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 Dr 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 St Thomas’ 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
Written by: Andrea Newland Brown (January 2012)
That was the start of many months in and out of hospital - after 10 days in ICU and managing to not have surgery after doctors managed to stop the bleeding, I was diagnosed with LUPUS - they thought - NEURO LUPUS (or brain lupus). As I was moved to a normal hospital ward and not recovering as I should have been, the doctors were somewhat perplexed. I could not move, could not lift my head off the pillow. After another ten days I was allowed to go home but on heavy medications.
I spent one night at home and as I woke in the morning and tried to get up my neck just stiffened up and I experience the most terrible pain and funny head feelings and started to jerk and cry and did not know how to support my head. Just kept crying and crying and pleading for everyone to help me - to do something about my head - to support my head. I was rushed back into hospital - these attacks continued for the next few months. The neurologist kept saying it has to be neuro lupus but he was not even sure about giving a hundred per cent diagnosis. I had tested positive for all the other lupus tests and with that had ticked off all 11 of the lupus "yes's".
After many more months and many emergencies to the hospital emergency rooms, and re-admittances into week stays in the hospital my neurologist made a definite lupus diagnosis as my ANA was extremely high and each test showed it going higher and higher. More tests and more lupus positives. But still they decided to bring in a physiatrist - she would not hear of the lupus diagnosis and kept trying to ignore all the positive factors and diagnosis. By this stage 5 months had passed and my condition was worsening - intense and unbearable pain everywhere - intense headaches, skin rashes, mouth ulcers, intense sweating periods, fever and still positive lupus results.
By this stage I had been walking around but battling still to do everyday things and had not been able to return to work but now once again I was battling to walk and move and EVERYTHING seemed to be wrong. The doctors then decided to start me on high doses of steroids and plaquinil, etc.. A month later I was still not getting any better and needed to travel and because the fits/seizures which had started after the haemorrhage were coming more often and more frequently- they put me straight back into hospital and did 3 days pulse treatment.( Like a form of chemotherapy). I initially felt better but by the time I got back home on the first night - for the first time I felt like my life was over and I was not going to make it. For the first time I felt scared - My legs would not work - I had no energy - I sat on the bed and cried and cried. I remember saying to my husband after the past couple of difficult months - I don't think I am going to get better - for the first time I cannot feel positive about all of this - I don't want to do this to you - I will understand if you want to walk away from me and all of this (My whole life I had been such a fit, active, lively, bubbly and outgoing person) - he just held me tight and said he was there no matter what and he was there to stay.
I was so thankful that my best friend would be there to support me and try and help me through this terrible turn of events in my life. Both him and my daughter, Dana who had just finished University and had put things on hold to stay by my side and help look after me - I was so so grateful and thankful. My Dana was by my side 24/7 and was so amazing and I will never be able to thank her enough for her strength and maturity and how she helped me to cope and get through each day.
We then went to live with my elder daughter so we could make a new start - Dana was also there with us - my condition was rapidly worsening by the day - the attacks - fits/seizures getting worse until my mobility had all but gone. I could not walk - I found myself in a wheelchair. At this stage I was so ill that I could not even think or give thought to what was really happening or the circumstances. I deteriorated so badly that my husband had to feed me - carry me and put me on the toilet - everything - thank goodness for my wonderful family - my parents, my daughters and my husband - where I would be without their love and support I hate to think.
I was desperate to get an appointment at the Louise Coote Lupus Unit - I had heard they were so good and there would be doctors there and people who understood and would be able to sort this all out. But in the meantime, the GP said she could not alter my medication and by this stage I had been on such high doses of steroids for way too long and the side effects and damage from the medication also started to take its toll.
Not being able to wait any longer for an appointment my family booked me a private appointment with the London Lupus Clinic and I was fortunate to see Dr. Rachel Davies there who straight away advised my GP to start lowering my steroid dose - thank goodness for that as I don't know what would have happened if I had stayed on those doses for much longer.
Thankfully, I finally managed to get an appointment at The Louise Coote Lupus Unit at St. Thomas - how very, very grateful I was and am. On my first appointment they decided to admit me into hospital and do tests. Thankfully by this time my steroid dose had come done a couple of mgs and I was getting some mobility back. I stayed in hospital the week while tests were carried out and I thank all the doctors and staff for their excellent treatment and care.
They continued to lower the dose of the hydroxychloroquine but upped my plaquinil dose. My lupus tests were not as bad as they had previously been and it was suspected that a lot of my problems were more from the steroids than the lupus itself.
Since then - which was September, 08 - I have continued to be treated at the Louise Coote at St. Thomas and once again am in the hands of Dr. Rachel Davies who has been fantastic and I am very appreciative of all the support and treatment that I am receiving. Dr. D'Cruz and his team have all helped and seen me and I thank them all for all the wonderful work they are doing. Where would we all be without this wonderful opportunity and facility - people that understand and take the time to listen and appreciate the difficulties of this very complex disease.
So after being in a flare almost continually since the brain haemorrhage, I am finally starting to get back to some normality. I am so thankful that I am now out of the wheelchair and my mobility is improving with each day. I still suffer immense pain in my feet which still makes walking a lot of the time very difficult but I am "plodding" along. The depression sets in every now and again - mainly due to the huge amounts of weight I have put on, the cushingoid which is very bad, and pure frustration.
Even the loss of hair and very deteriorating eye sight has been heart wrenching. I still also have a lot of other lupus symptoms and also now have vasculitis, Raynauds and fibromyalgia. It is suspected that I more than likely have had Lupus for at least maybe ten years - so many things make sense now. All the things that have been unexplained and were always put down to depression and stress - loss of mobility in my legs, butterfly rash, an emergency life threatening peritonitis amongst others. This whole ordeal and disease has been totally a life change - from being the most active person always playing sport, taking part in running/cycling marathons and teaching and working out in the gym to not even being able to get around has been so, so difficult to handle and accept. I think acceptance is a big thing but easier said than done. Staying positive and keeping stress at bay is highly important and of course a good controlled diet - (which I always adhere to - but nothing is going to stop the added pounds when the dreaded steroids take their toll on our bodies).
Its been a long hard road and I still have some road still to travel but hopefully with the help of the Louise Coote Lupus Unit at St. Thomas and the disease being monitored and brought under control, I will soon get back some of my old life and start to feel "normal" once again.
My mission is now to support the fundraising for this disease that does not get the recognition that it deserves and raise as much awareness about it that I can.