One step forward, two steps back.

In 2010 I was still a patient under Dr Niklaus. His search for an M.E. specialist in our area had proved to be fruitless. As such he suggested I contact the M.E. Association to enquire as to whether they could recommend a clinic in our vicinity; then he would refer me privately. We were advised that The Fatigue Clinic (also the Diabetes Clinic) at the George Eliot Hospital in Nuneaton was the nearest well referenced specialist that would suit me. As such, Dr Niklaus made this referral.

Part of the reason that my GP wished to refer me privately was because we knew I would not remain under his care for much longer. I was in the process of getting divorced, and the house I had lived in for the last eight years was up for sale. Once it sold, the reality was that I would no longer live in the area as I could not afford to do so on my own. So, we were a little perplexed when eight months later we still had not received any word from the clinic at all. Dr Niklaus chased up the appointment and found that I'd been placed on their NHS waiting list. The waiting list was amazingly long, because Dr Patel is very popular, but this did at least mean that I wouldn't have to pay for the appointment.

Eventually I had my first appointment with them in March of 2012. The doctor I saw was newly qualified. She had not heard of M.E., and told me that I had been ill for too long; that there was nothing she would be able to do to help me. I was absolutely gutted; I'd spent the last year hoping that they would be able to help, and the result seemed to be that I'd wasted a lot of time.

I was therefore rather surprised when I was called in to the hospital a few weeks later for adreno-cortisol tests. I explained to the doctor performing the test that I had lost a pregnancy a few days previously, so the test results may be a little wonky.

I had half expected this test to show something. I had previously asked Dr Niklaus if we could look into Adreno-Fatigue Syndrome, but we never actually got around to doing so.

Three months later I had another appointment with the clinic. This is when I met Dr Patel for the first time; my specialist. He has an amazing manner. He's humorous, and related to me very easily. He discussed the findings with me and my partner in terms that we both understood with ease. The adreno-cortisol had not found any adrenalin related problems. However, when they did the test they used the blood sample to run further tests. These tests had given some results.

Firstly, my Vitamin B levels were low.

Secondly, my thyroid hormone conversion does not work efficiently. Hypothyroidism and hyperthyroidism are common illnesses that most people have heard of. I've been treated for Hypothyroidism for years, as my T4 levels are always low. The tests that Dr Patel's clinic ran showed that despite raising my T4 levels artificially, my T3 levels were still low. Our bodies create T3 by converting T4 into it. My body does not do this properly. It is a less common problem. The treatment for it is a drug called Liothyronine. Only specialists can prescribe this. With good reason.

I was supposed to see Dr Patel again three months later, taking with me results from another batch of blood tests that would assess how well the Liothyronine (and Vitamin B injections) was doing.

For the first few weeks on Liothyronine I felt on top of the world. It was amazing; as if my body had been starving for this drug all my life. I started fantasising about getting my life back on track, building a career, having hobbies etc. I was brought back to earth with a bump, when I started to feel quite ill. I just assumed that it was an M.E. relapse. It replicated it in almost every way. I was sensitive to sound and light. Every movement I made, made me feel seasick. I ended up lying on the bedroom floor for days, feeling too unwell to move, eat .. anything.

I don't remember how, but I got myself to the surgery to have the blood test in preparation for the specialists appointment. A day or two later my GP phoned me. The lab had contacted him as a matter of urgency; my blood sample had showed extremely toxic levels of T3. I'd been poisoned. This certainly explained why I'd been feeling ill. I stopped taking the Liothyronine straight away, but it took a while for me to recover.

As such, I was not well enough to get to the next specialist appointment and had to reschedule.

Please note: I do not blame Dr Patel for the Liothyronine overdose. The blood sample that lead to his prescription of this medication was taken when my body was in a state of utter turmoil; when a body loses a pregnancy all sorts of things happen to the endocrine system. It was not Dr Patel who performed the adreno-cortisol test. I think the doctor who did, forgot to write on my notes the circumstances. As such Dr Patel was unaware.

I've just had the rescheduled appointment with the clinic; a year after my last appointment. I am, once again, a little less than impressed.

As with most hospital appointments I was called in to an office to have my blood pressure and weight taken. I explained to the nurse that she needed to take my blood pressure standing up as well as sitting down because I suffer with Orthostatic Intolerance. She ignored me, only taking it when I was seated.

We were then called in to a doctor's office. I was confused. The doctor didn't look at all as I remembered Dr Patel. And his manner was significantly different. It wasn't until my partner said to him "We were expecting to see Dr Patel" that it clicked. He introduced himself as Dr Nair. (And for the record, they look nothing alike; it's simply that I was struggling with brainfog at the time). He sat and stared at us for what felt like an age, eventually asking us what we wanted from him. I didn't know what to say. I was totally confused. As far as I was concerned I was supposed to be seeing Dr Patel; a specialist who was familiar with my case.

You see, when I left the area I had been living in, under Dr Niklaus's care, I was fortunate enough to fall under the care of an absolutely fantastic GP. My current GP personally knows Dr Patel. As such my case has been discussed a little during private functions. I had actually been really looking forward to making breakthroughs with Dr Patel and my GP. My GP and I had discussed at some length what I should discuss with Dr Patel, and what to ask of him.

Dr Patel had prescribed Gabapentin for me, at night, because my daytime medication, Tramadol, keeps me awake. For about six months it worked really well, but it's effect has been wearing off over the last few months. As such we wished to suggest that I move to a low dose of Amitryptiline. I explained this to Dr Nair. He nodded and said he'd write me a prescription for it, and scribbled some notes.

A Sexual Health clinic had suggested that I see an endocrinologist because of a totally unrelated problem. My GP explained to me that Dr Patel is an endocrinologist, so when I see him, to raise this issue, asking him to test my progesterone and oestrogen levels. So, obviously, I asked Dr Nair for these tests. He nodded, scribbled some notes, and gave me a slip to take to the hospital's phlebotomy laboratory to have some blood taken.

He had absolutely no idea of my history, asking me to tell him. When I explained what had happened with the Liothyronine he smirked and said to me patronisingly "So you feel you were poisoned!" whilst scribbling some notes. This riled me. No! I did not FEEL I had been poisoned. My blood tests had showed toxic levels of hormone. I had actually personally thought I was just having an M.E. relapse. He's the perfect example of a doctor who simply doesn't take what patients say seriously, assuming that he automatically knows better.

My partner and I left his office and sat down outside. We were asked by one of the staff why we'd sat down, so we explained that we were waiting for the prescription, and asked what to do with the blood test slip. He should have given me the prescription for Amitryptiline while I was in the appointment with him. And of course, the hospital phlebotomy clinic had closed for the day; the blood slip he'd given us, only being usable in the hospital. Not only that, but he'd only requested T3 and T4 levels to be taken. There was no suggestion of Progesterone and Oestrogen.

One of the nurses who had been behind the desk took the blood sample for us; the first time she'd done so for months, or years, she told us. (I hardly felt it, however). My partner was absolutely livid. He demanded that we see Dr Patel, since I'd been waiting a year for this follow up appointment, which had ended up being a total waste of time. He'd had to take time off work to take me to the appointment. Unfortunately though, Dr Patel had rounds after clinic; and still had a queue to get through before clinic would be finished. There was simply no way that we could see him.

Today I saw my GP. He wasn't particularly pleased that I'd not seen Dr Patel either. He's heard of Dr Nair, but nothing good. At the moment I'm uncertain of whether to make a complaint against Dr Nair. I don't wish to complain against the clinic, because I value Dr Patel's treatment too highly; though I do think it out of order for the nurse to ignore me when I tell her I suffer from OI, and for us to be sent in to see a different doctor without any warning. But when someone has waited a year for an appointment, and ten years to see a specialist on their condition, to be treated the way that Dr Nair treated me is totally unreasonable. Because of Dr Nair, I went a week without pain medication; which, as you can imagine, was an arduous experience. I would prefer for another doctor, with a similar approach to Dr Patel's, to take his place. With two doctors in the clinic whom people desire to see equally, those waiting lists would hopefully reduce.

So anyway, once again, I'm waiting to see Dr Patel. And my poor GP is trying to tweak my medication with me while we wait.

M.E. and me

It's funny. As a Christian, whenever I met new Christians they always asked me what my testimony was. A Christian's testimony is the story of how they were lead to God. Some people's testimonies were amazing. I always felt horrible when asked this, because I didn't really have such a story. I started going to church because my family sucked and I was lonely. I don't think I ever actually told anyone that though.

These days I have testimonies for many things. What lead me to Wicca, how I discovered I was bi, how I became a rat lover, and my M.E. testimony. Today I will share this last one with you.

The truth is that I will never be 100% certain when I actually became ill. I can easily pinpoint the pinnacle of the onset, but if you ask anyone who has known me for a long time they will tell you that I have always been a tired person who slept a lot. I do have hypothyroidism as well as M.E. however, so this may well explain that.

There is also the fact that I have had a back problem since I was very young. I fell out of a tree when I was 11, following which I suffered increasing amounts of pain. Doctors and family put this down to 'growing pains', but eventually when I was 17 an osteopath discovered that I had slipped disks in my back. Suffering something like this for 6 years is fairly likely to have had an impact. My body was fighting chronic pain without treatment all those years. If one is to believe that slow onset for M.E. exists, then I may well have developed the illness due to the back pain, with the fall from the tree being my trigger event.

When I was 18 my best friend had glandular fever. She had it extremely badly. She had allergic reactions to the medication that was supposed to help her. She was off college, laid up in bed for months. I visited her as frequently as I could. She cannot remember these visits. I recall her hallucinating that she was looking in the mirror and seeing an old lady looking back at her (there was no mirror even present). She forced herself to attend college, and even on occasion to come to nightclubs with the rest of us. She developed M.E.. Her mother already had it.

I went to university where I studied Health Science. Every project I could, I focused on M.E. because of her. It was very hard to find information on it back then. There has been a lot of progress since I finished university, and I've learnt more in the last couple of years than I did in my entire course.

I was an extremely active person. I was working full time. I attended church twice every Sunday. I still attended the university Christian Union every Thursday evening. I volunteered every other Saturday morning in Oxfam. I swam 50 lengths three times a week. I did shopping for the elderly of my church (I could not drive in those days, so I walked to and from the supermarket). I attended a committee called the World Mission Group with my church, and took the minutes for the church meetings. I did the weekly clean of the building of flats that I lived in, for my landlord. I frequently went clubbing with my friends, often going down to London to do so, and of course entertained many other social activities too. I was busy, and I loved it.

My immediate superior at work was a bully. It became so bad that I quit my job. At the time it was extremely difficult to find work, so I found myself taking a Christmas job in a shop. I absolutely loved this job, and stayed on after Christmas. The week that I started the job I had a stomach bug; it actually meant that I could not start the day that I was supposed to. Then, due to the way my previous boss had treated me, and the feeling of being a complete failure, I had a breakdown. The boss at my new job, and my housemates, were absolutely wonderful about it. I was put on anti depressants, but did not get on well with them at all. I do not know if they contributed to what happened or not though.

During the week I had been ill with the bug I had become stir crazy in bed. I had decided I wanted to decorate the living room. I could only manage ten to fifteen minutes of activity at a time, but I managed to strip the wall paper. Behind the wall paper was black mould. I have mycotoxicosis from a previous serious exposure, so when the mould spores started drifting off the wall my immune system just crashed.

My colleagues at the shop job never knew the bubbly active person that I described above. They knew I loved working, and was fun to work with, but they also knew that I could not manage to go out for a drink with them after we closed the shop, and that I frequently had a quick nap in the cloakroom between shifts. I became extremely fatigued. I was getting up just to go to work and then going to bed as soon as I got home. I started to feel as if the sky was pressing down on me. I reduced my hours, and then reduced them again, until my boss eventually told me I should leave because I was obviously too ill to work.

I found myself stranded in bed. I could not stand light, or sound, so I had to stop watching TV and using the computer. I couldn't have the lights on. I went through a phase of being unable to cope with anything touching my skin, so I had to lay naked on the bed with the heating turned up to suit me. I felt constantly nauseous, but never threw up. The world felt as if it was tumbling, throwing me around. I had headaches coming and going, and flashing lights before my eyes. I felt as if something was literally sucking energy from my arms. My hair hurt! I wore sunglasses and earplugs if I needed to go outside, but avoided doing so, because walking more than a few steps was leaving me breathless and exhausted.

Despite becoming so extremely ill, I considered myself lucky. I had studied these exact symptoms for years, so I knew what was happening to me. I had a friend with the illness, and she guided me through the process as best as anyone can. My doctor though thought it was simply depression, as many do, so I went completely without treatment. No tests. Nothing.

My housemates fed and watered me, paid the bills, and cared for me. They were utterly wonderful and I will never be able to thank them enough. My other friends, and church fellows though were hopeless. When I was unable to attend activities a few times my friends stopped inviting me. Except one, they never visited me either. I called my minister asking for help on several occasions, but he never came despite many promises.

That is the period I refer to as the onset of M.E. for me.

I had not told my family how ill I was because they have simply never been interested in my well being. They knew I had left work because I was struggling, and that I had no income (Job Centre had told me I could not claim becuase I was ill, but no one had told me sickness benefits existed). I think their main concern was probably making sure I didn't ask them for money. When my step mum told me one day that my sister had M.E. I was devastated. My saying 'so do I' sounded completely lame, and was dismissed immediately. I believe my sister had been ill a matter of weeks when she was diagnosed. She had recovered within three months of becoming ill (at the time, one was not supposed to be diagnosed until they had been ill for at least six months), so my family spent the next eight years (until it was discovered my sister actually has MS) asking me why I had not got better like my sister had, making me feel, as they always have done, that I am totally inadequate.

My real mother and her partner came to visit me two or three times during that period. Unlike my father and step mother (whom I refer to as my family because I grew up with them), they saw that I was very ill, that I was struggling, they did give me hand outs of money, and I believe they actually took me seriously. It was they who had taken me to the osteopath when I was 17; when my back problem was discovered. I think that a decade of seeing me only on my good days however, has lead them to believe that I am a lot less ill now than I actually am.

I met my ex husband online. I moved to the midlands and we married. I spent eight years gradually improving. At the beginning of 2010 I had got to the point where my body was asking me to exercise and my mind was seeking stimulation. I started attending the local recreation centre, and was embarking upon a very gradual exercise plan with the help of a fitness instructor who was familiar with M.E. (funnily enough he was on my course at university with me). I also started seeking work. After being out of work for so long I was, and am, extremely nervous about working, so I enrolled with temping agencies rather than seeking permanent positions. Nothing ever came of it though.

In June 2010 we went on holiday to Egypt. It was the first proper overseas holiday we had been on without his parents. I had been having problems before we left; what seemed to be my asthma playing up. Throughout the holiday it persisted. We assumed that the air conditioning was making it worse and ignored it. After a beautiful week on the Sinai Peninsular we returned home. I got worse. The cough became as severe as it is when I have mycotoxicosis episodes, only there was no mould to blame. I had allergy tests, but nothing showed up. Eventually I had a lung scan which showed severe infection. By this point my health had declined markedly. I was housebound again, sleeping a lot more than was normal, and struggling with post exertional malaise more than ever.

It became worse and worse. It felt like just walking was a huge fight. I could not breathe properly. My body was rejecting all foods; I lost four stone. It became so bad that I only got out of bed to use the bathroom. My husband had to bring me food, but he did not see the point if I couldn't keep it inside of me. I thought I was dying.

In the middle of November he told me he wanted a divorce. He never gave me a proper reason as to why, but I would not be surprised if it was because he could not cope with me being that ill. He had spent eight years watching me getting slowly better, and then I'd relapsed back to where it all started. He had always been very irritated by my being ill to start with. I sometimes wonder if he actually believed I was ill at all. This relapse was evidence, and I don't think he liked it.

This time around I had an absolutely fantastic doctor. He did everything he could to work out what was wrong with me. Until I had been his patient he had believed that M.E. was psychological. I don't think he believes that any longer. We discovered that I could eat rice; as soon as I started to eat only rice my body started to recover. He also found that the cause of my cough was acid reflux; a simple dose of Omeprazole every day cleared it up, so the huge energy drain from the coughing was cleared up almost instantly.

I 'recovered' fairly quickly. With this relapse I learnt what a trickster M.E. is. It allows you to think you are recovering and then shoots you down. And with this relapse, came the onset of M.E. pain. I can no longer push myself at all without the risk of suffering pain throughout the muscles of my limbs. Sometimes the pain will come when I have not even pushed myself at all. It affects my arms and legs mostly, but will sometimes affect my fingers and toes, which is debilitating and agonising. If you have ever bruised a bone, you will know what this pain feels like.

I have suffered with depression for most of my life. For about eight years I was on anti depressants. I came off them in 2009 (by accident). I was amazed and happy at how I no longer needed them. I felt normal. I went through a very stressful divorce process, and a just as stressful house move without feeling depressed; without needing anti depressants. I mention this because I want to be clear that I am not ill with depression, it is definitely M.E.. I often doubted this myself because of the attitudes of various doctors, but I no longer do because I have experienced the difference for myself.

In December of last year I got together with C. He was abusive and put me under huge amounts of pressure, both emotionally and mentally. When I was first with him my health was doing fairly well. Due to problems with my flat I spent a lot of time at his place. I won't explain how, as it is fairly complicated, but he managed to release a huge amount of mould spores throughout the lower floor of his house. The stress that C was causing me, the mycotoxicosis reaction, and being pregnant took a huge toll on my health. I became bedbound again. This time it severely depressed me too. With help, I got out of the situation I was in there, and almost immediately was able to find my feet, literally, though am still far from as good health as I had previously been in. The lesson I have learnt from this relapse is that despite M.E. not being a psychological condition, for me at least stress plays a huge part in how bad my M.E. is.

So that is my journey, my testimony. I testify that M.E. sucks! I do not believe I will ever make a full recovery. I have a relapse remission condition which is severely affected by stress and anything else that affects my immune system. I will probably spend my life recovering slowly, and then suddenly relapsing. I spent a long time learning to pace, but have now decided to see what happens if I don't, since relapses seem to be out of my control anyway. My hope is that I can spend enough time in good health to fulfill some of the dreams I have for life, perhaps even recover enough to hold down an interesting job.

I miss the days when I was a multi tasking active maniac, but I have come to terms with the fact that I will probably never be that way again. It hurts deeply that I lost friends because I became ill. That is something that everyone with M.E. has to go through. I have made some fantastic new friends as a result though, even though most of them are online and I rarely see them.