[Journal] Chronic Illness and the feeling of being left behind

So often we’re forced to use words like “I can’t” or “not today” when talking to people about social invitations or events outside our own house. Tonight is one such time for me, as manthing and I had planned to go into the city together to meet up with some friends. I was trying to be cautiously optimistic about it all, but as the day progressed, I realised that going out tonight wasn’t an option. Rather than keep him home through no fault of his own, Manthing decided to go without me.

I feel pretty awful – not just physically, but emotionally. I feel like I’ve been left behind and let down and forgotten about. Not by him, though. I feel like my own body has decided that I’m not allowed to go out, have fun and have a normal social life, and there are very few things harder than trying to battle against yourself. You can’t just hop up and jump into a new body when this one isn’t working properly, and it’s incredibly easy to take that feeling of being abandoned and turn that into self-pity, and eventually into depression.

So what do you do? You’re stuck at home, everyone else is out having a fantastic time, and all you have is pain and Netflix to keep you company. I’m struggling tonight to not fall into the pity party pit- and it can be bloody hard – but here’s some thing that might make it a little easier:

  1. Look after yourself.
    In the immortal words of Donna from Parks and Rec, “Treat ‘yo self” . Do something good for you. If that means eating a block of chocolate while in your pajamas, watching reruns of your favourite show, do it. This is about you making you feel good.

    But you know what? Sometimes you just can’t get past feeling shitty and miserable, and that’s okay. You do NOT have to be Superman or Wonderwoman. I give you complete and total permission to cry about how unfair it is, how much it all fucking sucks and how much you hate your body. Because we all have those moments, and sometimes we need an emotional release from feeling cooped up as much as we do a physical one. Hug that pillow, scream into that blanket or (snerk!) write that blog post! Let the world know you’re unhappy and that you’re over it, and make sure you give yourself a hug afterwards. You are loved.

  1. Talk to someone.
    If you’re stuck at home, there’s nothing more alienating than sitting in a quiet room by yourself. The next best thing thanks to the internet is to talk to people online. Go bug someone on Skype, prod a friend on Facebook or talk to a mate on KIK. If you’re after new friends, go and find a chat room that matches your interest, hit up the roleplaying boards on Gaia Online, or hell, go and check out some of the topics at r/CasualConversation .

    The worst thing you can do is to isolate yourself. At the very least, you’ll be catching up with someone you know. At best, you make a new friend.Sometimes it can be a little hard to talk to people when you’re in a crappy mood, but try and persevere. The best part of being online is that you can be entirely anonymous – if you don’t feel like sharing your present situation, you don’t have to. This may not be helpful for everyone, but I know it’s helped me on a few nights where I’d much rather just say I’m fine, than explaining how crap I feel.

  2. Plan for the future.
    This one is hard, even for me. You have to remember that, just because you can’t go out this time, it doesn’t mean “never”. Even though it feels pretty damn close, you’re disheartened and miserable, there’s always tomorrow. And if tomorrow is still shit, there’s next week. If next week is crap, the week after. Rinse repeat. It’s so very easy to go “I give up”, throw your hands up and become an angry pain sausage and sit in the corner, but that won’t fix the situation. What you’ll eventually find is that your mood right now is shit, and rightly so, but it will pass. You may wake up tomorrow feeling a little better for a sleep, and want to try and catch up with that friend or see that movie. You also may not, but that’s where we try again on the next tomorrow.

    Being a chronic kitty often means we feel left out and DO get left out of social events because we simply can’t keep up with others, or because it’s not an accessible thing, or because we simply fall out of social groups because we don’t have the energy for gossip. It can hurt, but it’s important that we do things within our means, too, and this means planning that lunch date, or going to see that movie or going over a friends, but do it within your capacity. Only you know what you are capable of, and you are awesome.

I don’t know if I feel better by writing this right now, but I know I’ll feel better tomorrow. I’m going to spend tonight playing some video games and watching a series and, if I feel particularly sassy, I’m going to get some ice cream. But most importantly, I’m going to give myself the time I need to feel better and I’m going to look after my body while doing it. As crap as I feel now, I know tomorrow would have been ten times worse than today if I had pushed myself to go out tonight. At least this way I know I’m taking the time to treat my body right, and when Manthing gets home, he’ll have lots of new stories to tell me about ๐Ÿ™‚

I would love to know what other people do for ‘self care’ on nights like this. What’s your “go to” pick-me-up? Either leave a comment below or use the new “got a question?” page to leave me an anonymous answer!

โค Abigail

 

[Journal] Friends and chronic illness

To start, I’d like to clarify that this isn’t me seeking attention or looking for sympathy. This is me trying to make sense out of a series of situations I’ve been in recently and to work out where I stand in it all. This also isn’t directed at any one specific person, but is a collection of memories from past and present friendships, written at a very emotional point tonight.

I’ve written in the past about how maintaining friendships is a challenge when one is chronically ill. Regardless of what you’ve been afflicted with, it makes an impact on your life that few people can understand. I’ve written about how a careless word here or there can really bring someone’s world down around them. I’ve also written about how lonely it can get when one is cooped up at home all day, every day.

This post is more than that. To me, this is an attempt to make sense of everything I’ve been through with past and present friends to date.

Right now it’s almost 11pm. I’m sitting in bed with my laptop and I’ve just had a good 20 minute sob to Manthing about how unfair it is that people just don’t ‘get it’. I’ve had 7 days of above-average pain. It’s worn me down in places I’m not usually aware of. I’m beyond exhausted. Because of how run down I am, I’m in more pain than the last few days, anyway. I won’t lie. This is hard. This is really, really hard.

I used to tell people that I was very lucky because my support network for hard times like these were a select few friends I could call upon, whenever. Some online, some a few suburbs away. In fact, before myself and Manthing were a ‘thing’, there was one night when I had hit my first 9 on the pain scale. It was 3am and he had work the next day, but I could still ring him up and he talked to me on the phone for about an hour until my painkillers had kicked in and I could sleep.

In the last few years, this has changed. I find myself here on a night like tonight with almost no support network whatsoever. People have gone their own ways, life has changed, things have come up. One friend decided it was okay to treat his friends like shit. Another got a girlfriend and suddenly didn’t have time anymore. Another couldn’t understand that being sick wasn’t like being in bed with the flu. Another still decided to tell me that my illness was THEIR problem. One by one, all the people I felt I could approach at that 3am mark drifted away and left me here on my own little island of Fuck, where I find myself tonight.

I guess this entry is a bit of lamenting the fact that I feel so alone right now. Once upon a time, if a friend caught wind that I wasn’t doing so well, I’d have an SMS within minutes. I’d get a check-in every now and then. “Just thinking of you. Hope you’re okay.” I’d get a message online or they’d even just show up out of the blue. Once, I had someone even deliver a care package because I had spent the week in bed. You know who you are, and you should know I genuinely cried, even through I didn’t say anything out of pride when it happened. It’s the little things that turn a fucking awful situation into a not so bad one. It’s knowing that someone has your back that can sometimes give you the strength to get through the day. Right now, thanks to the pain and the depression, I feel like I could vanish for a month at a time and nobody would even know I was gone.

For what it’s worth, I always did what I could. I like to see myself as ‘that friend’. The one that would always check in. If you were having a shitty day, I’d send you an awful joke or a picture. If you were stuck in bed, I made digital get well cards. Driving an hour out of my way to help a friend out even though I wasn’t in the best state wasn’t something I thought twice about. I just did it because they needed me there. I’m the one that left the messages. “If you ever need an ear or someone to talk to, I’m here.” Maybe I wasn’t that person to everyone. Maybe I wasn’t that person to anyone. But god help me, I tried. I genuinely tried to be the best friend I could be.

As I got more and more sick, sometimes I’d miss a beat. Sometimes there’d be a week where I was stuck in bed and didn’t know you were upset. I tried to catch up and still check in. I really did. With more than a few people, I tried to organise times when I was well enough to meet up, but they were always busy. Things don’t often work the way we plan, but that doesn’t mean I didn’t genuinely put an effort in.

Right now, I feel empty. I feel like, for everything that I’ve been through, I only have Manthing with me. I feel so alienated from other people that it physically aches in my chest. People I used to be really close to. I think at one point I had half a dozen people and I felt so very special because of it. I think about all the 3am nights we used to spend out getting slushies and I cry. Things aren’t that way anymore. I think about the skype calls we had where we’d see who could burp the loudest and it hurts.ย  You got a girlfriend and I vanished off the face of the earth to you.ย  I remember the times we used to make running jokes and confuse everyone else in the room. You don’t even answer my messages now.

I think about how, once, I felt like I had people who were involved in my life enough that, when I needed someone to vent to, they understood I wasn’t looking for attention. I just needed someone that understood what I was going through. I know I’m not the easiest person to be friends with. I really do understand that. I’m a lot of work. I ask things of people, I can’t always go out or catch up and sometimes I hurt people because of it. But seriously, do you think that it hurts any less for me? I’m the token cripple friends. I’m the one people make allowances for. I’m the one that forgets and needs assistance during games. I’m the one that makes the group walk slower. But I’m still human.

Yes, I do still have friends, and people I talk to occasionally, but it’s not easy. Imagine how it feels to not be able to talk about some things because they just don’t understand – or, in same cases, just don’t give a shit. Imagine someone walking away mid-conversation when you’re trying to explain why you were so sick yesterday. I’m the one that has to make the allowances for other people. I have to watch my words so other people aren’t accidentally offended because they can’t deal with their own stresses. I have to curb my own humour because, god forbid, someone might be offended by a joke I make about myself. I have to constantly remind people that, for me to go out somewhere requires some planning. I can’t just get an invite half an hour before X starts. I often don’t have money with over $200 of medication per month. I am a difficult person to be friends with, but I’d like to think that I’m no less worthy of friendship for it.

I’m genuinely afraid of making new friends, even thought I’ve tried. Try to imagine what it feels like to be immediately judged as being ‘too hard’ or ‘too much work’ the moment you mention chronic illness. On top of dealing with all my other physical issues, I then have this exhausting charade of social interaction, and it wears me out.

I won’t lie. I have very little patience for those that can’t accept me as I am, but I’m desperate. I want friends and I’ll take what I can get.

I do still have people that genuinely give a shit about me, and I them. People that don’t care if I’m in my pijamas when they show up. People that are happy to change plans to a night in when I can’t move. People that don’t hate me for something I have no control over. I hope that, one day, they read this part and understand. But those are far and few between, and with some, we barely even talk anymore.

I don’t even know if I’ve made much sense with this post. Manthing actually pushed me to blog about it and, in it’s own way, it’s been a bit cathartic. That little voice of anxiety in my head warns me that I might offend or upset a past or present friend reading this, but then the little logical Abi in the front of my head says “Let them be.” I guess if someone’s offended by this, it’s because they feel that there’s an ounce of truth in my writing. Let them fix it. If someone feels a prickle with one of the things I wrote, it’ll be because they relate to something in there. It’s never my intention to offend with these things, but people are stupid. If there’s an issue, do something about it.

After a solid half hour of writing, I’m thoroughly exhausted and no less miserable, but I’ll leave it here for tonight.

[Journal] That little blue pill

Today saw another visit to the specialist. Aside from consistently being over an hour late every time I go to see him, very little has changed; we’re still exactly two tenths of bugger-all close to improving my pain, but that doesn’t mean that we’re not going to throw medications at it!

After much debate over just how awful Cymbalta was for me (it’s cool, disregard everything I say the first time around, doc) we came to the conclusion that the Lyrica does actually help the horrible shooting nerve pain, but does nothing for the muscular pain or the burning joint pain or anything else that’s going on. So, the Lyrica stays. That’s cool. We put me back on the Celebrex, double my dose and cross our fingers that this might help some other kind of pain – you don’t know unless you try these things. It’s also important that I go back on some kind of anti-depressant/anxiety control and get my sleep back into some kind of order. At present, I’m sleeping for maybe 3 hours a night, if I’m lucky. Unfortunately, I’m also suffering some major mental/cerebral fuckery. Memory loss. Major memory loss. The kind where I’ll forget what day it is, why I got up to use the bathroom (yes, when it’s kind of obvious) and what I’m talking about mid way through a conversation.

So, the deal is that I’ve been put on Amytriptaline. Some of you know that this goes very poorly for me, but this is my option right now.ย 10811614_10153360609232942_398713081_n Mostly due to my own cockup – I could only remember amytriptaline when I went in, not what it did to me (and I had Manthing with me, too, but he couldn’t remember) so there’s a good chance I’ll need to have this changed by a GP some time in the next week. Granted, I am on a very low dose, so if I do react badly, I at least won’t want to gnaw my own ankle off because it’s smack talking me. But, I’m going to have to start keeping a log of what shit I react badly to and what stuff I can take. Just, for the life of me, I couldn’t remember if it was the Endep or the Xydep, and he would have picked one either way and said “let’s try this and see if it’s this one”, so we’re functionally in the same place.

At the same time, there’s a lot going on in myย  brain right now. The real estate have decided to functionally be dicks about the entire housing thing, but we got approved for a new place that we can move into after the 21st. We’re $2500 out of pocket, but jesus tapdancing christ, we don’t have to put up with the hell that is here. We almost wrote off the car today/died, but no biggie. I have no small amount of applause for Manthing’s driving skills for avoiding what would have otherwise been a really awful situation. I’m exhausted and my head hurts. Tomorrow tickets for the Foo Fighters go on sale and I want need to be at their concert in Feb. I’m crossing my fingers that I get tickets for myself, manthing and two friends. They go on sale in 9 hours and I will sell my firstborn child for one.

At this point, I’m running out of brain to write, so I’m going to wrap things up. I’ve got a few comics up my sleeves (just need the time/equipment to draw them and one of thoseย  two are in boxes!) and a few other ideas going on, but you’ll have to wait for that ๐Ÿ™‚

[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.

Image

“The misery state”

First image post from my phone. Not the same as my usual comics, but it will have to do.

Really awfully sick at the moment. Though we managed to go to the Easter Show on Friday (which was amazing, but for another post) I can’t imagine being caught out in the rain or being around that many people was good for me, because three days later, I’m stuck in bed and wheezing through sinus, chest and ear gunk and dealing in the worst pain flare I’ve ever had.

Last night I went from simply feeling under the weather to having a 9.5 on my pain scale. Why no 10? I refuse to tempt fate by calling anything a 10 because, as my luck goes, the moment I do is the moment my body tries to out do itself in that area. Suffice to say I spent last night sobbing like a bitch, needing help with everything and trying to simply be comatose. Even the Endone didn’t help last night.

Naturally this also comes in the two weeks before my big event, so I’m doing my best not to stress and fret over that, too.

Any hoo. I’m going to try and get some sleep and hope the sludge monster that’s taken up residence in my head sods off. I’m also behind on reading all your blogs, so I’ll play catch up when I feel less like Satan’s arse hole.

Trash and Treasure

Today is a very emotionally complicated day.

In fact, this entire weekend has had it’s own lot of ups and downs.

Pro: I got to spend time with friends.

Negative: I spent the entire weekend in high levels of pain.

Pro: We played Pathfinder and it made a decent distraction.

Negative: It made me realise how much I rely on these distractions to get through daily life, and how I never play a character with my illnesses.

Pro: I made awesome food and I should be proud of it.

Negative: I missed my adoptive dad’s surprise birthday party and hated myself for it.

Pro: Did I mention we played Pathfinder?

 

I’m making a marked point to leave this post with more pro points than cons, but it’s bloody difficult. My memory is at the worst it’s ever been. I’m forgetting names, places, details and where I parked my car. It’s starting to get scary. I’m less and less mobile. I need more painkillers and begin and end every day with a steaming hot bath to ease the pain enough so I can sleep, or get a small amount of shit done. I honest to god feel like I’m starting to lose parts of my self to this illness.

On the plus side, today I was sold as chattel to a bandit camp as an entertainer. I Inara’d the shit out of it, demanded a bath, to be unshackled and put on a performance of a lifetime. I actually earned 12gp out of a bandit camp (rolled a 37 on my perform check) and hit the soft spot of a poet-gone-rogue so to speak and, with the rest of my party, we killed the Stag lord (their leader) and I single handedly shot dead seven people from a guard tower with zero detection, and the NPC was utterly smitten – and a little afraid of me – and joined our party. We formed a kingdom, and I went to bed in utter misery because I had not only a fucked up pain flare, but a massive spike of depression when I realised just how much different the life of my character was to my own.

Right now I feel seven kinds of awful. Emotionally I feel fairly crushed. I’ve hit a new physical low. Mentally I feel like I’m drying to dig through a brick wall with a dull spoon. Everything is more or less really shit. Hell, I’ve got three or four comics to upload for you all, but I can’t sum up the effort to do it. Just the overwhelming feeling of being utterly useless seems to be overshadowing everything else I do right now.

I suppose the plus side is that I’m seeing my psych tomorrow. I’ll at least be able to talk through some of this shit with her, but the shit side is that we effectively can’t really do anything about it. We tweak medications, my chemical levels flail wildly, I still have pain flares, I still forget things, I still feel like shit. I guess that’s one of the biggest reasons I decided to make this blog so, on nights like tonight when I really don’t feel like talking to anyone (not even manthing about this shit, though I know he’ll read it anyway) I can still find some way to get it all off my chest. There just seems something harmless about writing it down. Like I somehow take the sting out of the feelings when I translate it into words. I don’t know. At least this way I don’t have to look people in the eye or deal with them hovering around me and asking if I’m okay.

Through the other side

You may have noticed it’s been quite some time since I last posted here in my little blog. In case you missed out on the news, I moved house between now and the last time I bothered you all. The new place is wonderful and has made life a lot easier in certain aspects of my life, including my health. I now have have a house with minimal stairs, LOTS of space for when I’m having my bad days, my own personal bathroom so I don’t have to make a trek across the mountains to use the bathroom of a night, and I also have access to a BATH.

It’s amazing how much these little things can make a difference. I’m finding that, now we’re settling in, I can self-manage my health issues better (when they’re manageable, but I’ll get to that), my stress levels have gone down in regards to petty household stuff, and I now actually have the space to move and breathe. I no longer feel like a sardine in a tiny little can.

This is what our bed feels like now. Not actually our bed, but god does it feel big.

Manthing is also doing much better now that we’re out of our old house. He especially likes the fact that I no longer have to climb over him to get out of bed when I need to use the bathroom of a night. We can have the double bed with access to both sides ๐Ÿ˜€ I also no longer have to bother him to put the phone on charge or to pass me things I need since I have my own bedside table. See what I mean when I was saying it’s all about the little things?

So, the new house is great. We live in a nice quiet area. I’m not kidding. We’re actually across the road from a cemetery here, but it’s amazingly peaceful and not at all creepy. Rather than the usual grave stones, we’re across from the family garden section, so our view is of well-tended gardens, sandstone boulders and manicured lawns. Mind you, they DO have the barbed wire on the fence facing IN, so in the event of a zombie uprising, we should at least have time to grab our pointed sticks.

Now, speaking of manageable health issues, the move didn’t go very smoothly. I learned the hard way what my body’s ‘hard’ limits are. In terms of BDSM, hard limits are anything you WILL NOT do under any circumstances. In this instance, my body’s hard limits are being pushed to a certain point, going without rest and being shunted along on energy drinks. I had minimal rest, a major pain flare the week before the move, Shark Week also decided to show up for it’s once-every-six-month visit that same week and I was so run down it wasn’t funny. However, half the people that said they’d offer us help for the move bailed on us and we were left with myself, Manthing, our other housemate and one other friend over the weekend of the move. To put it frankly, it was bullshit, but you’ve got to do what you’ve got to do.

To cut to the chase, I ended up in hospital with heart palpitations, headspins and my body generally giving me a big “FUCK YOU!”. I got strapped to a 24-hour EKG (that was a very un-fun experience, as was trying to wash the contact goo off afterwards), I pushed myself into another massive flare up and basically slept for a week afterwards.

Quoth the body…

It took me almost two weeks to recover from that stupidity and I’ve learned my lesson in that area. However, my body is still punishing me. Because of that incident, I’ve had a big follow-on Fibro flare up and my Chronic Fatigue is presently kicking my arse. I’m heading into what we call the ‘Sleeping Beauty’ week where my CFS basically renders me bedridden and otherwise useless until I rest as much as my Evil Overlords demand. At the same time, I’ve had to get two ugly ingrown toenails dug out, so my left big toe looks like it lost a fight with a blender (and feels about the same) and my ladyparts are having some kind of spastic attack where I’m now lactating out of just one breast. Fucked if I know why. I’ve had the blood tests and the ultrasounds and they’ve all come back negative for chest-bursters and hormonal reasons, so it seems that my body is just exercising it’s right to hit that next level of crazy.

On top of all of these things, I’ve had some massive financial issues hit me lately. See, I finally got accepted for Disability Pension. Over here, it’s not an easy process at all. It involves more scrutiny than a full cavity search at the airport, and less humanity. I won’t go into details, but the point is that I finally got confirmation that I had been granted the payments. This in itself was a wonderful thing as I wouldn’t have to worry about where my next rent payment was coming from and I wouldn’t have to beg my mother to cover the cost of my medications. The amount I was granted was also enough for us to afford a better place – see: where we live presently. So things were looking up. We moved out, it was fantastic and I was finally getting somewhere. I was paying off people I owed, I was going to be able to afford access to the heated pools at the local gym in a few months and, god forbid, I’d be able to put a bit of money into my business.

Twice they screwed up my paperwork and I hunted them down to make sure they corrected it both times. The third time they screwed me around, they changed my payrate to less than half of what I was getting (and what I was promised!), AFTER we had already signed a 6-month lease for the new property and had moved out. I spent 6 hours on phone calls to various departments, different social workers and generally being degraded by the people on the other end of the phone. Long story short, they had screwed up initially, and had done so HARD. In point of fact they had actually lied to me about the rate I’d be getting. Yes, the one I confirmed twice with them and the one I based my decisions off.

So things are a little complicated now. I’m in a new and more expensive house, I have stuff I can no longer afford, I can’t get certain basic needs met and I’m struggling to make ends meet. On the upside, I still have my pension card so my mother no longer has to pay for my medication. They still cost me about $100 a month, even with the subsidies, but all of my money goes towards that now. The really shitty bit is that Manthing and I sat down and worked this out. My payments were cut because of his wages. If he lost his job and became my full-time carer here, my rate would go back up, he’d get the full amount and we’d actually be bringing in more than he’s earning at the moment. Mind you, he’s earning a dollar above minimum wage which is the stupid bit. I still don’t understand how a Government can allow it’s most vulnerable people to essentially rot when there’s no option for them to return to work. I’m trying to get the business up and running again as quickly as I can after the move, but with all the health issues you can imagine just how easy that is.

So I’m here trying to manage my day-to-day life with Queen HateYourFace throwing a wobbly (yes, I’m referring to my body), trying to balance household finances and not let it eat at me, and on top of it all, because of how run down I’ve been, I’ve also had massive depression issues :/ Depression is one of those stupid things that everyone seems to know about but nobody really seems to know what it involves. It’s like knowing that Mister Smith down the road has this issue where he farts a lot, but you don’t really know why, nor do you bother to question it.

To give you an insight into depression in my case – as I must impress upon you all that it is different for each and every person – imagine all the worst things about yourself, take a picture, and put that over every mirror in the house. You’ve also got this little gnome that follows you around the house and kicks you in your joints (because there is a physical side associated with depression) when you’re not looking. He also spits, swears, points out everything that’s wrong in the house and is the voice in your ear telling you everything you’ve failed at, everything you can’t do and all the things you should be miserable about.

You’re a sick, useless butt head. You smell, you’re ugly and nobody loves you. Yeah, even that guy you’ve lived with for 3 years. He’s sick of your shit. Everyone’s sick of your shit. You’ll never amount to anything because you’re always the sick one and nobody wants to deal with that. Best of all, guess what? You can’t do a damn thing about it!

– Grognar the shitfaced Gnome

So I’m here dealing with all these physical issues beating me up. On top of that, the chemical imbalance in my brain has decided to help tag team me as well. Fortunately I’m really lucky living where I do. I’m one of those privileged people that has access to a reasonable free healthcare system and, because of that, access to a therapist. She and I have done a lot of talking about the issues at hand and have been able to identify key points I beat myself up over. We’ve worked out a plan of attack, per se, and I’m slowly working on kicking Grognar’s hairy little arse out of my house. All the other issues will be dealt with later once I have a stable head back on my shoulders.

I know this has probably been a bit of a marathon read, but for someone that doesn’t normally blog I can assure you that it’s been just as much of an endurance event. As part of my commitment to kick depression’s arse and get my shit back on track, I’ve promise to keep this blog active and see every post as an achievement, whether it’s a written post, a meme or a comic I’ve drawn. I can’t promise a post every day or even every few days, but I will do what I can and I have nothing but the greatest admiration and gratitude for those of you that have followed my blog (all 40 of you. That’s utterly insane!) because it’s you people that have made me commit to getting my story out there. It’s because I know that someone somewhere will read this that I will continue writing, and I’m going to learn to love doing it for my own reasons as we go.

I do actually have a slightly more bright post lined up for you all in the next few days ๐Ÿ™‚ I’m also making a point of getting back into drawing my little single-page comics since they’ve been so well received here.

I honestly hope you’ve all been keeping well in my absence and I’d love to hear what you’ve all been up to, even if you’d prefer to message me privately. I’d really love to get to know you all!

Anyhoo, it’s late here and my bed is making sexy eyes at me. I think it’s time I go and get some shut-eye.

– Abigail

“Enter title here” or “blogging for dummies”

So, it’s 11:39pm and I can’t sleep. Too much random pain happening in my body right now for me to relax, too tired to properly focus.

I’ve spent the last week packing boxes and moving entire rooms in prep for the house move we’re going to do at the beginning of next month. Mostly looking forward to the fact that I get to have a bath when I’m sore and restless. To be honest, I just want the move to be over and done with already. I’m sick of the anticipation and waiting, even though it’s only been about a week and a half. I really don’t mind the idea of just spending a few days sleeping rather than forcing myself to get up and get stuff done.

Problem is, I’m one of these stupid people that can’t stay still. I find it very difficult to take time off from what I’m doing, even if my body or my brain needs it. I’m in the bad habit of always having to be gogogo until I crash, and even then it usually takes Manthing giving me a firm scolding for me to give in and just chill out for a little.

So, I admit, I overdid it today. By a fair margin. I woke up in pain, I knew I needed to take it easy but my motivation said otherwise and now it’s almost midnight, I’m serioulsy exhausted but in too much discomfort to sleep. That’s another problem. I’m used to pain now so anything that’s less than the level of “I’m seriously hurting, I should take something for this” (see anything between a 2 and a 4 on the pain scale) is just counted as discomfort. You know what also makes me uncomfortable? Taking painkillers. I hate the fishbowl head feeling of having wet sand for a brain. I hate the dizziness I get left with. I hate the fact that the brain and the rest of my body don’t want to communicate and I hate the way it wears off and the pain seeps back in. Anyway, I’m rambling.

I’ve been ordered to try and make a blog post a day – be it a comic, a written post or even a photo – just to try and document how I’m dealing with my pain levels and life in general, so here’s tonight’s post. Enjoy.

I’ll write something more witty tomorrow when I don’t feel like arse.

Chronic Fatigue help?

I need some help/advice/brains. I’ve been hit with literally the worst case of fatigue and exhaustion I’ve ever had to deal with. I can barely finish a sentence, spell check hates me and it’s a struggle to keep my eyes open. I had a fairly big Christmas and had three major pain flares before that. I know I probably should have taken it easier, but didn’t really have a choice. Christmas day I survived off two energy drinks, three cups of coffee and a nap and still completely crashed the moment I got home and it’s all been down hill from there. I’m normally a fairly light sleeper and am up at 9am every day without fail. Today I woke up at midday and couldn’t get out of bed. At 5pm my partner came home and woke me up again and I’m just about falling asleep on the keyboard while typing this.

I have both Chronic Fatigue Syndrome and Fibromyalgia, but I’ve never had the fatigue quite this bad. Generally I go through patches where I need to sleep more than usual, but right now this completely blows all of that out of the water. I feel like I could sleep for a month and then some. Is this normal? Do other people deal with this kind of entire exhaustion?

Is it just something I need to literally sleep off for a few days? Do I need to push through it and try to keep moving? I seriously have no experience in this at all and need some advice from those that have gone through this before.