I would like to invite you, if you feel inclined, to read a more detailed account of the events leading to the time I first experienced symptoms of Lupus.  


It is kind of a long story I guess.   It has taken years for me to work out what was happening to me and it is still sometimes feeling like I have lots still to come to terms with.



I hope some of you will find things that we have in common and that my writings can help you to start to begin to get to grips with the sickness that is Lupus.



I think I am correct in assuming that most people falling ill with these symptoms will take a good few years of riding an emotional and physical roller coaster.  



My sympathies are with you, but at the same time I want to convey that life can go on with Lupus.  



Sometimes I am my own worst enemy.  Have  you ever heard of Fight or Flight.  Well, I am kind of a fighter,  sometimes this works in my favour, other times I know that I am using adrenaline that I should not be using just to get through my days.  Then I just pay for it and come crashing down for a while.


We all have to find our own ways of dealing with the complexities of Lupus.



I wish all of you sufferers heaps of success and good health with your journey and hope that my contribution may help even just a little.







                                              Chapter 1


In a way, this book is a celebration!


It was conceived because finally, after sixteen very long years I can see light at the end of an extremely, deep and depressing tunnel.


It is a tunnel that, through my own experience, I feel many more people must be travelling along than we realise.

Except that they perhaps cannot see that light.


It is my hope that by sharing some of my journey, I may touch the hearts of those suffering that darkness and give them a little of my hope.


To set the picture of how this book had its beginning, I must talk to you about my years of illness.


I began to fall quite ill at thirty years of age. There seemed to be no real cause. Examination after examination produced no real evidence of any particular disease.


I constantly had pain my abdominal region. Oooh....It took my breath away. I collapsed on my stairs one day through the pain. Some days it was just impossible to stand erect. Several consultants with various doctors produced no conclusions.


Some days, I’d feel extremely tired, at other times I’d work my socks off and feel as though I never needed to sleep! I would race through my work with boundless energy only to come crashing down when my body decided enough was enough. The problem was that it just didn’t seem to be able to tell me when it was nearing that point!


I had frequent visits to the doctors but I became a mystery really.

After all there was no real reason for it. I had visits to the gynaecologists. They did the proper tests. Endoscopies, blood tests and water samples. All kinds of tests. All of these tests saying that I must be perfectly healthy! Oh well then, carry on as normal.


Normal for me, at this point in my life, was bringing up my two older children who were by then eight and ten years.


We had bought and were renovating a Victorian house.

The house had needed to be fumigated by the local council before we moved in.  An old lady had occupied it and she had since died, leaving six layers of carpet and a family of fleas!!!  A large family!  It was duly fumigated and two weeks later we moved in.


I had a part time job. I was busy by anyone’s standards, what with two young children, a very dilapidated house and a part time job. But then I thrived on being busy. Why shouldn’t I be? I was thirty years old. A life time ahead to live and enjoy living.


We had enjoyed carrying out the renovations. We worked every evening, often until midnight, and every weekend throughout a two year period.


There was no choice as we had a grant on the property and my husband, being a builder, had undertaken to complete the work by himself.


The grant conditions were such that the major building work should be completed in the first year.


It was major work too! The old building was actually just a shell with no built in bathroom. It had no heating and no real kitchen. There was everything to do.


One of the tasks we had to complete was to treat the property for woodworm. This was a stipulation by the mortgage company. My husband complied with this fairly soon in the renovation.  It was needed before further works could be carried out.


We also needed a chemical damp proof course. This was done at the same time.


Meanwhile it fell upon me to do the jobs that I could manage. Things like stripping the old paintwork. As this was a Victorian property the fashion at the time was to strip back to the bare wood. So off I went to the builder’s merchant and bought copious amounts of paint stripper. I had a beautiful old staircase to strip. It never occurred to me at the time that I must wear any protective masks. We think we are invincible at that age I guess.


The second year we worked just as hard to decorate the property to our liking. Once the major works were completed and we were starting to see good results we started to try to resume our previously busy social life. I would often clear the house of all the decorating gear and prepare dinner for guests on a Sunday. That was our relaxation time.


However, other things were going on in my life that took much of my time and emotional and physical energy.


During the first half of the second year, my mother had been diagnosed with cancer.

She lived only three months from the time of the initial diagnosis.


It was an incredibly stressful time and after the funeral, my main concern was that my father may need support.


I visited him frequently but the house was cold and lonely without his partner of forty-nine years. His beloved wife had suddenly and very cruelly been taken from him. It was heartbreaking to see.


Although having said that, my father is the sort of person who just gets on with his life and will press on with the next phase. There was talk of him moving in to a flat with an old bachelor friend of his.


We were not too confident that this was the best for my father in the long term. While it had to be his decision, it just seemed to be one based on his loneliness. Not necessarily one that would be the best for his future. He was only sixty-seven.


Knowing that my father was quite definitely a ‘people person’, we felt that it would be good if we offered him accommodation within our family home. A place in which he could treat as his own, come and go as he pleased but one in which he would have his needs taken care of.


This was against the advice of our family, who voiced their opinions that it was ‘just too soon’. That ‘he would settle’.


I am sure that that advise was well founded and given with our best interests at heart.


That being said, I am an impetuous person with a very kind and easy going husband. My heart quite often rules my head! All I could think was that he was incredibly lonely and we loved him. Besides, he was so much fun to have around.


Rightly or wrongly, the deal was done and since our newly renovated house was unsuitable for the purpose, we looked forward to buying a big enough home that would allow all five of us to live together. We sold our house two years to the day that we bought it.


So off we go again. We packed our belongings and moved to yet another house to renovate. It was, and still is a nice house, positioned right by the sea on the sunny South Coast of England.


As with the previous house, this one too needed major works. Again, being a builder, it fell upon my husband to renovate.


This time it was harder work. We had barely had time to recover from the previous rebuild and here we were again.


It was an old house, built just before the First World War and built from timber. No bricks anywhere, just timber. But it was affordable, considering the number of rooms we would need.


It too had problems with woodworm. Just as the previous house had. The building society was to retain some mortgage funds until the woodworm treatment had been applied.


That’s ok we decided. No worries, we will spray it all over and it will be good for another eighty or ninety years. Doing the job it does best. Attacking the nerves of these darling little woodworms!


We seemed reasonably positive about it all and happy that it was work but that it was well worth it. More importantly it was a house we could afford given the amount of accommodation we needed.


The children had a fantastic time. The beach was two minutes away. It was a constant holiday playing with their friends during the wonderful summer months.


As for me, I had been working part time as a banking clerk with a factoring company. It was going very well. Except for an incident in which I had severe breathing difficulties and had to go home.


After investigation it was decided that I had asthma and that a Ventolin spray would help. I was of the mind at the time that I was having difficulty with the smoky environment of the canteen. I did use the Ventolin for some while.   It seemed to help.


After a while I was really pleased to be offered a promotion to a credit assessment clerk with a view to becoming an underwriter for this large High Street Bank. I was really happy.


During this time I had many things going on in my life. I was very busy but my health seemed to have improved a little.


Having said that, I was never one hundred percent healthy.


Niggling little things really, such as allergies and rashes.

I think the Ventolin was making me feel stressed and hyperactive which didn’t help.


So then during this time of my life, although feeling reasonably well, I still had times when I had to visit my doctor for troubles that he seemed unable to put down to anything specific.


On one occasion I had what seemed like a breakdown.


To cut a long story short, I was basically so hyperactive that my life hurtled out of control. I just never felt tired. But it was a false energy. I was like a piano wire and it was only a matter of time before the string broke!


The result was a rather nasty incident. It happened while I was in charge of the child of a house guest. I ended up having a car accident.


Gladly the child suffered no more than a nasty cut. I was admitted to hospital but discharged into the care of my doctor.


We had discussions during which time he concluded that I was a manic depressive and should see a psychiatrist.


Naturally enough I didn’t want to admit that I needed to see ‘the men in white coats’. I was insistent that my problems were coffee! I could not get him to understand that my body was telling me that coffee was my big problem. To be honest I am not sure why I came to that conclusion. I didn’t recognise it so much before. I just knew that if I drank coffee it would make me able to work unceasingly. However on this occasion I had had far more than my normal amount of coffee as I had been off work for week and spending time socializing with my friend. I had the accident because I had hallucinated!


The problem when I drank coffee I seemed to have no signals that I was tired. I seemed to have reasonable nights and very busy days.


I expressed my wish to see an allergy specialist. I knew that coffee was not my only problem. More was going on.  I was definitely allergic to smoke and suspected that more was affecting me.


With much reluctance the doctor, instead of referring me to a phychiatrist, he referred me to Jonathon Brostoff, a well respected consultant in the field of food and environmental allergies at the Royal Free Hospital in London.


All the appropriate tests were administered and I went back in the queue to talk to the consultant. The results did not reveal any obvious food or substance allergy.


Doctor Brostoff heard my medical history and concluded that I must only eat organic foods. The advice was that I was extremely sensitive to chemicals and that I should devote a food cupboard to myself and for no one else. He said “Have the best food and make sure it’s organic”.


How I wished I had heeded his advice!!


Anyhow life goes on. I tried to follow the organic route but as most people would probably agree, life is sometimes rather too busy to pamper oneself in that manner and ideals like that lose their importance. The hustle and bustle of everyday life suffocates them.


Then, something happening that changed my life completely.


I fell pregnant. At first I felt that my world had collapsed all around me. This wasn’t in the game plan. I was after all thirty five. We planned the first two children early so that we would be young and healthy for them when they were growing up!   Not good news! 


Well anyway, me being me, I went to bed for three days and cried. Felt sorry for myself. Went back to work and just got on really. Very soon I actually started to think that this was actually rather good news after all. I was actually looking forward to getting the nursery ready and holding this baby in my arms.


The pregnancy though was not any easy one. I suffered more than I had with the two previous confinements. I was terribly sick all of the time and far more tired than seemed right. But hey, surely this was normal and typical for a third pregnancy? 


Baby Sean arrived and we were overjoyed! I had over the nine months, prepared myself and was indeed looking forward to the birth. When my time came, to actually see this little bundle and nurture him, it was something else!

I was as happy as happy could be. Everyone loved this little baby. He bought such joy! 


As Sean progressed on, since I had given up my previous job, I took on a job that I could do from home. This involved making jewellery. I had lots of work. Enough that I could work with a friend of mine. We worked from my lounge. It was attached to a conservatory with big patio doors to outside. As I was doing this in the winter we had all the doors and windows closed. 


This was a huge mistake. The glue that I was using consisted of two parts. It had a catalyst. It was a strong glue. 


One particular day I started to feel unusual. Dizzy and uncoordinated. My legs gave way and I collapsed. For the rest of the day I was out of action.


Realising that this glue was affecting me, I telephoned the manufacturer of the glue, whereupon they informed me that it was illegal to use this glue except under factory conditions with appropriate air conditioning and ventilation.

Why had I been so stupid!


Well anyway, I think the manufacturer of the glue had informed the factory that supplied my jewellery parts that I had rung and I was never sent any more work. That chapter in my life had finished abruptly!


Well anyway, life goes on and we were enjoying our young toddler Sean so much that my husband and I decided that he should have a sibling.


I duly fell pregnant and started the pregnancy in much the same way as with the previous one. Sickness, extreme tiredness and breathlessness.


Except one day, I went for a routine check-up.


The doctor was not at all happy with my condition and general health and sent me to the obstetrician immediately. I wasn’t given time to pack. I was admitted instantly to hospital with a suspected blood clot on my lung. What a shock! I had no idea!


The consultant at the hospital decided that although I could not have the normal testing for blood clots as I was pregnant, the blood gases were so abnormal, when considered with my general condition, it look like this was indeed a blood clot in my lung. He said that he was ninety-nine per cent sure that this was the case. 


I was confined to hospital for ten days. The treatment was Warfarin. Or at least the sort you can have when you are pregnant.  Warfarin is a chemical very commonly used to kill rats but apparently works wonders on humans too! 


I suffered another two suspected blood clots and was admitted to hospital for stays of three to ten days at a time. At one point I was admitted and told I had to keep my leg raised and I was not to get out of bed under any circumstances.

Each time I was admitted I was treated with Warfarin and sent home. By the end of the pregnancy I had been injecting with Fragmin four times a day with fairly high doses of the drug. 


Well now? We are treating this lady with Warfarin. She should be safe. Why is she still having seriously bad attacks of breathlessness? The breathlessness and heart rate of one hundred and forty would continue for days at a time. 


It was decided that my daughter should be delivered one month before my due date. This was a reasonably good birth with no real problems. 


In the subsequent year, I had no less than fifteen trips to hospital. Usually with me in a state of collapse, blue and needing oxygen. 


My poor young son Sean even began to ask daddy if I would come back alive.


Length of stay ranged from one day to ten days... I began to count the number of Canulas put in my body. It was fifty three in one year. I counted them! They would always fail. Infection would also set in. Something would always dictate that the Canula had to be changed. 


Well this continued. I saw countless doctors and consultants. I was becoming a nuisance to the good doctors! 


They started to make it quite clear to me that they had finished checking me out and really I just needed to get on with my life. It was hard. It was hard to be pushed from pillar to post. No one knowing what the answers were.


I have just looked at what I have written and experienced a pang of guilt. It sounds cynical and sarcastic. 


After all, I had marvellous treatment in hospital. They did at first, make every effort to find out what was wrong with me. The nurses were always kind and courteous. 


Nevertheless I was becoming a puzzle. One that they were bored with trying to solve.


Yes, by this time it really was a long term illness. It was disabling me so much that I needed help to look after my children. I was discharged from hospital on one occasion, with home help provided, as I had absolutely no stamina whatever. Any household chore would have wiped me out. Any stress at any level would leave me utterly exhausted and in pain. Just eating a meal would sap too much energy. I would leave a dinner table half way through and have to go my room. 


I was also in considerable pain by this time in my joints and wrists especially. In fact, so much pain that I’d be writhing in my bed and crying in pain at night time.


I was, by this time, experiencing a range of symptoms. They were many and varied. So many of them I just couldn’t tell the Doctor in one visit. 


Doctors, as we are all aware, have a very limited amount of time to talk to a patient. Invariably they only get half of the true picture. 


Besides, if I had spouted out all of the symptoms I was experiencing I’d certainly been labelled ‘hypochondriac’. 


Time went on. Some days are better than others and during the summer months I’d feel that my problems were over. In fact, it became a standard joke between a very close friend and me. 


‘I’m over it now’, I’d say. My friend knowing full well that when the next cold or tummy bug was doing the rounds I’d be included. 


Except when I’d have the bugs they’d linger. Never quite surfacing. Just leaving pain and utter exhaustion. 


I was the mother of two young children. Going to bed in the daytime was almost impossible. Even if I could my body could never relax enough to sleep.


Hence, my body never properly recovered before the next bout of symptoms came along.


My GP began to think that my symptoms were ME.  I wasn’t so sure.  I have experience of ME. 


My older son Gary had started to become extremely tired soon after our move to our new house.


He was easily stressed, exhausted and not too happy at school. Things got steadily worse and we decided that he should have some time out of school. 


So there we are. A Mother with an as yet undiagnosed illness and two young children, a teenage son with symptoms of ME that were worsening quite considerably and a teenage daughter trying her best to help the family to just cope. 


It was a difficult and very stressful time. 


I had no idea how to handle a prepubescent son with an illness that is, at the best of times, extremely hard to understand. 


His symptoms were not the same as mine at all. 


There were some similarities but other symptoms were just not the same.


He started to faint extremely easily. Sometimes he’d have mild seizures and wake up not knowing what had happened. We were assured that this was an immature nervous system and he would improve. 


He didn’t improve. He suffered so much pain all over his body. Some days he was so exhausted that it was painful even to open his eyelids. He’d have rashes all over his body and his speech was markedly slurred. 


I did some reading up on the help and support that I would need to give Gary and found out the best things I could do to help him was to feed him the very best and most nutritious food. Also I’d learnt that giving him large amounts of freshly juiced fruit and vegetables would really help his immune system to work more efficiently.


I needed to do all I could to help him. 


This went on over a period of about three years. 


As I am writing this Gary is 22 years old. His health has improved and he has since moved to Ireland and married a lovely girl. 


He still has to be careful not to overdo things and look after himself.


Hopefully he will continue to improve. 


My symptoms though seemed different. 


I had lots of trouble with my nervous system. When I was having a difficult flare my whole body would feel like it was on fire. Touching my skin sometimes was unbearable. Any sudden movements or noise would jar my whole system. I had no ability to handle stress of any sort.



On one particular occasion my eldest daughter had been away to college. She returned home on the Saturday. 


I had been experiencing an extremely bad relapse. 


Lyndsey had been doing a correspondence course and was attending a two week practical exam. 


When she returned home, she was visibly shocked. I had lost a stone and a half since she had left for college two weeks earlier and I was quite obviously extremely unwell. My skin was grey and I had no energy whatsoever. I couldn’t walk to the bathroom without help. 


I made yet another visit to my GP. She decided that I should see a specialist in ME. She would write to him and I would have an appointment in due course.


It was her belief that I had ME and I was depressed. 


This, to be truthful, got my backup. I had been ill for so long with no positive diagnosis that I quite firmly insisted that this was not depression, but that in fact I was ill first, and very quickly becoming depressed if the problem weren’t fixed!


My mind was not sad but certainly my body was. It was all but useless most of the time. Looking after my family in the normal way became a thing of the past.


I began to think that tiredness and pain were normal for everyone! It was certainly normal for me! 


The tiredness was overwhelming. The pain, excruciating. 


Everyone around me was very verbal about the fact that I would ‘benefit so greatly from some exercise’. I would lose the weight that had piled on in between relapses and I’d be fitter to boot. Easy! Except that any exercise would send my body into a serious fit of pain and weakness. Even walking. It would leave me with no stamina whatever. 


So much for well meaning advice. It just meant that I was failing to get on top of this problem and that somehow it was my own fault. I was a hopeless and helpless individual. Some inability within myself to recover. Oh if only these people, who were so close to me, and so wanted to help, if only they were not so far away. If only they could feel my pain and understand my desperation. 


No one would help me. I covered my feelings very well. Make up can do wonders actually, as in fact can ‘putting on a brave front’ or ‘stiff upper lip’. It all helps you get through each day. Oh don’t get me wrong I did scream out for help. I wasn’t silently coping. I screamed for help to the people that were my friends. Except in this case they could not help. It wasn’t their fault. They saw me struggle but how many times do you want to hear someone talk about an illness that comes and goes and never looks that bad? I seemed quite well a lot of the time. No one loves a moaner do they? When I suffered flare ups I would be at home coping alone. Only one or two friends ever saw the real extent of it all. Without those friends where would I be? I am not sure. 


Life was incredibly lonely, incredibly painful and at times life became not so precious to me. I began to feel that the quietness and peace of death were so much more attractive than the torment and suffering of this illness. Not just the pain but the emotional trauma. It saps you of any good energy. The good energy is replaced by seriously bad energy and negativity. 


Anyhow, all of that being the case, medical investigations continued. What could they do? I kept presenting to my doctor with these symptoms and she was obliged to get testing done.



My list of symptoms was such that at this point that my GP decided that they did match with Lupus in every way and that she could should refer me to Dr Hughes at St Thomas Hospital in London. I believe it was three years that I attended appointments. Each time I had nine files of blood extracted from my arm and it was duly sent off for testing. Nine phials! Do you kind of get how distressing it can be to have nine phials of blood taken from your very weak and sick body. It was ok when it was just the once. Then, when that was inconclusive, they come back for more. Whoops that sounds bitter doesn’t it. Well, in fairness they did need to test. I required testing. They could not see the problem. Couldn’t work it out. At least I was not living in the days of long ago when bloodletting seemed to be the only solution! 


Dr Hughes was absolutely convinced that I had Hughes syndrome. Apparently he discovered this condition and I had it! Every six months I would trot up to London from Brighton to have this blood taken to prove that my ‘corned beef skin’ was Hughes syndrome. He was keen to show this to his students. He said that it ‘was typical of Hughes Syndrome’. The Lupus tests were always negative even though my symptoms were identical to the typical profile of Lupus. 


I gave up attending hospital. I couldn’t take it anymore. Each time the test came up negative it just confirmed in my mind that I must be a hypochondriac. I never attending the clinic again. 


I tried once again to just get on with my life. 


I failed miserably. Another flare came along. This time it was decided that there was a problem with my kidneys. I has blood in my urine and so I was referred to a renal specialist. 


This consultant was lovely. However she stated that she thought my symptoms matched that of Multiple Sclerosis and that she would refer me to a Neurologist.

I had said this to my doctor before. This particular doctor was very kind and helpful but when I had mentioned that my symptoms seemed to match MS her reaction had been “don’t be silly, you die of MS”. My reaction? Mmmm yes you’re right you can and actually do you know what? I actually feel like I am dying! Please help me. 


Well I waited for this appointment. It came. I attended it with great difficulty as I was experiencing a severe flair at the time. Just attending this appointment meant I would have to summon up all my strength to attend. 


In fact, after my very good friend had dropped me off at the hospital doors, I was so ill making the walk from the car to the hospital clinic that by the time I had arrived I was in a state of collapse. A nurse had to sit me down with a cup of water. She felt that the best thing was to give me a biscuit and a cup of tea. Her reaction was one of shock. I was very yellow and totally out of breath. I was always a very odd color when I had these flair ups. I’d always end up very yellow. And when I was gasping for air I always went a very funny grey color. 


During the wait for my appointment I recovered my strength and best I could and duly went in to speak to the neurological consultant.


I got weighed and had normal procedures taken and waited to speak with him.

Within just a couple of minutes and a very quick examination he very brusquely told me that I had not got MS and asked what I thought was wrong. He made me feel that I was completely wasting his time. I am afraid that my only reaction was to stand on my wobbly legs and tell him that I didn’t think he could be of any help to me. I thanked him politely and turned and walked out of his room. 


Lets not forget, it was the renal consultant that completely off her own back had suggested a neurological doctor. She had no knowledge of my conversation with my doctor with regard to the possibility of MS. I had been sent to the renal department as my GP thought that was what was needed. Utter confusion and I was lost in a maze of opinions. 


I have not seen a Consultant since that time. 


I decided that I would never visit another doctor. I couldn’t! 


It was to do with keeping my sanity. I just couldn’t be passed around any longer with no diagnosis. Many years had elapsed since I first became sick. This sickness was fast becoming very much emotional and mental as much as it was physical.

It was time to get on with my life. 


Easier said than done! I lasted for about three months. Then I got too sick again.


An old friend of mine heard that I was sick and sent me a card. She had become a homeopath. 


I disregarded it for a short while but then decided that she was a friend, what had I got to lose. I would try this avenue. These very few kind words and the first consultation set me on the road to my recovery. 


I did not visit an NHS consultant for a further seven years. 









 Chapter Two




Well how have I got on in seven years? 


As I say it has been seven years since I saw a consultant at all.


I had given up going to consultants. I had made a decision. No more consultants. No more being sick!  I decided that life was for living and I was going to live it. I was going to ‘will it away’. That, by the way is a quote by a very dear and special friend, who has a quite threatening muscle wasting disease. That is his philosophy in life. ‘Will it way’. In some ways he is a real inspiration to me. I would in fact will it away. 


That is what I tried to do. It worked for a while. Time went on.... 


An incident happened. I had been introduced to a friend of a friend who was severely disabled with Lupus. 


She was nice. We had a chat and she was kind and tried to cheer me up. She had got this Lupus thing and had learned to come to terms with it and although she was in a wheelchair, she tried to make it clear to me that there are things that can been done and help can be given.


We had a chat and that was that. Some time later I received a phone call. 


This lady was very pleasant really and offered to give me the address of the Lupus society.  We said our goodbyes. 


My reaction? Me being me, it was anger. Lupus society!!! Well, my husband who was sitting minding his own business, suddenly got a bit of an earful I am afraid. Lupus Society!! Flaming Lupus Society!! I can’t go there, I’d end up having Lupus! 


The shame and guilt I felt when I suddenly realised that I had left the phone off the hook!! Had she heard me say that!! Oh dear something else I had to worry about. Slightly comical to the hearer but I feel so ashamed that she may have heard me. 


I have no idea of this lady and her illness. No idea of her circumstances.


However, there was no way on Gods earth that I was going to give in to this awful disease. 


Have you ever heard of ‘fighters’ and ‘flyers’. Well, it seems, I am a fighter.


Not really too proud of that expression. It reminds me of the words to a song ‘I am a lover not a fighter’. I kind of hoped that I could be both at the same time!!

Sometimes being a fighter has worked against me.  I cause myself grief quite often by not giving in. 


However, fight my way out of this illness I have. Has it done me any good? I will let you be the judge.  


The last seven years. How have they been? Difficult. 


Has my health improved? Beyond all measure. 


I am now back at work and slowly but surely not only am I improving in my general health but I have learnt about myself. I have learnt how cope with my illness. I have learnt about my fears, my weaknesses, my strengths and my aspirations. I am a different person to the one that first became ill all those years ago. 


There are many different reasons why people develop Lupus. It seems that Lupus can run in families and so perhaps genetic.  Others seem to aquire a drug induced Lupus such as I have described.


For some the only option for treatment seems to be the reliance on medication. 


Modern medicine can be absolutely marvellous but in other respects they have limitations that can be harmful to people with Lupus. 


Had I not have tried complimentary therapies in my desperation, I believe I would either have ended up in a wheelchair or, in fact, just simply not be here. 


Had I not sought alternative helps I would never have known that, in fact, the very drugs that all the medics thought would keep my symptoms under control were in fact the very things that were slowly but surely destroying me.   


I should not and cannot tell anyone to follow the same route as myself. 


We are all individuals and all have totally different medical histories. 


What I can be confident in asking is, is there really any harm to be done by talking to someone outside of the mainstream profession? 


Hopefully, your NHS consultants will see the benefit of having added assistance and be supportive of your efforts to seek any support and help possible.


It is a scary process.  After all Lupus can be, and is, a life threatening illness.


It is difficult to let go of the grasp of modern medications but I do urge folk with this disease not to cut off their options.  Be open minded and forward thinking.


With the right management, the medics, both mainstream and complimentary can work together to assist you in your battle with this illness. 


In the following chapters I have tried to organize all of the therapies that I have used to get me to this point now. 


I hope that you find some inspiration for yourselves to check out some form of Holistic therapy and gain back some measure of health.





             Remaining chapters will shortly be available in e-book form.  


 If you have read the above please may I ask you to leave comments or join the chat forum that is available.



Many Thanks