Hi,
I’m 57 years old and have been ill for most of my life. I seemed to catch everything that was going when I was very young and quite a few things that no-one else seemed to have! My glands were permanently swollen and my throat permanently sore!
Despite that I was a very active child and as the years went on I got heavily involved in athletics, being a very fast short distance runner. In fact I ran for my County through my local athletics club.
However in my teenage years things really started to go wrong. My periods were always very slight and irregular. I was stick thin, and you could count my ribs, despite my having a healthy appetite. I began to pass out anywhere and everywhere. My blood pressure was always low, and I was permanently tired! I suffered years of pelvic pain, and as I was working at the time, and as NHS tests revealed nothing, I paid privately to go and have tests. The private doctors could find nothing unusual on tests, any more than my GP could. When I was about 17 I had to give up my job as a secretary in an engineering company, and my involvement in athletics, because I was just so exhausted and in pain with my stomach all the time. I remember I spent two years sleeping on the couch all day at home, and even my parents thought I was being lazy!!!
I recovered to some extent though, and was able to continue a fairly normal life, although the pains in my stomach and the exhaustion took their toll. I took the ‘passing out’ episodes in my stride and knew when they were coming on. I had one such episode in the hairdressers and I would simply find a quiet spot to lie down until it passed. It happened on a hospital visit to see a friend too, which everyone else found amusing.
I married when I was 25 and had my first child at 27. The pregnancy was horrendous and the labour even worse, and even though I had always had a hankering for four children I said ‘Never again!’, and my son remained my only child.
After the birth of my son things got even worse. I was plunged into an early menopause! My periods became even more erratic. I would have none for six months and then I bled every two weeks for months on end. This went on for over a year during which time I went to my GP. As per usual they could find nothing wrong with me. I began sweating, firstly at night. I would wake in the night sweating as though someone had thrown a bucket of water over me. At first there was just the odd one or two on odd nights, and then they were every night, many times a night. I suffered with sleep deprivation as a result. Later I had them all day too. My periods then stopped completely.
I became agoraphobic and claustrophobic; my anxiety levels were off the scale. I continued to pass out everywhere. I developed thrush and as soon as one lot of medication cleared it up I got it again. I couldn’t stand noise or light and I was light-headed all the time with palpitations so bad I thought I was going to die! I would regularly go down with mystery viruses (at one time they actually thought I had meningitis) and yet still my GP could find no reason. I was still exhausted and regularly had to sleep, anywhere and everywhere, to top up my energy in order to drag myself through each day. It was suggested to me that it was all in my head, and my husband believed them. Hell I began to believe them too!!! I was sent to a Psychiatrist for two years and was prescribed anti-depressants but it didn’t help. The worst of all was that I seemed to be living in my own world of illness and pain and no-one would believe me. My doctors classed me as a hypochondriac! That phrase was actually put in my NHS notes, I found out, and has been a great stumbling block for me ever since.
I went through ten years of sheer hell after the birth of my son, and without the help of my father (my mother died when I was 3 months pregnant) I don’t know what I would have done. He took care of my son whenever I was unable to. My husband who was finding it increasingly difficult to cope with my ‘illness’ took a job abroad and we only saw him about once every three months for a month, and he was hardly ever at home then. He asked my father to move in with me which he did, bless him.
Gradually I climbed out of the worst of the symptoms and to all outward appearances was able to lead a fairly normal life again, but inside I always felt unwell and tired. Despite that I threw myself heavily into DIY, which I loved. I was always hanging paper and painting, I built a patio for myself and a couple of friends, and I LOVED gardening. We had a house with an acre of garden and it was my heaven.
When my son was 11 years old my husband finally left me, and over the next four years I went through a harrowing divorce, including my being forced to sell the house and garden that I had come to love. I was 38 years old.
Not long after this I was pole-axed with the next round of symptoms. I spent 10 months sitting in a chair all day because I felt so ill and I hadn’t the energy to do anything else. I was in constant excrutiating pain in all my muscles and joints, I had so much pain in my hands that I could barely use a knife and fork to eat and I couldn’t open a bottle to save my life. I had always been a physically very strong person but now I felt weak, shaky and very vulnerable. I felt like an old lady, no I’ll re-phrase that, I’ve seen very old ladies who coped much better than me! I still had the awful light-headed feeling, and I was dizzy all the time, and sleeping most of my life away. I had always had 20/20 vision, but my eyes began to trouble me with pain and blurring, and finally horrendous double vision. I had awful pain on one side of my head too. My GP did tests at various times but nothing abnormal was ever found. I noticed that one of my eyes was swelling in its socket, but my GP refused to believe me and gave me a tube of golden eye ointment! At one point she actually told me I was imagining it!!! I wasn’t being listened to again.
After a number of months a worried friend took me to the A & E department of the local Eye Hospital and within an hour I was diagnosed with thyroid problems and was told that I had thyroid eye damage, all again despite relatively normal test results. My thyroid results were only ever ‘borderline’. So was this why I had been so ill all this time? First I was Hyperthyroid and then Hypothyroid and I had Grave’s disease and then Hashimoto’s disease (which means that my body’s defence system has turned in on itself and was trying to destroy my thyroid). Having always had perfect vision I was now forced to wear glasses, with prisms in, to correct the double vision, only they never quite did. I had to give up many other pastimes I had enjoyed. I loved embroidery, painting landscapes, playing the piano. None of these I could do anymore because of the problem with my eyes. On the bright side though I was told that I would feel much better once I was on Thyroxine. I didn’t! The eye problems did stabilize eventually, although it took a number of years for them to do so, and my eyes are permanently damaged.
I still felt dreadfully ill all the time, and eventually I was put on HRT, and told that it would sort me out and I would feel like a new woman. It didn’t and I didn’t! However it did stop the exhausting sweats for which I am eternally grateful. I have tried several times since to come off HRT because I am aware of the dangers, but the sweats return with such a vengeance that I cannot cope with the effect they have on my life in addition to everything else.
On a routine visit to the optician I was then found to have a substantial number of ‘floater’ and the beginnings of cataracts in both eyes. My glasses rapidly got thicker and thicker until eventually they looked the thickness of the bottom of a milk bottle, and within a year I was bIind! I could see light and dark and that’s all!!! Now I couldn’t read, I couldn’t watch television and I couldn’t drive my car. In fact I couldn’t even walk in my garden. Eventually I had one cataract removed but it took me four years to get over the operation and I have never been well enough since to have the other one removed, and a necessary squint operation to re-align my eyes caused by the thyroid eye damage, so I remain blind in one eye, with blurring, burning, watering in both. I can read again though, and I can drive my car, and I have been able to do most of the visual things I couldn’t do before the start of all these problems with my eyes.
In addition to the physical symptoms, which persisted, it was becoming apparent that my memory was being increasingly affected too and there were weeks/months when I couldn’t think straight at all. I forgot everything! I would stop half-way through a sentence unable to think of the word I was looking for, and if someone supplied it for me I forgot what it was I was trying to say in the first place. I failed to recognise people who obviously knew me well, and couldn’t believe I didn’t know who they were. If I parked my car I would always forget where I had left it. I even went through a period of time when I could see people were speaking but couldn’t understand what they were saying. It was as though they were speaking in a foreign language. Very scarey!!! I couldn’t use the telephone because my brain was so jumbled I didn’t know what to say. I have also had days when I couldn’t even have told you my name! I began to gain weight and for the first time in my life I was 2 stones overweight. Eventually I barely made it outside my own front door and had no social life either. In fact I was finding it impossible to function at all and my days were spent either in bed or sitting in a chair not being able to do anything. I barely had the energy to lift my hand out of my lap to scratch my nose.
I changed doctors five times within two years trying to find a GP who would believe me when I told them how ill I felt and how badly my life was affected by all of this. One actually asked me “Are you sure you’re not expecting too much from your life at your age?” I was 54 and felt as if I was 104. When I was younger I was told by my NHS GP that it was all in my mind, yet when I was older the same symptoms were repeatedly blamed on the menopause or my thyroid, but nothing they prescribed me worked.
Two years ago my son built me a computer and I found a thyroid forum and a menopause forum, and whilst I did have many of the symptoms of fellow sufferers, there were many other symptoms I had that they didn’t.
The symptoms I had been suffering seemed to find a level where they remained, but to all intents and purposes I was coping, just! That’s the worst thing about this illness. To everyone else you look OK, but believe me it was still all going on inside. I call this the “invisible illness” because no-one else realises what we are going through.
I decided to go on a four-day trip to Paris in 2002. I slept most of the days away but it was nice to feel that at least I was doing something that for me was totally out of the ordinary. I returned with a terrible flare up in symptoms. I was so dizzy I could hardly stand, and lying in bed or standing I felt as if I was in a boat on a rough sea. I woke one morning and opened my eyes to find the room slowly spinning around me. My legs were so heavy that if I did walk I felt as if I had heavy lead diver’s boots on and I was wading through treacle and someone kept moving the floor. I kept falling over, I was in constant pain from all my muscles and joints, the palpitations were worse than ever and someone seemed to have shoved a ton of cotton-wool in my brain again. My blood pressure, which had always been low, was now high, as were my cholesterol levels, and life was sheer hell again.
I was completely housebound now, and the only thing I could do was to spend short periods of time on my computer trying to find out more about my symptoms. I spoke to several people who suggested that there seemed to be more wrong with me than just my thyroid disease or the menopause. Lyme disease was mentioned, and it was also suggested to me that I go to see a private doctor in the UK who recognised the involvement of bacteria in this kind of illness. It would cost a fair bit of money, which I didn’t have since I haven’t been able to work for years, but I was desperate to find out what was wrong with me, and in May 2003, after I had been given the money by a relative, I booked an appointment.
My consultation was a revelation! Here was a doctor who seemed to WANT to listen to me. He didn’t poo-poo my symptoms as hysteria as did all the other doctor’s I had seen. He examined me thoroughly and looked at my list of symptoms which I had prepared for him. He said that although I fulfilled the criteria for Chronic Fatigue Syndrome/M.E. it was thought that the illness was caused by a spirochaete , a stealth bacteria, called Borrelia. Over the months that followed I had several blood tests and it was confirmed that I do have Borreliosis and of the list of diverse symptoms associated with this illness I could tick very many of the boxes. It suddenly all made sense although heaven only knows how I got it! I have also tested positive for the co-infections Micrococcus luteus and Chlamydia Pneumonia (the heart attack/stroke bug!), nothing to do with the sexually transmitted Chlamydia!
For many years it was thought that the only way to contract this disease was by the bite of a tick that had previously fed on an infected animal. I never had the typical bull’s eye rash which is a clear give away of a Lyme infection by bite, nor do I ever remember having been bitten. Over 50% of people are similarly unaware of a bite, and it is now known that tick/insect bite is not the only means of transmission of this disease.
I learned that it is possible that one of the ways that this illness is transmitted is from mother to child through birth. My son, who is 30 years old, has subsequently had his blood tested and it shows he has it too, although at the moment he shows no symptoms. I was devastated to think that I have given it to my son! This of course raises the question; were my own mother or father carriers? Looking back at my family medical history there are certainly many signs there.
I might add at this point that in 2004 I was seen by an NHS Rheumatologist who diagnosed me with Fibromyalgia, a “dustbin” diagnosis of an illness for which there is no conclusive test, no treatment.
I am currently being treated by my private LLMD with long term antibiotics. The road is very long, and can be very rough at times, no doubt due to the fact that I have seemingly had this illness for so many years, but I have seen some worthwhile improvements. I have no idea how much better I can be or how much permanent damage there is, but at least now I feel that I do have some hope.
