Try to not feel bad for giving my body what it needs.

How do you practice self-care?

Fatigue is a difficult concept to explain to those who have never experienced it. For me it means that no matter how much I have slept I will feel very tired a short time later.

Last night I slept at least 9hrs, that’s a lot more than I usually get. I woke up feeling refreshed about 90 minutes ago. And about 10 minutes ago I started to feel extremely tired again.

I have places to be today so I can’t just go for a nap. But starting to do something will probably wake me up again, hopefully.

So while I can’t get some more sleep right now, I can not feel bad about the fact I would like to.

Sometimes it is easy to fall into the trap of what I wish my body was capable of. Today I’m going to do the best I can at accepting my own capabilities and recognise I am not to blame for any limitations.

I know this may not seem like a lot but for me it is a big deal. I’m quite good at faking being okay with my disability. Those that (think they) know me, are often surprised to learn that I don’t accept things as well as they think I do.

Being okay is not as easy as we make it look sometimes is it?

And later on, I will definitely be taking a good nap I promise.

I hope you do whatever you do to practice your own self-care today.

Inaccessibility is emotionally draining.

For a long time I struggled not blaming myself for my inaccess to the world. It was hard to believe I wasn’t the problem, when everyone was always making so clear that I was.

As I get older I go through periods of being busy and then free as I’m sure we all do. And every time I reach this quiet time from the business, I’m reminded that I no longer feel disabled. In all honesty, this makes me not want to go out a lot.

But I won’t let the ableism of society beat me. I won’t let run my life. I’m going to keep trying.

But no more for today. Today I think I’m just going to sleep.

I am tired.

A good day can disrupt plans

In my post yesterday, I wrote about discussing an event on inaccessibility that I experienced on Monday, and while I still want to write about that, I’m sure you can guess from this post’s title that this is not what this post will be about. For this, I must again apologise.

I want nothing more than to explore just how inaccessible Monday was for me, and today for that matter, as I had to return to the same area and unfortunately experienced the same problem. But I find myself after a wonderfully busy day, lacking the energy and to be frank the motivation to get into such an incident with the attention it deserves.

I will do my best to get to it eventually.

Today I had a wonderful day with my boyfriend, it’s funny to say I have a boyfriend but that’s a different story (or post) for a different day. But either way, we spent a couple of really good hours together, and while I would do it again in a heartbeat, it has left me exhausted. For once though it is that nice kind of exhaustion that comes from a good day, and not what I lovingly refer to as ‘CP Tired’, which is the exhaustion that comes from my condition.

As anyone with a chronic illness or disability who reads this will know, the good days can often cost us. Being tired is a price I am willing to pay for a good day.

Trust something well worth writing about to happen when I am too physically busy to write about it. My mum would call this, ‘sods law’
Anyway, I will do my best to get to this post tomorrow. That said I have another busy day, so I make no promises. I can only hope that you will all find this post worth the read when I finally get it out there.
I hope you all get a restful night’s sleep, and remember not to blame yourself if you find your energy levels lacking and thus preventing you from doing something you want to do.

If your condition is in any way a deciding factor for the decisions that you make, which it often is, please remember you are not responsible for this. It is your condition that has made the life you want inaccessible to you. This is not a choice you have made, do not take responsibility for something you had no control over.

I’ve spent the day writing and sleeping

As I try to find some work that is accessible to me, I spent the day writing, in-between the obvious care for my girls. But a mentally trying day for me, means that to complete it I require a nap.

I fell asleep at my computer for an hour, when my brain just refused to work anymore.

After this it meant that I was able to finish the writing I had started.

So I suppose this is your reminder to take a nap if this is what you need to complete a task. Do whatever you need to make something accessible for yourself. Whether that be to do it a certain way, using a certain aid, or to take a nap in the middle. What matters is that you can do what you set out to do. Not that you can do it in a way society deems acceptable.

And enjoy your naps.