Under The Weather | MattKendrick.co.uk

Two-thousand-two-hundred-and-thirty-one Days Under the Weather

Spoonie

I’m a spoonie.

I measure my days in spoons not minutes or hours.

I wake up in the morning and some days I have half a teaspoon, some days I have two tablespoons.

The spoons are edible.

Nibbling on a spoon gives me energy.

It takes one nibble to haul myself out of bed.

It takes a quarter of a teaspoon to get dressed, wash my face.

A shower is a whole teaspoon.

Shaving depends on the amount of days since I last had the energy to shave.

Lumbering downstairs, clambering upstairs, making breakfast, washing up, brushing my teeth—every physical action eats into the spoons in some way.

Sometimes I sit there at lunchtime with only the smallest fragment of rusty metal remaining for the rest of the day, the afternoon stretching in front of me like a chasm.

Sometimes I have to divide a task into small manageable chunks of “take off one sock”, “take off another sock”, “take off trousers”, “fold trousers”, “remove right sleeve of jumper”, “remove left sleeve of jumper”, counting the number of steps in advance then ticking off each one, persuading myself I am almost there—just one more step, just one more step.

Sometimes a task is abandoned before it is done.

Sometimes it is all I can do to curl up in bed and cross my fingers that in the morning there are more spoons to come.

Trevor

Trevor arrived on a Wednesday. He sidled in while I was sleeping and next morning he was there, squatting inside me. He was just like any other squatter. Unwanted. Unwashed. A stench to him like rotting turnips mixed with manure. I tried to evict him. I sought professional advice. One time I wrote him a letter but he just sent it back with a scrawl across the middle that read “ha ha ha!” Another time he’d scurried off to wherever squatters go to on a Thursday evening at precisely nine o’clock and I clamped my mouth shut, pinched my nose, clenched my buttocks, tried to hold myself like that for the rest of the night, determined he wouldn’t get back in. But the next day Trevor had returned and he’d furnished my insides with mouldy furniture, bogey-coloured wallpaper, weird distorted landscapes by Dalí, Picasso and Munch. Trevor smokes. Sometimes he stubs out his cigarettes on the alveoli inside my lungs. About three months after he started squatting, he set up a micro-brewery in my gut where he ferments beer the colour of an unwanted thought. He never takes the bins out, just throw his food scraps in darkened corners where they fester and rot. He never cleans, never dusts, never does the washing up. He never showers. He pees in the bath tub. On Saturday evenings eight until late, he invites all his mates for drug-fuelled raves. Boom box dialled up high. The thud of the bass. When Trevor first moved in, he was as thin as the tendril from a spider plant. But now he is fat like a kiwano melon. He has the spikes to match. He has three heads and seven arms, stubby fingers that poke and prod. On Sunday mornings, sometimes Tuesday afternoons and sometimes Friday in the night, out comes his power drill or his chainsaw or his sledgehammer, and he hacks and whacks until my insides feel decidedly not right. They’ve not felt right for years. Ever since Trevor arrived on a Wednesday and refused to move back out.

A change is as good as a cure

I’m lucky I suppose. I’m not a spoonie every day. Some days I’m a forkie. some days I’m a knifie. Some days I’m some other form of cutlery entirely. I have energy but I’m in pain. Or I’m not in pain but I’m overwhelmed by nausea. Or I’m not nauseous but my skin has erupted in hives. Or I’m not itchy but my body temperature has dropped so low I sit there shivering even when I’ve got seven jumpers on and the sun is shining full blast outside. Imagine it like a wheel of fortune. Each day the wheel stops on a different outcome. So, I suppose I’m lucky. Don’t they say that variety is the spice of life? A change is as good as a cure? I just wish that one of these days, the wheel will spin and land on “illness holiday.”

Inexplicable me

I have an inexplicable tongue. On a good day, it is like it has been dragged through a field of nettles and put back in my mouth. On a bad day, it is like a serrated knife has slashed a criss-cross pattern, hacking chunks from the sides. I’ve had an inexplicable tongue for every second of every minute of every hour of every day since the start of August.

I have an inexplicable head. On a good day, it is like it has been filled with a fog of grit and jagged stones. On a bad day, it is like a fireworks factory set on fire, a pain so hot it is all I can do not to scream and scream and scream. I’ve had an inexplicable head at irregular intervals for six years.

I have an inexplicable chest. On a good day, it is like a cuckoo clock and I can feel its tick tick tick against my ribcage, knowing that the cuckoo will soon erupt. On a bad day, it is like someone has lodged their fist around my lungs, another fist around my heart. I’ve had an inexplicable chest since the start of the Covid pandemic.

I have an inexplicable gut. On a good day, it is like a sludged-up canal full of shopping trolleys and rubber ducks. On a bad day, it is like the apocalypse, acid seething through a witch’s enchantment of “bubble, bubble, toil and trouble”. I’ve had an inexplicable gut since the 27th December 2017, and if I’m honest for a long time before that.

I have an inexplicable body. On a good day, it is like a scarecrow, unstable in the gentlest of breezes. On a bad day, it is like a boulder, each limb dragging to the earth, movement managed in a steady chant of just “one step, just one more step”. I’ve had an inexplicable body for most of my life—it took me a long time to realise this.

Why I continue to work

I took time off last summer to try and get my illness under control. Things had been spiralling. Fast. Things I was able to do just a few months before suddenly seemed impossible. Going around to my sister’s house for an afternoon had now become an epic struggle. My food choices were suddenly more limited. My body was throwing up more and more symptoms I hadn’t had before.

Chronic illness as I’ve experienced it over the last six years feels a little bit like you’re descending through the circles of hell in that you fall down to the next circle and whatever you try, you can’t climb back to the one before. What I didn’t want to happen was to contemplate the possibility of dropping down two circles in one go.

Eek!

So, I took time off work. I thought the best solution was to be kind to myself. I am in a fortunate position in that, living with my parents, I don’t necessarily need to earn money to contribute to bills and am very lucky to be able to cast work aside if needs be. I would be a person of leisure. I would write when I could. I would do some artwork. I would play the piano. I would sit in the garden and watch the birds.

The problem for me is that all of those lovely things are very passive. They are things where your mind is free to roam. And where do you think my mind roamed to? A beautiful paradise daydream where everything is hunky dory or honing in on the one thing I was keen to forget?

I recently read "Tomorrow and Tomorrow and Tomorrow" by Gabrielle Zevin where one of the main characters has a problematic foot. At one point, he describes being in so much pain that he can no longer enjoy anything in life that allows the possibility of that pain taking centre stage within his mind. These are normal things like watching TV or reading a book. Things that should be happy things but when your mind just keeps mushrooming with pain, become anything but happy.

In "Tomorrow and Tomorrow and Tomorrow", the character with the problematic foot throws himself into work as an escape route. It sounds counterintuitive, but I’ve found the same – that work is often the only escape route from what is going on with my body.

Did my time off help me in any way? Not really.

Is it wise for me to use work as an escape route? Who knows.

But right now, it is often all I’ve got. My illness keeps getting worse. Week after week. Month after month. But if it provides some sort of escape then I’ll keep working for as long as I can, thinking of ways that I can make that work as enjoyable and interesting as I can so that it becomes the happiness I’ve lost elsewhere.

So, if you’ve followed my story over the past six years and think I must be not so ill because I’m able to work, maybe think again. I work because I need to. It provides me with a sense of achievement. It makes me feel like I have worth as a human being. And sometimes, it gives me a way to escape.

Food

This is a choose-your-own-adventure game. The aim of the game is to choose your food options for the day. Please proceed with caution. Make a wrong choice and you will lose the day (or possibly two days, possibly three). Not choosing is not an option.

Breakfast

1. Please pick from the following options:

A bowl of Coco Pops to indulge your inner child (go to question 3)
Bacon, eggs, sausage, beans, fried mushroom, toast and a cup of Yorkshire tea (go to question 3)
A healthy bowl of fruit (go to question 2)
A plate of plain boiled rice (go to question 6)

2. What fruit would you like? Please pick from the following options:

Banana, strawberries and blackberries (go to question 3)
Melon and kiwifruit (go to question 3)
Orange slices and blueberries (go to question 3)
The occasional very “lucky” apple (go to question 6)

3. Please pick the following consequence for eating sugar, chocolate, dairy, gluten, overly fatty foods, fermentable foods, foods high in histamine, foods high in Vitamin B12 or iron:

Intense stomach cramps (go to question 4)
Severe chest pain (go to question 4)
Overwhelming nausea (go to question 4)
All of the above (go to question 5)

4. Return to question 3 and pick again.

5. Sorry. You lose. Spend the rest of the day in bed.

Lunch

6. Please pick from the following options:

A ham and cheese sandwich (go to question 3)
A bowl of homemade tomato soup (go to question 7)
A healthy salad (go to question 8)
A plate of plain boiled rice (go to question 10)

7. What would you like with your soup? Please pick from the following options:

A slice of homemade wholemeal bread with low-fat spread (go to question 3)
A piece of chocolate tiffin for after (go to question 3)
A piece of “lucky” very mild, very bland cheddar cheese (go to question 9)
Just the soup (go to question 9)

8. What would you like in your salad? Please pick from the following options:

Salad is healthy so I’ll go for lettuce, spinach leaves, cucumber, celery, red pepper, spring onion, avocado, some of those little croutons, some Parmesan shavings, some cubes of ham, cherry tomatoes, radishes and Pumpkin seeds (go to question 3)
Just lettuce and cucumber with some plain chicken and a few boiled new potatoes (go to question 10)
Some greenery with a quinoa risotto (go to question 9)
A pasta salad with farfalle pasta, pesto and sweetcorn (go to question 3)

9. You are in the hands of fate. Please roll a dice:

Roll a 1 or a 2 (roll again)
Roll a 3 (go to question 3)
Roll a 4 or a 5 (go to question 6 and reconsider your options)
Roll a 6 (go to question 10)

Afternoon snack

10. Decide if you would like an afternoon snack:

Yes (go to question 5)
No (go to question 11 with the understanding that you DO NOT EAT between meals)

Tea

11. Please pick from the following options:

Fish and chips (go to question 3)
Gluten-free spaghetti with chicken in a tomato sauce (go to question 12)
Paella made with red pepper, courgette, baby corn, half a plain chicken breast and plain white rice; no herbs or spices or stock (go to question 13)
A fish pie made with salmon, courgettes, fish sauce {gluten free rice flour / olive oil / water / half a stock cube), potato accompanied by carrots and courgette (go to question 12)

12. You are in the hands of fate. Please roll a dice:

Roll a 1 or a 2 (roll again)
Roll a 3 (go to question 3)
Roll a 4 or a 5 (go to question 11 and reconsider your options)
Roll a 6 (go to question 13)

13. Please pick the following symptoms you will probably still need to deal with despite making the safest choices to get you through the day:

Spikes of anxiety linked to bacterial die-off (go to question 14)
Overwhelming fatigue (go to question 14)
Random pains exploding in different parts of your body (go to question 14)
All of the above (go to question 15)

14. Return to question 13 and pick again.

15. Congratulations, you’ve made it to the end of the day. Would you like to play again? Would you like to play the sequel “coping with food smells, food adverts, going to the supermarket, listening to other people talk about food, reading stories where food is a central part of the narrative and going to bed at night and dreaming about chocolate cake?”

How to address a spoonie

Dear Matt, I hope this email finds you well.

NOPE (1)

Dear Matt, how are you?

DO YOU REALLY WANT TO KNOW? (2)

Dear Matt, I hope you’re feeling better.

UM?

Dear Matt, I saw your recent tweet and wanted to let you know what works for me when I have a headache. (3)

😤🤯🤬

Dear Matt, I shan’t say “how are you?” since I know that’s a problematic question for you.

STILL NO! (4)

Dear Matt, I hope this email finds you happy.

HMMM! (5)

Dear Matt, I hope this email finds you in a creative frame of mind.

WELL, NOW THAT YOU MENTION IT… (6)

(1) This is probably applicable to all spoonies. Very few of us can ever answer this with a yes.

(2) I mean, if you really want to know then it’s nice occasionally to have an outlet, but it takes a lot of energy to type that out, and it isn’t something I’d want to be writing in every email every day. Lying is just as energy-sapping. So, you know, not really for me. But other spoonies will be different. Maybe find out and ask what works for them.

(3) I’ve already investigated the healing power of turmeric, ginseng root, berberine, Lion’s Mane, tai chi, elemental diets, sleeping with a toad on my chest, reading the Jabberwocky backwards while balanced on my head, so there’s probably nothing you can suggest that’s in any way new to me.

(4) This sort of remark just shines a spotlight on the issue and makes me feel othered.

(5) I occasionally use this myself, but realistically, “happy” can be a tricky concept when you’re constantly ill. Do you feel “happy” when you’ve been suffering from a bad cold for a couple of weeks? Now, imagine you’ve had that cold for six years. But it isn’t just a cold, it’s also gastroenteritis and a UTI and a chest infection all on top of the other, every day and every night with no end in sight.

(6) This is my current preference. And I should stress that it’s MY preference and wouldn’t be the right angle for other spoonies. Rather than focusing on health, it focuses on something that’s important to me as a human being. But I suppose it might in the future stop being my preference, especially if there are too many days when I’m not able to be in a creative frame of mind because of my illness. Perhaps then, my preference will shift to “I hope this email finds you” FULL STOP.

The destructive power of hope

Hope is lovely. Hope is a rainbow arcing through the sky. Hope is a hot air balloon. Hope is a wisp of candyfloss. Hope is a kite. Hope is a newborn kitten. Hope is the first green shoot of a tomato plant poking through the soil. Hope is the laughter of a child. Hope is an email. Hope is a phone call. Hope is a breath held inside your lungs.

But hope can also burn.

When you live with a chronic illness (at least, this is what I’ve found), you find yourself hoping that you will soon be well. You maybe make plans for everything you are going to do when you are better. But then you don’t get better. You go for doctors’ appointments and blood tests and scans and invasive procedures and there is plenty that is “wrong” with you, but nothing that forms itself into a sensible diagnosis. So, you hope that the next test will be the key. You build up to the possibility that something will be flagged that says you have X disease or Y disease and the mystery will be solved. But then it doesn’t get solved. And your appointments get more spaced out and the doctors lose interest. And you try alternative therapies, hoping that they might change things. You read medical textbooks, you read “The Lancet.” You find a doctor in Australia who has written a paper on a patient who has exactly the same symptoms as you. But then the doctor has retired. Or he has died. And you are back to your research. And the illness is getting worse. And you are carrying the trauma of all your chargrilled hopes like burns inside your soul. And you cling to other hopes like writing a best-selling novel, winning the Booker Prize, seeing something you've written on the shelves of Waterstones. You send your novel to agents and you allow yourself to hope. But then the agents say no. And all you are left with is your illness and your scorched-up soul. And the illness gets worse. And the doctors no longer want to know. And your diet is stripped back to white rice, carrots, courgette and chicken. And you hurt from the tips of your ears to the tips of your toes. And you glare at your hopes then lock them in a cast-iron box. And it is strange, but you feel better at once. Because hope can be a lovely thing. But it can also be destructive.

What’s actually wrong with me?

Well I know it isn’t AIDS or CELIAC DISEASE or HAEMOCHROMATOSIS. It isn’t DIABETES or ADDISON DISEASE or HASHIMOTO THYROIDITIS. It isn’t CANCER (although I suppose that’s always a lurking possibility in anyone’s life) and it isn’t CROHN’S (although my gut inflammation levels are certainly not normal). It isn’t other forms of INFLAMMATORY BOWEL DISEASE (although it could be – let’s not rule this out). It isn’t GRAVES DISEASE or LUPUS or REACTIVE ARTHRITIS. It isn’t SJOGREN’S SYNDROME (it was for a while, but the doctor has changed his mind). It isn’t AIH or AIP or GBS or SLE. I mean, it could be. It could be any of those things. Medical tests aren’t as clear cut as we are often led to believe. There are ranges. There are false positives, false negatives, unsuccessful biopsies. But it probably isn’t. Or it is. Or it could be that I have a disease that is so rare, it is completely unique to me. I have SIBO. And I have CHRONIC IMMUNE NEUTROPENIA. And I have HISTAMINE INTOLERANCE. But there is nothing that the doctors have quite yet found that solves the puzzle of me. I just have symptoms and abnormalities. I have no white blood cells, no red blood cells (or hardly any). I have a consistently low temperature (we’re talking HYPOTHERMIA levels). I have a slow pulse. I have inflammation all over the place. I have ulcers, rashes, brittle hair and brittle nails. I react to every flipping food under the sun and I can see my ribs through my clothes. But can I say what is wrong with me? No, no, no, no, no! Not definitively. Not in any way that explains things. Not even after I’ve been continuously ill for two-thousand-two-hundred-and-thirty-one days.

Normal for me

When you’ve been ill without diagnosis for as long as I have, one thing you get used to hearing from the medical profession is “maybe this is normal for you.” A doctor has run tests and these have flagged anomalies but there is nothing that ties together into a diagnosis. So, they run other tests and further tests until they run out of ideas and come to the conclusion that this is just who you are. This is just “normal for you.”

Writing that out, I can see a certain logic in that. The human body is a complex thing that is dependent on how it has been used and abused, what foods it has been fed, how much sleep it has been allowed, how much stress it has endured, but there is also the lottery of our genetics to contend with. We can’t change who we are at that most basic of levels. Our DNA is our DNA. So, maybe my illness is just “normal for me.”

But even writing that makes me want to scream. Really? Should becoming so ill you lose your job, your independence, your chance of owning a house, your chance of getting married, your chance of having kids; so ill that you live on a scale of how many spoons you wake up with in the morning, that you snatch your happiness from the crevices of the universe, that you accept the fading of your dreams; should any of that be normal for anyone? It doesn’t feel as though it should.

I could accept them telling me that they don’t have the expertise to help me with my problems. I could even accept the harder blow of science not having the solution just yet. But what I can’t accept is that my illness is “normal for me.”

When I research the things that go wrong with my body, I am shocked by how many of them give the following context: “this is mainly an issue that affects menopausal women.” Suffering from a dry mouth – totally normal for menopausal women. Suffering from a tingling sensation in your fingers – totally normal for menopausal women. Wobbly tummies – totally normal for menopausal women.

If my illness has a silver lining it’s that I now have so much more respect for the opposite sex and everything they have to go through at different stages of their lives, things that men (or the majority of men) pass by Scot-free. Men (or the majority of men) should give a lot more thought to that. Especially when you start looking at the solutions to all of those little problems that “mainly affect menopausal women”, namely that there isn’t one – the problem will “hopefully” resolve itself in time. This is just a “normal” part of menopause. It is “normal for them.”

And by extension, of course, the same applies to me, a thirty-seven-year-old white man with all the symptoms of the menopause, hoping those problems will resolve themselves in time and trying not to scream at a doctor’s assertion that this is “normal for me.”

Matt Kendrick