Tag: Pain

I crashed

On By Katy DalyIn My Disability Truth1 Comment

If you pay that much attention to this blog and what I write, you may notice that occasionally backdate posts. Who says I don’t get to play a little bit with time.

I had to do it with it my last post, because I’ve just slept almost 12 hours, apart from being awake briefly when my carers came. This occasionally happens to me, and is more likely to happen when I haven’t been sleeping properly. It’s like my body needs to shut down physically for a while.

This time I was woken up by a not nice dream that I’m trying not to remember.

Occasionally I wake up well rested from these crashes. This is not one of those times. I feel a lot less fatigued but I still feel tired, like I could still do with a nap. But I always feel that way.

This time I’ve also woken up cold and uncomfortable. But there isn’t a lot I’m able to do about it. I kind of wish I was still asleep.

It’s a lie that you ever get used to the pain. I think sometimes you just forget it’s there. But sometimes it feels different, as I write this my arms are aching. And while it doesn’t hurt more, different pain throws you more than the pain that happens all the time.

But the electric blanket is helping. And I’ll be getting up in about half an hour, and getting on with my day. I hope you’re able to get on with yours and that you have a good one.

The middle of the night.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.

As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.

I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.

Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.

Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.

I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.

But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.

I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.

I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.

I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.

It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.

Discomfort.

On By Katy DalyIn My Disability TruthLeave a comment

So this morning, the way I was dressed and put into my wheelchair has left me feeling uncomfortable. It’s going to be a long day as a result.

I honestly can’t tell you with 100% certainty whether this happens because I am so difficult to get ready or because the carers simply don’t do their job properly some mornings. They would argue the former, I’m more likely to think the latter is true, obviously. But as I can’t look at this situation objectively, I can’t give a definite answer.

All I can tell you with certainty is something about the way I am sat and, or the way I am dressed, has left me feeling uncomfortable.

There honestly isn’t anything I can do about this until I get into bed later, as my carers have left. So I’m stuck.

Every time I find myself in this situation, which thankfully doesn’t happen often. I wonder why I don’t say anything when my carers are here. I can only think it’s because when I have said things in the past, they haven’t listened to me or understood what I’m saying. Or there additional help comes with an element of blame or anything other than there ability to do there job.

Either way, just remember that it can seem easier to get help than it actually is, when you’re the one in that situation.

Hoping I still manage to have a good day today.

My eletric blanket.

On By Katy DalyIn Blog2 Comments

What’s the one luxury you can’t live without?

This is one luxury I afford myself around once a year but in all honesty, I buy a new one whenever my current one breaks or if I’m smart looks like it’s going to break. I try to buy one in the summer if I can afford it, especially if it’s been a while since I bought my last one. I do this simply because they buy in the summer, as not many people would buy one in the summer therefore they are usually cheaper.

That said as the primary purpose of an electric blanket for me is pain relief, I’m not sure if you can actually call it a luxury for me. That is I suppose unless you want to refer to not being in pain as a luxury, which may be something some people who experience chronic pain might do. That said personally I do not see not being pain as a luxury, for me pain is a state of being.

This might not make a lot of sense to those who do not experience pain daily. I specifically say daily here because the pain that I experience is daily, as opposed to some chronic pain that is daily but also constant. My experience of chronic pain is aggravated whenever I move for the most part which is only twice a day when I get in and out of my wheelchair. That said this does not take into consideration bad pain days, during which I am in a higher level of constant pain, perhaps something akin to a 6 or 7 on the pain scale. Though this is not my experience of pain most days.

Thinking about it I realized that I am in some level of constant pain, perhaps somewhen between a 1 and a 3 on the pain scale. As I am so used to it it almost doesn’t register until it increases when I start moving. I often refer to this as background pain. The reason I have to think about this pain to register it is because I’m so used to it. This pain is just my normal.

I want to take a moment here to remind anyone reading this that pain is a relative experience. For this reason, there are many different pain scales used in order to understand the pain person is experienced. Two of the most common ones I’ve seen are pictured below. The first picture is a more serious what may be considered ‘standard’ pain scale. A pain scale like this is usually used to determine whether pain is serious or not, or if something needs to be done to relieve pain. The second picture is a pain scale that is quite obviously considered more of a joke pain scale. I have sometimes referred to as a chronic pain pain scale, in recognition of the fact that people that experience chronic pain experience pain in a specifically different way than people who do not experience chronic pain. That said there are better chronic pain scales to use then this one, which is clearly meant to be funny as well as somewhat informative.

Image Description: This image shows what is referred to in the article as a colour-coded numerical pain scale. This shows different levels of pain on a scale from 0 – 10, ranging from Blue which is titled ‘No Pain’ to 10 which is titled ‘Unable to Move’. Each number has a title and a brief description of that pain level.
Image Description: This image shows what is referred to within the source article as the “Hyperbole and a Half Pain Scale. This shows basic faces and stick figures linked to different numbers on a scale of 0 – 11, also including one option above 11 titled ‘TOO SERIOUS FOR NUMBERS’

While these examples as well as some more examples of pain scales can be found here. It is important to remember that experiences of pain can be so unique that’s an individual may want to create their own pain scale, specifically in the experience chronic pain. This is something that the article linked does touch on. However please remember that this article has not been verified and is purely for informative purposes of different scales. There are definitely better sources that you could use in order to guide your own journey to finding a pain scale that works for you

When I say for me pain is a state of being, I say this because I experience a great deal of confusion with how I relate to my body on the rare experiences when I do not experience any pain. I recall a time in hospital when I was given an epidural for pain management, and therefore and very limited feeling if any at all in my legs. This was in all honesty a very confusing time for me because I’m used to my legs hurting even a little bit all of the time. I was worried something was seriously wrong.

So my electric blanket is how I deal with this pain, because the vast majority of my background pain is muscular and in my experience therefore helped by heat. My eletric blanket is incredible helpful in this situation. I’m even known to use my electric blanket intermittently for pain control on extremely hot days.

So what do you think would you call something that is often a luxury to the majority, a luxury when it is not used in a luxurious way?

Chronic Pain Struggles

On By Katy DalyIn My Disability TruthLeave a comment

So last week I was in a lot of a pain, but I honestly did not realise this until the weekend just gone when my pain started to lesson. Pain is nothing new to me, I live in a constant 3 on the pain scale, so a new pain does not instantly concern me. Especially when it for me has a logical cause. So it wasn’t until the discomfort was no longer there, that I noticed it had actually been there.

So I guess this is just a quick note to say that your pain is valid. No matter how new or old it is. No matter how well adjusted you are to it, or how much it throws you. No matter how well you are able to function within it. I believe you and I believe your pain. And whatever you are doing or not doing while you experience it or a flare up of it, is exactly all you need to be doing. And lastly its okay not to understand or register your pain in the moment, that does not make it any less valid. It still occurred.