Mum’s eulogy

It was Mum’s funeral today. Eleven years ago, almost to the week, I remember standing, looking out of the dining room window at the snow falling, while we waited to hear whether Mum had survived the operation on her brain to remove the aneurysm that had caused her to collapse and almost die.

“It snowed when she was born,” Mama said. Mama is – or was – Mum’s mum. She took the snow falling outside as a good sign. Mum survived the operation but was left with serious disabilities that have lead to her slow decline and eventual death.

Perhaps it is fitting that today, out of the blue, on the day of her funeral, it snowed again.

This is Mum’s eulogy.

MUM

Mum was a very special person. She touched the hearts of many people. Even though Mum was severely disabled, she couldn’t be kept down. Many people have come to us and told us that what they remember most about her was her lovely smile and mischievous giggle.

Mum grew up in Nottingham. She left school at sixteen to become a nursery nurse. She and Dad married young and moved to Leeds while Dad studied for his degree. This was the only time she lived away from Nottingham, and it wasn’t long before Nottingham drew her home again, to her family.

Mum was happiest working as a nursery nurse. She was a very caring person and loved small children. This reflected in her parenting. When Mum fell pregnant, she happily gave up work to raise my sister and me full time. She was a hands-on mother who spent many hours playing with us and teaching us, and we thrived as a result. She always pushed us to achieve. Because of her support, Sarah was able to study music, and I was able to go to university.

When we were old enough, Mum went back to work, as a teacher’s assistant at Priory Junior School. She taught a boy called Daniel who had Down’s syndrome. When Mum first started working with Daniel, he could barely speak, and his parents and teachers thought he would need lifelong care. Mum taught Daniel to hold conversations and speak in sentences. He learned to read and write. Because Mum helped Daniel, he was able to go on to a regular secondary school. He eventually learned to drive and was able to support himself by becoming a delivery driver. I have no doubt that Daniel achieved the independence he did because Mum helped him.

Mum went on to do an Open University course in psychology and sociology. She was a star pupil who consistently scored ‘A’ grades. Unfortunately, after three years she became too unwell to finish her degree when she developed fibromyalgia. Instead, Mum became active in the formation of the Nottingham Fibromyalgia Support Group. Today this group is one of the largest and busiest in the country.

Sadly, illness defined the last twenty years of Mum’s life. First, she endured fibromyalgia, and then about eleven years ago, she had a brain aneurysm that disabled her and left her with many health problems. They say that that which does not kill us makes us stronger. They say that character is defined by suffering. It is a testament to Mum’s strength of personality, and her fighting spirit that she survived her illness for so long. Most people would find it impossible to deal with paralysis, but while others would have given up, Mum kept battling on, and though she sometimes had her dark moments, she remained surprisingly stoical about her condition. She was very brave and stayed strong right up until the end.

The last few years of her life were quite peaceful. Mum loved gardens and wildlife. Uncle Kevin and Dada remodelled the garden at Conway Road, and she was thrilled with the result. She would sit contentedly in her chair for hours watching the fish in the pond and the birds at the feeder.

Mum was very close to her family. She loved a gossip. She was always the first on the phone with any news. I often remember her talking excitedly and laughing on the phone in the evening after dinner, with Aunty Jill or Mama. She and Mama had an extraordinarily close relationship and saw one another other every day, and spoke on the phone at night. They were best friends.

Mum was an accomplished cook, and she loved to bake. She was very patient with Sarah and me and would set up baking sessions in the kitchen to make buns or jam tarts or chocolate crispies. She would supervise us as we spooned mixture into bun tins and she always let us lick out the mixing bowl.

She was a skilled seamstress. She sewed the bridesmaid’s outfits for her own wedding, and several of Dad’s suits. She regularly made curtains and cushions, and outfits for school plays and ballets. She was pretty cool for a mum, and would happily get involved in our teenaged fads, from Star Wars to Nirvana. She made stunning mini-dresses for Sarah to wear on stage with her band. I remember tie-dying cotton sheets with her to turn into hippie dresses when I was at university.

She loved animals and had a habit of adopting stray cats when she was younger, which Sarah has inherited. She loved to laugh over the mischief our dogs got up to, even though it was often at her own expense. She loved to spoil them when they were puppies, and I remember how I often heard her voice chiming through the house, and their excited barks as she called them for treats.

She had a very mischievous sense of humour. I remember on one occasion she bought a whoopee cushion from a joke shop, ostensibly for Sarah and me, and proceeded to use it on everyone she knew. Dada was her favourite target.

What I remember most about Mum is that she was always very sensible. She was a source of great wisdom and advice and was easy to confide in. She always looked out for us and was quick to defend us. She was the most levelheaded person I know, and I feel that calm reasoning of hers has helped us through many troubles.

If she were here now I think she would be telling us to look after each other, because that is what Mum was best at – being a mum.

Naming the demon

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.

Fox pancake

I once, randomly, found myself in the photography exhibition, Familiar British Wildlife, by Clive Landen. The name of this exhibition was ironic. The wildlife were indeed familiar: they were roadkill. I felt the exhibition almost had a political point to make. The wild animals we get to see in Britain are usually dead on the side of the road. I myself never saw a badger up close until the day I stood staring at one on the yellow line next to my bus stop on the way to work. He was stiff and dead with a little trickle of blood coming from his nose. Some days, perhaps something to do with the moon, the carnage on stretches of roads through the peak district is beyond belief. Like some kind of nightmarish prophecy, on the morning after my grandmother died, there were six dead animals on the road from Matlock to Sheffield. One was a sheep.

So picture the scene: it’s almost midnight. I’m driving back from Nottingham along a black-as-pitch stretch of dual carriageway with bust cat’s eyes and worn white lines. In spite of the poor visibility I make good headway because the vegetation has grown high enough that putting my headlights on full beam doesn’t disturb the traffic coming in the other direction. Then I draw up behind a guy who can’t drive. He has his lights dipped, and he’s doing sixty. I don’t feel comfortable overtaking him as I’m too close to him to put my headlights back on full beam, and wouldn’t dream of driving fast enough to overtake him with them dipped. The road is narrow and can be unexpectedly curvy. So I stay behind in the slow lane.

The guy behind me has other plans. When he catches up he’s intent on overtaking us both with his headlights dipped. So there they are: one in the left lane, one in the right lane, neck and neck in front of me, driving through the pitch darkness. Then, right at this very moment, out of the gloom streaks a fox, silhouetted in the headlights, as close as can be to the cars.

The overtaker swerves left violently to avoid the fox, almost hitting the other car, then he swerves right to correct himself, almost hitting the reservation. The fox streaks off into the grass, untouched.

Behind them my heart is pounding through my chest. I would have been too close to avoid the crash.

Rivelin valley swims

Jasper loves a good swim. I bought him a child’s paddling pool and he’s spent the last two weeks jumping in and out of it and begging us to throw his ball in the water for him. I’ve never known a dog love water so much. I’ve even turned the hose on him to cool him down and he’s been surprisingly happy about it.

He’s still a puppy, only eight and a half months old. He only learned to swim a few weeks ago. I took him down the Rivelin valley where a tannin-rich stream rushes through a wooded gorge. There used to be a series of mills along the valley where people ground flour or made cutlery on smooth grindstones. There are several disused millponds fed by the stream, and though they’re murky and dank, Jasper was happy to wade around in them. I threw his ball just a little further into the pond each time, and he took his first swims out into the deep water. Bless him. He did very well for ages, and then he suddenly lost his rhythm on a particularly long swim and started splashing the water up with his front legs, which astonished him so much that he chickened out and turned back to shore in a panic. He stood on the beach howling at his ball. It took much encouragement and praise before he would go in and get it again. That was enough for one day.

Skull crackers

I had a massive migraine the other night, brought on by a combination of caffeine withdrawal hitting me at exactly the wrong point in my menstrual cycle. I don’t think I’ve had one that bad since I was a teenager. I was very close to barfing. Paracetamol didn’t touch it. I had to sit under an alternate hot/cold shower for twenty minutes to make an impact. I also ate a hot bread roll and drank a cup of warm milk. Bread often makes me nauseous when I eat it by itself, but toasty buttered bread is the only thing that can take off a bout of nausea.

Then I annoyed my partner by sitting in front of an infra-red/visible red light in bed for ages when he wanted to go to sleep. It’s amazing how it undoes the tension in my shoulders and back. Something to do with endorphins. The pain was less after the shower and the food, but the red light took it off completely.

Sugar soap

I inherited two lovely white wicker Lloyd Loom chairs from my grandmother. Our cottage was too small for them! When we moved to Nether Edge we suddenly had lots of empty rooms with no furniture. My Dad bought the chairs up from Nottingham for us. They are a bit battered and have been serving us as garden furniture. I decided they were in need of sprucing up, so I’ve bought some new seat pads for them and some spray paint. I sugar soaped them and scrubbed them down, and they’re astonishingly white now. Ready for the paint job.

The sugar soap is bright yellow and has a nasty additive in it – probably tartrazine or sunset yellow – that gave me a red bumpy rash all up my arms. It may have made me cross too, but that might just have been because I was fighting Jasper for the scrubbing brush the whole time.

My grandma bought the chairs when she lived in Portsmouth Southampton, in a sale from a cruise ship that was being renovated. This was in the 1950s. Lloyd loom still make the same chairs. I was astonished to discover that they would be worth over £300 each if they were new. I’m not sure they will be garden chairs for much longer!

Alarmed

Yesterday was eventful. We were woken at oh-jeesus-wtf-six am by a phone call from the alarm company who monitor J’s office; apparently the alarm was going off. When this happens they are supposed to send someone round to investigate for us, but apparently “no one was available”. I stumbled out of bed to drive him down to work. Total silence when we got there. No alarm.


Paddling in the stream
Originally uploaded by the witch

There was no point going back to bed, so I dragged Jasper out for his walk. Poor Jasper. He looked knackered. There had been a festival in Endcliffe Park and there were empty beer bottles and cans and the remains of barbecues all over the field, which were very interesting for a four legged creature with a big nose, far more interesting than catching a ball.

Jasper is a water dog and spends most of his time leaping in and out of the stream when we go to the park. It was still very early and quite cold when we left. We crawled home in the car in commuter traffic, and Jasper shivered all the way, despite being wrapped in two towels.

Jasper at twelve weeks


Jasper with a rawhide chew
Originally uploaded by the witch

Jasper is growing very fast. He can now jump up on the footstool in the living room all by himself, and from there jump onto all the furniture. Nowhere is safe anymore! He’ll grab any piece of mail, mobile phone or remote control he can find!

Psychopuppy


Jasper being an ankle biter
Originally uploaded by the witch

Sometimes Jasper goes into psychopuppy mode. You can tell by the look in his eyes that he’s building up for a big explosion.

He starts tugging at the hems of people’s jeans and biting their ankles and makes excited yapping noises. I think he just wants to be played with, but he’s got very sharp teeth!

He loves eating furry, woolly things. I have a very long woollen cardigan that I wear around the house, and this woollen cardigan is like a red rag to a bull when it dangles in front of his nose.

When he gets in this state it’s impossible to control him or discipline him. He’s like a little tornado!


Bad dog!
Originally uploaded by the witch

He’s always very sorry about it afterwards.

Jasper barking at a plastic bottle

Yesterday Jasper found his voice. He learned to bark like a grown up dog. The culprit was a plastic bottle that made an interesting scraping sound when it was kicked across the floor. He was very scared of it and kept circling around it and barking and mock-biting the air. Maybe he thought it was a funny looking snake?