[Status?] My bed is my spirit animal

Today is one of those grim days where you just know staying in bed won’t fix what you have, but you linger there for a while longer anyway, just in case something magical happens.

I’m also testing out the new ‘status’ feature to see if it changes the style of posting at all. It could mean shorter journals on my bad days, but also actually publishing journals rather than just lying out feeling like shit anyway.

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[Journal] A not so glorious (but better than expected) return

Ladies and gents, presenting your not-quite-neighbourhood-friendly Abigail!

It’s been quite some time – months, in fact – since I last submitted a blog entry of any kind. I’m honestly a little sorry for the time it’s taken me to get back in the saddle, but also feel an apology isn’t needed. My time off was quite deliberate and much needed.

To pick up from where I left off those months ago, I was admitted to hospital with what turned out to be a double whammy of atypical pneumonia and bronchitis. The heart palpitations have now become somewhat of a weekly guest, though only one or two at a time, until I get sick. In the time between then and now, I’ve been sick a further two times with various bugs and another bout of (slightly more mild than last time) food poisoning. As a matter of fact, as I’m writing this, I’m attempting to wrestle control for my body back from a nasty sinus bug. It’s been rough riding, but I haven’t fallen too far off the horse yet. It also seems necessary for me to basically pump my dreamteam of Zinc, Echinacea, Garlic and Vitamin C to boost my immune system during flu season.

While I was in hospital, I learned a few things:

  1. I am irrevocably, irrationally and totally afraid of being in hospital.
  2. Exactly how important you are in someone’s life when you DO go into hospital
  3. Which of my friends respected me and took my health seriously with things like avoiding me when they were sick
  4. That hospital food sucks balls.

To start with the first, it didn’t help that I was admitted while running a massive fever, scared out of my brain because my heart was backfiring left, right and centre, and so many kinds of exhausted. That generally doesn’t make for good terms to enter into any unfamiliar situation, let alone a high-stress one in a loud and artificially bright ward filled with screaming patients. You can add another layer to the “How the fuck will this make me more calm?” cake when they hooked me up to a heart monitor and every 35 seconds to a minute my heart would do the Macarena and the machine would scream. I swear I now have a Pavlovian response of complete panic whenever I hear the sound of an irate heart monitor.

I suspect the majority of my fear comes from the fact that you don’t exactly go into hospital to get a scratch-and-sniff sticker from the doctors. Every experience I’ve had with hospitals in the last decade have been because something has inevitably gone wrong with my body for the first time and part of me is half-convinced I may croak. What I find out after is that it’s just another perk of being Abigail, or more specifically, being stuck in the body of Abigail.

Point is, when you combine all of these things with my anxiety (which has gotten significantly worse due to the stress of it all) it makes for the perfect panic-attack-inducing shitstorm. To boost the “OHCHRISTFUCK” signal coursing through my brain, there was an utterly shitfaced bloke yelling at the staff and walking the ward. It was almost what I imagine a meth-addicted Santa to look like after Boxing Day. I can laugh about it now, but believe me, I was in almost histerics by my second night.

To move on to the second point, Manthing was incredible. He slept in a chair next to my bed the first night and on the floor of the hospital on the second. He brought me a book, my colouring gear, my DS and my favourite blanket, which I covered him with on the second night. The only time he left me was when I sent him home halfway through day two so he could get some sleep in an actual bed and de-stress a little. He put up with my panic attacks, kept the conversation up when I was anxious and did everything he could (including bringing me pajamas!) to make me comfortable.

I had some family contacting me when they could with reception, friends keeping track of my updates on Facebook (it was far easier to just comment on a status than message everyone individually) and taking to me to keep me distracted when I was stressing. I also had some friends fall short of what I had hoped my friendship meant to them. I wasn’t asking anyone to drop what they were doing and come and visit me. If I’m sick in the ER and under care of Infectious Diseases, what do YOU think I want you to do? But what I needed was the support of my friends to tell me everything would be fine, to tell me they gave a shit about my health condition and to just generally be friends. When I got single-word responses, suffice to say the ranks of my friends shifted a little that day.

Number three is a big one. If I’ve just come out of hospital and I’m really fucking sick, do you think I want you to come over and bring your flu/cold/arse herpes with you? It sucks that I’ve had to do this, but for the last three months, I’ve effectively had to screen people before they come over. I’ve had to politely ask people to just not show if they have a cold or the like, because I just can’t risk it. The fact that I’ve caught three bugs in this time kind of shows you just how stupid my asshole immune system is, and how careful I have to be now. If I go out, I take a risk. If I go to a public event, I have to pump my vitamin dreamteam for 3 days beforehand and 3 days after, just in case. Chances are, I’ll still pick something up. It’s not pleasant, but it’s my reality. I’m also at the point where being polite can go and choke on a big hairy cock. If you’re sick and in my house, I WILL tell you to fuck off, because you obviously don’t have any respect for me, and don’t give a shit.

Number four is an honest truth. You always hear the jokes about how bad hospital food is and you think it’s just a joke until you’re there. I swear to god, one night my dinner was breadcrumbed cardboard and string greens. It was honestly tempting to just order a pizza to the ward.

The important thing I learned is that the palpitations I get aren’t dangerous. I still have a perfectly healthy and functional heart, it just adds an extra beat from time to time, especially when I’m tired and run down. Getting a single ‘hiccup’ as I call it is the definitive point where my body goes “Too much! Bed! Now!”. Getting more than one is my body screaming that it’s exhausted and I’m run down. See: Sick with any kind of bug. It feels horrible and awful and then more horrible on top, but the bloody brilliant news is that it’s just uncomfortable, not dangerous, and I couldn’t have asked for a better answer.

All in all, I learned a lot from my miserable experience in the hospital. About both myself and those around me. I’ve also had to learn new coping mechanisms when my body goes batshit, I’m wrestling with the idea that it’s okay to go to bed during the day if you need to, and that pushing my body right up to the limit helps nobody, least of all myself.

I’m going to finish my blog here tonight because I’m god damn exhausted and need to put this meatsack to bed before I fall off my char, but I’ll be updating my blog regularly again and filling you guys in on all the juicy details of the last few months ❤

If I forget, feel free to shoot me messages filled with words that will make a sailor blush,

❤ Abi

[Journal] I can’t think of a title today

This weekend I finally got out of the house. I ended up completely butts exhausted from it all, but I’ve been fighting the same sinus crap and hoping that the antibiotics are working (only to wake up this morning with a nasty sore throat) and I decided to get out and have some fun. I was lucky enough to see some old friends there and got to have a catch-up, but I also ran into someone from my days in reenactment.

I was quite taken aback at our brief exchange. We’ve known each other as acquaintances for almost 6 years now and I make no secret of my disability nor my mobility aids, so to have someone with such a bullshit attitude about it all really irritated in a way I couldn’t quite put my finger on. Bearing in mind, by this point I was on my way to exit the event. I was limping quite heavily and leaning on the cane a lot and thinking about nothing but getting home to bed.

Tool: “Why on earth do you have a cane?”
Me: (flatly) “Because I’m a cripple.”
Tool: “I call bullshit!”
Me: “… I’m sorry, what?”
Tool: “Since when?! I’ve never seen you with a cane before.”
Me: “Since always. I’ve had it with me at every camp* and event I’ve been to.”
Tool: “Well, I’ve never seen it before.”

*Every medieval camp I’ve been to, I’ve needed my cane by the time the evening kicks around. I don’t make a fuss of it. It’s just an extension of myself these days.

Their tone of voice was very accusatory and disbelieving, like I had suddenly grown a third arm just to spite them. I wasn’t expecting anything like that, especially from someone who has known me in the past. I think the bit that confounded me was the fact that I make no secret of needing my cane, nor do I make a secret of being sick. It almost seemed like their reaction seemed to say “Well, I wasn’t informed, so you’re not validated in being ill”. It’s probably an overreaction on my part, but something about what was said triggered instant rage on my part. I don’t know whether it was the fact that he was just an insensitive prick, the assumption that I’m faking sick for shits and/or giggles and attention or something I haven’t quite put my finger on yet, but I’ve spent the last two days brewing about it in my quiet moments.

I feel that, in instances like this, it should be entirely legal to pimp hand the shit out of the stupid.

The perception of illness also brings me to another point that’s been on my mind a lot this morning: Short term/new pain versus old/chronic pain.

Over the years I’ve seen a few friends of mine have accidents, break bones and generally get hit with the nastier side of life when it comes to pain. What always has me curious is how people react to it, especially on social mediums like Facebook. Now, this has nothing to do with the ‘attention’ raised from an issue, but more the general reactions over time. This can also apply to any long term or chronic issue, be it pain, depression and mental health or general malaise.

First and foremost here is that pain sucks. It really, really does, regardless of who’s experiencing it and for how long. But what I always find interesting is that, if you take an otherwise healthy person and they end up in pain (whether it’s short or long term), people kick up a stink. there’s a massive furor about how unfair it is and how they’re thinking of the person. There’s messages that they should stay strong and that it will pass and everything will be okay. There is generally some kind of outpouring of well-wishes, regardless of how big or small.

If we skip forward a few years and that one person is still in pain of one kind or another, the universal reaction is that it’s become old-hat. They still have the few usual friends offering support, but the uproar and discontent at the situation has died to a dull roar. It’s no longer a matter for outrage at the injustice, but becomes something that ‘just is’. The person going through the issue doesn’t suffer any less, but their suffering becomes commonplace. It’s something you expect. It’s something that you can’t change, so what was once this vociferous show of solidarity becomes a “well, you know we’re here” from the back seat.

Suddenly getting up and facing the reality of the situation, day after day, gets hard. You know what to expect. You know what’s coming and what you’re going to face. You just don’t have the crowd cheering you on from the seats, just the memory of the support you had when you first got sick.

Go and hug a chronic kitty. It doesn’t matter if they’ve been dealing with shit a week or eighteen years. Give them a gentle hug and let them know you’re thinking of them. It doesn’t matter if their illness is mental or physical or emotional. It doesn’t matter whether you can see it or not. Go and give them a hug. Write them a letter. Send them a message. Let them know they have their own personal army cheering for them on the hardest days ❤

[Journal] Friends and chronic illness

To start, I’d like to clarify that this isn’t me seeking attention or looking for sympathy. This is me trying to make sense out of a series of situations I’ve been in recently and to work out where I stand in it all. This also isn’t directed at any one specific person, but is a collection of memories from past and present friendships, written at a very emotional point tonight.

I’ve written in the past about how maintaining friendships is a challenge when one is chronically ill. Regardless of what you’ve been afflicted with, it makes an impact on your life that few people can understand. I’ve written about how a careless word here or there can really bring someone’s world down around them. I’ve also written about how lonely it can get when one is cooped up at home all day, every day.

This post is more than that. To me, this is an attempt to make sense of everything I’ve been through with past and present friends to date.

Right now it’s almost 11pm. I’m sitting in bed with my laptop and I’ve just had a good 20 minute sob to Manthing about how unfair it is that people just don’t ‘get it’. I’ve had 7 days of above-average pain. It’s worn me down in places I’m not usually aware of. I’m beyond exhausted. Because of how run down I am, I’m in more pain than the last few days, anyway. I won’t lie. This is hard. This is really, really hard.

I used to tell people that I was very lucky because my support network for hard times like these were a select few friends I could call upon, whenever. Some online, some a few suburbs away. In fact, before myself and Manthing were a ‘thing’, there was one night when I had hit my first 9 on the pain scale. It was 3am and he had work the next day, but I could still ring him up and he talked to me on the phone for about an hour until my painkillers had kicked in and I could sleep.

In the last few years, this has changed. I find myself here on a night like tonight with almost no support network whatsoever. People have gone their own ways, life has changed, things have come up. One friend decided it was okay to treat his friends like shit. Another got a girlfriend and suddenly didn’t have time anymore. Another couldn’t understand that being sick wasn’t like being in bed with the flu. Another still decided to tell me that my illness was THEIR problem. One by one, all the people I felt I could approach at that 3am mark drifted away and left me here on my own little island of Fuck, where I find myself tonight.

I guess this entry is a bit of lamenting the fact that I feel so alone right now. Once upon a time, if a friend caught wind that I wasn’t doing so well, I’d have an SMS within minutes. I’d get a check-in every now and then. “Just thinking of you. Hope you’re okay.” I’d get a message online or they’d even just show up out of the blue. Once, I had someone even deliver a care package because I had spent the week in bed. You know who you are, and you should know I genuinely cried, even through I didn’t say anything out of pride when it happened. It’s the little things that turn a fucking awful situation into a not so bad one. It’s knowing that someone has your back that can sometimes give you the strength to get through the day. Right now, thanks to the pain and the depression, I feel like I could vanish for a month at a time and nobody would even know I was gone.

For what it’s worth, I always did what I could. I like to see myself as ‘that friend’. The one that would always check in. If you were having a shitty day, I’d send you an awful joke or a picture. If you were stuck in bed, I made digital get well cards. Driving an hour out of my way to help a friend out even though I wasn’t in the best state wasn’t something I thought twice about. I just did it because they needed me there. I’m the one that left the messages. “If you ever need an ear or someone to talk to, I’m here.” Maybe I wasn’t that person to everyone. Maybe I wasn’t that person to anyone. But god help me, I tried. I genuinely tried to be the best friend I could be.

As I got more and more sick, sometimes I’d miss a beat. Sometimes there’d be a week where I was stuck in bed and didn’t know you were upset. I tried to catch up and still check in. I really did. With more than a few people, I tried to organise times when I was well enough to meet up, but they were always busy. Things don’t often work the way we plan, but that doesn’t mean I didn’t genuinely put an effort in.

Right now, I feel empty. I feel like, for everything that I’ve been through, I only have Manthing with me. I feel so alienated from other people that it physically aches in my chest. People I used to be really close to. I think at one point I had half a dozen people and I felt so very special because of it. I think about all the 3am nights we used to spend out getting slushies and I cry. Things aren’t that way anymore. I think about the skype calls we had where we’d see who could burp the loudest and it hurts.  You got a girlfriend and I vanished off the face of the earth to you.  I remember the times we used to make running jokes and confuse everyone else in the room. You don’t even answer my messages now.

I think about how, once, I felt like I had people who were involved in my life enough that, when I needed someone to vent to, they understood I wasn’t looking for attention. I just needed someone that understood what I was going through. I know I’m not the easiest person to be friends with. I really do understand that. I’m a lot of work. I ask things of people, I can’t always go out or catch up and sometimes I hurt people because of it. But seriously, do you think that it hurts any less for me? I’m the token cripple friends. I’m the one people make allowances for. I’m the one that forgets and needs assistance during games. I’m the one that makes the group walk slower. But I’m still human.

Yes, I do still have friends, and people I talk to occasionally, but it’s not easy. Imagine how it feels to not be able to talk about some things because they just don’t understand – or, in same cases, just don’t give a shit. Imagine someone walking away mid-conversation when you’re trying to explain why you were so sick yesterday. I’m the one that has to make the allowances for other people. I have to watch my words so other people aren’t accidentally offended because they can’t deal with their own stresses. I have to curb my own humour because, god forbid, someone might be offended by a joke I make about myself. I have to constantly remind people that, for me to go out somewhere requires some planning. I can’t just get an invite half an hour before X starts. I often don’t have money with over $200 of medication per month. I am a difficult person to be friends with, but I’d like to think that I’m no less worthy of friendship for it.

I’m genuinely afraid of making new friends, even thought I’ve tried. Try to imagine what it feels like to be immediately judged as being ‘too hard’ or ‘too much work’ the moment you mention chronic illness. On top of dealing with all my other physical issues, I then have this exhausting charade of social interaction, and it wears me out.

I won’t lie. I have very little patience for those that can’t accept me as I am, but I’m desperate. I want friends and I’ll take what I can get.

I do still have people that genuinely give a shit about me, and I them. People that don’t care if I’m in my pijamas when they show up. People that are happy to change plans to a night in when I can’t move. People that don’t hate me for something I have no control over. I hope that, one day, they read this part and understand. But those are far and few between, and with some, we barely even talk anymore.

I don’t even know if I’ve made much sense with this post. Manthing actually pushed me to blog about it and, in it’s own way, it’s been a bit cathartic. That little voice of anxiety in my head warns me that I might offend or upset a past or present friend reading this, but then the little logical Abi in the front of my head says “Let them be.” I guess if someone’s offended by this, it’s because they feel that there’s an ounce of truth in my writing. Let them fix it. If someone feels a prickle with one of the things I wrote, it’ll be because they relate to something in there. It’s never my intention to offend with these things, but people are stupid. If there’s an issue, do something about it.

After a solid half hour of writing, I’m thoroughly exhausted and no less miserable, but I’ll leave it here for tonight.

[Journal] Something something tired

Someone needs to make a TV chanel for people with ME/CFS. 20 hours of nothing but the host sleeping, and occasionally rolling over to fart.

Back in bed today after sleeping for almost 14 hours yesterday. Seems the cfs fairy came and took a dump under my pillow at some point this weekend. Strangely sensitive nerve pain, costocontritis is playing up and I’m fairly certain my body is trying to invite the commies to the fun house. I love that euphemism,  seriously. Go look it up. Either way, I’m accepting donations of heat packs, chocolate and lamentations.

Image

“The misery state”

First image post from my phone. Not the same as my usual comics, but it will have to do.

Really awfully sick at the moment. Though we managed to go to the Easter Show on Friday (which was amazing, but for another post) I can’t imagine being caught out in the rain or being around that many people was good for me, because three days later, I’m stuck in bed and wheezing through sinus, chest and ear gunk and dealing in the worst pain flare I’ve ever had.

Last night I went from simply feeling under the weather to having a 9.5 on my pain scale. Why no 10? I refuse to tempt fate by calling anything a 10 because, as my luck goes, the moment I do is the moment my body tries to out do itself in that area. Suffice to say I spent last night sobbing like a bitch, needing help with everything and trying to simply be comatose. Even the Endone didn’t help last night.

Naturally this also comes in the two weeks before my big event, so I’m doing my best not to stress and fret over that, too.

Any hoo. I’m going to try and get some sleep and hope the sludge monster that’s taken up residence in my head sods off. I’m also behind on reading all your blogs, so I’ll play catch up when I feel less like Satan’s arse hole.