[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!

 

[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

 

[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

[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.

 

39 - Chronic Illness changes you

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.

[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 🙂

 

38 - Brain fog

[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.

image

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.