14 August 2023
Seaweed Pressings from Lockdown Trips to the Beach
This seaweed was collected during walks along my local beach, Exmouth, during covid related lockdowns.
The best time to look for seaweed is after stormy weather, and most of this was collected during blustery early morning walks. There are lots of different colours and shapes and sizes of seaweed, but my favourites to look for were the feathery pink and purple pieces.
Seaweed pressing involves several steps spaced out over a few weeks. First, it needs to be gently washed in fresh water. Whilst the seaweed is suspended in the water thick paper needs to be carefully submerged below the seaweed and slowly lifted out to keep the seaweed from clumping together. It then needs layering with more thick paper and sandwiching between heavy hardbacks. The paper needs to be replaced every few days to make sure it completely dries out, and this can take a few weeks.
Once pressed, I placed them in glass frames and some have started to slightly fade from the sun.
24 April 2023
Written 18th January 2022
Today is the tenth anniversary of my thyroidectomy. It is ten years since I went under the knife to get the bastarding thyroid out of my neck and myself back to full health.
Quick recap for those of you not around in 2011/12
June/July 2011: horribly anxious and feeling a wee bit crazy, I nipped along to my GP and said, “I feel a tiny bit crazy and very anxious….and by the way. This lump has just appeared in my neck about three weeks ago.”
“Ooh,” says my GP. “Better test you for some things, then! Let’s test for cancer and hyperthyroidism.”
The next day, I come home to an answerphone message, “Hello Ms Hodges, this is the GP, please phone me immediately, your bloods are back and I know what’s wrong with you and it’s URGENT.”
Me: [drives to Surgery at 90 mph] WHATS WRONG WITH ME?!?!?!
GP: you are soooooo thyrotoxic* it’s made you a bit mad! Here, take these drugs and I’ll refer you to the nice endocrinologist. It’ll take about six months.
Me: No. I have *brandishes paperwork* PRIVATE HEALTHCARE (thank you Dad).
GP: Oh! It’ll take ten days!**
Six months later: 18th January 2012: the surgeon takes me down for a ninety minute thyroidectomy, but the thyroid is so manky and stuck to everything in my neck that it takes five hours instead.
Fun times, Gentle Readers, fun times. The long and the short of it is, I have Big Operation, and spend the next nine months working out my medicine doses with the surgeon, until I am well enough to go back to work and my full-time, night-shift job. (Which I promptly quit when my landlady serves me notice, but THAT is another story.)
When I look back now, ten years on, I can objectively see how awful all that recovery was. It was such hard work, and I felt terrible all the time. I kept reading articles about recovery that would tell me it would take as long to recover as I had been ill for – the doctors didn’t really know when I first became ill with my thyroid, because I didn’t have “normal” symptoms, but a rough estimate looked like I’d been ill for about five years.
I felt like a five year recovery period was unbearable, unsurvivable. How could I spend five years recovering from this operation, feeling as appalling as I felt then? Everything hurt, I couldn’t wake up. I couldn’t bring myself to walk downstairs. I felt griefstricken for the thyroid that had been, you know, trying to kill me, and furious with my body that it hadn’t bounced back once free of the murderous interloper.
And that recovery was awful. It was horrible – it took ages and ages to find a combination of medicine that made me feel human again, and I thank my lucky stars to have found a GP who willingly prescribes it. But once it clicked? Once we found that magic combo? I felt fantastic. I *did* things again – things I hadn’t wanted to do for years. I could wake up in the morning and not sleep for fourteen hours. Ten years on, I am recovered from my thyroid problem, and with the help of my little white pills every morning, I get up every morning and face the day.
I haven’t missed it, the thyroid. It’s funny, things that try to kill you aren’t worthy of nostalgia.
I miss other things about the hyperthyroidism. Like, being able to survive on four hours of sleep. That was always nice. And the fact my brain was hyperactive and could answer questions really quickly, and retain loads and loads of information.
Towards the end, I’d even showed some typical symptoms, and started to lose weight. I miss that a bit. But not much. Because #bodybeautiful #bodypositivity #fatisjustaword etc. etc. etc. It was just kind of convenient to eat a McDonalds for breakfast and still drop four pounds in weight. (The first time that happened, I did actually wonder if I had stumbled onto a secret that no-one wanted us to know: McDonalds was actually diet food. It is NOT and the reason for the weight loss was because my thyroid was determined to destroy me from the inside out. I’m still a bit gutted.)
And the sleep thing. Oh! As a life-long insomniac (seriously, I just…didn’t sleep as a child), I’ve grown used to a…disrupted sleep pattern. But what I wouldn’t give for the energy, the verve, the get-up-and-go of the thyrotoxic days. YES, my heartbeat was a resting pattern of 96 beats per minute, and YES, any attempt to move would result in it shooting up to 120bpm, and YES, I was often on the verge of stroking out with rage, but my GOD, I had energy.
Ten years later, I am a little older, a little wiser and a lot more tired in myself. I still don’t sleep, but now I don’t have the mad murder energy to power me through. Maybe that’s just aging, though. Maybe no-one retains the mad murder energy of their twenties into their thirties. I take naps now. I had one in the middle of writing this piece. It was lovely.
And I won’t pretend – I have other health problems now that are just as challenging in some ways. But if I can survive my mad murder thyroid trying to kill me from the inside out with hallucinations, suicidal impulses, heartrate through the roof, sweaty breathlessness and possible exploding eyes (oh I left that risk factor out of my summary above!), I can survive anything.
So I hope you will join me in raising a glass this evening to Mad Murder Thyroid. May she rest in peace – because I have survived.
*thyrotoxic = overactive thyroid
** the NHS now has a policy to ensure everyone is seen within 16 weeks of referral, and you have the right to choose, and you can sometimes choose private doctors anyway. But things were very different ten years ago. Also, no one knew how ill I was until they actually cut my thyroid out, and if they had, I’d have skipped the queue.
You can find more from Lucy at: https://loopsandflicks.substack.com/
17 April 2023
Does rare disease equal special treatment? Unfortunately it hits barriers of disbelief and having endometriosis undiagnosed for years and years you’d have thought I would be resilient. But I’m human, full of love and positivity, living with Relapsing Polychondritis makes me 3 in a million, rare, and still discounted by those unaware. It’s attitude and listening we need for our advocacy. Coordinated care with specialists and holistic treatment and understanding. Please.
I can be found on Instagram, Twitter, Facebook, under @missysmatters sharing poetry, memes like these and trying to make a difference.
17 April 2023
A one-eyed woman with a hole in her neck, a hole-necked woman with daylight
shining through, a transparent woman with a no-through uterus, a cul-de-sac woman
with a legacy of no one, an unproductive woman who thinks too much, a woman with a full agenda and an empty diary, an empty woman who finds it hard to hold her head up, a heavy-headed woman with nothing to say, a quiet woman with a kettle full of words. A teatime woman serving bullets on a doily, a woman with shadow tattoos, a shady woman with a pocket full poison, a poisonous woman with an urge to make a list, a pencil woman — faint, quite easy to erase, a crossed-out woman with an arrow: insert here. An abandoned manuscript
of a woman. A woman counting gaps, gauging depths. A woman who counts. A woman
at the bottom of the well. A woman who does not count. A woman counting the days,
the changes, the days left to change. And the nights.
7 March 2023
Hers was the uterus that grew the foetus,
and the ovum within it, that grew into me.
Hers were the hands that pressed my first clothes
and held my wrist too tight crossing main roads.
Hers were the hands that tucked the top sheet
so tight I couldn’t move beneath it – hands
that she touched to her mouth
when she laughed and showed her crowns.
Hers was the mouth that told me, firmly,
there’s no such thing as a willy; a firm mouth
that said to me, solemn as a monarch:
five minutes of silly can ruin a girl’s life.
Hers were the hands we wanted the baby to kick for,
whose fingers stretched to cradle it, hers the hands
that pushed and pulled at the hook and wool, shawl
settling like snowfall in her sunken abdomen.
Hers was a uterus removed when she was only thirty-two,
when my mother was just nine, and I was just egg.
Hers was a uterus removed and a cervix removed and ovaries
and Fallopian tubes removed; and hers was a mouth
that said to its daughters by only way of explanation:
it all went a bit squew-wonk.
16 December 2022
(after Dr Ginsburg)
Dr Karen Gallaty, CBT Professional Psychology Clinic
They don’t know exactly what causes Sarcoidosis, but they know stress exacerbates it, so the clue, showing real competence, is to avoid stressful situations.
We’re told we need the skills to face challenges but not how to deal with face challenges, when the cheek drops to jowl, eyelid droops, partial paralysis, like the numbness from the dentist’s anaesthetic, on the day soup was on the hospital menu.
You don’t know how debilitating it is, or quite how incompetent you feel, not being able to whistle, how much you suddenly want to whistle, instead blowing noiselessly like a child through a weakly shaped O.
This doesn’t work when your legs frequently give way. Resting equals seizing up. You jokingly mime winding a crank to stand up, but this is no longer a joke. Knowing if you fall, you’ll be lucky to get up within 10 minutes, the bruised knees taking several weeks to recover have nothing on the bruised ego. Humiliation does not equal confidence.
This was written pre-Covid, pre being diagnosed with Sarcoidosis, pre being orphaned at 51. Connection to reality – cut. Connection to normality – cut. Connection to your body – cut.
Unfortunately, steroids make you doubt who you are with their gift of mood swings and weight gain. As a character in your own life, you no longer have script control or editorial input.
When you can’t even contribute to your own home, you wonder if you will ever be able to travel, let alone impact on the wider world. So you write.
Sadly it is the condition that creates those challenges. Catch 22 or what doesn’t kill you makes you stronger.
Less elastic bounce, more memory foam, falling back into the indentations of your life. Control is accepting you have no control. The drugs attempt to control but there’s still the flare ups with their curved balls. Like humans believing they can control fire, warming, cleansing, destroying.
The 7C’s of Resilience – The Patient
This would place 1 through 7 if it were a competition.
I blame my father’s employment through my childhood for this addiction, when working for an American company of intergalactic aspirations (Mars, Milky Way, Galaxy), Friday was staff sales day.
Although my hormones long since abandoned this sinking ship, I still crave chocolate without monthly restrictions. Even as a vegan, there’s now no shortage of options, with many copies of traditional confectionary competing, if not improving on the original.
Cacao, cut with cayenne and cardamon (the drug reference intentional – one Belgian chocolate maker once created a device to snort cacao powder), is used in South American shamanistic rituals. I find Booja Booja truffles will suffice.
Other meditation apps are available, but with this one, Eva Green can read me a bedtime story. And although being goal driven is probably not conducive or compatible with calm, I like seeing how many days in a row I can go without forgetting to do my ‘Daily Calm’.
When you google ‘benefits of calm’, top of the suggestions is ‘benefits of clams’. As a vegan this isn’t much use, and first of the attributes is ‘great for male fertility’, but I am intrigued why this was a suggestion. Obviously the same programmer who works out the substitution options that supermarkets give you when your choice is unavailable (no grapefruits but perhaps you’d like some grapefruit shampoo, a bunch of roses instead of the chocolates?). I do like the line of research ‘Why being calm is a superpower’ but converting to an Avengers or Superhero name is still eluding me.
As I’ve mentioned, stress can kick start Sarcoidosis. The goal is definitely Keep Calm and Carry On, with of course, as above, Keep Calm and Eat Chocolate.
Other fabric softeners are available.
My brain lumps, in lay person’s language, are also pressing on my hypothalamus, the body’s smart temperature control centre (multitasking with releasing hormones, controlling appetite, regulating emotions etc.) which caused near melt down in the summer. This is now cold comfort, but I have moved in to my Oodie (a giant oversized furry hooded top come blanket), designed to control the desire to turn on the central heating before November.
Bonus C’s in this category are contentment, convenience, consolation, compassion, and cheer. But being told to ‘cheer-up love’ is a whole other rant.
Unfortunate in my childhood associations with the comedy brothers (who knew there were actually four of them). But many cliches are true, and laughter is a great medicine, and one contagion I don’t want to mask against.
Bouts of laughter have been proven to boost the immune system, relax muscles, aid circulation, and protect against heart disease, also lowering anxiety, helping mental health, improving mood, and increasing resilience. All down to the release of endorphins, which have a similar effect to narcotics, but much cheaper in many ways.
The study of laughter both physical and physiological is called gelotology which sounds more like the study of ice-cream, and a way to get it into a list of my C’s.
Contentiously a bit of a marmite subject, but I love both cats and dogs, and marmite and coriander.
I could not own one due to the danger of tripping over it, and the smell (and meatiness) of the food. But this does not stop me from knowing the names of all our neighbourhood cats and unable to resist a pop-up cat video. A quick search of this subject shows I’m not alone. According to research there are more than 2 million cat videos on YouTube, which have been watched more than 25 billion times. Three quarters of cat-related media observers do not actively seek out cat content but happened across it during their daily internet usage. So they say. It’s estimated that 15% of internet traffic is driven by cat videos. It might not be quite what Cerf, Kahn and Berners-Lee envisioned, but maybe there is some hope for humanity.
Watching human videos is fine for your cat but as they have three times the light receptors in their eyes, please turn down the brightness on the screen.
Not all conditions are curable, but we live in hope that a cure may be discovered (and tested and approved) in our reducing lifetime. We know there are ‘wonder’ drugs for our illness out there, with no guarantee of success, but are more expensive than the cheaper ones we are started on. It’s a trial-and-error process we are warned. A trial of both medicine, and location lottery.
As well as ‘curing’ a disease or condition, its homophone in the world of crafts is to harden with some additive or other agent, like epoxy resin going from a liquid to a solid. You are always advised to factor in longer curing times.
Varnishing, shining the surface that everything is okay, to vanishing and that elusive combination of drugs, or cure.
Creating a new world in which we can adapt, or it can adapt to us. Creating a new vision of our future in which we can live. Creating opportunities, not challenges.
Conquering cheerfully, converting cannily, changing consciously, constructing capably, chancing courageously, resiliently.
16 December 2022
Eighteen months ago, I had never heard of you, and now you dominate my life. My lifestyle of vegan, non-drinking, yoga practising and gym going kept you suppressed, until a year of grief and stress, and the joyous co-incidence of menopause, caused you to rear your interfering head.
Many people never even know you are there, you lurk, hidden, often confusing with your random symptoms, many a time mis-spelt and mis-diagnosed, but ready to pounce.
As you are rare, I suddenly became interesting and complicated to the medical profession. I’m glad someone thinks so, maybe I could put it on my tombstone. ‘We’ve got a Sarcky’ obviously rippled around the wards, until all trainee doctors were sent to my bed to have a go at their diagnostic skills.
Thanks for making me learn how to use a walking stick and observe the new reactions of the public to this. And for the nodules of inflammation in my brain, my spine, my chest, my skin – so far, these Granulomas I call Gremlins, hope you don’t mind! Alternative therapies advise me to visualise them being eaten by Pac-Men. But they are getting in the way of communication to my legs, my balance, and varying bodily functions, and just for fun you like to make my face twitch too with that curious sensation like when it comes back to life slowly after a dental injection, and thanks for that symptom on the day it was soup for dinner in the hospital!
Oh, and the pills I must take to just about contain you that make me fat (5 stones increase before I could turn the tide), moon faced, depressed, that made me high then low, and have no immunity – great timing with Covid, so thanks for the shielding too. On the Sarcoidosis Facebook support group, Prednisolone are known as the Devil’s Tic Tacs. And then all the other rattle of pills to counteract the side effects, and the blood tests to make sure the side effects aren’t causing new problems. And then the other tests: MRI scans, CT scans, PET scans where you have to avoid pregnant women and children after, as you are radio-active – I was almost disappointed not to glow. Then more intrusively the EBUS lung biopsy and lumbar puncture: camera and scraping tool down your throat how I imagine waterboarding feels, and foetally curling up listening to the doctor ask for a bigger needle. I don’t think the poor Egyptian doctor quite got my sense of humour when I said it must be like trying to get a camel through the eye of a needle, after four failed attempts. Thankfully a positive diagnosis from a skin biopsy saved me a second round of poking around in my spine, next time would have been with laser guidance making the mission of checking the spinal fluid for protein levels potentially feel like part of a video game.
The brain fog and fatigue are fun too. ‘It’s Methotrexate Monday’ being a completely understood household excuse now.
But you weren’t Cancer. So I’m supposed to be relieved I only have a rare, frequently misunderstood disorder of the immune system, but am still alive.
Living with Pulmonary & Neurological Sarcoidosis
16 December 2022
16 December 2022
These are my people –
the men who cast their lines into nothing,
hoping there is sea below them.
I give them my eyes,
where the red dots blinking on distant cranes
refract, and wobble against the wet line.
I give them each my own, unloved body.
All of us are sat, waiting,
for the faintest movement, the I’m still here.
It is so easy to feel completely alone
in times like this, where the sky meets the sea
at an unknown point, and the future trembles there,
unseen, and says I’ll be waiting.
It is so easy to see them there, lines slack
between cold hands, and pray, are we the same?
Is there someone else awake when I am?
I cannot be the only one. We may wait, and ache,
for different things, but I see them, and feel
we must all be waiting, and aching, and praying
for a sun somewhere.
16 December 2022
There are times I don’t feel the cold. When we talk, there is warmth, a shared confessional booth with cups of tea and gluten free cake, that I remembered this time to buy for you. In this intimate space we say, I bled on the sheets last night, I had a funny tummy, I cried at the end of Strictly for no reason other than it was over.
There are times when I feel warm despite being vein blue with sickness, the deep womb pull of heavy bleeding eased in the moments I speak with you, this heat, the hot of intimate chat, these pockets of interaction help numb the contraction, make the shuddering tummy more bearable like a hot water bottle I place on my stomach – it helps, you help, you make me feel instantly better
when we laugh about the feeling of bleeding through jeans, not funny on your own, but when you’ve both had it happen in the past week, it isn’t a catastrophe, it is suddenly comedic. We all do it. We just don’t talk about it. Walking around with a ruby jewelled mark on the back of our trousers. We shudder at the thought of white jeans, over tea snigger about how we’d ruin them instantly.
There are times when silence becomes the best conversation, when our bleeding becomes the thing which brings us closer. It is ok to show how much pain you are in. There’s a key signature to suffering. We know the sound. We chat freely about things we’ve only ever internalised. We bleed on the floor, ruin new knickers, we don’t hide this at the bottom of the wash basket, we say, tell me about your bleeding, tell me everything –