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Me, I disconnect from you.

“I’m only going to say this once; will you stick by me?”

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Sometimes there’s no controlling it. That outburst; the rush of fear and sadness, the pressure you’ve been keeping safe inside bursting out and smothering everything around you, leaving you breathless, unable to make sense of the words, unable to do the most basic tasks without messing up and descending into a spiral of unnecessary apologies.

Breathe.

You forget to breathe.

This afternoon, I buried myself under the duvet. Breathed in the lavender-and-chamomile linen spray on the pillows and the slight scent of S’s hair where he’d slept earlier. We woke late; by the time S whispered and nudged me into consciousness it was past 3pm. He lay in bed in his pyjama bottoms and blue jumper, reading and chatting to me as I tried to force myself out of an uncommonly deep sleep, wandering from bathroom to kitchen, making coffee and wrapping myself in my still-damp dressing gown. The coffee didn’t help. Encouragement from S achieved nothing. I just wanted to stay curled up, as though I could hibernate right through winter and spring, only surfacing when the world didn’t seem quite so dull.

Sleep didn’t come last night; when I finally crawled into bed next to S and snuggled into his armpit, daylight was coming through the blinds. I’d been thinking, and smoking. And thinking a little more.

sad-woman

For almost a year, I’ve been saying I’m ready for the bad news on my heath. I’ve wanted to know why my body has failed me, and I’ve craved, begged, pleaded for a reason behind it all. In this blog, I’ve gone from “I have fibromyalgia” to “something’s not right”, and now… now things really aren’t right.

Six days ago, the pain in my ankle and foot came back, worse than ever. A stabbing, searing, ripping pain which took up all my energy. I had a mild cold, so that became the culprit for a while; it was easier to blame a virus than accept what the pain returning probably meant. However, the cold is gone now but the pain remains. Co-codamol doesn’t help. Dope only does so much to relax my ankle. There’s no way of distracting myself, no dissociation I can use to find relief; it feels like somebody is twisting a knife in my foot, and each movement, each millimetre my toes twitch, they dig the knife in a little further.

They explained this at my last orthopeadics appointment, that the cortisone injection was a diagnostic as well as a pain reliever (yeah, because that bit worked well), and if the pain returned in around two weeks, there would have to be an operation. Just an outpatient one, to remove the synovial tissue in my ankle. That doesn’t bother me; after the needle from Hell they injected the cortisone with. What bothers me is that the pain returning means that it’s not as simple as a bit of arthritis and a damaged tendon; it means that something’s happening in my body to cause an inflammatory response.

It’s sort of the final nail in the coffin for RA.

synovitis

synovitis

This is my foot now. I’m not bragging when I say I used to have beautiful feet; sure, my toes have always been a little too long, but they’ve always been slim and well-shaped. Now… my toes curl under. The effort of keeping them straight is too much now, and too painful. I have bumps on the sides of my toes, and when I’m relaxed they curl together. Sometimes I have to reach down and untangle one toe from behind another, because I can’t straighten them. They’re fat and misshapen.

It’s a strange day when you no longer recognise your own feet. Before moving in with S, I threw out a lot of my heels; I couldn’t comprehend ever wearing them again, and seeing their shiny patent leather and little bows and hearts and pointed toes… it depressed me. I live in knee-length boots now, with a low wedge heel and orthopaedic inserts. If I’m feeling brave, I’ll put trainers on… but I can’t walk far in them.

It’s such a simple thing. Footwear. And I feel cheated by not being able to choose anymore.

 
9 Comments

Posted by on January 7, 2013 in Every day life

 

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When the first cup of coffee tastes like washing up she knows she’s losing it

At 6am this morning, I sat by my bedroom window, smoking a joint and listening to the geese calling on the marshland while the sun peeked through the black clouds in the sky, and I considered yesterday’s appointment with Mr B.

All Monday night, I was smoking furiously. Drinking cup after cup of strong coffee. Anything to stop myself tipping over a precarious emotional edge. Got out of bed and tidied. Went downstairs and ate half a sultana and cherry cake. Sat and stared at the muted TV screen, watching the PS3 graphics float around. By 7am the room was filled with a haze of smoke and incense, and the floor was littered with empty mugs and Rizlas. Sleep would have been impossible, so I didn’t even try.

I tied my hair up and clipped my fringe back, put on a small amount of makeup and got dressed. I almost didn’t bother making any effort at all – I felt so out of sorts – but S wanted to meet me outside the hospital before the appointment and I’ve been absent enough recently without also looking like a total horror. As usual, my mother insisted on coming with me; she has to get involved in these things. She also has an obsession with being early for every appointment and meeting, whereas I prefer to leave it to the last minute so I have time to gather my thoughts, so my anxiety levels were peaking nicely by the time we got to the hospital. S brought his coffee outside and we chatted a little about the appointment, and when he left to go back to the lab he gave me a big hug and a kiss and told me it’d all be fine.

Our hospital is like a rabbit warren, but years of medical emergencies and referrals mean I know the place like the back of my hand. However, my mother always gets convinced she’ll get lost and panics, setting me off. By the time I reached the rhematology waiting room I was a simmering mass of fear and anger, glaring at the other patients and snapping every time she tried to speak to me. An old man a few rows across from us was reading a paperback and looking around him, and I found his movements unbearable. Just as something was going to snap and I flew at him for daring to breathe, Dr B came out of his office and called me in. We chatted about the fibromyalgia diagnosis for a while; whether I still experience any symptoms and how much the pain affects me. He opened my medical records and read for a while, commenting that I spent a lot of time in the hospital. I’d been admitted eight times or so when my gallbladder got infected, and before that I’d seen gynaecologists, ear specialists, doctors for IBS, had tests for Cushing’s and hormone malfunctions, and had cameras shoved into places I don’t want to think about. My life has revolved around hospitals and clinics and, sitting in Dr B’s office, I couldn’t help wondering if this was just yet another specialist with no answers.

However, answers were provided for once. Dr B moved my limbs around, pulling and pushing on my arms and legs and poking me my shoulders and back. He made me lie down and tried to bend my legs towards my chest. Put his hand on my knee and gently bent the joint. The pain was unbearable, but I gritted my teeth and got on with it, determined to take the advice to not hide the discomfort.

I sat back down, and Dr B explained what he’d found. I have osteoarthritis in my knees, hips, hands, wrists and possibly feet and neck/spine. The pain I’ve been experiencing is from the joints degenerating, especially in my knees. The fibromyalgia diagnosis isn’t in question; I still have it, and I’ve had blood taken to test for RA. I need an ultrasound on my left foot, possibly cortisone injections, and he’s hoping to start me on Lyrica if my GP’s surgery agrees to providing such an expensive drug. I have to see my GP in a couple of weeks to discuss any findings from the blood tests and work on a plan to manage the arthritis.

It may seem strange that I thanked Dr B for the news. Even stranger that I actually smiled. I just didn’t know how to react; I nodded and listened to his advice, but all I could hear was “there’s a physical reason why you’re in pain”. I have something which can be seen on a scan, felt under a hand… I have something nobody can deny, and that’s a feeling like no other after years of misty diagnoses and judgement.

 
33 Comments

Posted by on April 11, 2012 in Every day life

 

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