Tag: CP Tired

I didn’t sleep last night.

On By Katy DalyIn My Disability TruthLeave a comment

As I write this I’m sat in my parents house. I didn’t sleep last night and the fatigue is starting to hit. I’m recording this out of interest to describe how I feel physically when I am this level of tired.

If I had slept last night I would l have referred to this as CP Tired, but as I didn’t sleep, it makes sense I’d be this tired.

I am physically feeling very shaky. Very aware of the energy it is taking for me to stay awake. I can feel myself trying not to fall asleep. I am achky in places I am not usually acky in namely my wrists and ankles.

Forgive any mistakes in this if I have the presence of mind I will fix any mistakes later.

So on Saturday night.

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So as I sit here, trying to recover from covid, that makes it sound dramatic but please do not worry I’m doing alright, thankfully.

I’m thinking back to Saturday night, when I was trying to convince myself, I had the physical energy to eat, as I was hungry, and I couldn’t seem to find it. But with my life experience of cerebral palsy, it isn’t all that unique that I don’t have the physical energy to eat on the odd occasion, this is what I have referred to in the past as CP tired. In these situations, my mum has fed me in the past. So, I actually spent the night thinking about my mum, and how much I miss her. I probably only ate anything that night because I know that’s what she would want me to do.

But having this low level of energy never registered in my head as something I should be concerend about, as I say, this happens to me. And this got me thinking about how hard it can be to spot symtoms of something, when you’re chronically ill or disabled. Here I very easily colud have been overshadowing my covid symtoms as part of my cerebral palsy. By this I mean attributing the systoms I was experiencing to the wrong thing.

Luckily for me, the symptom that I was overshadowing was simply exhaustion, and this is not the most dangerous system to do that with. Though I would likely have figured out I had covid earlier without cerebral palsy. But there are many stories of people being in a lot of dangerous because of shadowing their own symptom.

So I want to take this oportunity to remind anyone reading this who is disabled and chronically ill to pay extra attention to when you feel different, and do what you can to look after yourself.

It’s okay to be wrong about something else being wrong with you, it can be incredibly dangerous to miss what could be wrong with because you don’t want to be wrong about something being wrong.

The version of this, in which medical professionals overlook symtoms is called diagnostic overshadowing. If you’re chronically ill or disabled, or there is a chance you will be spending a lot of time in hospital, it might be something worth looking into. It is essentially where a doctor or other medical professional attributes an existing medical condition to being the reason for your systoms, which results them in not actually investigating the symtoms someone is experiencing.

This happened to me once as a teenager when a doctor decided that the numbness and tingling, I was feeling in my hands and feet were anxiety, and of course I have anxiety because I’m disabled. *Insert after event eye role*

Though they were probably correct, which has only become evident because while I see occasionally experience those symptoms, I don’t experience any other symptoms. However, I still deserved to have my symptoms investigated properly, just in case there was something else going on.

Myself.

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

What details of your life could you pay more attention to?

I’m always so busy. My family is complex and there’s almost always something that needs doing. I am definitely trreated with equity in the sense that just like any other member of my family, I’m expected to do what I can to help out where I can. But this is often a lot, and I still have a condition that causes fatigue.

I am often tired, and frequently exhausted. I have said more than once that I think I was born tired. I get maybe an hour or two, if I’m lucky of not feeling tired. This is providing I get a good solid amount of sleep, which doesn’t happen to often.

However often sprinkled in there I get to spend time with people I care about, as I did tonight. But that takes energy as well, when sometimes I just want to sleep.

I have various things to do every day for the next weeks, as well as several upcoming appointments.

Sometimes I feel like I’m more busy when I’m not at University, but you know that’s just life. And I’m always so tired. In all honesty I just want to sleep a little more, but don’t we all?

Hopefully I am able to get on this next course, which will mean while I don’t get to sleep anymore, I will be doing something for me. And I think this counts as paying more attention to myself and what I need.

When I have the time I don’t have the energy and when I have the energy I don’t have the time.

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As I write this I’m sat in my parents house, trying not to fall asleep as the fatigue hits. I have a free afternoon and evening because my sister is out and I have cancelled my carers call to avoid things being difficult with the dogs.

I have no university work as I beat a deadline and so have to give it time after the date before I know if I’ve got on to the course I have applied for.

In other words I have the time to write or play the Sims when I go home, several hours of it in fact. But I am most likely going to end up napping for a couple of hours at least.

If I have the time, energy or motivation when I wake up I will do something, maybe.

Honestly I just wish all these different parts that I keep to function and do the things I enjoy, would line up a little more.

A fatigue nap

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So today, someone came to replace the wheels on my chair, and that meant I had to get out of it and in to bed. Due to the temperature being too hot to walk the dogs I knew I would not be going out, so decided that I wanted to stay in bed.

So, I took what I planned to be a small nap, before I was going to get into doing some work. And I was up 4 hours late. Well, I woke up prior to that in pain, and went back to sleep. Later on, I was woken up to help with something. But that was 4 hours later. While I was fatigued enough to apparently take such a long accidental nap, I was not fatigued enough to be unable to control when I fall asleep, as sometimes is this case. This is what I myself call CP Tired and is one way that fatigue affects me. But the way it affected me today makes me more annoyed, as I chose to go to sleep so I feel to blame for essentially sleeping the day. Despite logically knowing that I wouldn’t have chosen to take this nap if I knew that it would have lasted as long as it did.

While I know that it is clearly obvious that I needed to sleep, I hate when that happens. It ruined what I had planned to do today.

It means that I may end up being up late tonight, which means I will probably be even more tired tomorrow.

Anyway, now that I’ve written this post. I’m going to try and get back to doing the work that I should have been doing today, instead of sleeping.

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

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

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.

A good day can disrupt plans

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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.