[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.

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[Journal] A catch up (and other things)

As I’m starting this post, it’s 2:11am and I’m lying in bed, typing this on my phone with manthing halfway draped across my back. Have you ever been so tired you couldn’t sleep? I honestly have no idea what my body is doing. I apologise for any incoherence in the following post. I seem to have spent most of today running on two and a half brain cells and I’m struggling to make sense of autocorrect on my phone.

Thank god Christmas and New Year is gone for another few hundred days. I managed to survive it all by the seat of my pants and a lot of coffee. Christmas day was spent visiting family (manthing’s and then mine) though we still need to see my family up north. Time seems to work strangely around celebrations. Boxing day was spent hiding at home. NYE was at my adoptive dad’s place and was very interesting. I don’t have the brain to elaborate right now, but suffice to say it was food for a lot of thought.

The last few weeks have been a bit of a blur between thr seasonal madness and my bi – weekly Chiro appointments. This means that I’ve been in a fair bit of pain and spent the last few days in a nasty pain flare. I’ve tried to do my usual socialising,  but I won’t lie – it’s left me terribly worn out. I’m back to feeling like that blanket that’s been worn so much it’s fraying at the edges.

Right now I’m having trouble focusing on my writing thanks to stabbing back pain. I’m going to take a wild guess and assume I’ve managed to aggravate it today. Today was helping with fixing a shed, by the way. The problem is that all my pain seems to be linked. I’m getting the headaches and pelvic pain and then costo pain in the chest and aches in my legs. All because my back is being a twat.

I feel a little like a tangled puppet. With all of this going on, I’ve also found it hard to be motivated. I really do want to try a 365 drawing challenge. Or at least a creative challenge where I make something each day. Yesterday I helped make a shed a little tidier. Today (technically) I wrote this blog and will be helping with a Pathfinder game later in the day. The day before I made a squid beanie. The day before that… does making carbon dioxide count? If not, I made the house a little messier. In all seriousness,  I really do want to do this. If you have a suggestion for a drawing, or another creative challenge leave it in the comments. I think it would be awesome to document the process so, at the end of a long week, I can look back and say “I’m not quite so useless after all”. Without the implied self – depreciation,  of course. It’s just a little sense of achievement I can look forward to.

My problem tonight is that I’m exhausted but my body won’t stop and my anxiety is playing up because of the physical stress. I guess this journal had really been more of a journal than a lot of my other entries in that it’s a genuine stream of thought. On that note, I have a few articles I’d like to write up and share.

For now, I really need to pee so I’m going to wrap this blog entry up (first one for the year. How about that?), do my thing and then maybe play some Pokemon until I get comfy.

Be good ❤

[Journal] Something something tired

Someone needs to make a TV chanel for people with ME/CFS. 20 hours of nothing but the host sleeping, and occasionally rolling over to fart.

Back in bed today after sleeping for almost 14 hours yesterday. Seems the cfs fairy came and took a dump under my pillow at some point this weekend. Strangely sensitive nerve pain, costocontritis is playing up and I’m fairly certain my body is trying to invite the commies to the fun house. I love that euphemism,  seriously. Go look it up. Either way, I’m accepting donations of heat packs, chocolate and lamentations.

Positivity

Today is one of those days where I’ve been in constant pain for as many days as I can recall now. Moreso the last week as my body has decided to go full retard. I’ve averaged about two hour’s solid sleep a night, and the rest of the time is spent tossing and turning and desperately wishing the ow away. I’ve tried to avoid painkillers as best as I can and only take them when utterly necessary because my regular GP is busy as shit lately and the others I’ve had to see have been trying to cut back my codeine prescriptions. Because, you know, I’m not in agony or anything. It’s cool guys. I’ve totally got this.

On days like today, it’s incredibly hard for me to remain positive. I’m worn down like a blanket that’s been frayed at the edges. I’ve done everything I can for the pain and nothing has helped. Baths, bed, warmth, more clothing, pressure, exercise and movement, distractions, painkillers and even a cider has done nothing to give me any form of relief. I’m presently working through a University Pain Course which focuses on removing the ‘negative’ or unhelpful thoughts associated with your illnesses from your mind through hard work on your end. However, my problem isn’t that I’m dealing with negative thoughts today. I’m depressed and I feel fucking miserable because I’m in PAIN. Not because I’m worried I’m going to keel over and die. Not because I’m worried manthing is going to leave me. Not because I’m a negative Nancy or any other bullshit. I’m sore and I’m run down and I’m exhausted emotionally, physically and mentally and there’s fuck all I can do. You know how I know this? Because I’ve already tried everything I’m either physically capable of or know how to do to fix my problem.

I feel physically ill from the lack of sleep. I can’t finish my dinner. I can barely stay awake. I can’t sleep. Games aren’t keeping my attention. I’m too upset to talk to people. I just want to cry, but it hurts to do so anyway. I want to get angry to try and break this mood, but my head is pounding just thinking of it. I’m sweating profusely because of the pain, yet my feet are freezing under two layers of socks and track pants and are making my legs ache.

Tonight is a bad night. Tonight is what they never tell you when they explain what you’ll face with FIbro and CFS.

This little pig went to market…

OH DEAR GOD THE DAY IS HERE!!!

Seriously. I leave for my event in just under 5 hours time. I have to pack the car, sort out the shopping, do a last run-through of my inventory, make sure i pack the costumes and enough clothing for three days, do a panic check, make sure I have all my medication (and spares), double check the house and then wait for the housemate to get home. He’ll be following us and then we leave the house sitter with the budgies and hope they don’t maul him to death with cuteness in the mean time. They’re vicious little things. Nobody was saved.

Gringa, I promise I will TRY to get enough sleep this weekend, but if it’s anything like last year, we’ll still be awake because my ginger friend decided he needed to parade about the cabin in nothing but tighty-whities (nasty undies) that were grey from wear. God, I STILL have the scars from that. On the plus side, Manthing, my housemate (who shall henceforth be known as Candy. Yes, he’s a male) and I should have a relatively quiet night tonight and tomorrow is an easy setup from 10 since it’s only a half day event. Ahhhh.

If I can, I’ll try to get some blogging done each night. Just a bit of a recap of the day. From memory, however, the net there is so may kinds of awful, so I may need to either have it saved as a draft and play with it more when I get back home, or just draw lots of comics. Maybe both. I guess it depends on how busy I am. Heck, if you’re all REAL good, I might even take a few pictures for you all 🙂

Anyway, I best be off. My painkillers have kicked in (yeah, it’s one of THOSE days) and no rest for the wicked here. You all have fun and I’ll see you on the other side of the weekend!

 

Crunch time

Note to self: You have a doctor’s appointment at 2:45pm today.

So, we’re the day before the day we leave before the day of the first day of the big event. Make sense of that.

I’m finally getting over the flu, though I’m still Queen Shit for Brains. I’ve worked like a madwoman through the last few days to produce beanies, collars, cuffs, jewellery, bits and piece and all sorts of crap, and I’m still not done. I still have so much work to do that it isn’t funny, and half my equipment is having major screw-ups (my brain included) so I’m taking a minute out of the chaos to blog about it. As you do.

Collars

Here’s a picture of some of the shinies I’ve bee working on. Yup. Decorative collars. Not the kinky kind. I don’t make those for this event. It tends to freak too many people out,  but I do make them, yes. I have  seriously not had enough sleep to deal with today.

 

How to lose a friend in 10 days or “Fibro has fucked everything”

I fucking hate being sick. I don’t have words strong enough to describe the level of loathing, anger and sadness associated with how badly Fibro and all it’s friends have fucked up my life. I really do try to keep my emotions in check when I post blogs on here. I do try to carefully think posts through and make sure I don’t say anything to upset anyone, but tonight I’m exhausted. I’m sick with a nasty cold that makes sleeping almost impossible. I have the rest of my body going utterly batshit. I have to work and try and get SOMETHING happening for my big markets in 10 days time.

This week has been a difficult one in terms of my relationships with people. I’d say I apologise in advance for anyone reading this, but I have to retract that statement. I can’t apologise right now, not when I feel like this right now.

This has been a very testing week. On Friday I went to the Easter Show. As some of you may know, due to my illness, I don’t get out of the house much at all. As it was, everything tried to make sure I didn’t get there in the first place. I had a massive pain flare the night before and didn’t sleep. On our way there, I had a truck kick up a rock and try to shatter my windscreen. I had all sorts of shit go on that ended up in me having to face my own fears and use a wheelchair for the day. I am NOT a wheelchair person. Manthing and I had a tense relationship that day because he wasn’t used to pushing and I didn’t want to be in it. See: We butted heads. A lot. I had friends who weren’t used to dealing with me being in a wheelchair, and we were all slowed down by my snail’s pace. We had to make exceptions. Go different ways. Do things differently. We got rained out on the day, missed half the things we wanted to see, had arguments and, despite all that, we still managed to have a mostly wonderful time. I spent the whole trip home thanking everyone over and over again for putting up with me. How grateful I was that they put up with me. I felt like such a burden the whole time and they assured me it wasn’t the case, but it doesn’t change how I felt.

Skip forward to Sunday night. I come down with a filthy fever. I get body aches that hit a 9.5 on my pain scale. I’m on Endone, rocking back and forth in a steaming hot bath and sobbing to myself because I just want the pain to stop. I’ve come down with a nasty cold as a result of having a very big day out on Friday and pushing myself past my spoons, and then getting caught in the rain while trying to watch the evening show and the fireworks. My throat is raw, my head is pounding and I’d ask Manthing to take me to ER only the idea of moving from where I am makes me nauseous with more pain. I eventually get to bed (being toweled off and dressed by my partner) and lie there sleepless for hours, tossing and turning through fever and waves of agony.

In the midst of it all, I try to find a distraction and play with my Pokemon. I try to talk to people on facebook. The whole thing ends up in me feeling like a fucking arsehole because a friend of mine is annoyed that I didn’t arrange a time to meet up with her and that I went to the Easter Show. The problem is, the last time I remember speaking to her, she asked for some time to grieve over a beloved pet that had passed. I had offered to come around the ay after an event I had missed (doubly due to trying to make some money at a market and then being too ill to do anything other than go home and sleep for three days) but she had suggested we arrange another time. I interpreted this as something along the lines that she would let me know when she was ready to deal with people again. I wasn’t about to bother her the day after going “Heyyy! Let’s hang out!” The last time I had a pet die, I cried for three days straight and hit depression for another week after that. Everyone deals with this stuff differently so I let things be.

I also had the Easter Show trip planned for a month and a half. This in itself isn’t a huge deal.

The problem lies in the last two times I’ve had people do something similar. I had arranged beforehand to go out with mates X and Y. Z comes along in the afternoon and says “Hey, let’s hang out.” I respond with “Hey, Z. I can’t. I’ve got other plans tonight, and we don’t have room in the car or else I’d invite you and your missus along. We can hang out on Sunday, if you’re cool with it, and if I’m feeling okay.” Z ends up telling his missus that I lied to him about shit to get out of hanging out with him, so of course they both lose their shit at me properly when I post a single picture on Facebook of me having fun. Again, this was one time in about 3 months that I had been well enough to get out of the house and “hang out” with people. Gogo, fucking drama and Z being irate when I explain to him where the wires got crossed. He never passes this on to his missues. I’m left feeling like a jerk for going out and enjoying myself.

The time before that, someone I deeply cared about threw my health back at me like it was THEIR problem. My not being able to go out was damaging them somehow. My pain and suffering were becoming their problem. Right now, I’m probably overreacting to it all and being stupid and emotional, but I really feel two things right now:

I feel guilty. It was the “Hey, X didn’t want me to tell you this, but I thought you should know” equivalent that did it. That I didn’t warrant being told upfront that something I had said or done had upset someone, and that despite not having that person directly approach me about it, I should know anyway. I can’t talk to them. I feel like, if I did, I’d be some kind of horrible bitch. Like I was looking for a fight or something rather than just trying to resolve an issue I seem to have inadvertently caused. I feel like shit. Like a complete fuck. I did nothing, and I feel like the lowest kind of worm for upsetting a friend.

On the other hand, I feel really angry. I feel like I’ve been pinned with the blame for something I haven’t done. Not deliberately, and if it was accidental, then it shouldn’t have been thrown at me the way it was. I tried to do the right thing by everyone. God fucking forbid I should have plans of my own once in a blue moon. My Odin’s hairy left nut crush me for going out and trying to have a normal social experience for once. I feel like I’ve been backed into a corner and I’m being guilt tripped for the one time I manage to get out of the house and do something fun. Christ knows I have trouble. I missed my Dad’s birthday party, I missed my best friend’s baby naming and the birth of her child, I couldn’t see my mother on her birthday (though that may be a blessing in disguise) and there have been countless other occasions where I have wanted to go out and do something with every fiber in my being, but have been restricted to lying in bed and fighting off the crushing depression at being house-bound.

That’s another thing I barely mention. I try to get on with life and not look to closely, but think about it. You go from being a fairy social 18-year-old with a boyfriend, a career ahead of you, you’re looking at University and you’re utterly kicking arse in your favourite sports team to become a bitter 24-year old that walks with a limp, can’t leave the house without help because her memory is fucked and she’ll forget where she is and where she parked the car, has to borrow her disabled grandmother’s wheelchair to get about because she can’t afford her own and has had to pull her partner out of work to look after her disabled arse. You tell me just what kind of future you’re looking at when faced with those circumstances and you tell me exactly how chipper and social you’re feeling then. The times I do see people, they’re over here in my house. And you know what? Most of the time they come here to see Manthing, or end up spending most of their time with him because I need to go to bed. I don’t get random visitors (and can’t have them!) because on the rare occasion when I am pain-free enough to get shit done or sleep, I need to not be interrupted. Hell, you know what? I’ll say it. Sometimes I DON’T feel like socialising. I don’t feel like seeing people and talking because I’m angry and hurt and exhausted and sick of life’s shit and the fucking spectacularly awful hand I’ve been given.

Even if I get one of those very rare and fleeting moments when I’m not in horrible pain and off my face on painkillers, sometimes it’s all too much for me and I get caught up in my own depression. “What if I say something stupid?” “What if they’re angry at me for not going to X?” “What if…” It’s a contstant battle I face, especially with the advent of the memory issues I’m having. I constantly fret about saying something fucking stupid, or something I shouldn’t or, hell, I loathe the idea of having to answer the “How are you?” question. Nobody wants to hear about how I’ve spend the last three days curled up in the fetal position and cursing the neighbors children screaming with every language I know. Nobody gives a shit about how I was out of a script and had to wait 4 hours and the surgery to get a new one without any form of pain relief. Nobody believes me when I tell them that I had a nervous breakdown at the shopping centre because I forgot where I parked my car and thought someone had stolen it. I’m left feeling like nobody ever really wants to hear any of the shit in my life. It’s not great. It’s not “Oh, I got to go out with the girls for coffee today!” or something like “Yeah, landed this awesome contract today!”.

 

It’s reached the point where the pain has become such a massive part of my life, this filthy, consuming invader, that there isn’t one part of my life that it hasn’t touched. When I tell you about these things, I don’t want your sympathy. I’m not out looking for attention. I’m telling things the way they are. The same way you’d tell me about how you went down to the shops I’ll tell you about how I had to suck it up and drive to the doctors today to get my referral to the breast cancer clinic. They still have no fucking idea what’s going on with my right breast lactating and being sent to any clinic with the word ‘cancer’ in it’s name is scary enough, but straight after all these heart issues, I just feel like I’m on one giant asshole roller coaster. I don’t want a pat on the shoulder and I don’t need placating. I want you to understand what it’s like. I want a hug when I can stand it and I want you to forgive me my fuckups and realise that there’s more going on than what you can see on the surface. There is SO much I don’t tell you, my friends, because I don’t want to cause worry. Because I see you have enough going on in your own lives without needing to hear my own issues. Have you ever been told that you’re too much work as a friend or as a partner? Have you ever had people turn on you for something you have no control over? Have you ever been blamed for something beyond your reach? Then you should have an idea why I keep to myself. I have lost more friends than I have fingers since I’ve become sick, all because they jump to conclusions, assumptions and petty bullshit rather than actually finding out what the hell is going on in my life.

If I didn’t want to see you or hang out with you, I’d tell you to your face. Give me credit enough for that, at least. If I didn’t want to talk to you, I wouldn’t. I don’t make excuses. I genuinely can’t do things. If I didn’t want to be your friend, then we wouldn’t have ever started.

 

An ode to sucking

I’m sorry. I can’t come out to play. I have the dumb and ow today.

My bits all hurt, my brain’s not there, I just tried to glue my hair.

I fell over my feet and tripped on the rug, I need my meds and a hug.

I’m going to crawl right back to bed where dreams of spoons float round my head.

I can’t come out and play today. I’m having another Fibro day.

A long day’s night

Good lord I am tired. In fact, if there’s something beyond the feeling of tired, then I am that. I am utterly exhaustipated (n): – too tired to give a shit.

Yesterday took it out of me more than I thought. I admit, I was really stupid for taking that market on like I did, but there was a lot of good that came of it all. I made a slight profit (which means I covered petrol and stall fees. This is very good!) by maybe $10, but baby steps. I got to use my new marquee. I got to see old faces and I got to dress manthing up while he fell asleep. The drive home in the rain was crazy and there were too many accidents. I ended up just falling into bed once I saw my friend/stall minion for the day off home.

Had to get the car in for a service today and I haven’t been able to brain since. Woke up at 8:30am, groan, drool, yawn, etc. Drove in, manthing drove me home. I had intended to get about and do stuff, but body went “No, we’re sleeping NOW” and I passed out until 1:30pm. Woke up, yelled at lazy ass hat housemate who didn’t go to work because of excuses (don’t get me started on that bullshit) and had to get my stuff together to feed the two new baby birds in the house. More stuff to do. Can’t brain. My head feels like it’s made out of wet concrete. Massive ow flare, went to get it massaged out (my little treat on a blue moon) and it’s only 7:41pm and I am ready to pass out on the keyboard. I’m in pain, I’m shit-for-brains, I’m irritable and I am so, so, so exhausted. The kind of tired to the point where my hands aren’t coordinating and I can spend a good thirty seconds looking at a digital clock and still not know what the time is. I have to retype every other word at this point, but I haven’t had dinner and manthing won’t let me go to bed on an empty stomach (I love him to bits) so I need to wait another 40 for the oven to do the thing where the food is cooked.

At this point, I’d have a bath, but I’m not even certain I could get in or out wihtout help, and might actually fall asleep in it. That would be bad. Also, thank god for spellcheck or half this would be entirely unreadable.

I’m also really, really not looking forward to tomorrow. It’s my biological mother’s birthday. I very rarely talk about family members on here, but we have a tenacious history at best. I won’t go into detail, but suffice to say there’s about 10 years of child abuse and 18 years of a few other kinds that she’s very much tied to (and could have prevented) but didn’t. I’ve gone my own ways. I can’t forgive her for what she did, or failed to do as the case may be, but I keep contact with her at a comfortable distance. She’s not at a stage with her own mental health where she can accept any of it, so there’s no point in beating my head against a brick wall. The best thing I could have done for our relationship was move out of home, and get my own life on track, and so far it’s worked pretty well. I do my own thing, she does her thing and tells me about it every other day. I keep her updated on my health when I can, she frets and frets and offers silly suggestions but it’ all her way of trying to show she cares.

Point is, my sister has decided she’s going to come back and be family again (after her stint as “I’m an eighteen year old, you can’t tell me what to do!”) and now that I’m living in a decent house, she’s decided that we should do dinner for mum at mine. I appreciate that she wants to do it here so I can be comfortable and don’t have to travel, but when someone says dinner, I think 6-7pm. Apparently that’s not going to happen and I need to expect a full house at 8:30-9pm, and I feel really old in saying this, but those few hours make a hell of a difference. Especially with how I’m feeling today. I’m praying to Odin’s hairy left testicle that I feel better by tomorrow because I sure as hell don’t have the strength to deal with this shit right now.

Anyway, I’m going to not think about it too much and see if I cant just lie down for a bit. Maybe grab one of those smoothie breafast things for dinner and just crash out. I am so tapping out of today.