[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] 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

[Status?] My bed is my spirit animal

Today is one of those grim days where you just know staying in bed won’t fix what you have, but you linger there for a while longer anyway, just in case something magical happens.

I’m also testing out the new ‘status’ feature to see if it changes the style of posting at all. It could mean shorter journals on my bad days, but also actually publishing journals rather than just lying out feeling like shit anyway.

[Comic] A visual depiction of Brain Fog

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

 

38 - Brain fog

[Picture] Well, that’s a mouthful.

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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] The Sleep Study

So this afternoon I find myself in hospital again. Thankfully this time it’s far more simple and involves less emergency wards than last time. I’ve been asked to come in for a sleep study tonight as a last – ditch effort from my specialist to try and help me before we’re out of options. It’s a very long shot, but if I do this then at least we can say we’ve tried everything.

I was asked to arrive at 4:30pm and Manthing was kind enough to drop me off. When I arrived I was shown to my room and told that I would be seen by a doctor and a scientist tonight at about 10pm. Somewhat disgruntled that I had to come in so early,  but the room is nice. Still a hospital bed, but I have carpet and a painted wall and two big windows overlooking the rooftops of the hospital I’m in.

Later on tonight I will be hooked up to all sorts of bits and pieces and probably experience something close to an alien abduction while being told I have to sleep. I’m dubious but who knows. What I DO know is that I can’t even pick my nose in peace because there’s a camera in the roof of my room.

This should be an interesting night.

EDIT 1: Dinner has arrived. I haven’t been brave enough to look at it yet. I’m going to stay in my room where I don’t have to share the TV with a grandmother who looks very aggressive about her news. A girl with the same name as me has shown up. First thing she does is ask if they have wifi. Preach, sister.

EDIT 2: I have discovered the toilet paper here is unforgivable and the soap refuses to wash off your hands with a reasonable amount of effort. The girl with the same name isn’t staying. Just dropping off her mother. I am sad.

Dinner looks reasonable.  Yet to be eaten. I have been provided with supplies to make a passable cup of tea. For now, I am happy. 

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EDIT 3: These monsters haven’t left any sugar packets for my tea. I am displeased immensely. However, the dinner meal is actually decent. Surprisingly decent. Almost not hospital food decent. I am suspect but reasonably content.

EDIT 4: I found the sugar for my tea when the staff took away. It was hiding under the bread. I just lost a game of hide-and-seek to part of my meal. I also just noticed this.
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Serving suggestion for this caramel thing? ON A BLOODY SPOON YOU HOOLIGAN! WHAT THE HELL DON’T EAT IT WITH A FORK YOU TWIT.

EDIT 5: It’s now almost 7:30pm. My ache is coming back. I’m by far the youngest person in this sleep study ward and, aside from the technician, I’ll be the only one awake in 15 minutes. I also noticed that I have a bathroom right next to my room. Score!

EDIT 6: It’s now after 9:30pm. The night staff have come in and are doing their thing. My butt is numb and my legs are sore from this bed. I am also exhausted.

EDIT 7: I slept like complete balls but according to the technician, we got good data. Manthing was a legend and picked me up at 7 am and was awesome despite the horrible traffic. I’m back at home, just had a nice hit shower and washed out all the ‘caulking’ they use to hold the electrodes on my scalp. Image wet chalk paste mixed with glue and you’re pretty close. I now wait 3 weeks to get my results back and, now that this saga is finally over, I’m getting some ACTUAL sleep!

Catch you all later!