[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

 

 

 

 

[Journal] Chronic Illness and the feeling of being left behind

So often we’re forced to use words like “I can’t” or “not today” when talking to people about social invitations or events outside our own house. Tonight is one such time for me, as manthing and I had planned to go into the city together to meet up with some friends. I was trying to be cautiously optimistic about it all, but as the day progressed, I realised that going out tonight wasn’t an option. Rather than keep him home through no fault of his own, Manthing decided to go without me.

I feel pretty awful – not just physically, but emotionally. I feel like I’ve been left behind and let down and forgotten about. Not by him, though. I feel like my own body has decided that I’m not allowed to go out, have fun and have a normal social life, and there are very few things harder than trying to battle against yourself. You can’t just hop up and jump into a new body when this one isn’t working properly, and it’s incredibly easy to take that feeling of being abandoned and turn that into self-pity, and eventually into depression.

So what do you do? You’re stuck at home, everyone else is out having a fantastic time, and all you have is pain and Netflix to keep you company. I’m struggling tonight to not fall into the pity party pit- and it can be bloody hard – but here’s some thing that might make it a little easier:

  1. Look after yourself.
    In the immortal words of Donna from Parks and Rec, “Treat ‘yo self” . Do something good for you. If that means eating a block of chocolate while in your pajamas, watching reruns of your favourite show, do it. This is about you making you feel good.

    But you know what? Sometimes you just can’t get past feeling shitty and miserable, and that’s okay. You do NOT have to be Superman or Wonderwoman. I give you complete and total permission to cry about how unfair it is, how much it all fucking sucks and how much you hate your body. Because we all have those moments, and sometimes we need an emotional release from feeling cooped up as much as we do a physical one. Hug that pillow, scream into that blanket or (snerk!) write that blog post! Let the world know you’re unhappy and that you’re over it, and make sure you give yourself a hug afterwards. You are loved.

  1. Talk to someone.
    If you’re stuck at home, there’s nothing more alienating than sitting in a quiet room by yourself. The next best thing thanks to the internet is to talk to people online. Go bug someone on Skype, prod a friend on Facebook or talk to a mate on KIK. If you’re after new friends, go and find a chat room that matches your interest, hit up the roleplaying boards on Gaia Online, or hell, go and check out some of the topics at r/CasualConversation .

    The worst thing you can do is to isolate yourself. At the very least, you’ll be catching up with someone you know. At best, you make a new friend.Sometimes it can be a little hard to talk to people when you’re in a crappy mood, but try and persevere. The best part of being online is that you can be entirely anonymous – if you don’t feel like sharing your present situation, you don’t have to. This may not be helpful for everyone, but I know it’s helped me on a few nights where I’d much rather just say I’m fine, than explaining how crap I feel.

  2. Plan for the future.
    This one is hard, even for me. You have to remember that, just because you can’t go out this time, it doesn’t mean “never”. Even though it feels pretty damn close, you’re disheartened and miserable, there’s always tomorrow. And if tomorrow is still shit, there’s next week. If next week is crap, the week after. Rinse repeat. It’s so very easy to go “I give up”, throw your hands up and become an angry pain sausage and sit in the corner, but that won’t fix the situation. What you’ll eventually find is that your mood right now is shit, and rightly so, but it will pass. You may wake up tomorrow feeling a little better for a sleep, and want to try and catch up with that friend or see that movie. You also may not, but that’s where we try again on the next tomorrow.

    Being a chronic kitty often means we feel left out and DO get left out of social events because we simply can’t keep up with others, or because it’s not an accessible thing, or because we simply fall out of social groups because we don’t have the energy for gossip. It can hurt, but it’s important that we do things within our means, too, and this means planning that lunch date, or going to see that movie or going over a friends, but do it within your capacity. Only you know what you are capable of, and you are awesome.

I don’t know if I feel better by writing this right now, but I know I’ll feel better tomorrow. I’m going to spend tonight playing some video games and watching a series and, if I feel particularly sassy, I’m going to get some ice cream. But most importantly, I’m going to give myself the time I need to feel better and I’m going to look after my body while doing it. As crap as I feel now, I know tomorrow would have been ten times worse than today if I had pushed myself to go out tonight. At least this way I know I’m taking the time to treat my body right, and when Manthing gets home, he’ll have lots of new stories to tell me about 🙂

I would love to know what other people do for ‘self care’ on nights like this. What’s your “go to” pick-me-up? Either leave a comment below or use the new “got a question?” page to leave me an anonymous answer!

❤ Abigail

 

[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] 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!

[Journal] Depression is like mold…

So, tonight I decided that having depression is a bit like fighting brown mold from the Pathfinder universe.

Brown mold is an interesting thing. It’s a pretty standard looking thing that you find plastered to walls and floors in dungeons, and when left alone it’s more or less harmless. However, when you encounter the brown mold, that’s where things get interesting. When it finds a source of heat (see: endothermic creatures, adventurers, pets, etc.), it feeds off that heat and draws it from any surrounding sources until they are ice cold. Anything within range of it’s draw begins to take cold damage as it eats away at the heat source magically. If you blast it with fire to try and destroy it, it simply doubles in size and continues on it’s merry existence.

Depression is an interesting thing. It’s pretty standard and most people have experienced it. You find little seeds of it stuck inside people, and when everything is going well, it’s more or less harmless. However, when you encounter depression head on because it’s been set off, that’s where things get interesting. When it finds a source of happiness (friends, family, favourite things, etc.), it feeds of that joy until it’s source has been extinguished – replaced by the same apathy and misery depression makes. People within range of someone affected by depression begin to take friendship damage as the condition causes the sufferer to push people away and find isolation, something that’s not always visible. If you drag the sufferer out into a social event or force them into ‘fun’, the depression doubles in size and leads to further feelings of isolation and sadness.

My life is undergoing some pretty big changes right now. Like. Literally life changing changes. And I’d doing my best to take it in my stride, but I’m no saint and I’ll be the first to admit that I’m actually afraid of change. I’ll run at it with a warrior’s face when I have to, but by the same token, I’m happy to just sit here and mind my own business and just do my own thing. This change has unsettled me. It’s changed the way I interact with people, it’s changed what I’ve been doing with my time and it changes how much patience I’ve had over the last few weeks -both with other people and myself.

It’s honestly starting to show. Because on one hand, I’m handling things damn well. I got through a funeral, helped with the prep, organised 50% of everything, have held things together and not slapped heads when relatives made truly horrid comments on the day, and then called my mum after to repeat them. I’m helping with the legal matters. I’m sorting the house. I’m slowly adjusting to the life changes I’m facing. I’m doing a damn fine job. On the other hand, my depression is out of hand, my anxiety is a dickweed, I feel I can count on one hand the friends that are actual friends and my body is an asshole. I feel like I’m fraying at the edges while simultaneously being the atlas of my world right now. And it’s incredibly confusing because I feel like I can’t be both of them at the same time.

I’m going to leave the blog here for tonight because I’m just too damn exhausted to analyze the situation much further. But I do plan on having at least one comic this week if everything goes to plan. Anyway, it’s almost 2am. I’ll pick up more on this another night.

[comic] Fighting off the blues with cats

So, I won’t lie. Due to events that have transpired (look at me being all fancy) that I’m not quite ready to talk about yet, my depression has come back with a horrid vengeance and great almighty teeth. I’ve been doing my best to counter the physical fallout – increased pain, lethargy, flu-like symptoms – by keeping myself busy and doing requests on one of the sites I frequent. And since I have nothing more productive I can do with my time right now, due to my body being a fetid arsemonger, I might as well post them here.

This is a very displeased cat – a portrait of someone’s moggy in the style of the Adventure Time cartoons.

Kitty.jpg

[Comic] Another cat

Oh god they’ve changed the editor again. Why again? I’ve only just gotten over my separation anxiety over the last change. But seriously. I have to learn this all over again :/

So, I’ve been doing some work on my end. The flare seems to have broken, I found out I likely have arthritis in my knees at 26 and I’ve been drawing more shit.

 

MeowthaIt seems to be keeping me sane thus far. Or at least some variant thereof.

Manthing keeps yelling at me to blog more, but a lot of the stuff that’s been going through my head has all been pretty morose and upsetting and that wasn’t what I wanted this blog to be about. So I’m presently chewing my lip over what I want to and don’t want to share. And drawing more nonsense.

[Journal] On the sidelines

At the moment I’m going on two and a half weeks of the worst pain flare I’ve ever had. I’ve needed help dressing almost every day, I’m having issues with basic movements and leaving the house is only for short trips. I haven’t been feeling the best emotionally,  as one would imagine.

To try and combat the bad moods, I’ve tried to make it along two sword fighting classes each week. Tonight I realised that I only had about a 30% chance that I could get up and fight, despite buying my gear (part of which doesn’t actually fit me. Yay for being a human chode) and I was already feeling shitty about it but I was dealing. I think I really cracked up a bit when we all filed into the hall and the teacher saw me sitting on the walls. The two mothers that were here for their kids pulled the chairs to sit away from me which was fantastic, but then the teacher asked if I was going to join in. I politely shook my head. He doesn’t know the details of my condition so I can’t blame him. He said I could follow along with my arms. I shook my head again. Because otherwise you can bet your arse I would already be up there doing it.

It’s about half an hour through the class and I’ve retreated to sitting in the car. I can’t quite explain how much it hurts to be at something I love so much but to not be able to participate because my body has decided for the third week now that we’ve lost most of our independence in favour of pain and misery. I know Manthing loves it as much as I do, so I’ve declined his offer to take me home early. Realistically I’ve already taken my painkillers. Being home won’t help. It’s just one of those nights where I’m having a hard time coming to terms with my illness and how far it has taken over my life.

I mean, how the hell is any normal person supposed to react to this? “Yeah, look. You get to live with chronic pain for your entire life, but once you hut your 20s, it’s going to go hell for leather for everything you’ve grown to love and found strength in. And it’s going to be entirely unpredictable so don’t set your heart on anything.”

I could start the whine of “I never agreed to this” but it won’t fix anything. I’m accepting this as one of my downer nights and hoping that things will have improved some next week. But I also realised that I actually know nobody else with fibro. Not on a personal level. Not in a way where I would feel comfortable in talking to them about tonight and knowing that they probably  understand exactly what I’m talking about. Tonight is a bit rough. Tomorrow will be better. But sometimes you just want it today.

[Journal] Tonight is a bad night

There’s simply nothing to make one feel more alone in the world than knowing that if you publicly ask for help, all the wrong people are going to answer.

Tonight isn’t a good night for me. It’s now almost 3am and that means I’ve been sitting on the very cusp of a full-blown anxiety attack for almost 9 hours. Despite taking all my medication and two beta-blockers (which are supposed to help with the fight/flight response), I’ve not been able to calm down. I’m on the edge of tears over nothing at all. I literally cried because I watched an episode of My Little Pony. I don’t know, really.

I’m in both physical and emotional pain, the latter being the worse of the two tonight. I’ve tried everything that normally helps. Everything. Hell, I’ve tried to go out and do a thing, have a social life and expand my brain a bit. Just shrug off the fear that some kind of horrible doom is impending or that life as I know it will crumble before me. I had a thumping heart and adrenaline rush the whole way there, the whole time I was there and the whole way home. I’m somewhere between proud of myself for achieving what I have so far, and filled with crippling doubt and emotional exhaustion.

Tonight is one of those nights where I wanted desperately to reach out to a friend, but because of the time and the day, nobody I want to talk to about something like this was around. I don’t hold it against any of them. I spoke to manthing, but sometimes you just want to talk to someone who hasn’t heard it all before, and I feel like the ones that were available would hear me, but wouldn’t actually listen.

I’m hesitant to write about personal issues and things involving friends on my blog these days, namely because I know that a few follow it through one way or another. A major fear of mine is that, in revealing how I really feel about things, I’ll face repercussions for it in person. It’s one of the reasons that I’ve deliberately kept this blog entirely anonymous. On that note, I will expect any individual that knows me in person to show me the respect I deserve here and not confront me over my views and feelings. If you respect me as a person and, indeed, as a friend, you will understand that sometimes one simply can’t be upfront and honest in the way we intent. We don’t want to hurt feelings or upset people, but to deny our own reactions and emotions is exactly what put me in this shitty place tonight to begin with.

I have some bad people in my life right now, and it really comes to the fore on a night like tonight when there’s a stark realisation that all my mental health support network no longer exists. Once upon a time, I had a ‘family’, I had close friends, I had people I called brother and sister and I felt safe. I felt like, even though I might come across monsters in the dark, I would always have those people behind me. In the last year, everything changed. People I trusted abused my emotions in the worst possible ways. In unforgivable, selfish, twisted ways when I begged for help and respite. My needs were shunted aside when I needed people most, while they marched up and dumped their life on my doorstep and looked at me expectantly. People I trusted beyond what I probably should have. People that I respected and gave a little bit of myself to. “Keep it safe, please”. Instead, they used it as a front door to my emotions and time. They played on my emotions and my intrinsic need to have people in my life when it was obvious to everyone but me that this was doing more harm than good.

So tonight, when I need someone to turn to, someone to tell me that “you know what, it’s going to be okay. I know you’re afraid now, you’re allowed to be afraid, but it’ll get better and you won’t need the fear tomorrow, so leave it here”, I have a crushing sense of loneliness. Even when manthing is one room over. I need these people in my life again. The friends, the lovers, the family, and I have only empty spaces where my impression of people once stood; their figures having wandered somewhere far from here, leaving only disappointment and child-like pain in their shadows. I find myself on a night like tonight struggling with demons that often feel lager than myself, and instead of people that listen, I have people who hear what they want and talk about themselves. I have people that tell me they understand and, on nights like tonight, I find that more of an insult than a comfort, because they don’t. They can’t feel my heart beating into a cavity the child in me has carved out with scratching nails and wild eyes. They can’t see the way it’s filled with terror from everything – named and nameless – and they don’t understand that the one thing I need tonight is someone who will truly listen and simply say “I am here for you. Please talk to me. Let me listen”.

Instead, I have people that ignore my outright plea for help to substitute it for something else that they find more fitting. Instead of understanding that, ultimately, I need to walk through this on my own, but want someone to wait for me at the other side, they walk next to me and tell me about all the woes and troubles they’re facing and do nothing but load the wagon I’m dragging down an already rocky road. I know if the wheels fall off, they won’t stop to help. They will take my stopping as a queue to simply heap more baggage on. I say this with experience.
Any other night I take that on willingly. Any other night, I grit my teeth as a simple greeting becomes a segue for them spewing their grief on me and expecting me to be a therapist. I’m not, and I likely never will be, by choice. I find my friendships abused time and time again by people mistaking my concern for their welfare for an open invitation to dump their life story on me and then demand I fix it for them. But not tonight.

Tonight I have been afraid of making it known that I need help, because the people that will answer are the ones with an agenda – they’re the ones time and time again that will see my unhappiness and take that as an excuse to ride the misery wagon in what they seem to think is tandem. The problem is that they don’t help me pull, they sit and expect me to do the work, and I’m finding that time and time again, that hurts more than all the fear and heartache in the world – knowing that this person holds their own issues in higher regard than yours but wraps them up in paper and presents them to you as a gift, and expects you to say thank you.

I have some beautiful, wonderful people in my life. I have the people that tell me that I’ve always got someone on my side, I have the ones that DO understand because I know they’ve walked that road before. I have people that respect my boundaries and, while we can commiserate together, they know that everyone has limits, including themselves. Right now, however, is one of those rare times when I feel that none of these people are around. They very well might be, but in one of those silly moments where I want to show them the same consideration they’ve shown me as a friend, I find myself very hesitant to message someone at 3am just to talk. I suppose this is somewhat of a self-dug hole where I find myself placing the needs of others before my own, but friendships are about give and take, not clinging to a drowning man and expecting him to take you back to shore.

Tonight, I am unwell. I have a sickness, a malaise of the mind and heart that is just as real as any other kind of injury or disease. Tonight I am going to crawl into bed, curl up close to manthing and do the same thing I would do for any cold or flu – sleep it off and hope I feel a little better tomorrow.