The Intricacies of Pain

Last year, I was organised for Christmas. I had our budget organised, I had my gift list organised, I had our timetable organised. A lot of that timetable was about ensuring we did activities with our two sons (12 and 9), so that their holidays were enjoyable and memorable. Having a disabled mother means that holidays are usually neither. However this year I had on what my husband calls my “determined face”.

So for a month, we did activities as often as my disability would allow me. And then Christmas Eve, we went and picked up my grandmother and brought her back home for a few nights. Christmas Day, we went and picked up my mother in law to stay with us for a week. And Boxing Day (the 26th), we also had my ex-step-father over for a holiday lunch – our “Christmas meal” of the season.

My Nanna left on the 27th, and on the 28th and 29th, I couldn’t walk properly due to my feet feeling as though someone had belted them severely with a hammer. They felt BRUISED!!! Terribly terribly bruised. Every step was agony. One year in high school, a school mate got an apple, and gently tapped it until all the flesh was liquid, though the skin was still together (if memory serves, he then threw it at someone, and it exploded all over them). My feet felt like that apple!!!

For the last two weeks, I’ve done nothing but sleep and watch TV and work on my Bullet Journal. I’ve been too exhausted – both from the heat, and just getting over the Christmas period.

Today, I decided that it was time to get back into it, and take the kids out again. I haven’t left the house in two weeks aside from a trip out for ice cream. Quinn (9) has been itching to go to the beach, and I LOVE the beach, so the beach it was. I tried to get as much sleep as I could last night (managed a whole five hours!!!), and then did some chores this morning from my recliner, then just before our support worker arrived at 3:30pm, we packed our bags and got changed into our swimmers.

And off we went.

We were also going to watch the kids use their scooters, but they decided the beach was far too important, so we went straight there (plus they forgot their sneakers, and only had thongs on). Our support worker (J) took Quinn, Nicky and I down to the water. Nicky needed to go back in short order, so Jess took him while I stayed with Quinn.

We didn’t go out far as Quinn isn’t a strong swimmer, although he’s getting so much better this year, and very quickly too! Being there, in the waves, watching Quinn – the constant beating of water against my legs, ensuring my feet stayed planted so my eyes could stay on my son – it hurt. A lot. It hurt a lot. My feet hurt, my ankles hurt, my hips hurt. My back hurt. Within fifteen minutes, I was bawling my eyes next to J while we watched Quinn play in more shallow water.

I sucked it up, and went back out with the boys (Nicky joined us again for a short time). All up, I think we were in the water about an hour. We did one trip back to the camp we had set up, so I could sit for a few minutes and have a rest.

After the water fun, we went and got ice creams from the corner store across the road. It was a perfect afternoon.

One picture on top of another.  The top half is of a nine year old boy with the surf in the background. The bottom picture is of a twelve year old boy on a picnic blanket on the sand.

We came back home, and I got the boys into the shower to wash their hair. Then I had a shower and washed my own. By this time, my feet were killing me. I was standing on one foot to give one a rest for a few seconds, and then swapping over. Thought even this wasn’t working very well.

I stumbled out of the shower, and BJ helped me get dressed. I waddled to my recliner and sat down.


Holy fucking hell, but my feet swore at me!!! As soon as I put them up, they just swore at me! They felt like someone had stabbed every square millimetre of them. And then my hips got in on the action, same deal. And then my back. It was all stabbing and hot and it all just hurt so much all at once.

And I screamed and screamed and screamed.

I did grab and pillow and screamed into that, but BJ still got the message. He went and got me pills, and brought them over.

I’ve had this disability for over a decade, and BJ gets me pills four or more times a day. And until today, not once has he ever not asked me first if I wanted them. Tonight, he did not ask – he just went and got them. Suffice it to say – this was one of the worst pains I’ve ever been through.

But now the worst is over (the pain will linger for a while, but you get that), I gotta say, even if it had been a hundred times worse, it still would have been worth it – we had such a great day!!!

Still, for now, I’m not going to be moving very much lol… Nice quiet, very still night, with lots of pain killers, and lots of sleep.

And then we can do this shit again next week!!! 😈<

((So why even write this? Because people see me at the beach today, and they see me next week at the beach, but they don't see me screaming into a pillow in pain when I'm at home. They don't see me sleep for the week in between, but even if they know that I have, they don't get that's it is not a choice – I simply can NOT wake up!!! I don't need pity or anything like that, but people do need to realise what it's like behind the closed doors, because we live in society, and society makes all these decision based on assumptions that are quite often plainly wrong. Such as that if you can go out and do something one day, it means that you can always do that thing. It's not true – some of our bodies just do not work that way. I am SO blessed to still be able to go to the beach, but I pay for it. I pay for it dearly. Words can't accurately describe the pain I went through tonight. "Stabbing pain" doesn't quite cover how I wanted to tear my feet off with my bare hands just 'in case' it might make it better. Some of the people in my life just don't seem to get this part of it all, based on some of their comments lately…)))

Oh crap. Now I need to pee. Which means getting up. I'm really not going to like this…!!! 😬😖


Disability consumer and activist since 2010. Mad as a hatter since way before that.

Posted in Personal
One comment on “The Intricacies of Pain
  1. I found your blog through the bullet journal tag on WordPress (bullet journalers unite!) but discovering someone writing about living with a disability was an unexpected and lovely surprise. Your last paragraph…oh my goodness, I want to reach through the screen and high-five you for that. People who don’t live with constant pain have no clue what it’s like and I relate so strongly to your description of the price you pay for having a day out.

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Pissed off since 1995. Mad as a hatter since way before that.

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