Seeing is believing

Being ill is boring. We’ve had over a decade of being in pain, but since July it’s been more than your standard everyday chronic pain. It’s been stuff I can’t grit my teeth and ignore. It’s like constant chronic acute pain, which no matter how many painkillers, heat pads, massages, stretching I throw at it just won’t piss off. So it’s sort of taken over my forethoughts a for a while.

Now I’m just bored of it. And frankly, if I’m bored of it, those around me must be sick to death of it all and my incessant introspective essays. To those people, I’m sorry for all the whining.

The latest seed of self doubt was sewn when I read a blog today about psychosomatic pain. Shit. Is this all in my head? I have photos of my wonky joints & a bloody diagnosis, but after a decade of being told there’s nothing on the MRI, it can’t hurt that much, you need to man up, the little voice telling you that you just have a low pain threshold and it’s all in your head rings loud & clear. “You’re just being sensitive”, “you’ve probably just bruised the bone” – standard phrases since pre-teens.

Is reading up about my diagnosis not actually arming myself with how to protect my joints from more injury, or against doctors who just don’t have the information about EDS? Where I thought I was creating constructive information, have I just become ‘that patient’?  Oh god, please don’t let me be ‘that patient’.

(My pain threshold is quite high – tears that have been around recently, were distinctly absent when I broke my elbow or ruptured 2 discs or broke my nose… 3 times. It’s my tolerance for constant bloody acute pain that is rather lacking)

Perhaps ignorance was bliss. I’m a self confessed control freak, and having a massively out of control body combined with a lack of specific advice and information is sending me round the bend. Incessant blogging and fretting appears to be my way of coping. 

I will man up about this eventually. Possibly when the lift is fixed at work and it doesn’t take me a full 10 minutes to get up to my office & pop my elbow out from balancing on my crutch. More likely, when I feel more in control. For now I just feel very alone and frightened and a bit of a hypochondriac because no one can see what hurts.


My #InvisibleIllness Awareness Week Thing with #NoFilter

I’ve seen a lot on blogs and twitter recently that’s been prompted by Invisible Illness Awareness Week (that’ll be this week), and I thought I’d join in.

I did a little experiment today as it seems to be perfectly polite these days to tell me how shit I look (generally it’s more along the lines of “ooh you look tired”). My close friends and colleagues are allowed to do this. They know me, and try to be tactful…. Unless they’re Mrs Gypsytree who just comes our with “you look like crap” and is allowed because she wholeheartedly means it.

Anyway, I digress. As we are the selfie generation  (I’m not. I’m way too old), I thought I’d try a #nofilter day of selfies as a diary of what it’s like for me to live with Ehlers Danlos Syndrome. This in no way represents anyone else with EDS, or in fact my better or worse days. It was just a day. I’m basically stalling now to avoid posting the photos.

Wake up reluctantly. Realistically, I should’ve been up over an hour ago, and I’ve been lying here doing a body check (working out which bits are complaining). My head is still a bit fuzzy from the diazepam that I used to stop my back spasming all night.


Arrive at work, caffeinated, a bit sore, but ready for some coding fun 🙂 Spent the journey doing pelvic floor exercises and half listening to radio 4.

I’m reasonably sure that this is my I’ve had a WHOLE cup of coffee face…

Pain scale: 3


2 periods done. Am done at the upper school, am in the car ready to drive to the lower school for some website building. The frown is starting as my back is burning and knees keep giving way today.

Pain scale : 5


Back at the upper school. I want a nap. I’m knackered.
My hips, knees and shoulders are screaming. Roboleg is doing its thing with one leg, but the other knee is also wobbling. Bugger. I’m infinitely thankful that I’m free for p5 and just need to do my reports. Typing is making my fingers and wrists throb so I’m not talking much.

Pain scale : 6


I’ve just finished my final hall duty. That required walking (with crutches) to the front gate, seeing the kids out, then walking back to my office. At the top of the building  (using a lift!). I’m having issues raising my legs now & I’m wobbly. My hip has popped out and is making hideous noises. My reports aren’t done yet & I have another hour left. I’m fantasising about crawling into bed.

Normally, I would never post a photo of me like this.

Pain scale: 8


Ready to go home. After sitting quietly doing my reports, I’m ready to drive home. I got caught by the deputy head on the way out to ask how I was. Apparently I look tired. What threw me was a question about how long I thought I’d carry on working for. It was out of genuine concern,  but having fought since the start of term to keep calm and carry on, it was upsetting.

Pain scale: 7


In bed (Have been since 8pm). It’s not been a particularly unusual day, or a significantly bad one. It was weird though looking through my selfies without trying to instagram the hell out of them.

Pain scale : who cares.


Maybe people are right. By 5pm, I do look like shit. But I feel it too. It’s not invisible, it’s externally subtle. Internally, not so much.

Just for info, the pain scale I’m using is this. It’s reasonably subjective as what makes one person frown will be different from another.


Also, further point of reference : I dislike selfies without filters. Don’t expect them again :p