[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.

Advertisements

[Journal] Emotional navelgazing

Tonight Manthing asked me if he could catch up with a woman for coffee. For anyone who’s been around this blog for a little while (or anyone who has read my ‘about me’ section) knows that our relationship doesn’t exactly conform to your norms. We are in an open, polyamourous relationship and it works for us, we’re happy with it and that’s all that matters at the end of the day. In this post, I ask that you do not judge, try to convert or otherwise criticise my relationship mechanics because you do not agree with it. That’s not the point of this post

But tonight manthing asked me if he could catch up with a woman for coffee, and I was gripped by a sense of panic. After sitting down and talking about what was bothering me, I came to two conclusions.

The first, the idea that if he finds someone he likes, that he or she would reject me as his partner, she would make me feel unwelcome in her presence, she would throw my position physically, socially or financially in my face or she would otherwise disagree with the idea of sharing time with Manthing.

The other is that, in his adventures, he would find someone that made him happy, and while I’m entirely happy in my relationship with him, that I would fail to find connections with people outside our relationship and would end up jealous and unhappy.

During our talks, I realised that these issues, and many more, came down to one thing. My ex boyfriend and our ex girlfriend. The relationship I had with them has coloured my perception of the world so drastically that I hardly noticed until I stepped back and asked myself “Why?” Why am I upset? Why does this cause me distress?

In one relationship I was undervalued. I was cheated on multiple times. I had a partner that wanted a parent and a secretary. Someone who had no motivation of their own, no drive to improve themselves as a person and, rather than fighting, he simply shrugged and gave up and was happy with “I tried”. I did love him, but by the end it felt hollow and one-sided. I felt like slapping him and screaming at him to try and keep me, rather than rotting away like a corpse in a basement. I did love him, but by the end, all that was had been tainted by the bitterness and anger that I held against him for failing to walk beside me as I moved forwards in my life.

That left me with the impression that I had no value as a person. That I was expendable, replaceable at a moments notice. It told me that I wasn’t worth the effort of stepping away from the PC, that my happiness came second to someone else’s. It taught me that I was an idiot to trust people and that I would ultimately end up getting hurt.

After Manthing and I became an item, there were many challenges we had to face as a couple. The greatest is something I’m still fighting to this day – that I have an intrinsic value as a person, and that anyone that truly loves me will show me this every single day.

After some time, Manthing and I became involved with a girl. To this day I’m still madly in love with her, and I find my heart aching when I come across the photo of her sitting on the couch in my jumper. I miss the way she smelled and the softness of her hair and her skin. I miss her laugh, the way she could light up a room just by walking in, her stunning smile and I miss knowing her intimately, physically and otherwise. A few months ago I found a video she had made for us when we were together. She sang a beautiful song. I couldn’t watch more than a few seconds before I was in tears. But, while things were wonderful while they were good – she proved that there was very little in the world that made me happier than both her and Manthing being a part of my life at the same time – the note the relationship ended on… well, I would take broken bones over that heartache any day.

While there were many unaddressed issues of her own health and her lack of management thereof, what sealed fate was the fact that she commited the cardinal sin against someone with a chronic, uncontrollable illness and told me that she couldn’t cope with it. That it was getting to her. She told me that MY illness had become HER problem. I understand that, after a time, it can be wearing to see someone you care about face battles you can’t fight. I do. But what was said to me that evening was unforgivable, and it reinforced my greatest fear – that someone I had opened my heart to and truly loved with every part of my being, that they could cut me down where I stood by using my own personal hell against me. She had proven that, with my conditions, being in a relationship outside of Manthing simply wasn’t possible because my health was too much of a burden on others and that I would have been so much better off either never having revealed my Achilles heel, or even loved to begin with.

And so I find myself tonight sitting here and trying to make sense of the thoughts rushing around in my head. I listen to the way part of me desperately yearns to make meaningful connections with people, and I hear the other part of me that says “No, it’s too dangerous. You will only find hurt and loneliness” and I don’t know which one is more right than the other. The real question begging an answer is “Can I allow Manthing the chance to find happiness (alongside me) and am I willing to risk not finding it myself?”

Life is inherently one giant risk. We risk traveling through our mother’s body to the world. We risk our lives leaving the house. We risk our ego every time we speak to people. We risk being hurt when we give them more than a “hello”. What I ultimately need to decide is whether my happiness, and manthing’s is ultimately worth that risk. Because a part of me deep down inside still believes that it may be worth it. Not every time, but sometimes. And that sometimes can make all the difference.

[Journal] The adventure continues

So, over the last two days, I’ve had the two specialist appointments that I had been waiting months for. I won’t go into too many details, but things didn’t go quite as planned. I won’t say that it was necessarily a bad result overall, but it certainly wasn’t what I had expected.

The first specialist was the one I was seeing about the possibility of Ketamine infusions. Within the first five minutes, that was off the cards. It turns out that this particular treatment isn’t available via public health care here. The rest of the appointment followed along the lines of what we could do about changing medications to help with my pain, explaining a few things about fibro and CFS and, of course, confirming that I had both of those and adding a new diagnosis of IBS to the list.

Day two resulted in a script for Lyrica, a plan to be weaned off my dose of Duloxetine and generally a change over of things.

Today was a regular GP appointment to follow up on the specialists and also get some results. It turns out that, despite the constant swelling and bruising and whatnot, my toe isn’t broken. That’s pretty interesting. My bloods show that I am allergic to ALL THE THINGS!, specifically grass, fur of all my favourite animals and any kind of mites and dust. That basically sums up everything I am around, ever. So there’s that. Also got my script for Lyrica filled out and, thanks to the bell-ends running this country, my script isn’t classed as ‘necessary’ under our healthcare and I can’t get a generic form of it. So, I’m looking at $70 a month on top of the $108 a month I need for my private helathcare (that I had to sign up for last night) that I can’t use for another week. Oh, and because of my pre-existing illnesses, none of this will be covered for 12 months, anyway. So I have to give these guys almost a grand and a half before I throw more money at them for my healthcare. I’m not terribly impressed by the entire ordeal, but what can you do? I mean, my options are stick with what I have, be miserably sick and make no process, or beggar myself and have a chance at living some kind of normal and relatively pain-stable life. Of course, we won’t know this until I’ve been on the Lyrica for a while and we’ve tweaked it with other meds, but that’s the gamble you have to make with these things.

So, tonight I take Lyrica for the first time. I’m sore thanks to a weather change, exhausted from all the poking and prodding and walking and generally feeling like crap from it all. I’m going to give myself a few days to settle into the rhythm of things here, so if you don’t see a journal, it’s okay. I am still alive, somewhere. Possibly holed up in my bed and feeling like hot sweaty arse. On the plus side, this should actually allow me to get some sleep for the first few days while my body decides to behave itself, so we’ll see how it all goes.

Image

[Comic] How to be friends with someone who has a chronic illness

[Comic] How to be friends with someone who has a chronic illness

This has been something that’s been on my mind lately. Quite often, because my illness is something that’s been around quite some time, more often than not I tend to feel that people overlook it and the effect it has on my life. Sometimes it’s big things, other times it’s little things, but I decided to make a comic about a few of the more important subjects that crossed my mind