - children especially!
This last point was something I had not yet thought of or even questioned - but like anyone who is told they can't, they want! I have been on steroids more or less since my lupus was diagnosed, and what a transformation they made, but I was constantly made aware of the dangers of having a child. I had seen many doctors in different parts of the world and never knew that the very best were on my own doorstep - St Thomas' Hospital, London! I was referred to the Lupus Clinic and I have never looked back. 'The Team', as I call them, have changed my life - no matter where I now travel it is to them that I look for the answers I alone cannot find. They have seen me through many a bad moment, they have taught me to handle my own lupus, and they have also been tireless support with the arrival of my two daughters.
My first child (after a miscarriage and ectopic pregnancy) was born on 5 April 1996. My lupus had flared badly towards the end of the pregnancy, and with the advice of everyone my labour was induced early. Delivery was painful and very rapid, but Clara, a little girl weighing 2.5 kg arrived safe and sound - the hard part was over, I thought! But two days later, breathless and in a lot of pain, a pulmonary embolism was diagnosed and my stay in hospital prolonged. 'The Team' recognised the signs and acted so swiftly that disaster was averted. I returned to have my second child, only feeling safe in their hands. This time preventative action was taken during my pregnancy and extra care was given after delivery - Katya joined her sister on 24 August 1998.
I have learned a lot about being unwell, I have learned to face fear, I have gained a confidence that no matter where I am I can call and hear a friendly voice and get advice. I hope my daughters never face lupus, but if they do I hope my case will have made their lives just that bit easier.
When I first heard about the Lupus Clinic at St Thomas' - at a LUPUS UK meeting in fact - I was 35, single and not sure whether I'd ever have children. Only two years earlier in 1991, I was in constant pain and virtually unable to walk, having been passed from pillar to post for four years attempting to discover the cause of my multiple ailments. When I finally found out I had SLE I hunted out books that could tell me what on earth it was; they painted a bleak picture.
So, I was rather anxious when I went for my first appointment at the Lupus Pregnancy Clinic in the summer of 1993 but was immediately reassured to know that I was being looked after by specialists who dealt with this unpredictable disease every day.
Within six months of that visit I was married, pregnant and back for regular visits to Dr Khamashta and his team - not to mention the entourage of students and visiting doctors whose lessons on lupus also taught me a thing or two. An unexpected bonus of this continuity of care was that the blood clotting deficiency I'd suffered with all my life was spotted and finally diagnosed as Von Willebrand's Disease. This meant that the doctors who delivered my 8lb 11oz son Thomas were prepared when I haemorrhaged. This information throughout my pregnancies had been diligently monitored by Dr Khamashta and Dr Hunt, who really put my mind at rest regarding my aches, pains, rashes and blood problems - it's worrying enough just being an older mum.
My first experience of any serious illness was in 1989, when at the age of 47 I was taken ill with serious pains in my head. I was treated for migraine, sinusitis etc. and after seeing different doctors 8 times in 7 consecutive days I was finally admitted to hospital and a brain scan confirmed I had had a stroke. This wiped out my right visual field in both eyes and, to cut a very long story short, left me unemployable, unable to drive anymore and on the 'scrap heap'. Depression soon set in and other noticeable ailments like headaches, joint pains etc occurred more often.
I was under an ageing Consultant Neurologist, so my stroke at a young age was just put down to bad luck and daily Aspirin was prescribed. The headaches continued and my vision was badly affected, the feelings in my head were really weird, so I was referred back to the Consultant. By this time the aged person had retired and a new, younger version had arrived. It was noted that the blood taken from me at my first consultation had identified a problem but it wasn't followed up, so further blood tests were made. These confirmed I had the Antiphospholipid Syndrome, now known as Hughes Syndrome and I was swiftly introduced to Warfarin. A marked improvement was experienced, but unfortunately not to the extent that my sight returned.
Problems then arose in claiming Benefits, they would not recognise Hughes Syndrome or any connection to lupus, but they did recognise my strokes and visual problem. Other pain I was getting was put down to spondylosis, arthritis or any other name they would recognise. This really got to me, I had heard of LUPUS UK, so I wrote in for membership. Any contact I have now with the Benefits Agency, or any other non-medical organisation, I bombard with lupus literature in the hope that somebody will take the time to read it and, hopefully, have a better understanding of the illness.
I am now Chairman and Contact of our Cornwall Group, I feel that I am lucky in the fact that I don't have the full blown SLE and am in a position to help those that have. I do voluntary work 2 days a week, when my eyes let me, and providing I keep taking the pills, I do lead a quieter but enjoyable life.
It was January 1997 - I was feeling tired, run down, my whole body seemed to ache, at a time when I should have been full of life since the birth of our first child in December. I went to see my GP who could find nothing initially. However, a few weeks later I developed a red rash over my chest, arms, neck and face and therefore went back to the GP. The GP took a biopsy of the rash as he was uncertain as to what it was. I was told not to hold my new born baby on my bare skin just in case it was infectious.
When the results came in, that's when I found out I'd got SLE, which explained the tiredness, joint pains and rash. I questioned the GP about this "SLE" and "What is it?". I got the text book response - "An autoimmune disease" but nothing more in depth, just a referral to hospital.
Not wanting to wait for the hospital I immediately went to the Library to look it up. What is this lupus? What is an autoimmune disease? Unfortunately the books there were several years old, and I had an enormous shock when reading the 4-year life expectancy of someone with lupus!
What on earth was I going to do - a man in my thirties, just had our first child, and now looking at a life expectancy of 4 years? I thought my world was coming to an end! Depression set in, even thoughts of suicide, with death knocking at my door.
Off to the hospital where my Consultant took me under his wing, explaining to my wife and I just what lupus was, the symptoms and the medication which could be used to control the disease. He also suggested talking to a Specialist Nurse (who acted much like a Counsellor), which we did and both found extremely useful. Of course the first thing she suggested was NOT to go to the Library, as their books were well out of date and over time medical science had changed and that people with lupus could live a normal long life. Unfortunately we were too late and had already frightened ourselves. However this did go some way to consoling us.
I had tests done and the results were that my heart, liver, kidneys, lungs, joints, muscles and ligaments were all damaged. As you can imagine, I was in a terrible state, my work was suffering, it was putting a strain on my whole family. Work suffered so much that in the end my employment was terminated on the grounds of ill health. Overall I spent several weeks in hospital having tests and trying different medication, pills for this, pills for that, pills to counteract other pills.
I was slowly beginning to come to terms with my illness when we found out we were expecting our second child. This gave me a big lift in life, now I had to do something about it. I had to come to terms with this illness, changing my lifestyle to cope with it. I made contact with LUPUS UK and spoke to people who had the illness, unfortunately there were not many men, and there was not a group in Suffolk. Therefore with the help of others we set up a Suffolk Group of LUPUS UK. It was great to meet others who knew just what I was going through. In a way I was more fortunate than many of the women I met as they had had their symptoms for many years before they got their correct diagnosis, whereas mine was in quite a short timescale.
My children are growing up and I obviously have my concerns as to whether or not my children could actually have the disease, although science has said that lupus is not hereditary and cannot be passed from the male to children. There is always that doubt and worry in my mind, although my Consultant has always said that if the children start to show any symptoms then I can get them tested.
I take each day as it comes, coping with the aches and pains. I have good days and bad days, but I have learned to cope and adapted my lifestyle. I have plenty of hats and long sleeved tops along with the sun block, to keep the sun away. I have gone back to work, doing a different job which I really enjoy, and can cope with. I have a loving, caring wife, who has stood by me through thick and thin and supported me all the way, two lovely daughters and recently had a bouncing baby boy. I have been supported by my whole family and other lupus sufferers.
Being a male with an illness which is what most commonly called "a female thing" is not what any male wants to hear, but there are so many men with these symptoms who are not coming out to tell somebody, and all I would say is please do - I found it really helped to talk to others who truly understand how you are feeling and LUPUS UK is doing so much to ensure that more GPs and Nurses comprehend just what lupus is.