Day two – Sleep.

Today I slept pretty much all day again. I’m hoping that’s it for this current bout of fatigue.

I actually feel awake right now, but I just hope how much I’ve slept in the past two doesn’t stop me sleeping tonight.

Fatigue is really annoying. My energy levels doesn’t match how much I’ve slept and I’m almost always tired. Apart from right now, it seems.

Home Alone

So I’m home alone while the person I live with does some errands. I don’t want to seem like I can’t be home alone, because I can be. That is until something needs doing.

One of my beautiful little doggies loves to cause problems and she might have just been doing so in the other bedroom. The personal lives suggested that I go and check it out, when I told them this. However it’s not that simple for me, simply going into the other room requires both a lot of steps and physical effort on my part. She’s also now also asleep next to me therefore I know she is not causing problems right now, and if I move to go and find out what problems she may have caused it will undoubtedly wake her up and therefore she may cause more problems. Add to this the fact that I am unlikely to be able to deal with any problems that she may have already caused anyway, and due to a broken door I am unable to stop her causing more problems.

Sometimes able bodied people or in this case people that are more able-bodied than me. Will ask things of me without considering or being aware of the steps involved specifically for me in what they are asking. They may not realise that they’re extra steps involved in doing something as a disabled person.

If I were to do what they have asked of me I would have to take care to put the things on my lap on to my bed properly, like my blanket and phone. As there are many steps involved in me trying to pick them up again should they fall on the floor, if I can do it at all. Next I have to struggle to open my own room door followed by the other room door that I need to go in. This will take a good five minutes just to get me into the other room at least, which is longer than it will actually take me to check if there is a mess or not. Like I said earlier even if there is a mess I will probably not be able to do anything about it.

So I guess this one is just a reminder that sometimes when you have disabled people to do simple things for you they aren’t quite as simple as you may think they are. While they may want very much to help you the energy required may not be something they are able to spare for you or to get the task done.

It’s not just that I have less energy than many other non-disabled people come out but the fact that doing something will actually cost me more energy than it would likely cost a non-disabled person to do it.

To any disabled or chronically ill people reading this, it is ok to make the best choice for you to conserve your energy and get the most out of your day Whatever this might look like for you. Remember it makes you smart and pragmatic in dealing with a situation that has components others may not be aware of. Don’t let their judgment of your actions dictate not doing what is best for you.

This post links to the idea of something known as Spoon Theory. Which provides a way of explaining an understanding how much energy disabled and chronically ill people have and maybe able to use or may use doing a certain task. This is definitely something you should look into if you are interested and I’ve never heard of it before. It is likely to be something I write about again as it is very relevant to me.

Why do I ask for help with things I can do.

A lot of things feel inaccessibile simply because of how long they take me to do. Even if it’s possible for me to do something, therefore the task is accessible, sometimes the amount of time (and energy) something takes make me not want to do it that often.

It just took 40mins for me to pick the washing basket and the washing up off the floor. It would have probably taken my sister a minute and a lot less energy.

You see this is why I sometimes ask for help with things I can do.

It might seem lazy to people who don’t know, and for a while I felt like I was being lazy in doing it. But really it is energy and time saving to get help.

So what does this have to do with accessibility?

It’s hard to determine whether a task is accessible sometimes. If I know I can do it, but I choose not to, sometimes I feel bad about it.

But in reality when I need help the task is not accessible to me and when I don’t need help the task is accessible to me.

Therefore the accessibility of a task can change, dependent on many different things, not least my energy. But also the tools I have available to help me.