[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.

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[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.  You got a girlfriend and I vanished off the face of the earth to you.  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.

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.