[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.

[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] 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.

[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.

[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] Tweaking the meds again

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

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

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

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

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

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

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

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

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

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