[Journal] “At least”

“At least it’s not cancer.”

Last night I was talking to a fellow spoonie with MS. We were lamenting over the shitty things we’ve heard or had said to us because of our chronic conditions. The short of it, is that people can be generally awful when you’re someone with a disability, and so many seem entitled to comment on issues they know nothing about. One of the points that keeps echoing in my mind is the use of two very simple words – “at least”.

At least it’s not cancer. At least you got out of bed. At least the sun is shining.

We’ve all heard it. We’ve all used it, for better or worse. But I want to talk to you about why using that phrase in a very particular context makes Miss Abigail pissed off.

Now, this is a fickle thing, you see. The concept of “at least” isn’t inherently bad in and of itself. Hell, it’s a downright useful turn of phrase. My issue is the application of those two words when they’re used specifically to downplay someone else’s experience, especially if it’s a negative one. Let’s use the other day as an example:

I had a terrible day. I got diagnosed with serious asthma, from symptoms I had chalked down to other ME/CFS or Fibro issues for years. I got told I was the sort of person that died because that shit was undiagnosed and untreated. I was pretty freaked out. On top of that, I got my Fluvax and Pneumovax to try and avoid the pesky in hospital thing. I had a shitty reaction, my arm swelled up like a flesh-balloon (now picture that!) and I was in seriously unfair amounts of pain as my immune system collectively lost it’s cookies and freaked the hell out.

I came home rather defeated. The response I got from my mother was “Well, at least you got your shots.” The response I got from a friend was “At least you got out of the house”.

Now, both of these are true. I DID get my shots, and I DID very much get out of the house. But it also completely undermines the fact that I now have a skin-coloured noodle attached to my side, I feel like I’ve been in a game of dodgeball with a porcupine covered in Siracha sauce and I just wanted to talk. Instead of feeling like I had been heard, or having someone commiserate with me that, yeah, that’s actually a pretty shitty time, I instead felt like the people I spoke to overlooked the entire experience I had to focus on a positive.

The thing is though, I had seen the positive. I had lived through the positive. In fact, it was the positive that had entirely lead me to where I am. And at this point in time, that positive didn’t weigh up against the overall shittiness I was experiencing. So stuff sucked. Hard.

I hadn’t lost sight of the fact that I was now immunised. That’s awesome! I like not ending up in hospital for weeks, being poked and prodded. I like not dying, as a rule.

This is key here, though. This is the ‘downplay’ I mentioned a few paragraphs up, and it’s the tip of the iceberg. Rather than trying to understand from my perspective that the sum of my day might have been pretty terrible, they isolated my entire experience and downplayed it into one single point.

You see the issue?

Now, we’ve come to accept socially that, if someone’s having a shitty time, we should try to cheer them up. It’s one of the better parts of this human experience and I don’t want to shit on anyone who is genuinely trying, but we also need to talk.

What happens when the person you’re talking to is suffering from a lifelong or chronic illness? What happens when that person’s entire existence is changed by something out of their control? We would think it abhorrent to say to a mother “Oh, at least you can make a new baby” after she’s just miscarried, because we understand the weight of the situation. We couldn’t tell a father of two that “at least you still have one kid” after his eldest committed suicide.

Having a chronic illness is different in a few ways to those examples mentioned above, but mostly due to the way that our struggles, issues and shitty days occur over the course of a lifetime, not one event (which is not to say that those events don’t impact one’s entire life. Perhaps it’s not the best example, but you get the idea). It can be difficult as an outsider to understand quite the impact a chronic illness or disability can have on someone’s life, and I can’t speak for anyone else, but I know that in my case it has completely changed who I am as a person, for better or worse.

Almost every spoonie I’ve ever met has a shared experience. We’ve all had someone ask us what’s wrong with us now, we’ve gotten a diagnosis and tried to explain it, we’ve been having a challenging day and had an outburst, and without fail, someone will inevitably respond with “oh, well, at least it isn’t cancer”, “at least you’re still alive” or something equally inane.

To preface this next part, I’d like to note that this is written not in the spirit of being critical of those that do have, or have had, cancer, but moreso people unaffected by illness using it as a go-to reference point for ‘suffering’.

Downplaying someone’s existence into “well at least it’s not this other disease” is pretty awful, as things go. Oftentimes, cancer (as a broad term) is more understood than the varied conditions spoonies deal with. It doesn’t change the fact that, sure, they don’t have disease X, but what they’re dealing with is clearly upsetting to them and you’re blowing it off when they’re looking for recognition of what they’re dealing with.

The whole idea of “at least” shows a complete lack of empathy for your fellow human and basically says “Okay, so you’re suffering, but in my mind there’s still a single good to some of this, so you’re practically fine.” It invalidates the shit we go through on a daily basis, whether that be judging looks, ongoing pain, massive stigma, inner battles with mental health, struggles to self care or live independently, or any other number of things spoonies face, because they’re not going through a specific set of circumstances.

It’s an experience that really makes you feel less than human

We’ve probably already either gone through, or are going through, the grieving process of dealing with our lot, and so responses like that are not only completely demoralising, but are pretty painful to deal with, because it means you’ve either got no idea what we’re dealing with or have completely separated the human from the illness.

So, how do we fix it?

Why not go to something like “tell me what you deal with, so I can understand”? It makes us feel validated. It allows us to express our own personal experiences, which often go unheard. It means that you see us, you hear us, and you want to understand us.

Something like “I see where you’re coming from, and that must be difficult” works well too,  because you’re remembering the person behind the condition. You’re acknowledging that, even if you didn’t personally go through what they’re dealing with, you can commiserate that it’s probably a shitty experience, and the validation can be a powerful thing for someone who is used to having to defend their existence.

But you know what? Even a “wow, that sucks” can be appropriate, because this response, and the other two mentioned all take a moment to recognise that there’s an experience beyond our own happening, even if we don’t understand it. Sometimes we’re busy. Sometimes we’re dealing with our own issues. Sometimes things just seem way over our own heads, and that’s okay. Simply acknowledging the other person’s feelings is A+ awesome.

Sometimes, all people want is to simply have a moment, express a feeling and know that they’re being heard, without someone trying to take away from that moment, or make things better. Sometimes, we get so pent up in trying to pretend we’re well and okay, that we can convince the people around us (and even ourselves) that we’re holding things together, but everyone has moments and days and weeks. It’s all about understanding that, this might not be YOUR way of experiencing the world, but it is to someone, and they’re allowed to grieve and feel angry and kick and scream and rant about things in their life as much as anyone else. At the end of the day, all people really want is to be heard when they talk, so just take a moment and listen, and we’ll all be better for it.

——————————————————————————————–

I’m sure my hiatus left people with questions. I’m sure some of you missed my comics and rants. I’m certain some of you want to know what happened.

But, at least I’m back, right? (snerk)

Due to personal circumstances, I took a long hiatus from According to Abigail. There were a lot of things going on in my life that required my full attention – things to process, relationships to work on and doctors to see. I felt the whole process of blogging while attending to my own needs would have been counter-productive and so I made the tough decision to take a break from it all and focus on what needed to be done, so I could come back eventually. And now here I am 🙂

I aim to bring you the same snarky journals, terrible comics and awful advice as ever, and also to be setting realisitic goals for myself so I don’t burn out again.

As always, painfully yours,

Abigail ❤

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[Journal] Hello world, this is me.

The last month has been rough. I picked up a chest infection at an event I attended 4 weeks ago thanks to some careless twat. Thought I got over it. Anibiotics the size of horse pills and the whole coughing up primordial slime shebang. I was on the end of it when I went out again, this time got a sinus bug on top, and it gave the chest infection the leg back up it needed. This time around, with the weather changes that have happened, I feel like the walking dead. I can’t remember being in a worse state this year, and it’s taken it’s toll.

Today I hit my breaking point. Today I was sick of being dishonest and constantly bullshitting everyone with how bad things have been. In a fit of god-knows-what, I made a post with a unfiltered pic of myself – straight out of bed – which I can’t share for privacy/anonymity reasons.

I feel that this may be relevant to people who are likewise suffering and need some solidarity in their fight. Today, I’m with you guys.

Today, this is Abi. This is the real Abi.

So often I am the Abi that laughs at life and herself to get her through the day. I am the woman that tells herself she is strong and genuinely tries to avoid talking about her problems so she keeps the friends she has and doesn’t become a burden. I am the Abi that will get up despite the pain and make or do something through gritted teeth just to tell myself that I’m not useless today. I am the version of me that does my best to listen to other people when they need a friend, setting my own needs aside. I am the one that downplays the effect my chronic sicknesses have on me with “I’m not the best” or “things are a bit poo” when I feel like I am dying. I am the one that goes to pains to not “look sick”, will dress up, wash my face and forego the mobility scooter and cane and wheelchair so I look like everyone else. I am the Abi that will stick it out to the eleventh hour while out of the house with friends, because I want to pretend everything is fine and just be *normal* again.

Today is a breaking point.

Today I am sick, and I have been literally my whole life. Imagine that. Think back as far as your memories go and try to imagine the pervasive feeling of pain somewhere in every single one of those precious childhood moments. Imagine them following you through to highschool and being terrified of being teased for using a cane, so you sucked it up and went without, and pushed your body further on your good days to make up for it. Imagine it as you try to find your first job, sitting like a knot in your throat, a whisper behind your ear. A dirty little secret. Because young people don’t get sick.

And just when you thought you knew the beast, it brought you to your knees. It broke you and you had nobody that understood the /scope/of agony you were dealing with, so you learned to keep quiet. First to friends. Then to family. Eventually to partners and doctors and specialists. Because young people don’t get sick. You were attention seeking. A drama queen. An attention whore. Desperate to simply find an echo of understanding in the world and the answer to the question “why?”

Why me? What did I do? Was there a reason I was chosen for this? Will I die with this pain?

IS THERE A REASON?!

But the answer is almost always silence. From family who buy your facade. From friends who don’t know how to accomodate. From partners who don’t know how to cope. From specialists who lack funding. From that little voice of self inside.

It’s always silence.

Today I am not being silent. This is me. This is that same Abi you all know. The one that laughs at fart jokes. The one that bends over backwards to help people and downplays it because she can’t handle praise. This is the Valkyrie. The gamer. The artist and lover and fighter. I am the Abi that cries in her room from uncontrolled pain. I am the Abi that is too ashamed to talk about her pain for fear of rejection. I am the Abi that has given up so many things she loves because of her health. I am the Abi that has lost friendships, lovers and opportunities because of something I can’t directly control. I am the Abi that goes to sleep with anxiety and wakes with the crushing reality of “this is what today is going to be like”. I am the Abi that has been torn up inside because I have had the very real choice of doing something I want and ending up in hospital, or staying home in my room and being safe due to the stresses going out puts on my body. I am the Abi that feels defective, lonely and useless when friends respond with “Oh, I heard you weren’t well so I figured I would leave you be” like there would be a time when I somehow was well again. And today I am not well, and I haven’t been for a very long time.

But if you’ve read this and understood just one sentence, one line, and have learned something, decided that you want to know the me without the smile, the 4am blogger, the swearing, hot mess, I might just be okay.

Today has been exhausting. Tomorrow is another day.

[Comic] A brief interlude

Things are still mighty quiet on my end, mostly due to work/health and the upcoming seasonal silliness. It’s kind of crazy. The last three weeks have been spent not dying (not quite literally) thanks to a nasty chest infection that won’t budge. So imagine my surprise with it all when I woke up this morning and felt even worse…

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Yeah, this is a gross one. Deal with it ❤

Keep being awesome,

Abi

[Journal] 10 things I wish able-bodied people WOULD assume about my health.

I’ve been keeping mostly to myself over the last few months to make health issues much more bearable. Lying in bed last night while waiting for my painkillers to kick in, something occured to me; people make a LOT of assumptions when you’re sick and most of them are awful. How many of you have heard the old nut of “But you don’t look sick!”?

So, if I had to deal with people assuming stuff about me, what would the best case scenario be? In a perfect world, what would I want them to me thinking?

1. “They’re young and have a disability parking permit. Their illness must be pretty serious.” 

I really wish this was the first thing that went through people’s heads rather than “fuck you, you’re faking and I need to let you know how disgruntled this makes me, even though it doesn’t affect me directly”. I’ve been accosted multiple times from both parents and elderly who should know better, and even had my car vandilised because I’m a twenty-something female with an invisible illness and everyone suddenly takes up the social justice sword the moment disabled parking is involved. If people were half as quick to assume there might be a reason you use the parking spaces as they are to condemn you for doing so, we wouldn’t have half the stigma against shit like this and I wouldn’t feel ashamed to need it on my really bad days.

2. “I can’t see any physical signs of an illness in them. I don’t doubt them in the slightest since invisible illnesses are a thing. In fact, they carry themselves incredibly well to pass as healthy.

No symptoms = not sick. I mean, come on. Everybody knows that. After all, there are clear and visible signs of Diabetes, cancer, Lupus, Fibromyalgia, mental health and immune disorders. 90% of the chronic pain kitties I know have gotten so good at ‘passing’ as healthy because it makes life easier. No questions, no judgemental stares and no people acting stupid trying to do what they think is the right thing without actually asking you.

3. “I haven’t heard from my chronically sick friend in a while. Rather than avoiding me, they must be really unwell or taking important time to themselves. I should send them a message and ask if they are okay.

Being sick is hard work. It drains you in ways you can’t even imagine until you’re living it, and it often leaves you with almost no energy for socialising or outings. Sometimes people take it personally and don’t have the experience to understand that it’s an incredibly complicated situation where nobody ultimately wins, rather than you expending energy to avoid them or cut off contact.

4. “They’ve cancelled our plans at the last minute AGAIN. I can’t imagine how frustrating it is for them to want to go out, but to have their body decide otherwise.”

This is a big one. If I had a dollar for every time I’ve had to can plans because I can’t move, it would make me more sick or I simply need to pace myself, I woukd be able to get my painkillers gold-plated. We WANT to be out there with you. We want the normalcy of going out on a whim or looking forward to plans. When we have to call it off, we don’t gain anything from it, trust me. Please remember the person behind the illness and that we have the same social needs as you.

5. “My friend has a chronic illness but the rest of our group of friends doesn’t know. It’s not my place to ‘out’ them since they may not want everyone to know, and there’s a lot of information I don’t have.

There have been many times in my life where ‘coming out’ about my illnesses was necessary, but also many where I have been more comfortable to simly slip under the radar and pass as a regular able-bodied person. The reasons for this vary, but it should always be my choice whether or not that status is disclosed, and there have been occasions where that choice has been taken away from me by well-intentioned people trying to simply do the right thing. I ended up feeling exposed and uncomfortable, having to explain things that were sensitive to me at the time to people that may not have been the most receptive to the information – all because I didn’t get the choice.

In more extreme situations, this can cost people jobs and future employment, friendship and relationships and ultimately end in excusion, bullying and other generally shitty scenarios.

6. “We’re going out with a friend who has mobility issues tonight. We should ask them how much they can move tonight, try to find a place close by for food and also try to keep pace with them when we walk so they feel a part of the group.

This is such a simple thing, but there have been so many times where it’s gone neglected. Not due to malice, but simply because, unless you have prior experience, most able-bodied people don’t even consider that it might be an issue. Going out with someone who has mobility issues DOES change the dynamic of an evening out, despite our best efforts. Let us dictate our mobility level, help us fit in by either finding places that are only a short distance nearby, or be willing to compromise, and please include them in the group. You would be genuinely surprised how much a little gesture like keeping pace with them means – suddenly we go from feeling like a killjoy and a burden, to feeling valued, included and able to participate in conversations.

7. “I know my friend is displaying signs of being tired and in pain. Rather than telling them what I think they’re feeling, I should ask them to describe it in their words so that they have the opportunity to tell me exactly how they feel.

This one has cropped up because I had an encounter the other day with my mother. She meant well, but when I stumbled out of my room, she remarked “you’re tired”. Now, living with ME/CFS, the only time I’m not tired is when I’m exhausted. She wasn’t wrong, but by the same token, I felt like not giving me the opportunity to tell her how I was feeling in my body, she was effectively writing off the way I felt. I know it wasn’t the intention, but there are so many times when people with invisible illnesses don’t have a voice and that we have to dumb down our experiences so that we’re not called whingers or attention seekers. If you want to know how we’re feeling, just ask. Don’t assume you know what we’re experiencing. Give us that voice.

8. “This person looks to have physical issues. Rather than me deciding what they’re capable of, I’m going to let them set their own limit. After all, they know their body best.

A lot of the time we’re at an impasse – stuck between asking for help and wanting to keep some of our independence. Losing the ability to do things on our own is part of us losing our sense of self, so to keep this short, let us dictate our capacity for each occasion rather than just assuming we can’t.

There is absolutely no harm in asking if we need help, but the problem arises when you assume that we can’t do it and take away the opportunity for us to be involved.

9. “That person is walking/looking/moving a little funny or using mobility gear. It makes them stand out. It doesn’t matter if this is normal or abnormal for them, I need to respect them as a person, understand they may be feeling alienated and treat them exactly the same as I would anyone else unless asked otherwise.”

Sometimes chronic illness can manifest in different ways. I can only really speak for myself here, but I hate using my mobility gear like my cane, scooter and wheelchair since it really makes me stand out like a sore thumb. I feel awkward, I feel a bit like a freak and I hate the looks people give me where you can simply tell they’re silently judging you.

I have no issue with kids looking at me since they’re blissfully unaware of these things and mostly innocent, but when mummy or grandpa put down their coffee to gawk open-mouthed as I roll past, I feel like keeping a small stash of rabbit poo in my pocket so I can flick it at them. A lot of the time we don’t have a choice in these things – it comes down to either staying at home while out of milk and sugar (which spells disaster for a good cup of tea) or going out while using our gear.

Just remember that, behind all of that stuff, behind the limp and the sling and the walker, scooter or chair, we are just like you. We have feelings and are just as aware of the looks as you would be if you farted in the cheese isle in the shopping centre.

10. “There’s something I don’t know about their illness. You know what? I should just ask them about it rather than making assumptions. If I’m their friend, it’s good for me to know about their issues in case they need help in the future.

I really want to emphasise this one – so long as you’re respectful of us as people, we don’t bite. We actually appreciate you taking the time to learn about the issues and conditions affecting us. Just don’t come up and as “yo, cripple, why the limp?”.

This list is by no means definitive, but instead a collection of thoughts from both myself and others on the matter. Do you have something you really want added to the list? Comment below and let me know!

 

[Comic + Journal] Unicorn 3/100

This is a bit of a cathartic, explanatory post in a way. If this blog were a uni class, I would have failed attendance months back. In my defence, I’m still alive and kicking and that has to count for something, right?

To explain, I made an executive decision a few months back to take a step away from the blog. I kept stressing about posts, content, comics and everything else while the rest of my life was utter chaos and I realised that I had lost the original idea of this blog in the process – it was a place for me to relax, share my mind when I wanted to share it and it was the freedom of that which made me share my thoughts and art and everything else so often.

I had to take things back to that point. Suffice to say that things on my end are still a complete and absolute mess, but they’re getting better. I should have an actual office built by the end of this weekend so the business can start making money again and I have a ‘mental health’ space. I’m still making little bits of progress on my jewellery skills and life is very slowly moving in the right direction. I have to be happy with that. Yell and scream at an elephant as much as you want, but he’s still going to do everything in his own time. By the time you find something big and scary enough to make him move faster, you’ve already expended more energy than he has and have therefore lost the game.

So, to keep thing simple and in the spirit of this comic entry, things WILL get better. In the mean time, I’ll get my wizard on and post only precisely when I intend to, and not a moment before. And hopefully before long, you’ll see a lot more of me.

The below drawing is my number 3 entry to my ‘100 unicorns project’ which is a little pet idea that aims to bring a little more fantasy to the world around us. This was sketched out at 4am when I couldn’t sleep. It’ll eventually be finished in the same style.

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It’s a little messy since it’s literally pen over pencil markings at this point, but use your imagination.

Horsey, horsey, burning bright,

who the hell set you alight?

❤ Abi

 

[Journal] Good things come!

While I’ve been quiet on my end, this little Miss has been working like a busy little bee 🙂

For the first time in forever, I’m doing the proverbial ‘following my dreams’ with the jewellery course. I’ve spent the last two weekends making things and honing my skills and this Sunday is my ‘final’ for this course where I major a major project using the skills I’ve learned, before going and picking my next course. I am exhausted, so many kinds of sore and can’t brain, so I’ll simply leave this picture of my work here until I have more than two brain cells to rub together ❤

The below two rings on the left are to be finished this weekend and are simply blu-tacked together right now for pics. Brass and sterling silver, all hand cut and textured. The ring on the right is hammered sterling silver with a seamless solder (fuckyeah!) and the pendant in the middle is a hand cut and polished brass pendant.

I made a thing.jpg

Hopefully after this weekend I’ll have more shinies to show off! And if I’m not like… dead tomorrow, I’ll finally have time to catch up on all the blog posts I’m missing. Looking at you, Tony!

❤ Abi

 

[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] Disabiliherpes?

So today I’m coining a word.

Disabiliherpes – the instantly contagious germs someone with a disability has, transferable by hugging, shaking hands, looking at, talking to or acknowledging said person. Any kind of contact at all will result in a lifelong condition characterised by being an obnoxious twat.

Obviously, this is a little tongue-in-cheek, but if you can’t have a giggle…

Today wasn’t actually that bad. I went out, I did a social thing and I bought some girly stuff. Made some observations. Now I’m home, not moving a thing and eating good food 🙂

This is just a quickie to get me back into the swing of things. Between now and my last entry, mental health and physical issues have caused me to more or less be stuck in bed or away from the PC. Promising more regular updates and comics soon, as well as some really awesome news!

❤ 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

 

[Announcement] Three years, baby!

So, today I got a wonderful announcement. According to Abigal has been around for a full three years today!

We’ve been through ups and downs, moved house too many times, got sick, got better (kind of) and I have over 40 comics that I can proudly call my own, and intend on adding many, many more.

To mark this occasion, I’ve added a new feature to the blog. Right up top under the title on the right. Have you always wanted to ask something about Fibro or CFS? Have you been curious as to what my favourite colour is (Hint: it’s purple!), or do you have an idea for a comic or an article you want to read? Now you have a straightforward way to let me know! I’ve left the form as minimal as possible and you’re welcome to use a pseudonym for anonymity. What this means is that, my dear reader, I want to hear from you.

I want to hear what you like about the blog, what you love and what you hate. If you want to share your experience being a chronic kitty, I want to see it, and may feature it on the blog. At this three year mark, what I really want to do is to involve the greater community in my blog here and bring you the things about life in a borked body that you want to hear.

It’s been a fantastic three years with you, each and every one of my 140+ followers, and I find myself humbled by the fact that there are more than three people that are interested in what I have to say 😉 I’ll leave it here before I get too sappy, but thank you to each and every one of you who has supported me with this blog over the years. The repercussions of that have been far-reaching and amazing at some of the worst and best moments I’ve shared with you, and I hope that I can continue doing whatever it is that brought you to According to Abigail for many years to come.

❤ Miss