Once Upon a Daydream

Gentle Reader, I will not bore you with the details of my teenaged illness, save say I was diagnosed with fibromyalgia at the tender age of thirteen. I never recovered. It is my contention that “fibromyalgia” is a made-up disease. It’s definition is: “you have some unpleasant, life-crippling symptoms and we don’t know what causes them.” Too often the arrogant doctor will assert that this made-up disease originates in the patient’s head, resultant from hypochondria, depression or malingering. The symptoms are real enough, but fibromyalgia is not real, and never will be, eluding confirmation though laboratory tests, eluding mechanisms, eluding pathology, and eluding understanding.

Around six and a half years ago, I was admitted to hospital with a full-leg deep vein thrombosis, inflicted on me by the third generation Pill. The Pill did terrible things to my body, and so did warfarin treatment. I was never right after that. The progress I had made in recovery from fibromyalgia was reversed, and in the months that followed I crashed into a miserable existence of exhaustion, headaches, back pain, muscular pain, mental fatigue, irritability, attention deficit disorder, and most of the time I felt that my brain was only half awake. I gained weight rapidly. I developed reactive hypoglycaemia, in which three hours after every meal I would be plunged into a shaking, confused state of starving hunger.

I went to the doctor. I told her my symptoms. I showed her the patch of eczema crawling across my face. I explained how I thought that there was something wrong with my hormones, as I seemed to be constantly “hormonal”. She gave me the big brush off. There was nothing she could do about my hormones, because the cure for hormones is the Pill, which gave me blood clots. There was nothing she could do about fibromyalgia. I would just have to grin and bear it. If I had put on weight, I should go on a diet. She gave me steroid cream for my eczema, which made it worse.

So I went away, determined to fix the problem for myself. I went on a low carbohydrate diet. I stopped eating junk food. I began taking huge quantities of vitamins. Within a few weeks I had lost all the weight, cleared my persistent brain fog, and my eczema went away all by itself.

For one whole honeymoon year, I felt better than I ever had in my adult life.

Then I caught bronchitis in Nice, France. This was not some ordinary variety of bronchitis, but the worst bout of illness I have ever experienced as an adult. As well as having problems breathing, I had a terrible sore throat and a hoarse voice, and there was a strange lump in my throat. I began to have palpitations, ectopic beats, night sweats, muscle twitches and cramps, and I was very frightened by the behaviour of my heart. I could feel myself gaining weight day by day. But I recovered, eventually. Over the next few weeks I lost half a stone without even trying. I had tons of energy and ran around the place fixing up our new apartment in Nottingham. Wasn’t I pleased with myself? More fool me, this was part of the pathology.

Six weeks later I reached the top of the roller-coaster and began the descent. The eczema reappeared. My brain fog returned. I was fatigued from the inside out. The back pain returned. I couldn’t concentrate on my work at all. I was in floods of tears over nothing, and I didn’t understand why. I kept on trying to fix myself with my healthy diet and tons of vitamins. After all, it had worked the first time, hadn’t it?

But this time it didn’t work, and over the next six months I would gain a stone and a half in weight and lose a significant proportion of my muscle mass. I fought it every step of the way. The curtain of brain fog descended. I no longer had the concentration power to work full time, so I had to reduce my hours to part time. I was fatigued and achy and prone to rashes and frequent headaches. I felt like I was suffering from constant flu, with pains in all of my muscles and utter exhaustion. I became very withdrawn, unable to cope with life’s normal stressors. I should have gone to the doctor again, but I didn’t, because the doctors had never been able to help, the only pills they tried to give me as a teenager were antidepressants that made me very ill, and they often looked at me as though I was a fraud.

I struggled on and on, trying different diets and vitamins to control the mysterious weight gain and try to improve my skin. Eventually I found something called the failsafe diet, which cuts out food chemicals from the diet – natural salicylates, polyphenols and biogenic amines that the body has to detoxify, and which can affect the body in many unpleasant ways. I discovered that I had a horrendous number of food intolerances, caused by deficiencies in enzymes meant to destroy natural toxins. I underwent my second period of recovery and restoration. There were very few foods left for me to eat, but at least I could think straight again. My higher brain function was restored to me, I was no longer fatigued and in pain every waking minute, and I could leave the house without feeling ashamed of my eczematous skin, which cleared up very rapidly.

I lost a number of friends over my dieting and health obsession. I think they thought I was mad, and no one likes being around an ill person in any case. I’ve been called many things I am not, and judged lacking for not being normal. From my position, I have acted only rationally in the face of adversity. Instead of lying down and dying, I have fought tooth and nail to regain my health and retain some dignity in my appearance, controlling my weight and my eczema as best I can. If you felt like you had a really, really bad hangover and flu every waking hour of your life, wouldn’t you do your damnedest to get better?

So there I was, scraping along at rock bottom, with concentration so poor I could no longer work at all, made a virtual recluse by the collapse of my self-confidence, my inability to cope with other people, my constant fatigue, and my desperate desire to avoid any social occasion that involved food, because most foods made me ill.

Then before Christmas, I got food poisoning – the irony. Yersinia, in all likelihood, which has symptoms often mistaken for appendicitis. After the Yersinia, I went through a mysterious period of recovery where my skin was very good and my weight looked after itself. I got tons of work done and had loads of energy and raced around fixing up the house for Christmas. More fool me, it was part of the pathology.

Then in the new year, I lost my appetite. It just vanished. In response, I started eating less, thinking it was a blessing, really, as I would be able to lose some weight for once. More fool me, this was also part of the pathology. For four months I dieted, and though I should have lost a pound every week, I only lost eight pounds in total.

Two months ago, strange things began to happen to me. Dots in my peripheral vision. Noises in my head. My concentration worsening further, if such a thing was possible. My memory seemed to be disintegrating, and I couldn’t remember the simplest things – forgetting why I had left the house, forgetting routine items of shopping. My eczema flared up. I was very touchy and emotional. I had aches and pains all of the time. The headaches came back. Shortly, I could feel my heartbeat. My heart beat pounded slowly, day after day, and all day and night I could feel it. I felt constantly cold and weak. I developed problems breathing. I was so short of breath that I felt like I had to drag in air just sitting still, as though I wasn’t getting enough oxygen. I developed sleep apnea. I trembled internally, frequently felt faint, and had low blood pressure. I was at once sleepy, yet I had insomnia and couldn’t sleep. I twitched and had shocks to my brain like little seizures. I woke shivering with cold. My body temperature hovered around 35.5 degrees Celsius, half a degree above clinical hypothermia. I had these strange tingling sensations in my fingers and drawing sensations in my wrists that I would later discover were Carpal Tunnel Syndrome.

I thought it was my fault. I thought perhaps I had given myself anaemia, that all my desperate, proud attempts to keep my weight down and control my eczema and attention deficit disorder and full body pain had finally come back to bite me. Something was terribly and fundamentally wrong, and it couldn’t possibly be “fibromyalgia”. I went to the doctor, who, in typical style, told me I was “just anxious” and probably had an infection. I should wait for a couple of weeks and then come back.

I waited through two torturous weeks of hell, and asked to see a different doctor. Finally, and perhaps because I did not mention the demon word fibromyalgia, this doctor listened to me, and she ran some blood tests on me. When the results came back, I didn’t believe her.

The demon has at last been named, and the demon’s name is not anaemia, not fibromyalgia. I am not a hypochondriac. I am not a malingerer. I am not a diet-obsessed freak who thinks food is poison. Food really is poison, to me, since I simply have no enzymes with which to deactivate its toxins. It is not my fault. It never was. I am someone who simply slipped through the cracks of the healthcare system, forgotten, vilified, left to battle alone.

The demon’s name is primary hypothyroidism. My thyroid gland has been destroyed by a series of unfortunate infections, via a condition known as subacute thyroiditis. While the infection is active, it causes a brief period of high thyroid hormone output as the cells in the thyroid are destroyed, causing weight loss, high metabolism, and high energy output. This is then followed by a longer period of hypothyroidism, in which the body’s metabolism shuts down, enzymes are not manufactured, many vital functions, including brain functions, are impaired, the body grows cold, and energy is stored instead of used. Most people recover and their thyroid eventually heals. I’m one of the people who doesn’t get better.

Hypothyroidism is a devastating, insidious illness. It exhausts the adrenal glands which destroys blood sugar control. It destroys the muscle tone of the body, including the heart muscle. It impairs the function of the brain and can cause rapid cycling bipolar disorder, depression, anxiety, some forms of autism, and hallucinations. It causes a loss of confidence, an intolerance of stress, and an inability to cope with people and social situations. It shuts down the body’s energy production, it raises cholesterol levels, causes the skin to bloat and accumulate water, weakens the immune system, causes skin infections, and causes the blood to clot. The sufferer truly suffers, dragging themselves through a shadow world, in chronic pain, unable to cope with their daily existence.

Twenty years ago, I was misdiagnosed with a disease that doesn’t exist: fibromyalgia, which means, “you have all the symptoms of hypothyroidism, except we forgot to test you for that, or, your labs were just inside the normal range, so we didn’t bother to pursue that line of inquiry any further, even though a short treatment trial of thyroxine would not have harmed you at all.”

Hundreds of thousands of people have been misdiagnosed with fibromyalgia, because their thyroid lab tests fell inside the boundary of the normal range. Many misdiagnosed people are now recovering through administration of thyroid hormones, some, having obtained them without prescription via internet pharmacies, because their doctors would not listen. This is an open secret in the hypothyroid community, one which, despite six years of scouring the internet for answers, I was unaware. In a way I am fortunate, because my lab tests are out of range, and they prove beyond a shadow of a doubt that I have a real, physical problem. Yet what hurts me most is that some of my friends still do not understand.

For twenty years, this demon has been eating away at me, and I did not know its name. This demon has stolen my life away. For twenty years, my body has been crying out for a hormone with which it has not been supplied, a hormone called thyroxine, which costs the NHS less than one pound per month to prescribe. For twenty years my body has been dying of hypothermia, after the first of a series of infections assaulted my thyroid gland.

Now I know the demon’s name, I know how to fight it, and I have a future.