Caterpillars

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Today it happened: the GP talk I’d been dreading for quite some time.

“Your cholesterol is a little high,” she said, looking at my blood test results. “You need to try and bring that down.”

I gulped. My cholesterol has always been fine before.

“You need to exercise more and eat less carbohydrates,” she said.

“I… exercise has been a problem,” I said. “I often have trouble just walking. As you can see,” I went on, gesturing at my medical notes on her computer. “My joint problems have prevented a lot of activity.”

Something tore open inside me, some last pocket of hope that I was OK, that I could still possibly be construed as attractive and worthwhile, and not entirely unwell. I wanted to believe I was still the same slim person I’d been most of my life, that I just had to shed the arthritis and I’d go back to normal.

I realised in that moment that the doctor (the slender, glamorous doctor) saw me as a fat person – a lazy, bad eater, who just needs to pull my socks up and try harder to lose weight. Her advice was based on assumptions, not on an assessment of why I’ve gained weight and my cholesterol levels have gone up.

She has no idea how much exercise I do or what I eat. She doesn’t know anything about me other than a few results on a screen. She’s not even my regular doctor. She doesn’t know I wear orthopaedic shoes or sometimes use a walking stick. She doesn’t know I spent months unable to stay up for longer than about four hours per day. She has no idea what it feels like to wake up feeling like someone’s beaten her joints with a baseball bat in her sleep.

Her entire assessment of my health – and my moral character – involved looking at me and my pathology results and deciding I was fat.

The proof of this was in her response.

“OK,” she said, accepting that I can’t exercise as much as I’d like. “In that case, you need to look even harder at your diet. Less carbohydrates and more greens.”

I blinked, possibly due to my brain short circuiting. I already eat very little, and I eat plenty of greens. I always have, because I actually like them. The only problem I’ve had in preparing vegetables has been my physical difficulty in chopping them up – not an insignificant problem, but I’ve done my best to push through.

“OK,” I said, and got ready to leave, but she wanted to talk about my mental health.

“Any bad thoughts?” she asked.

“No, I’m all right,” I said, because someone who assumes I don’t eat my broccoli, and who tells me my immune system is “perfectly fine”, is going to have to work a bit harder to win my trust.

She pressed harder and I tried not to confess that my only current bad thought was a sneaking suspicion that she’d glued her eyebrows on. They looked like a pair of dark caterpillars, peeling at the ends nearest her nose, and possibly neatened up with thick brown paint and a stencil.

For a split second I imagined them straining to escape and crawl away.

I could identify with that. I just wanted to get away from her and her lovely outfit and silky hair and faux-concerned, made-up face.

I couldn’t help seeing myself as I imagined she saw me: a fat, lazy hypochondriac who was probably about to drive my car 50 metres to get a family size portion of chips and a vat of Coke for morning tea.

Instead, I went home and, at lunch, had a tiny tub of quinoa, lentils and red peppers, and then a few almonds as a snack.

The doctor doesn’t need to tell me I’m fat. Every time I see my reflection I want to cry. And it feels like no matter what I do, I just get fatter.

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Searching for synovitis

This week I had ultrasound scans of my hands and feet, which I was hoping would prove my symptoms are real and in need of some decent treatment.

The scans were performed on two separate days because, apparently, Medicare doesn’t cover two hands or two feet being scanned at the same time.

And yet, one hand and one foot at the same time is perfectly acceptable (presumably, as long as said hand and foot are on the same side of the body).

My medical timeline for the week
  • Easter Monday: public holiday.
  • Tuesday: psychiatrist, who said I deserved a medal (things were looking brighter then); GP (to ask for separate referrals for left-side and right-side scans); radiology clinic for right-side scans.
  • Wednesday: left-side scans.
  • Thursday: possible collapse of toe on left foot (similar to collapsed toes on right foot).
  • Friday: long appointment with GP to: 1) discuss results and make future plan of attack re arthritis/rheumatologists, and: 2) draw up a new mental health plan.

The upshot of the scans is that, apart from excess fluid, they could only see synovitis in my left foot. I think this means I’ll be “waiting and seeing” until everything finally falls apart.

Sometimes I feel like my doctors think I’m just a hypochondriac, despite the collapsing toes and swan-necking fingers. Unfortunately for me, I’m at my most inflamed in the evenings and at night: hot, red-fleshed, and hobblingly stiff. That’s when I need my examinations to take place, not during  9 am – 5 pm clinic hours.

Between all these appointments, looking after kids, resting when the pain gets too much, and trying to swallow my grief (but vomiting instead), I don’t have time for much else.

I don’t know how I’ll ever manage to get and hold down a job. Standing on my own two feet seems beyond the realm of all possibility, even with the help of my orthotics.

Shiny, shiny fat pants

Time to get myself out there and hold my head high. Time to tell myself I’m not hideous. I’m a swan. Not just two handfuls of swan-neck deformities, but a whole, beautiful swan.

I haven’t managed a shower in some days (am alone with a toddler who won’t sleep, and who destroys the bathroom in the time it takes me to brush my teeth), so my hair is getting harder to tame. I did a quick straightening job on it a few days ago after the last wash, but it’s starting to curl up and point in all the wrong directions again.

It’s been at least four – maybe five – months since I hacked my hair off. Distraught, unmedicated, undiagnosed. Cutting my hair was always part of my spiral of self-harm.

I wish it was long again, able to be tamed with pins and elastic bands. I wish my scars away, too, but that’s another story.

For now, it’s me, my disobedient hair, and a broken comb. My son in the base of the shower, unscrewing the top of the shampoo. I have to be quick.

A miracle worked by the broken comb. A rub of makeup over the tired face, the blotches, the grey eye bags, the eyebrow regrowth zones. Blush: a touch of life. The mascara wand waves and the spell is complete. I look normal. Functional. Almost.

I’m wearing a bright new dress (being too chunky for all my old ones), and a silicone teething necklace. I pull a pair of control pants on, concerned that I look pregnant in the dress. At last, I slip my tights on, pull on my one and only pair of shoes, and zip my son out the door in his pram.

It’s a beautiful autumn day. There are dogs and birds to point at, motorbikes and babies and cafe doors to wave at.

I walk towards the city, my shoe’s broken heel clattering on the paving. I’m limping. Sporadic, severe pain leaks from my little toe into the rest of my foot. My ankles feel as though they’re about to snap. My right wrist hurts so much I resort to pushing the pram with my left hand only.

Think swan, I tell myself. Elegant and graceful. Calm. Happy. (No honking in the street.)

It’s then that I notice something distinctly inelegant. Something rather uncomfortable: that terrible feeling of slipping underwear.

Perhaps it’s my knickers creeping down inside the control pants. They’re a bit baggy. It seems likely.

I walk on and the feeling gets worse by the step. I try to catch my reflection in the shop windows. Any weird elastic-induced bulges visible? Segmented buttocks?

I look normal. And yet, the slipping feeling gets worse. Fabric slides over my hips and there’s a sagging between my thighs.

At last, I realise: my tights are slipping down, unable to grip the shiny control pants. Any minute now and the top of my tights will be visible below the hem of my dress, especially if I bend forward.

I try to pull the tights up as I walk, without grabbing too obviously. These days, anyone could have a camera. I could end up on YouTube or Facebook, a joke.

  • Fat mum’s tights fall down
  • Fat mum tries to pull sagging tights up and flashes fat pants to the world
  • Fat mum flashes fat

Keep walking, I tell myself. Act normal. Be the swan. Little pulling-up movements nobody will notice. Just act normal until you can get to a toilet and then pull them up properly or take them off altogether.

Act normal. Be the swan.

And in just a few minutes, everything is fixed. I’ve kept my calm and everything is ok.

Be still, my panicked heart

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Today’s writing rejections: 2

Bins successfully put outside at 2 am, accompanied by toddler pointing at the moon: 2

Chest pains induced by man roaring suddenly outside front door (made of glass) at 2:40 am: 1 (lingering and, well, painful)

Episodes of crying, or hysterical wailing, as some might like to call it: 3 (I think). Long, loud and generally humiliating, in hindsight.

Text messages sent to beloved ex after he decided not to come over, due to a change in his other plans: I dare not count. Typical BPD response to rejection, which leads us to…

Vomiting episodes (brought on by crying): 2

Mood stabilisers taken: 0 (need to take them with food and I’ve hardly eaten anything I’ve managed to keep down)

Dizziness caused by panic: 1 episode (caused by movement on footpath outside, half an hour after roaring man nearly gave me a heart attack)

Distance walked outside today: 5 km

Weight gained in the last fortnight despite lack of food and increased exercise: approx 1 kg. How?! I haven’t even had any doughnuts this week!

And the award for the most painful part of my arthritic body today goes to… my wrists! (Right wrist in first place, left wrist in hot pursuit.) This could change any minute, though, as my feet are putting in an amazing effort, and I did, cruelly, walk on them today. My fingers are also determined to break their shackles and dislocate themselves.

Today can go away – and not a minute too soon, as it’s nearly 4 am.

Doughnut distract me

 

 

 

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Ah, the future. Once so promising, now so… so nothing. Just an abyss, really. Nothing to see here, people! Move along and leave me alone in the dark!

By way of disclosure, I’ve recently been diagnosed with several traits of Borderline Personality Disorder. I’m lucky enough not to have the whole shebang, but it still makes a breakup absolute hell on earth. Not only does my future seem to be erased, my whole sense of self seems to be demolished. Some days, I’m not sure I’m even a person.

So many temptations: maybe if I can find the right words, and say them, my beloved will realise he loves me too and come back! Maybe he’ll forgive me my millions of flaws and agree to give things another chance. Maybe he’ll realise I’m not the devil, I’m just a woman struggling to recover from mental health problems (and by most accounts, doing fairly well).

Or, maybe, just maybe, trying to talk to him will only make him feel suffocated and annoyed, and he’ll run even faster, and I’ll be left feeling even more rubbish about myself than I feel now.

With all that in mind, I’ve made a list of possible distractions from the Why Can’t He Love Me and Come Back? problem.

Devote myself to career

  • Pros: job satisfaction, confidence boost, socialisation with colleagues, money-making.
  • Cons: No career to devote myself to. Jobs of the type I used to work are no longer suitable due to my stiff, arthritic fumble-fingers. I’m capable of neither physical work nor sitting still at a desk.

Exercise

  • Pros: improve health, lose weight, fit into more of my clothes.
  • Cons: it hurts to move, I only have one pair of shoes that fit my orthotics (and they’re broken), and I’m too exhausted anyway.

Get a hobby

  • Pros: everyone loves a hobby. Want to meet someone special? Sound more interesting on paper? Get out of the house and avoid your cat’s death stares? Get a hobby!
  • Cons: none, except I already have hobbies, I just can’t do them. (See lack of money, mobility and finger dexterity.)

Go out with friends

  • Pros: support, fun. Hurray and so on and so forth.
  • Cons: I’ve only told one friend about the breakup. She lives on the other side of the world. Also, I’m extremely introverted. I dread company until I have it.

Watch another costume drama

  • Pros: excellent suggestion!
  • Cons: I’m not sure there are any I haven’t already seen multiple times.

Join a cult

  • Pros: painful thoughts will be replaced by Cult Think. No fears of the unknown when future = cult. Uncertainty banished by all pervading “Cult is Best and Always Right” thoughts. Automatic social circle. Depending on cult, home possibly provided: no more stress about rent/housing crisis.
  • Cons: Children may not like cult. I may not like cult. Cults are creepy at best and take a dim view of members leaving.

Drown sorrows in doughnuts

  • BINGO!!

 

Two is long After Eight

After Eight chocolates left in box: zero.

After Eight papers eaten by toddler son: unknown, but, judging by unusual nappy contents, more than zero.

Sleepiness level of son at 2:10 am: less than zero.

My wrists: feeling sprained.

Elbows and fingers: rusty.

Feet: bruised.

Rings on Gielgud: zero. Just a mark left by the engagement ring I had to have cut off because of Gielgud’s changing shape.

Fiancé: gone.

State of mind: in sync with Tess of the D’Urbervilles. Watching while my son waves at Tess, laughs at cows and sticks a pencil through the teat of his bottle.

Questions watching Tess of the D’Urbervilles: How could Newt Scamander be so cruel?!

Gielgud honks hello

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Gielgud the swan: my fingers like his style

Gielgud was the first to go: left hand, ring finger. Sudden pain at the base of my fingers at 3.00 or 4.00 a.m. and then, thanks to the nightlight, I saw that my finger had changed shape.

Normal finger to swan neck, just like that. Shock and tears and my lovely fiancé holding me tight.

Two more fingers on the same hand followed, almost immediately. They weren’t as bad, but they certainly weren’t straight.

Oh, God, oh, God, I thought. It’s begun. My fingers are deforming.

To my fiancé, I said: “I’m sorry for crying.”

“I’d cry, too, if my fingers did that,” he said, and held me tighter.

*****

The pain started some months earlier, late in my pregnancy with my second child. I woke in the night with severe pain in both my hands. Sleep-baffled, I assumed I must have been lying on them, gave them a wriggle, and fell back into exhausted sleep.

The next night, I woke with pain in my hands again. This time, I knew I hadn’t slept on them: something odd was happening.

When I next saw my midwife for a checkup, I complained about the night pains, and also noted my swollen hands and feet, my stiff and sausage-like fingers and toes.

“Carpal tunnel,” she said of the pain, “very common in pregnancy.” And, since my blood pressure was fine, I was told not to worry.

Some months after my son was born, when the pain and stiffness in my hands and feet  (including my ankles, wrists, fingers and toes) had spread to my knees, elbows, shoulders and the base of my neck, I finally persuaded my doctor to refer me to a rheumatologist.

“That wasn’t carpal tunnel,” the rheumatologist said. “That sounds like inflammatory arthritis.”

*****

The tricky part was – and still is – getting the right diagnosis. Initially, the suspect was seronegative rheumatoid arthritis.

“Classical presentation,” said one rheumatologist.

“That’s what it looks like,” said another, “although there’s a lot more ligament and tendon involvement than we’d expect, so we’ll need to look at whether there might be anything else going on there.”

It’s the ligament and tendon issue that’s seen my fingers deform, and two of my toes collapse. I have finger splints (useless) and orthotics (saviours).

I have rheumatologists with conflicting opinions, and no care plan as a result.

I am, explained a professor, one of those people whose diagnosis will be difficult. I will have to be patient.

*****

I named my ring finger Gielgud, after the violent swan in Sue Townsend’s hilarious Adrian Mole and the Weapons of Mass Destruction.

On bad days, when I’m struggling to pick up a pen or type, or when I’m thinking of the knitting and crochet I can’t finish for my small son, I imagine my  fingers honking and flapping with rage. Gielgud and his gang, eyes blazing, beaks sharp.

Think of all the power in my hands! After all, to quote so many of Sue Townsend’s characters, “A swan can break a man’s arm, you know!”