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.

7am
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.

image

8.15am
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

image

11am
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

image

2pm
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

image

3.30pm
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

image

5pm
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

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9pm
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.

image

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.

image

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

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5 thoughts on “My #InvisibleIllness Awareness Week Thing with #NoFilter

  1. Very creative! You can really see your fatigue in the 5pm picture. You probably were even more knackered by 9pm but you may have felt relief that your day was over and at least you could be still.

    The boss asking about your future intentions must have taken you aback. I may not be alone in this, but I have to focus so hard on getting through the day at hand that I find it difficult to do much planning for the future. I am taking early retirement and have 21 more working days left in my career. Everyone is asking me what I plan to do and I honestly don’t really know. I hope that I will work at getting myself into better physical shape and that I will spend my days pacing myself. Clean a little, garden a little, read a little and just be.

    If only those that ask me about my future knew how much effort was put in today!

    Rest well and carry on. Thank you for sharing♡

    Liked by 1 person

  2. Thanks for posting this.
    I haven’t been back to work since becoming ill, but just traveling to and from doctors’ appointments or a planned outing puts me at what your 5pm selfie looks like and it can take a few days for me to recover.
    I don’t know how I would cope if I had to be working now.
    I’m sending you positive energy to help you get through your days until you figure out how your future will look.

    Like

  3. Pingback: This is me – #InvisibleIllnessWeek | The Joyful Puddlejumper

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