Tag: Chronic Pain

Discomfort

On By Katy DalyIn My Disability TruthLeave a comment

For reasons that I hope are clear if you’ve been following me for a while now, I’m a member of many different disability and chronic illnesses groups on social media. A common topic in both is chronic pain, but something I don’t see discussed is chronic discomfort.

In my experience this goes alongside chronic pain but is something that is distinctly different at least in my experience. But no one seems to talk about the difference, so it has me wondering if I’m making it up or just not phrasing it right?

It’s like sitting in my body doesn’t quite feel right. Like I always need to be moved a little bit, and I can never find that one spot I’m looking for. In itself that’s doesn’t hurt, I mean it does hurt, I do hurt but that feeling is different to me.

I don’t know maybe I’m talking rubbish. Maybe it’s the same thing. Maybe it’s because I’ve spent so much time in my chair recently. Who knows? Not me.

This is difficult to answer right now.

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

Describe your ideal week.

I would love just to go to spa, to be somewhere warm with good food and lots of dogs. Somewhere I could be completely alone and independent, and at least right now, somewhere I wasn’t disabled.

This is what makes the question so hard for me to answer right now because not only is it reliant on lots of things being different than they currently are. It’s reliant on fundamentally not being me, at least right now.

This is how living with a disability works and disability pride works. it’s not linear. Pride is not linear.

Sometimes it’s really difficult to be happy with who I am and the life I have to lead. And that makes it very difficult to picture my ideal anything, when it all seems really far away from me.

I think my ideal week would just be me being happy, comfortable, not in pain and independent.

Shower night.

On By Katy DalyIn My Disability TruthLeave a comment

Showers are supposed to be relaxing apparently, though they don’t feel that way to me.

Tonight I had to shower and unfortunately I ended up getting injured. That’s not really what most people think of when they have a shower. But it happens and worst of all I didn’t come out of there completely clean. I’m difficult to clean and the situation in which I have to shower makes it difficult. So to be honest I don’t like to do it often. You can see why when you understand that it’s usually a painful process. And that’s not counting nights like tonight where I ended up getting injured.

At most I’m able to shower three times a week, this is what my care package allows. But if I’m being honest even that’s too much for me. I generally only shower once a week, sometimes once every two weeks. Now don’t worry I don’t smell, unless my incontinence has been having fun, because the carers wash me daily. Whether they wash me properly is another problem. But generally it’s not so bad only showering once a week. It keeps me clean enough I think.

All this is to say that doing what’s social expected can be draining physically and emotionally, even when you have complete help to do it. So whatever you can manage is enough.

Ignore anyone else that tells you otherwise, they’re not living your life with your situation and you’re doing your best.

And yes I’m reminding myself of this as well.

The heat is really messing with me.

On By Katy DalyIn My Disability Truth3 Comments

So at the minute where I am it’s very hot. And the biggest pain killer I use is heat, specifically a heated blanket. But due to the heat I am unable to use it as I would, without sweating so much.

This means that I’m in more pain than I’m used to. And when you have chronic pain a change in your pain can be really difficult to deal with.

It’s really throwing me off honestly. On top of the not being able to sit in my wheelchair issue due to the cushion. I really feel like my condition is controlling me lately, rather than the other way around. It’s very frustrating.

Discomfort.

On By Katy DalyIn My Disability TruthLeave a comment

It’s a common thing when you’re me. I don’t know what’s worse knowing the cause and not knowing there isn’t a fix or knowing the cause and knowing the fix but not being able to fix it.

It’s got to be knowing there is a way to fix it and not being able to do it yourself.

I’m waiting for the cushion to be fixed on my chair, it can take up to 6 months just for the appointment, who knows how long to actually fix it. So that’s (at least) 6 months of extra discomfort, often and eventual pain, with a solution I’m stuck waiting for.

Don’t get me wrong I know I’m luckier than some, to get this eventually and for free. But its still hard.

Discomfort can be more difficult than pain for me. The pain I am used to, it’s my normal. But the discomfort is new, and I don’t know how to deal with that. It’s going to be rough

Chronic Discomfort

On By Katy DalyIn My Disability TruthLeave a comment

So sometimes I struggle to say I have chronic pain. I mean I do, but I’m just so used to it, that I don’t think it always registers as pain. It’s like I’ve turned it down to get on with life. This is probably something that only people who experience chronic pain understand.

But something that’s chronic but not constant that I haven’t figured out how to turn down is my chronic discomfort.

I tried to look into chronic discomfort, as that’s how I learn to deal with things, to learn as much about them as I can. But I couldn’t find anything, and it kept taking me back to chronic pain.

My limited research does have me wondering if I’m making it up, if it really is just the same as chronic pain, or if chronic discomfort is something that exist but just something that hasn’t been looked into before. It’s just that that chronic discomfort and chronic pain feel very different to me. Maybe this is really about how I register pain, I honestly don’t know. But I think it’s something that needs to be looked into more.

Chronic discomfort for me, doesn’t involve pain as such. But to me it feels like you’re not physically sat in your body right, and there’s nothing you can do about it. Like no matter what you do you’re not in your body right. Like when your socks aren’t on properly, but you can’t pull them up. That feeling, but everywhere? I hope that king of makes sense.

Now I know how to register the pain, I know how to explain the pain. But the discomfort is something else. Something I find it hard to explain, even to myself, because it’s not pain, it’s almost worse. That’s why I want to read more about it, to understand it better, but I really can’t find anything.

All this said I didn’t spend a lot of time looking for stuff on chronic discomfort, because fatigue. But if anyone out there is better at research than me or just knows anything about chronic discomfort, I’d love to know more.

Well at least you’re in the building.

On By Katy DalyIn Blog1 Comment

When was the last time you saw a live performance?

This is the prompt for today, but as I’ve answered it before it won’t let me answer it again. I’m at one now.

Getting into this building wasn’t easy for me, it was honestly testifying. It was something I can’t be sure I would have done if I knew what was expected of me from the start.

I was essentially pulled up several flights of stairs in my wheelchair, using an old but honestly good accessibility aid. I’ve included a picture of me using this below.

Image Description: A photo of myself in my electric wheelchair being pulled up stairs. My hands are gripped tightly on the armrest of the chair.

As this photo shows the whole experience was terrifying, and as I write this I have to go back down again.

Knowing the artist I’m here to see, I’m certain it was worth what it took to get me in here. But if I’m honest with myself I’m still upset by this whole experience. I shouldn’t have to go through this to have fun. Fun shouldn’t be this hard. Fun shouldn’t be hard.

The anxiety of this experience is going to leave me in more pain than usual for the next few days.

I’m torn between writing more about this now, while the emotions are fresh or focusing on the fact I’m about to here one of my favourite artists live.

I’m going to focus on the music for tonight.

I wish I wasn’t disabled for 30 seconds.

On By Katy DalyIn My Disability TruthLeave a comment

I just want to be able to move up the bed, without ending up in pain and breathless. I just want a little comfort.

My pain has sucked today, and I’m worried because tomorrow is a very important day for me.

I’m going to a concert; someone I’ve looked forward to seeing for years. Someone who I always said would be my exception to never going to concerts. I need my body to play ball, please.

Heat.

On By Katy DalyIn My Disability Truth, Writing Prompts3 Comments

How do you unwind after a demanding day?

I’m that person that has my electric blanket on every day of the year. i’m not kidding on average I have to buy a new blanket twice a year and they eventually break on me, no doubt because of how much I use them.

I once gave myself the temperature because I have my electric blanket on during the hottest day of the year.

I will put my fan on with my electric blanket on before I will turn the blanket off. Heat is my best friend. And with chronic pain you have to do what works.

So when I come home from a busy day, or sometimes just relax from a busy day at home. The first thing I usually do is get under my electric blanket.

I’ve even been looking  for usb powered electric blankets, so that I would be able to use them out of the house. Though I haven’t been able to find them that works properly yet, despite trying a few different opinions. If anyone has any ideas can they let me know please.