Me, I disconnect from you.

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


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.


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.


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.



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.

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  1. I’m so sorry that you are having such a difficult time with your feet. It is miserable, I know. I had to give up heels several years ago and settle for pumps and other shoes with no more than a 1″ heel. It doesn’t help that my feel are really wide, I have a high instep and the arch always seems to be in the wrong place. I can never find cute boots or shoes that will fit my feel. I finally gave in and purchased a pair of hiking boots with special inserts. I was tired of my feet hurting and getting blisters if I walked more than a block. I cannot imagine how difficult it is for you. Hang in there and know that you are loved.


  2. Hi, sweetie — love from a winter night in Maine. I’m terribly sorry about your poor feet — but honestly, they are still pretty nice feet. My toes started the curling under when I was in my late 20s — I thought they were perfectly normal, until a doc told me otherwise — hammer toes. My calves were always the prettiest part of my body, and when they became discolored and prone to ulcers, I was very sad. The hardest thing I’ve ever done was to accept myself just as I am, warts and all — and I had to sneak up on myself to finally forgive. I am sending good thoughts your way, and concentrating on you feeling good. Hopefully it’ll help! Feel better soon!


  3. I don’t think there are many parts of my body that cortisone hasn’t been injected to no avail. I remember once, having a 3 inch needle injected into my throat as experimental in hopes of stopping my chronic headaches from bulging discs in my neck. It was after the needle I was told my throat would be paralysed for hours so don’t dare drink or have a candy. It didn’t work and I switched specialists at that point. She was nuts and refused to listen to me.


  4. Have you tried going completely gluten free? I’ve had a host of unexplained symptoms over the years and I am finally recognizing it comes from gluten sensitivity. Yes, it can mess up your body that much. You have to be off it for at least 6 months for the rampant inflammation to tame down. Try it. It’s worth it. Wishing you stellar health.


  5. Toes curling up sounds a lot like a rhumatoid (sp?) symptom that someone else I know experiences when she has stopped taking her meds. I don’t know what she’s on (and it doesn’t feel appropriate for me to ask her) otherwise I’d tell you so you could take the information to your next medical appointment.

    I’m sorry to hear you’re in pain. I’m still praying for you. Xxx


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