[Journal] All flare and no play make Abi something something…

I’ve had an interesting month. Filled with both ups and downs, some more workable than others. Most notably, the reason I’ve been fairly absent is that I’m now on week 3 of the flare from hell. You know how every now and again you get a flare that blows all the others out of the water and leaves you standing there naked, wondering how you ended up in the middle of an arms testing facility? Yeah, one of those.

Moving in with my mother has come with it’s own stresses – we’re now living in a confined space, an entirely new set of boundaries needs to be established (or, more importantly, adhered to) with my mother and my privacy, I have very little space for work – especially important given that it’s not only how I earn money, but also how I destress! – and a whole kettle of conflict issues when the aforementioned points are brought to a head. What this means for  me is that, given how my body reacts to stress, I’ve been a hot mess for the last few months of living here.

It all started with my body going “you know what we haven’t done in a while? Bled like we’re dying out your reproductive organs”, and so it did. Despite all chemical reasoning not to (contraception for period control is THE best invention of the modern world, hands down, when it works), my uterus went flying full-speed into the glass door, and then spewed a torrent of filthy language that would make German grandmother blush when it realised that I was trying to ignore it.

I thought “fair enough, we can deal with this” and despite me being roughly as amicable as a herniated mako shark’s asshole, we got through it. But the problem was, my fatigue didn’t go away. It just got worse and worse and worse.

Queue now where I’m sleeping for roughly 14 hours a day just to avoid heart palpitations from exhaustion, I’m in constant above-average pain and my mental health is beginning to suffer from it all and you can kind of understand why my blogging has been non-existent despite intentions to keep this updated more regularly. I’m in the process of damage control and I’m hoping that every day that passes is one day closer to when this god-forsaken flare decides to give up and go home, but until then, I’m almost entirely bedridden aside from one low-impact activity a day – today’s was going to my GP.

In regards to that side of things, I’m doing well. I finally have a GP who has taken my issues seriously, isn’t treating me like a drug seeker (a moment’s pause in thanks for whatever god helped with this one) and is actually proactive in the management of my condition. To make things a little more rough, my specialist recommended that we wean me off my anti-anxiety in favour of another antidepressant I’m on for the Fibro and CFS, so that certainly hasn’t been helping my moods at all, but the plus side is that the meds they’ve put me on – Pristiq – have helped my moods like nobody’s business when I first went on them. Today we’ve brought me up from the trial dose to the full standard dose, which should do me absolute wonders and stop me being such a heinous cunt. The only thing I need to keep an eye on is that magical surprise lactation issue one boob seems to favour for this particular class of meds, but if my choice is offering people one squirt or two with their coffee and having amazing moods, or hating everything and everyone and having normal chesticles, I know what I’m going to pick. Besides, there’s probably good money in those sorts of pictures 😉

The downside of the doctor’s visit is that it’s confirmed I need to get my weight under control. At the beginning of this year, I was 110kgs. It’s not amazing. I’ve gotten it down to 105 with roughly two months serious work, but I was told that, while I’m not pre-diabetic, if I don’t shed the weight and get down to a manageable size, I’m going to be looking at diabetes in the future. It’s entirely understandable, but it honestly hit me like a bit of a brick to the back of the head, and I couldn’t understand why it was so upsetting beyond the fact that this should be a concern of mine, and then it dawned on me – when you’re chronically sick, you eventually get used to a certain run of fuckery with your body. Things are wrong, but you know what those things are, and they kind of become the neighbours you love to hate. You deal with them every day, but at least you know where you stand with them. When you add something new like this to the mix, it opens the entire cycle of grief all over again because it simply feels nothing short of betrayal from your body.

All of a sudden, your patched together little world is showing signs of the threads breaking, and you’re not certain how you’re going to sew it together again. It’s one of those things where, at least in my case, I had accepted that I had my conditions and there was a certain security in knowing that my conditions were more or less the way they were going to be, with some minor deviations on a broad scale. But this is another issue left of wing. I suppose it’s a bit of a fire under my arse if nothing else. I was already working towards weight loss and finding the old ‘me’, but this has gone to show that in order to keep my body functioning at what MY level of health  is, I need to actually work for it. It also really makes me question the whole ‘fat acceptance movement’ thing. I’m a big girl. I’m not going to deny that, but I’m not morbidly obese. Even when I was 65kgs, I still had broader shoulders and larger biceps than my boyfriend. I don’t fit standard women’s size shirts in the shoulder, and when it came to corset fitting, my ribcage was larger than average. But what this doesn’t change is that I am fat for my body type and that’s where my issues are rising. My body is not happy being this big, and so I’m working on fixing this. However, when I see girls almost twice my size promoting their size as being ‘healthy’, I do wonder how that works for them. Is their body simply coping better with their size? Are they simply in denial about the risks to their liver and pancreas with carrying that much weight? Body positivity is a wonderful thing, and I’m slowly learning how to love my broken, bunky little body, but I don’t think I could ever love the idea of putting myself at risk of disease. I don’t know. I feel like this is a kettle of fish probably best brought up in another blog post.

There have been plus sides to all the shenanigans, though. I’ve got the business back up and running. I made two sales in the last fortnight that has given the the “you can do the thing!” feeling again, and I’ve signed up for what I hope is the first of many courses ranging from silversmithing through to enameling, engraving, stone setting and all sorts that should add to my skills nicely. I am a little stressed about the fact that I have to take ‘stationary hobby business’ through to ‘making $180 a week’ in a matter of 3 months, especially when I don’t have a dedicated work space and, for a good portion of it, my desk has been a sheet of MDF across the bed. I’m presently in talks with the mother about getting a caravan or a demountable for the backyard that I can effectively make my office, but it feels a little like pulling teeth right now.

I also do have some kind of secret good news to share, and I figure this is the best note to end my blog on 🙂 Long story short, once this flare is over, I’ll be taking part in a weekly video presentation for spoonies, by spoonies. Covering everything from hobbies and relationships through to dealing with hospitals, mental health and more. I’m a little limited right now given my health and how long it’s taken me to write this blog post (brain-hands relationship has gone on holiday!), but it will be exciting to be involved in a project like this.

I’m going to leave this here and go and get some sleep.

❤ Abi

 

 

 

 

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[Journal] Round the Twist

It’s been a little while since I updated this blog, and it’s my fault. We did the house move, I got really sick for a while, had a massive flare, had a hard drive crash, wrestled with depression and was generally either in bed or at an appointment. I probably could have written a journal in the mean time, but I was pretty emotionally exhausted and have been dealing with settling in issues here and, honestly, I couldn’t outlay the energy to write a big, long blog update and deal with things on my end as well. So now that I’ve managed to calm things down a little on this end, I can update you all and let you know I’m still here.

So, to begin. Moving was a hassle. Not so much for the physical moving of boxes, but Manthing and I have moved in from a small 3 bedroom house on our own to the even smaller family 2 bedroom home. It’s been a process of culling furniture, playing tetris with boxes to maximise space, clearing out 20 years of hoarding from a garage and generally destroying dustbunnies in any way I can. My mother is a lovely woman but, due to her own fairly rough past, has a history of some mental health issues which are self-perpetuating with her unhealthy behaviour at present. Manthing and I, amongst other reasons, have moved in here in order to hopefully help her, keep her company and ease her back into the world at her own pace. She now has reason to get out and leave the house, eats well (Because I’m an amazing cook!) and has reasonable expectations set for behaviour and routine. Long story short, it’s a good thing.

The problem I face is that this is also the house I left when I was 18 and my mother and I historically have not had the best relationship. I find a lot of her behaviour incredibly frustrating and senseless, and I’m often a little on the snippy side with her and Manthing since I’ve had nothing but above-average pain levels since moving here. It’s somewhat of a tetchy matter and something we’re working towards, but the situation is highly unpredictable due to the present mental health issues in this house. I don’t often know if I’m speaking to my mother or a 16 year old and since these aren’t issues she will address herself, I’m rather at a stalemate about the whole thing and the best I can do is take each day as it comes and do my best to be understanding about it all.

I’ve also had to resign with a new Disability Employment Support service due to policy changes – everyone under 35 and on disability pension is now considered a lazy, layabout dole bludger and MUST return to work, regardless of their personal circumstances. I’ve taken great pains over the last 6 months to explore my educational options and I’d sincerely like to follow up and complete my Vet Nursing studies with a view to continue on to Vet Science, but it has to be done at a snails pace with my body and neurological issues. I’d also enjoy furthering my silversmithing skills and learning how to manufacture set-stone and silver jewellery, but the course arrangements for that make it almost impossible.  But, it’s been decided for me that I must return to work, despite also running a small business. You know, the small business that doesn’t make minimum wage presently due to my shit health? Yeah. So under present circumstances I’m being forwarded for admin/reception jobs I have no say over.

At this point it only looks like one or two days a week, which should be fine in theory, but I’m rather concerned about what’s going to happen when I have a repeat of the last 2 weeks where I have no choice but to spend it in bed or face hospitalisation. I’m damn good at that line of work and can run an entire corporate office while half asleep (and have done so in the past!), but I’m concerned about the days I can’t work properly, I have to go home early or can’t turn up at all. If I don’t make my weekly hours, my pension gets cut entirely and Manthing and my mother don’t have enough to cover the cost of my bills and medication through just the two of them.

So, in the mean time, I’m doing my best to get the business up and happening again, despite everything being in storage. The reason you haven’t seen anything of the 100 Unicorns Project these last few weeks is because I was busy turning my last drawing into a completed colouring page for sale via PDF. It was a little bit of a runabout considering it was my very first, but I learned a lot from the process that will make it much easier for me with the next one. My plan is to release a whole bunch of colouring pages for sale in my Etsy store that will, at the very least, put a few dollars a fortnight into my pocket to make it easier to pay for other things. I considered starting a Paetron for this blog, but I don’t think I offer enough to warrant people contributing towards the blog financially. Furthermore, I think that the few people that follow this blog have health issues of their own which isn’t a cheap thing, so their money would be better spent going towards their own bills rather than paying for me to write and draw. At least with the colouring pages, there’s an actual transaction taking place – they buy the colouring page, they get something for their money. I’m still deliberating wheather I should put the link to the listing here or not, since this blog provides me a degree of anonymity and my shop breaches that. I suppose if enough people are interested in spending two dollars on a page, I would consider it, but that’s not the purpose of this blog post.

“Over the weekend I was referred to a potential new GP. The incident left me rather upset and I wrote a quick post about it on another site, and I figured it was finally time for me to post it here.

So today I saw a potential new GP. I knew we wouldn’t see eye to eye when the first thing out of his mouth was that one of my two major debilitating conditons was psychological and he didn’t believe in it, amongst other things.

While I firmly acknowledge that a good portion of pain management and mitigation comes from a good headspace and that stress and psychological hiccups will increase my pain levels and potentially CAUSE flares for me, disregarding factual evidence based in scientific publications in favour of willful ignorance to uphold your baised and outdated views is frankly a breech of the hipocratic oath. Disregaring the research of fellow doctors and the confirmation of verified conditions in the form of a diagnosis is disrespect for your colleagues and, most importantly, blatantly denying the very real symptoms I face on a faily basis ignores the fact that I am not just a record sheet. I am a human being whose existence and suffering and joy and sadness is as real as anyone else’s. You can not ignore the patient in favour of the medicine. You can’t seperate the condition from the afflicted.

I’ve gone through countless versions of this experience when I see a new doctor for the first time, and it never gets any easier when it happens. If i had a broken arm or fractured pelvis, a quantifiable and documentable deviation from health, you would never dream of telling me that I should just “get my shit together” and “get on with life”. My condition would be real and visible and if you told me that the fracture was purely in my head, you would be booted out of medicine, called a complete imbicle and everyone would hoo ra in behind me about how inconsiderate you were.

Life with an invisible illness stretches so far beyond “I’m sick” that it’s often impossible to explain it to people who have never experienced anything like it. It’s not just the struggle of your own body working against you. It’s having to fight to have people believe you because you pass as healthy and able bodied. It’s having medical practitioners tell you that they don’t believe you or that they don’t believe in the condition. It’s being questioned every time you need pain medication. It’s being labled a drug seeker, an attention whore, lazy, unmotivated and even a hypochondriac. It’s having every action scrutinised by people who deny the truth of your existence, and it still being acceptible for them to vocally deny your issues. It’s a fight. Every single day. Not just against your own body, but against the world. For some people it’s just against doctors. For others, it’s against your friends and family too.

It’s the uncertainty of knowing whether you will be believed and it’s not wanting to talk about your illnesses because of it. It’s wanting so badly to pass as healthy to avoid the scrutiny and yet hating every single second that the beast you’re fighting is invisible to everyone but yourself and the rare few that know that monster, too.

And it fucking sucks.”

 

I figure this might be something people can relate to. I’m still very exhausted from everything that’s happened over the past few weeks, so I might leave this blog entry off here and do my best to keep some more regular posting from here on in.

❤ Abi

[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] Tweaking the meds again

Over the last few months, I’ve noticed that my ‘nerve pain’ has been coming back.

Nerve pain is the term I use to describe the sporadic, usually-short-lived bursts of pain from parts of my body. Sometimes it feels like a knife in the knee, another time it’ll be a back spazm, the time after that, it can be a very short cluster headache. It’s always random and entirely unpredictable and is very intense. Usually enough for me to cry out/swear/punch a table/use your imagination here, and stop me in my tracks. It can hit anywhere from between my fingers through to *ahem* very specific bits of my ladyparts (which is NOT a fun experience, I can tell you). Anywhere where there might be a cluster of nerves. It can happen once a day, or anywhere up to 50+ times a day. It depends on how much of an arsehole my body is feeling like at the time.

Now, I was initially put on Lyrica in the hope that it might help my overall pain levels, but it only succeeded in making me really groggy. We upped the dose to the 150s I’m on presently and found, quite conveniently, that it actually stopped my nerve pain. Not altogether, but to such a degree that it took my daily average of “[Inert expletive here]!” down from about 30-odd times a day to about 1 or 2. It was amazing. I still felt like a zombie, but I could go about my business without looking like I was about to have a stroke in the middle of the supermarket because my knee just felt like I had been stabbed by an angry dwarf on cocaine.

The problem is that my body, never being content to take the easy street, has decided we’ve built up a tolerance to the Lyrica. So we’re still Queen Derp, but the nerve pain came back and announced itself most spectacularly with a punch-in-the-head cluster headache the other day that had me hugging my own skull. I had noticed an increase in the amount of nerve pain up to then, but had chalked that down to stress and other things.

Now, I had called my specialist a month or two beforehand to let him know that we couldn’t increase my dose to the 150 because I was already on it, but had heard nothing back. This morning I left a message and got a call back after I had already discussed my issues with my GP.

– On an aside, awesome news. Turns out my sinus infection was a twofer. One bacterial, one viral. Yeehaw –

Long story short, I’m right in my assumptions, my GP no longer thinks I’m an idiot and I get to pay less for medication. Downside is that we’ve got two options, both okay’d by my specialist. Option A is to double the dose of Lyrica I’m on and see if it fixes the issue, but then I’m on twice as much as I was before with every chance of me just having the same problem. Or B, we can wean me off it, stay off it for a month to clear my system and then start it up again and see if it works. I feel like this is the human equivalent of “have you tried turning it on and off again”.

I’ve opted for the second one because, frankly, knowing how my body reacted to going on Lyrica, I’m going to be completely braindead if we double the dose. I’m barely functioning now, but at least I’m not putting-my-hand-in-the-sandwich-toaster kind of stupid. Yet. The issue with coming off the Lyrica, though, is the same as going up a dose. It’s not going to be fun. From what I know, it won’t be quite as bad as coming off the Duloxetine, but it’s still not overly fun. And this isn’t the nice, gentle let-down either. It’s a week of every other day and then cold turkey because we need it out of my system asap.

So, tonight is the first night of no Lyrica. I won’t fully feel the effects until about tomorrow afternoon, knowing my body (or maybe sooner, who knows) but I’m probably going to feel like I’m hungover without the ‘fun’ of actually getting there. After this, both my specialist and my GP have said that this is pretty much it. There’s nothing else we can really do without any more research or findings. It’s the end of my proverbial golden road of treatment until someone extends the footpath. Ultimately, if all the Lyrica is doing is stopping those shooting pains (and I’m getting a head full of wet sand in compensation), I think I’d be happier being off it entirely. I’m going to keep logs of how I’m going in regards to pain, just to see if it’s actually worth being on yet another tablet for much ado about nothing in the long run.

Anyway, I’m exhausted, so I’m heading in for the night. As a treat to those who have made it this far, if there’s any animal, mineral or vegitable in particular you want to see immortalised in a comic or just on it’s own, leave a comment and I’ll get back to you at the sound of the beeeeeeep~

Happyy Blogaversary to me!

Firstly, I’d like to announce that According to Abigail has been active for two years as of yesterday 🙂 It’s a pretty spectacular landmark for me, especially considering some mornings I can’t even put my pants on the right way. Thank you to each and every one of you for following or getting involved with my blog over the last 24 months. It means a hell of a lot to me. You guys have been my strength and support on my shitty days and the reason I laugh on my good ones.

I hope that the next 12 months will allow me to bring you more comics, more interesting insults and a lot more Abi.

Speaking of, some of you may be wondering why I’ve been quiet lately. Truth is, I haven’t been well. Today I had to put out an announcement to friends of mine after the issues came to a head.

Consider this a PSA. The reason I ask people to be so god damn careful about sickness around me is this:

At [my last big event], I was given a case of tonsillitis from someone I knew. I was exceedingly unimpressed. It sucked, but wasn’t overly nasty. I considered myself fairly lucky. After a week of shit, I thought I had mostly recovered, but my sinuses played up again. And again. And again. Now a month on, after fighting off the same sinus infection, it’s gotten to the point where I can’t breathe and wake up gasping at night. My sinuses are nothing but blood and mucus. It’s now considered ‘chronic’ by my GP with the rest of my health issues and I’m on some seriously hardcore antibiotics to try and kick it. Continuous round one and two over the next 10 days. If nothing has been resolved by next Thursday, we go in for round three.

This is not fun. This is not a game. My physical health depends on the vigilance of those around me. I go to GREAT pains to avoid bugs, including sacrificing my in-person social life when I’m in a high-risk period. There’s a reason I ask my friends to get the flu shot. There is a reason I ask you to stay the hell away from me when you’re sick and infectious. There is a very good reason I rarely share food or drink with anyone aside from Kieran. It’s not just because I’m a rampant bitch, or at least that’s not the only reason. My immune system sucks. I’m vulnerable to shit that a healthy body would laugh at. If I end up getting the common cold, I’m in bed for a week in complete agony. Getting sick for me involves so much more than just having a cough or a sore throat. It physically pushes my body and immune system to it’s limits. It’s negligence of the most basic rules of being sick that can land me in hospital.

Don’t be that guy/girl, or I WILL slap the everloving shit out of you when I recover.

I still have a hard time wrapping my head around how someone can be aware of the fact that I am a chronic illness kitty, but still so completely mind-numbingly dense to the necessary precautions to take. Hell, not just around me, but when you’re sick with something as virulent as tonsillitis.

So, long story short, I’m not sleeping well, I feel like shit and I’m constantly run down due to the fact that my already stressed body is having to fight this shit off all over again. Because of the physical stress, I’m likewise in a pain flare and having all sorts of fun. Until I start feeling a bit better, I might just lie low a little while longer and love on you all extra hard when I get back ❤

Keep being awesome!

[Journal] So I ended up in hospital yesterday.

So, last night, at about 1:30am, I ended up in hospital. Easter Sunday, Manthing and I decided we weren’t going to cook. We ordered takeout from our local fast-food place (they deliver, which is awesome). For those of you in Aus, you should be familiar with Red Rooster. For those not, it’s basically a place that deals exclusively in chicken. Sometimes bacon. So, I ordered my usual from there.

About two hours after I had eaten, I started to feel unwell. Very unwell. My stomach was churning, I was shaking, I had a fever sweat and then chills and then a fever sweat, etc. It felt like someone had punched me in the guts. Hung over the toilet for a while, nothing. Went to sit back down? Ohshit. We’re going to throw up. Nothing. I proceeded to have a shower to try and ease the accompanying muscle aches – when I get sick, my fibro chimes in with “I wanna play, too!” and causes hell in a hand basket pain-wise – and I threw up all over the shower floor. I can honestly tell you it was one of the most hilariously disgusting things I’ve witnessed. I was sitting down on the shower floor, threw up suddenly all over myself, the walls and the floor. Interestingly enough, dinner smelled the same coming out as it did going in earlier.

By this point, I had taken anti-nausea medication on two different occasions. 15 minutes after I took them, I threw them both back up. Crawl into bed after washing myself off, feel worse than I have in a long while. Suspect food poisoning. I call the nurse advice line we have here and she runs through the symptoms with me and suggests I head off to hospital to be monitored.

Massively sick, fever, chills, unable to hold anything at all down since 10pm. By this time it was bout 1am. On my way to the car, I threw up in the garden, over the railing and then in the laundry sink. I should have marked them off on a bingo card or something. Rather than going to the usual hospital of mine, we went to the closer one. Biggest mistake ever. Last night, it took 5 hours of me throwing up in the main ER room and being violently sick and very dehydrated before I was seen, I was left in a bed for well over an hour when I got transferred to the Short Stay ward and it took them another hour from when I was seen in the ward to do what I had been asking the entire time – give me an anti-nausea shot and let me go home.

I had politely asked a few times when I was going to be seen and they kept saying I was next in line and that it wasn’t a very busy night at all. While in short stay, I tried to explain to the nurse that, with me being sick, I need to take my painkillers to make this ordeal bearable. My pain was slowly climbing it’s way up to a 9 (I don’t tempt fate by using 10, or I know my body will one-up it) and because I couldn’t hold down fluids, I couldn’t take anything and I was very quickly heading towards utter agony. At this point, I was curled up in the fetal position, clutching my stomach and whimpering. I got the filthy “Oh, so you’re a druggie” looks from the young nurse, while the older ones actually seemed to understand and tried to hurry the process along. There were no blood tests or investigation into whether it was something more serious like salmonella from the chicken.

I’d also like to note that there were still pieces of bloody gauze on the floor beneath my bed, and the remnants of blood ON the bed itself. I’m very much aware that my case was far from urgent to start, and was totally happy to wait a little while the more urgent patients got seen before me. Long story short though, I was very unimpressed with the whole ordeal. We didn’t get to leave until something like 7am. We drove home through some very beautiful fog and I had a hot shower and climbed straight into bed.

I’ve only just woken up and I still feel like shit. I have MASSIVE body pains. I literally feel like I’ve been hit by a truck. I’m more or less taking the next few days to myself to recover and feel less like patient zero before the zombie apocalypse. Manthing has to help me to and from the toilet because I’m so unsteady on my feet. My skin hurts to touch, the feeling of clothing is causing me a great deal of pain, but the cold would cause me more. Suffice to say that I am a little ball of pain and hate right now and it’s taken considerable effort to write this blog post. Since it’s about me and my whacky adventures in being a sick little munchkin, I figure it warranted a post here.

I’m going to sign off here because I have no sodding idea what else to write. Be good ❤

[Journal] That little blue pill

Today saw another visit to the specialist. Aside from consistently being over an hour late every time I go to see him, very little has changed; we’re still exactly two tenths of bugger-all close to improving my pain, but that doesn’t mean that we’re not going to throw medications at it!

After much debate over just how awful Cymbalta was for me (it’s cool, disregard everything I say the first time around, doc) we came to the conclusion that the Lyrica does actually help the horrible shooting nerve pain, but does nothing for the muscular pain or the burning joint pain or anything else that’s going on. So, the Lyrica stays. That’s cool. We put me back on the Celebrex, double my dose and cross our fingers that this might help some other kind of pain – you don’t know unless you try these things. It’s also important that I go back on some kind of anti-depressant/anxiety control and get my sleep back into some kind of order. At present, I’m sleeping for maybe 3 hours a night, if I’m lucky. Unfortunately, I’m also suffering some major mental/cerebral fuckery. Memory loss. Major memory loss. The kind where I’ll forget what day it is, why I got up to use the bathroom (yes, when it’s kind of obvious) and what I’m talking about mid way through a conversation.

So, the deal is that I’ve been put on Amytriptaline. Some of you know that this goes very poorly for me, but this is my option right now. 10811614_10153360609232942_398713081_n Mostly due to my own cockup – I could only remember amytriptaline when I went in, not what it did to me (and I had Manthing with me, too, but he couldn’t remember) so there’s a good chance I’ll need to have this changed by a GP some time in the next week. Granted, I am on a very low dose, so if I do react badly, I at least won’t want to gnaw my own ankle off because it’s smack talking me. But, I’m going to have to start keeping a log of what shit I react badly to and what stuff I can take. Just, for the life of me, I couldn’t remember if it was the Endep or the Xydep, and he would have picked one either way and said “let’s try this and see if it’s this one”, so we’re functionally in the same place.

At the same time, there’s a lot going on in my  brain right now. The real estate have decided to functionally be dicks about the entire housing thing, but we got approved for a new place that we can move into after the 21st. We’re $2500 out of pocket, but jesus tapdancing christ, we don’t have to put up with the hell that is here. We almost wrote off the car today/died, but no biggie. I have no small amount of applause for Manthing’s driving skills for avoiding what would have otherwise been a really awful situation. I’m exhausted and my head hurts. Tomorrow tickets for the Foo Fighters go on sale and I want need to be at their concert in Feb. I’m crossing my fingers that I get tickets for myself, manthing and two friends. They go on sale in 9 hours and I will sell my firstborn child for one.

At this point, I’m running out of brain to write, so I’m going to wrap things up. I’ve got a few comics up my sleeves (just need the time/equipment to draw them and one of those  two are in boxes!) and a few other ideas going on, but you’ll have to wait for that 🙂

A good support community

One thing people never tell you about being diagnosed with Fibro is that it can be seriously scary sometimes. Especially when you start getting all these strange and whacky symptoms that make no sense, you get no answers (see: “Your bloods came back perfectly normal!”) and you personally don’t know people you can talk to about these things.

One of the best things you can do is find a community for people dealing with Fibro specifically. In my case, it’s Reddit. Time and time again, I’ve found myself overwhelmed with the response I’ve had to my dire “Help, am I dying?” questions. Obviously not medical advice, but you’re dealing with people that LIVE the same condition you have and deal with the strange shit it brings on a daily basis. Sometimes all you need is to feel like you’re being understood. Sometimes you need advice from someone that’s walked the same road as you. Sometimes, you just need to feel like you’re not going mad. Thus far, the two most amazing communities I’ve encountered for this are Reddit and the Bloggers. Both are entirely no-bullshit, real people that will tell things how it is. Both have been important beyond words in my rough times, my pain flares and my freakouts.

For those without these resources, please please PLEASE follow these links and build your support community.

http://www.reddit.com/r/Fibromyalgia/ – The Reddit board. I love these guys to bits.

My fellow Fibromites:

http://bleachedbonevalley.wordpress.com/ – A wonderful woman that tells things exactly how it is.

http://littleefibro.wordpress.com/ – A blog I’ve found a lot of inspiration in.

http://fighterzblog.wordpress.com/ A zine specifically for us.

http://myfibrotasticlife.com/ – The first blog that I followed on here. A fellow fighter, incredible young woman and the inspiration for continuing to keep my own blog going. Thank you.

Through the other side

You may have noticed it’s been quite some time since I last posted here in my little blog. In case you missed out on the news, I moved house between now and the last time I bothered you all. The new place is wonderful and has made life a lot easier in certain aspects of my life, including my health. I now have have a house with minimal stairs, LOTS of space for when I’m having my bad days, my own personal bathroom so I don’t have to make a trek across the mountains to use the bathroom of a night, and I also have access to a BATH.

It’s amazing how much these little things can make a difference. I’m finding that, now we’re settling in, I can self-manage my health issues better (when they’re manageable, but I’ll get to that), my stress levels have gone down in regards to petty household stuff, and I now actually have the space to move and breathe. I no longer feel like a sardine in a tiny little can.

This is what our bed feels like now. Not actually our bed, but god does it feel big.

Manthing is also doing much better now that we’re out of our old house. He especially likes the fact that I no longer have to climb over him to get out of bed when I need to use the bathroom of a night. We can have the double bed with access to both sides 😀 I also no longer have to bother him to put the phone on charge or to pass me things I need since I have my own bedside table. See what I mean when I was saying it’s all about the little things?

So, the new house is great. We live in a nice quiet area. I’m not kidding. We’re actually across the road from a cemetery here, but it’s amazingly peaceful and not at all creepy. Rather than the usual grave stones, we’re across from the family garden section, so our view is of well-tended gardens, sandstone boulders and manicured lawns. Mind you, they DO have the barbed wire on the fence facing IN, so in the event of a zombie uprising, we should at least have time to grab our pointed sticks.

Now, speaking of manageable health issues, the move didn’t go very smoothly. I learned the hard way what my body’s ‘hard’ limits are. In terms of BDSM, hard limits are anything you WILL NOT do under any circumstances. In this instance, my body’s hard limits are being pushed to a certain point, going without rest and being shunted along on energy drinks. I had minimal rest, a major pain flare the week before the move, Shark Week also decided to show up for it’s once-every-six-month visit that same week and I was so run down it wasn’t funny. However, half the people that said they’d offer us help for the move bailed on us and we were left with myself, Manthing, our other housemate and one other friend over the weekend of the move. To put it frankly, it was bullshit, but you’ve got to do what you’ve got to do.

To cut to the chase, I ended up in hospital with heart palpitations, headspins and my body generally giving me a big “FUCK YOU!”. I got strapped to a 24-hour EKG (that was a very un-fun experience, as was trying to wash the contact goo off afterwards), I pushed myself into another massive flare up and basically slept for a week afterwards.

Quoth the body…

It took me almost two weeks to recover from that stupidity and I’ve learned my lesson in that area. However, my body is still punishing me. Because of that incident, I’ve had a big follow-on Fibro flare up and my Chronic Fatigue is presently kicking my arse. I’m heading into what we call the ‘Sleeping Beauty’ week where my CFS basically renders me bedridden and otherwise useless until I rest as much as my Evil Overlords demand. At the same time, I’ve had to get two ugly ingrown toenails dug out, so my left big toe looks like it lost a fight with a blender (and feels about the same) and my ladyparts are having some kind of spastic attack where I’m now lactating out of just one breast. Fucked if I know why. I’ve had the blood tests and the ultrasounds and they’ve all come back negative for chest-bursters and hormonal reasons, so it seems that my body is just exercising it’s right to hit that next level of crazy.

On top of all of these things, I’ve had some massive financial issues hit me lately. See, I finally got accepted for Disability Pension. Over here, it’s not an easy process at all. It involves more scrutiny than a full cavity search at the airport, and less humanity. I won’t go into details, but the point is that I finally got confirmation that I had been granted the payments. This in itself was a wonderful thing as I wouldn’t have to worry about where my next rent payment was coming from and I wouldn’t have to beg my mother to cover the cost of my medications. The amount I was granted was also enough for us to afford a better place – see: where we live presently. So things were looking up. We moved out, it was fantastic and I was finally getting somewhere. I was paying off people I owed, I was going to be able to afford access to the heated pools at the local gym in a few months and, god forbid, I’d be able to put a bit of money into my business.

Twice they screwed up my paperwork and I hunted them down to make sure they corrected it both times. The third time they screwed me around, they changed my payrate to less than half of what I was getting (and what I was promised!), AFTER we had already signed a 6-month lease for the new property and had moved out. I spent 6 hours on phone calls to various departments, different social workers and generally being degraded by the people on the other end of the phone. Long story short, they had screwed up initially, and had done so HARD. In point of fact they had actually lied to me about the rate I’d be getting. Yes, the one I confirmed twice with them and the one I based my decisions off.

So things are a little complicated now. I’m in a new and more expensive house, I have stuff I can no longer afford, I can’t get certain basic needs met and I’m struggling to make ends meet. On the upside, I still have my pension card so my mother no longer has to pay for my medication. They still cost me about $100 a month, even with the subsidies, but all of my money goes towards that now. The really shitty bit is that Manthing and I sat down and worked this out. My payments were cut because of his wages. If he lost his job and became my full-time carer here, my rate would go back up, he’d get the full amount and we’d actually be bringing in more than he’s earning at the moment. Mind you, he’s earning a dollar above minimum wage which is the stupid bit. I still don’t understand how a Government can allow it’s most vulnerable people to essentially rot when there’s no option for them to return to work. I’m trying to get the business up and running again as quickly as I can after the move, but with all the health issues you can imagine just how easy that is.

So I’m here trying to manage my day-to-day life with Queen HateYourFace throwing a wobbly (yes, I’m referring to my body), trying to balance household finances and not let it eat at me, and on top of it all, because of how run down I’ve been, I’ve also had massive depression issues :/ Depression is one of those stupid things that everyone seems to know about but nobody really seems to know what it involves. It’s like knowing that Mister Smith down the road has this issue where he farts a lot, but you don’t really know why, nor do you bother to question it.

To give you an insight into depression in my case – as I must impress upon you all that it is different for each and every person – imagine all the worst things about yourself, take a picture, and put that over every mirror in the house. You’ve also got this little gnome that follows you around the house and kicks you in your joints (because there is a physical side associated with depression) when you’re not looking. He also spits, swears, points out everything that’s wrong in the house and is the voice in your ear telling you everything you’ve failed at, everything you can’t do and all the things you should be miserable about.

You’re a sick, useless butt head. You smell, you’re ugly and nobody loves you. Yeah, even that guy you’ve lived with for 3 years. He’s sick of your shit. Everyone’s sick of your shit. You’ll never amount to anything because you’re always the sick one and nobody wants to deal with that. Best of all, guess what? You can’t do a damn thing about it!

– Grognar the shitfaced Gnome

So I’m here dealing with all these physical issues beating me up. On top of that, the chemical imbalance in my brain has decided to help tag team me as well. Fortunately I’m really lucky living where I do. I’m one of those privileged people that has access to a reasonable free healthcare system and, because of that, access to a therapist. She and I have done a lot of talking about the issues at hand and have been able to identify key points I beat myself up over. We’ve worked out a plan of attack, per se, and I’m slowly working on kicking Grognar’s hairy little arse out of my house. All the other issues will be dealt with later once I have a stable head back on my shoulders.

I know this has probably been a bit of a marathon read, but for someone that doesn’t normally blog I can assure you that it’s been just as much of an endurance event. As part of my commitment to kick depression’s arse and get my shit back on track, I’ve promise to keep this blog active and see every post as an achievement, whether it’s a written post, a meme or a comic I’ve drawn. I can’t promise a post every day or even every few days, but I will do what I can and I have nothing but the greatest admiration and gratitude for those of you that have followed my blog (all 40 of you. That’s utterly insane!) because it’s you people that have made me commit to getting my story out there. It’s because I know that someone somewhere will read this that I will continue writing, and I’m going to learn to love doing it for my own reasons as we go.

I do actually have a slightly more bright post lined up for you all in the next few days 🙂 I’m also making a point of getting back into drawing my little single-page comics since they’ve been so well received here.

I honestly hope you’ve all been keeping well in my absence and I’d love to hear what you’ve all been up to, even if you’d prefer to message me privately. I’d really love to get to know you all!

Anyhoo, it’s late here and my bed is making sexy eyes at me. I think it’s time I go and get some shut-eye.

– Abigail