My everyday battle with the Wolf (alias SLE), fibromyalgia, arthritis and degeneration in my spine and facet joints. Just a little thing to deal with in life, along with the other less significant problems such as Sjogren’s Syndrome, Antiphospholipid Syndrome, pleuritic pain in the chest due to fluid around the heart, headaches and muzziness because of changes to the vessels in the brain (found on tests at St Thomas’ Hospital in London)…. Just to name a few symptoms and problems I have to deal with every day and with looking so well all the time, no one really believes that you feel so awful every day, apart from your loving family and very special and caring friends.
Well my Lupus story started when I was 12-14 years of age (although I did not know this then!). I had been a very sporty child before the wolf entered my world. I was extremely supple and was picked out to be a gymnast at 5 years old. I carried on training, every night after school and every weekend, but eventually gave this up because the gymnastics coaches were too harsh and made me cry a lot – I couldn’t deal with this and so I gave this up when I was about 10 years old. I went on to do trampolining, netball, swimming and I loved nothing more than to go on a long distance run (I even represented the school in numerous competitions for this).
It was at this time that I started becoming poorly. I always felt completely drained and extremely tired, which I thought was from all the exercise I was doing. I’d always had a really thick head of hair and also at this time, my hair started to thin. I attended my doctor who was a 40 something elderly lady (or to me she was, as I was only young at 14 years old!). Throughout my early school years I was always off school due to tonsillitis. I used to have it so bad that I couldn’t move out of bed, felt totally drained and couldn’t even swallow and the doctor would visit me at home and prescribe more antibiotics. I went on feeling so exhausted and tired that I visited my GP many many times over the years and my tiredness was always put down to TATT (Tired All The Time) Syndrome!! I was working a few evenings after school and every Saturday all day as a waitress, which was really hard going, but I carried on regardless!!
At the age of 15 and coping with the stress and strain of preparing for O‘Levels and GCE’s I became even more tired (it’s so hard to explain what tiredness you feel) there is no comparison. You could just sleep for ever. I visited my doctors who thought I might have Glandular Fever. I had to have a blood test and the results were positive. I had to have a long time off school and the recovery period after this went on for ever. I just felt so weak. After being so fit and dedicated to my sport I started to feel really fed up at not being able to go out and do the things I used to.
The years went by; I finished school, started college to study as a Medical/Legal Secretary. I was working as an Auxiliary Care Assistant at a nursing home in Dorking – doing day and night shifts along with studying. I always felt totally exhausted.
After I finished college I started work at SmithKline Beechams as a Junior Secretary – I always gave my best and really really enjoyed my job. As with everything I would give my all (in strength and dedication) I used to work long hours but enjoyed every minute. I carried on working at the Nursing Home doing a couple of shifts there as well. The years went on and all I would ever feel was totally and chronically exhausted and as I had been to my GP I just thought that it was how things were meant to be.
I married when I was 20, which was very young, to a wonderful and caring husband (well most of the time!) who I had known almost all my life. We were friends for many years before we became romantically linked! I think this has helped us to cope with the ups and downs that Lupus throws at you. We started to try for a baby when I was 22 and had been married for 2 years and we both felt ready to have a child.
I became pregnant quite quickly and was totally over the moon at the news. Everything crumbled in our world at about 6 weeks into the pregnancy, as I started to feel cramping pains, which were getting worse and worse. I reported to my GP who told me to stay in bed and that hopefully it was just a little hiccup that would resolve itself. The agony went on for a couple of days and then I started to bleed really heavily. I went to A & E at East Surrey Hospital, where they confirmed that the baby’s heartbeat could not been seen on the scan. I had to have an operation to remove the retained products of conception. My world fell apart in just those few hours.
Little did we know that this would happen at least 6 more times, with numerous D & C’s, laparoscopy operations and missed-miscarriages. It was totally devastating and extremely hard to cope with both emotionally and physically.
I had started a new job at Philips Components and the nurse there was very kind to me. She had performed a medical review when I had started my job and then went on to help me with the emotional side of recurrent miscarriages. One day the nurse bought in an article that she had read in a newspaper. This was about a new treatment that was being offered by Professor James Mowbray. The treatment was being offered at The London Hospital, where they took white blood cells out of the man; they then did a bit of wizardry, concocted a potion which they then injected back into the woman. We went along for the treatment. I was also advised to take Aspirin every day from then on.
We became pregnant again very quickly and amazingly we got to 6 weeks, 6 months and 9 months! I was monitored very closely throughout the pregnancy by my midwife and GP. On the 5th June 1996 our precious baby boy, Joshua James, was born at 5.09am. The love and pride we felt for him was overwhelming. We couldn’t believe that we had actually had a baby!!! Funnily enough when I was pregnant I felt less tired, after the constant morning sickness had settled, at about 6 months. After a few months of giving birth though, the tiredness and aching returned leaving me feeling in extreme agony and the tiredness was really disabling. The months and years went on and I didn’t really bother to say anything anymore.
It was after years of suffering with right-sided upper abdominal pain that I became so ill that I was unable to keep down any food or water. I attended my doctors for an emergency appointment and was told that I probably had gallstones/infected gallbladder and I was sent for an emergency scan which proved the GP was right. The young doctor also said I had a positive Murphy’s sign which meant the gallbladder was abnormal.
I was taken to hospital where I stayed for a couple of weeks on a drip. I then had a planned cholecystectomy a couple of weeks later. I was in theatre all day and my husband and mum thought that they had lost me!! I made it through the operation but was extremely weak and anaemic. I had a long, hard recovery but finally started to feel a little bit brighter. All the time this was going on my husband and mum had to cope with daily life of caring for a young baby.
When Josh was about 2 ½ years old we decided to try for another baby. We again had to have a booster injection at The London Hospital. I became pregnant again and this pregnancy also went smoothly in terms of not miscarrying. I was in hospital on a drip for the first few months as I could not keep any food or water down but after about 5-6 months I started to get my appetite back.
After a nerve-racking 9 months of total worry and anticipation, James Anthony was born on the 8th April 2000. Another gorgeous little baby boy who lit up our world and made our family complete.
It was after this that I decided I would change my GP as I wanted to register with the amazing newly qualified doctor that had instantly diagnosed by gallbladder problem. I had been attending my old GP about my gallbladder pain for years. I think with everything that had happened in my life, and that I was thought to be a hypochondriac, or at least that’s what I felt. I was never given an explanation or reason for my constant and chronic symptoms, joint aches and pains, ulcers, hair loss, rashes, miscarriage, etc. etc.
You can imagine with a small baby and a toddler I was always extremely tired and constantly had to ask my mum to help me and she always did. She looked after the boys so that I could rest and my husband could continue working. I thought this was all normal.
I had various stays in hospital due to various complaints including an upper GI ulcer which had bled and meant that I had to spend another week in hospital on a drip and have various investigations. The ulcer was a result of taking the Aspirin for so long; it had weakened my GI tract and caused the bleeding to occur. Hey ho, I got over this and carried on regardless!
It was when James was nearly 2 years old that I attended my new GP and we discussed all my symptoms and we wanted to get to the bottom of how awful I felt. I had lost a lot of weight, my bowels were all over the place, I was so weak and lack lustre. My new GP decided to look through my notes to see if there was anything significant. To my amazement he found that one of my blood tests had been positive for ANA. This is anti-nuclear antibody that is positive in Lupus patients. My new GP had just finished his training at Guy’s and St Thomas’ Hospital in London and had actually worked in the Louise Coote Lupus Unit. What a total coincidence that I had found a newly qualified GP who understood my symptoms and who could determine what the previous blood tests meant.
My GP discussed the symptoms and it all added up to Lupus!! I was referred to Guy’s and St Thomas’ Hospital London to see a Specialist Lupus Consultant. I was seen in January 2002 at St Thomas’ and on the first consultation I saw the very talented and caring Professor David D’Cruz. He discussed my symptoms, the chronic tiredness (that no one knows what it’s like til they experience it). It’s not normal tiredness at all. The dry eyes, aching joints, pain everywhere, ulcers, hair loss, heart and brain problems, rashes on the face and legs. My past medical history of tonsillitis and glandular fever and my many miscarriages were all very significant in my diagnosis of ‘SYSTEMIC LUPUS ERYTHEMATOSUS’. I felt really scared and frightened about the diagnosis of an incurable disease but also so relieved that I actually had a known disease. I was not a hypochondriac OR putting it on and FINALLY there was a diagnosis for my symptoms.
The years have passed and I have done fundraising for Lupus Trust, my mum and I held a coffee morning and raised £1000.00 for this very worthy charity. My symptoms have not gone away and now I have been able to apply for DLA, which after appeal, the panel (made up of a Judge, GP and a Disability Specialist) voted in my favour. I had to explain all my symptoms. What I could do and what I couldn’t do. With Lupus it’s not clear cut. One day you can do things and the next you cannot. It is the after effects of doing everyday things that leave you feeling chronically exhausted and you could just sleep for ever. I explained this all to the panel of how I can walk one day round the supermarket but the next day I would be in bed until lunchtime. With two young boys (15 and 11 years old now) you sort of have to keep going. I manage to hold down a job as a secretary and initially started to work for 38 hours/week.
However I had to reduce my hours as I became so mentally and physically exhausted and now only work 12 hours a week. This gives me something to get up for, to live life, along with my two gorgeous boys and husband. Along with the Lupus I have also been diagnosed with Fybromyalgia which causes a burning, aching at numerous points all over your body. All day every day I ache, I have chronic pains all through my body along with muzziness and extreme tiredness. I also have arthritis in my spine and facet joint degeneration. I have painful and aching feet; it’s like all the little bones and tissue in your feet are crying out for a bit of therapy! As I am a secretary, my fingers at the end of my shift have excruciating pain through them; I suppose the typing is a sort of exercise for my hands?!
The extreme pain that I am experiencing now with my Lupus symptoms, fibromyalgia and back problems have meant that my GP has suggested trying some new painkillers. The side-effects are not too bad at the moment just a bit of nausea and a few odd palpitations. The medication list is forever changing and forever daunting – how I wish I could come off it all!!
Another major hurdle that I am having to come to terms with is the death of my most caring and beautiful mum. Although she suffered from ill health almost all her life too (AS, RA, MI, Type 1 Diabetes), she was ALWAYS there for me, to help and support me. She would do anything to make life easier for me. She lost her long and courageous battle to the dreaded and awful pancreatic cancer on the 11/10/2011. I am just realising what a massive gap her going has left in my life and I know that my body will have to do its utmost to deal with the hell that it is going through at the moment. They say time heals?! Love you mum! I still have my fab dad who will always help me if I need to call on him. He has just retired so maybe I will get all my decorating done at home?!!! Dad, thank you for being there for me and for caring for me over the years, I know things haven’t been easy but I think that things happen in life to make us stronger human beings, able to deal with the ups and downs that life throws at us!! Love you so much.
At home now, as a family we can have a joke about the symptoms, mums always tired, mums always asleep, mums always taking tablets, but underneath we all know that if you didn’t keep going you would succumb to this awful, life draining disease with no cure. I know that my Lupus is not as serious as it could be and I hope it never will be, but it is always there, day in and day out, year in and year out.
I desperately hope that it will burn itself out when I’ve gone through the menopause!... but in the short-term all I can do is keep going, keep happy and live life to the best of my ability.
MY GOAL IN LIFE IS TO:
KEEP SMILING, ENJOY LIFE, LAUGH OFTEN, AND REMEMBER…
THERE IS ALWAYS HOPE… AND SLEEP!!
ALSO, ONE DAY I WOULD LIKE TO RUN….
…………. THE LONDON MARATHON!!!!!!!!!??????
Thank you so much to my mum (Rita Newland – Heaven’s Angel), and to the men in my life (Anthony (Hubby), Josh & James (my gorgeous boys) and my Dad (Derek) and to my other babies (Ruby Dog and Buddy the Parrot) for being my therapy and for putting up with me every day of every year.
I love you all with all my heart! xxxx
