[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

[Picture] In a certain light…

Sometimes you find those little moments where even the crappiest things have a pretty edge to them. Like my Vitamin D supplements. They almost look like little lizard eggs! My money is on tiny little Sun dragons.
What do you think?

[Comic] Unicorn 2/100

So here’s unicorn #2 and a sneaky extra. The scraggy looking one is a sketch I found in an old book while packing for the move, and I decided to include it because it fit the theme, but not include it in the numbered drawings because the plan is to, well, draw 100 of these glorious bastards.

On a side note, we’re about 2 car trips from being finished with the move, thank god. I am entirely over having to hear the screech of packing tape and hauling boxes of crap. The weather has also become entirely hormonal here and we’re swinging between jumper-wearing-cold with rain and t-shirt-and-shorts stinking hot, so my body is going absolutely nuts, but we’re getting there. Only just one more week until we’re settled…

[Comic] Unicorn 1/100

Because I am way too tired to think of a better title. Seriously. I am exhausted.

Have a unicorn. 1/100 of my 100 unicorns project.

I also just realise that I was so tired I accidentally sent this to my Drafts rather than publishing it last night. Derp.

[Aside] Thoughts on pain levels

One of the biggest things that stands out to me as a chronic pain sufferer is that most people expect you to be pain free after you take your painkillers. Like it’s as simple as a headache, you pop a few pills and you’re on your way again.

So many people don’t seem to understand that it’s not about pain elimination, but about pain management. The reality of the matter for most chronic pain sufferers is thst you never actually get that “ahh” moment when you’re entirely pain free, but you adopt a new system wherein you have acceptable and unacceptable levels of pain. You expect every day to greet you with a certain level of pain and, after a while,  that becomes your norm or average. Any deviation from that new setting becomes unacceptable and that’s when you end up undertaking pain management, because trying to get back to the previous norm of ‘painfree’ is entirely unrealistic and you will simply end up making yourself sick on painkillers before you get there.

To put it simply,  us pain kitties simply run on a more exaggerated pain management system to healthy people. The principles are still the same, we just  have a different base line for pain to most other people.

On another note, I’m enjoying the idea of ‘microblogging’ in the sense of me sharing smaller thoughts with you all, rather than one big, several – page – long blog once a fortnight. I’m also going to keep trying out the new post settings until I find something I like for this format. I noticed there was no actual discernable change between my normal journal and my status update,  so I’m giving the ‘aside’ setting a go today.

[Comic] When chronic illness changes you

I’m on fire this last week. Four posts? Who even does that?! ME! But seriously. I’ve spent my downtime between moving having some deep-and-meaningful thoughts about life, the universe and everything and this comic is the result of that.

When you have any kind of chronic illness, be it physical, mental or otherwise, you change. Sometimes things can change for the better, and sometimes… well, I’ll let you read.

 

On an aside, Manthing pointed out that I managed to draw my own toe wrong. I am, in fact, missing the nail on the big toe of my right foot. The more you know.

[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.

[Comic] A visual depiction of Brain Fog

So after all the work to pack and move today, and the blogging earlier, an idea came to me while cooking dinner. I finally figured out the best way for me to explain brain fog to someone who has never experienced it before. Obviously it’s different for everyone, but I hope this goes a little way towards helping non-Fibro sufferers understand the daily derp we kitties face and that sometimes (Just sometimes!) we’re not actually ignoring you 🙂

 

[Journal] Bringing you up to speed and 100 unicorns project

So, some of you may have noticed that all my journals since January have been rather short and there hasn’t been an abundance of activity on my blog. I’m here to explain why.

Back towards Christmas, we knew my grandmother wasn’t doing so well. She was very old, had seen a lot of shit in her time and her whole body was shutting down on her after years of medication abuse, two open heart surgeries and enough other health issues that make me look like a Spring chicken. When she passed away around the 17th of January, it was sad but no real surprise. I’m fairly certain the only thing that kept her holding on so long was her sheer stubbornness, both a blessing and a curse that all European women seem to have.

We got past the funeral, barely. With family issues (because there is always family issues at a funeral) seen to with as much grace as I could muster, we got to the paperwork and the Will. Everything’s set in motion and I found out where we stood on a few matters regarding the house, inheritance and, again, family. This is after spending roughly a fortnight pulling my hair out, swearing in every language I know and wanting to set people’s pubes on fire.

So, with that being one of the shortest run-downs of an overly bullshit and dramatic time that I think I’ve ever written, we’re back up to date and the situation stands thus:

The manthing and I are moving. Yes, again.

We had been in this present rental roughly a year and the universe caught wind of how nice and peaceful things had been and decided to let off a metric tonne of napalm under our arses. What it boils down to is that my mother dearest can’t live alone. Now that’s not to say that she’s physically incapable of it, but moreso her mental health suffers greatly from being isolated to the point where she barely leaves the house. She needs human company. While manthing and I will enjoy not having to pay rent for a while, at this point it’s a secondary consideration.

Once we move back home, we’ll handle the rest of the Will and estate bullshit, eventually sell the place, end up moving to another rental closer to where we want to live in 9 months or so, and then finally buying somewhere permanent where my mother will remain with us.

In between all of this, I’ve had two major flares, have been working on packing an entire house into boxes and all sorts of mundane bullshit at the same time, which is why the posts have been short and sporadic at best. Manthing and I are presently at the point where we’re at the apex of the move. Roughly half the house is packed and in boxes (and I’m taking a well-deserved break from it all to write this), so in theory that means I should have a little more time for blogging and comic writing in the next few weeks, but I’m not holding my breath.

Now for the fun part. I’ve started something I’ve decided to call the 100 unicorns project. I know. The name is just so full of imagination.

What this boils down to is that, over the next… well, whenever, to combat my depression and anxiety, I will be drawing unicorns. 100 of them, to be exact. Now, I had planned to do 365 days of unicorns, and paled at the thought of having to hold the pencil with my foot while in the shower trying to bathe the pain away, so I figured 100 was much more reasonable. I could space them out every few days, or do three in a day, so long as I stuck to the plan and kept drawing. They could be sketches, paintings or even some kind of jewellery item, so long as they fit the theme.

It’s nothing too crazy, but I adore unicorns and I also like not feeling like shit. And you all seem to like drawings, so it’s the perfect motivation. So, you all have 100 unicorns to look forward to over the next (hopefully) 9 months or so. That’s two a week and then a few on the side, right? Anyway, back to packing!

[Picture] Well, that’s a mouthful.

So at what point do you need stop taking your pills with food and start taking food with your pills?

Tonight’s lot. I just had to take a picture.

In no particular order for the curious:
– Echinacea,  Garlic, Zinc and Vit C. My secret weapon against colds and flu.
– Two fish oil capsules.
– Standard multivitamin
– Magnesium Glycinate. Specific for Fibro pain.
– Probiotic for IBS control
– Panadiene forte to stop me killing a bitch
– Celebrex for inflammation
– Endep for anxiety and Fibro
– Totally-not-Viagra Pristiq as a trial for Fibro pain.