Chronically Casper

Just trying to muddle though life with an autoimmune disease & associated nasties.

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I burn the candle at both ends while I can because the light is twice as bright and I don't know when I might lose my fire again.

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I'm baaaack!

After a rather long absence, generally life getting in the way, I am back & writing again :)

Hope everyone is doing as well as can be ❤

Cas xx

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Ugh...

I got back to doing my physical therapy exercises again yesterday after about 3 or 4 months of not doing them, and around 6 months before that of only doing them intermittently. Sweet lord am I aching!

My joints hurt, my muscles feel heavy and weak. But I know I need to work through it and push myself back into my regular PT. Otherwise I'll end up back at square one having to do rehab PT and that kills me.

I'm determined to regain some control. I am sick of being sick.

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The things that chronic pain makes you do; I will scald my skin in a bath so hot that I can barely stand it, just to give my inflamed muscles and nerves half an hour or so where the pain is lessened slightly. Pain makes us do things that don't make sense to other people. But my days, wouldn't you do anything to alleviate the pain you feel CONSTANTLY? Even just for half an hour, because that half an hour gives you just enough respite to carry on.

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Have a bit of empathy if...

When I get overwhelmed I either blurt out everything, including things I don't mean. Or I shut down, complete silence, no interaction.

When I get overwhelmed I stop breathing. Or I hyperventilate.

When I get overwhelmed I disassociate. Or I lash out, cry, panic.

When I get overwhelmed I can sometimes remain outwardly calm. Or I start ticking and involuntarily hurt myself.

When I get overwhelmed I don't just have one reaction, it can vary on how much it effects me. I can deal with it, or I can have an absolute meltdown. It's like an emotional wheel of fortune from hell.

Before you judge my "disproportionate" reaction to something, put yourself in my shoes. Put yourself on the emotionally unstable, mentally turbulent merry-go-round in my head. Please.

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Just a light snack...

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I just want you to realise, I'm trying so hard.

Please.

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Confession #15

Feeling happy makes my anxiety worse.

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I've been broken and had to put the pieces of myself back together so many times that I've lost some of them along the way. The tiny pieces of me that I couldn't fit in my hands, the pieces that fell behind the dresser, or got swept away by the wind.

I've put the pieces back together as best as I could. But if you look close you can see the fracture lines, the chipped edges, the little parts of myself that ended up lost every time I was broken.

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Confession #14

I try so hard not to but sometimes I slip back into maladaptive coping mechanisms. Then I feel guilty because I should be better than that now.

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Tfw you know you need to go to the doctors but you don't wanna go through the rigmarole. Maybe if I can just ignore it then I can pretend I'm okay.

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Wow! 550 followers…Thank you guys so much!

You are all wonderful, beautiful human beings. Thank you all for following me and supporting me, I probably wouldn’t still be running this blog if it wasn’t for all you guys being generally awesome people. If I could hug all of you I would :)

Cas Xx

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"I'm fine"

"I'm fine" is a lie that I tell every person I've ever met. Strangers, friends, family...everyone.

It's so much easier to say "I'm fine" when somebody asks how you're doing.

First of all I don't know how much a person really wants to know...do I tell them that I'm feeling ill? Do I tell them that I'm depressed? Do I say that I can't actually remember the last time that I slept through the night? Do I share how much pain I'm in because of this damn illness? Do I tell them I feel hopeless because I know there's no cure for the condition that I have?

Secondly, I think that most people just ask how I'm doing out of politeness or social convention. They don't really care, they just want to fulfill their part of the social contract. They'd much rather you just say "I'm fine" it's the most comfortable response.

If you just say "I'm fine" then it stops the dozens of other questions; Have you seen a doctor? Have you tried this? Have you tried that? Aren't you too young to be sick?

Saying "I'm fine" means that the people who try to help me feel okay. They feel like they're doing something that makes me better. They don't feel like no matter what they do I'm still not okay...they don't feel guilty. They don't look at me with that "I'm sorry" expression, a face full of pity.

I'm fine...I'm always just fine.

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Chronic & Acute Pain.

There is a difference between chronic pain and acute pain. A difference that those who’ve never experienced chronic pain don’t seem to understand.

“I know how you feel, I broke my leg once and it hurt for a couple of months.”

“D'you know, I pulled a muscle in my back and it hurt for a few weeks, I get it…”

No, you don’t understand. I’m not saying that your acute pain is not valid. I’m not making it a competition. You were in pain, that is awful, it’s awful for anybody to be in pain. But, you got better, the pain went away. If you have acute pain it is just that, it’s acute, it will go away.

If you have chronic pain it is there every single day, some days worse than others. Chronic pain never goes away. It wears you down every day and you have to live in the knowledge that the best you can hope for is that the pain is bearable. The best you can hope for is pain management. No recovery.

You can’t possibly understand that which you’ve fortunately never had to experience. As a person who suffers from chronic pain, please, don’t tell me that you “get it”, you don’t.

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So it's like 2.30AM and the insomnia has got me. It won't let me be, it poked it's ugly head round the corner between the physical pain and my anxiety.

Patrick (boyfriend) is asleep next to me and I'm trying not to fidget too much because I don't wanna wake him. But I can't get comfortable. My hips feel like they're full of rust and broken glass. The nerves running down my spine, wrapped around my pelvis, networked through my legs are on fire. Like live electricity with no insulation. It burns, my nerve endings are on fire. It's such a weird kind of pain. Before I got sick I'd never felt anything like it.

I need some damn sleep! Meant to be going to Dublin with Patrick tomorrow. My freaking head is killing from lack of sleep. Oh man. I can't actually deal with this right now. All I wanna do is fucking sleep!!

Sorry...Rant over.

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Update - 24th November 2017

I apologise in advance for the long text post but a lot has happened in the time I’ve been inactive. I’m also sorry for being inactive for so long, it’s been a very stressful time…

Okay, so, literally everything has changed. First of all, the relationship I was in ended, it had reached a point where it was just impossible to reconcile the things that were going wrong and the best decision was to call it a day and leave it as amicable as possible.

I felt physically okay for a while, I was even working and going out etc. I was still symptomatic but in a manageable way. Unfortunately, as we all know, it didn’t last. My symptoms have once again been getting worse and worse, and I’m anxious that it may again just be the beginning of it, that the autoimmune monster that had been hiding under the bed for a while is coming back, rested and as malicious as ever.

On a much brighter note, I have met someone…honestly I don’t think I’ve ever met anyone like him. For a start he’s honest, sometimes offensively so, but honest nonetheless. Anyway, there’ll most probably be a lot more written about him as time goes on. He’s the reason for the other big change, and by far the most absurd of them…I have moved from the little Spanish Island I had called home, over 2000 kilometers, to Ireland. Absolutely ridiculous! But the only way to really give us a fair chance to work, and really, why not?

So, the long and short of it, the past few months have been extremely stressful and a hell of a lot has changed. Hopefully I should now have the time, energy and motivation to continue with my regular posts and replies etc.

Thank you guys for sticking with me, you’re all beautiful human beings and if I could give all of you a gentle hug then I would.

TL;DR…Casper left ex, got better then sick again. Met someone and moved country. STRESS. Will resume normal posting shortly.

Thanks again my lovelies,

Cas

Xx

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The truth...

Living with a chronic illness isn't like the books and films pretended it would be... It's not stoic silence in the face of pain. It's not cosy sweaters and a cup of herbal tea. It's not living a heroic adventure of a life despite my ailments. Nor is it aesthetic, or in any way some wonderful poetic tragedy. Living with a chronic illness in truth is... Crying, ugly faced exhausted tears because the pain makes you wish you could just stop existing. Constant fear, so much so that sometimes you don't even want to kiss your boyfriend when he comes home from work in case he's been near someone with a cold. Waiting rooms, consultations, ambulances, surgery, IV stands, hospital gowns and paper underwear. Sick bowls, blood draws, chapped lips and translucent skin. Unwashed hair, body odour, puffy eyes and rashes. This is not a fashion statement, it is not pleasing to the eye. The only adventures I experience are that of characters in books that I read to escape the monotonous routine that sickness brings. The anthology of a life like this seems hardly worth reading...