[Journal] Hello world, this is me.

The last month has been rough. I picked up a chest infection at an event I attended 4 weeks ago thanks to some careless twat. Thought I got over it. Anibiotics the size of horse pills and the whole coughing up primordial slime shebang. I was on the end of it when I went out again, this time got a sinus bug on top, and it gave the chest infection the leg back up it needed. This time around, with the weather changes that have happened, I feel like the walking dead. I can’t remember being in a worse state this year, and it’s taken it’s toll.

Today I hit my breaking point. Today I was sick of being dishonest and constantly bullshitting everyone with how bad things have been. In a fit of god-knows-what, I made a post with a unfiltered pic of myself – straight out of bed – which I can’t share for privacy/anonymity reasons.

I feel that this may be relevant to people who are likewise suffering and need some solidarity in their fight. Today, I’m with you guys.

Today, this is Abi. This is the real Abi.

So often I am the Abi that laughs at life and herself to get her through the day. I am the woman that tells herself she is strong and genuinely tries to avoid talking about her problems so she keeps the friends she has and doesn’t become a burden. I am the Abi that will get up despite the pain and make or do something through gritted teeth just to tell myself that I’m not useless today. I am the version of me that does my best to listen to other people when they need a friend, setting my own needs aside. I am the one that downplays the effect my chronic sicknesses have on me with “I’m not the best” or “things are a bit poo” when I feel like I am dying. I am the one that goes to pains to not “look sick”, will dress up, wash my face and forego the mobility scooter and cane and wheelchair so I look like everyone else. I am the Abi that will stick it out to the eleventh hour while out of the house with friends, because I want to pretend everything is fine and just be *normal* again.

Today is a breaking point.

Today I am sick, and I have been literally my whole life. Imagine that. Think back as far as your memories go and try to imagine the pervasive feeling of pain somewhere in every single one of those precious childhood moments. Imagine them following you through to highschool and being terrified of being teased for using a cane, so you sucked it up and went without, and pushed your body further on your good days to make up for it. Imagine it as you try to find your first job, sitting like a knot in your throat, a whisper behind your ear. A dirty little secret. Because young people don’t get sick.

And just when you thought you knew the beast, it brought you to your knees. It broke you and you had nobody that understood the /scope/of agony you were dealing with, so you learned to keep quiet. First to friends. Then to family. Eventually to partners and doctors and specialists. Because young people don’t get sick. You were attention seeking. A drama queen. An attention whore. Desperate to simply find an echo of understanding in the world and the answer to the question “why?”

Why me? What did I do? Was there a reason I was chosen for this? Will I die with this pain?

IS THERE A REASON?!

But the answer is almost always silence. From family who buy your facade. From friends who don’t know how to accomodate. From partners who don’t know how to cope. From specialists who lack funding. From that little voice of self inside.

It’s always silence.

Today I am not being silent. This is me. This is that same Abi you all know. The one that laughs at fart jokes. The one that bends over backwards to help people and downplays it because she can’t handle praise. This is the Valkyrie. The gamer. The artist and lover and fighter. I am the Abi that cries in her room from uncontrolled pain. I am the Abi that is too ashamed to talk about her pain for fear of rejection. I am the Abi that has given up so many things she loves because of her health. I am the Abi that has lost friendships, lovers and opportunities because of something I can’t directly control. I am the Abi that goes to sleep with anxiety and wakes with the crushing reality of “this is what today is going to be like”. I am the Abi that has been torn up inside because I have had the very real choice of doing something I want and ending up in hospital, or staying home in my room and being safe due to the stresses going out puts on my body. I am the Abi that feels defective, lonely and useless when friends respond with “Oh, I heard you weren’t well so I figured I would leave you be” like there would be a time when I somehow was well again. And today I am not well, and I haven’t been for a very long time.

But if you’ve read this and understood just one sentence, one line, and have learned something, decided that you want to know the me without the smile, the 4am blogger, the swearing, hot mess, I might just be okay.

Today has been exhausting. Tomorrow is another day.

[Journal] 10 things I wish able-bodied people WOULD assume about my health.

I’ve been keeping mostly to myself over the last few months to make health issues much more bearable. Lying in bed last night while waiting for my painkillers to kick in, something occured to me; people make a LOT of assumptions when you’re sick and most of them are awful. How many of you have heard the old nut of “But you don’t look sick!”?

So, if I had to deal with people assuming stuff about me, what would the best case scenario be? In a perfect world, what would I want them to me thinking?

1. “They’re young and have a disability parking permit. Their illness must be pretty serious.” 

I really wish this was the first thing that went through people’s heads rather than “fuck you, you’re faking and I need to let you know how disgruntled this makes me, even though it doesn’t affect me directly”. I’ve been accosted multiple times from both parents and elderly who should know better, and even had my car vandilised because I’m a twenty-something female with an invisible illness and everyone suddenly takes up the social justice sword the moment disabled parking is involved. If people were half as quick to assume there might be a reason you use the parking spaces as they are to condemn you for doing so, we wouldn’t have half the stigma against shit like this and I wouldn’t feel ashamed to need it on my really bad days.

2. “I can’t see any physical signs of an illness in them. I don’t doubt them in the slightest since invisible illnesses are a thing. In fact, they carry themselves incredibly well to pass as healthy.

No symptoms = not sick. I mean, come on. Everybody knows that. After all, there are clear and visible signs of Diabetes, cancer, Lupus, Fibromyalgia, mental health and immune disorders. 90% of the chronic pain kitties I know have gotten so good at ‘passing’ as healthy because it makes life easier. No questions, no judgemental stares and no people acting stupid trying to do what they think is the right thing without actually asking you.

3. “I haven’t heard from my chronically sick friend in a while. Rather than avoiding me, they must be really unwell or taking important time to themselves. I should send them a message and ask if they are okay.

Being sick is hard work. It drains you in ways you can’t even imagine until you’re living it, and it often leaves you with almost no energy for socialising or outings. Sometimes people take it personally and don’t have the experience to understand that it’s an incredibly complicated situation where nobody ultimately wins, rather than you expending energy to avoid them or cut off contact.

4. “They’ve cancelled our plans at the last minute AGAIN. I can’t imagine how frustrating it is for them to want to go out, but to have their body decide otherwise.”

This is a big one. If I had a dollar for every time I’ve had to can plans because I can’t move, it would make me more sick or I simply need to pace myself, I woukd be able to get my painkillers gold-plated. We WANT to be out there with you. We want the normalcy of going out on a whim or looking forward to plans. When we have to call it off, we don’t gain anything from it, trust me. Please remember the person behind the illness and that we have the same social needs as you.

5. “My friend has a chronic illness but the rest of our group of friends doesn’t know. It’s not my place to ‘out’ them since they may not want everyone to know, and there’s a lot of information I don’t have.

There have been many times in my life where ‘coming out’ about my illnesses was necessary, but also many where I have been more comfortable to simly slip under the radar and pass as a regular able-bodied person. The reasons for this vary, but it should always be my choice whether or not that status is disclosed, and there have been occasions where that choice has been taken away from me by well-intentioned people trying to simply do the right thing. I ended up feeling exposed and uncomfortable, having to explain things that were sensitive to me at the time to people that may not have been the most receptive to the information – all because I didn’t get the choice.

In more extreme situations, this can cost people jobs and future employment, friendship and relationships and ultimately end in excusion, bullying and other generally shitty scenarios.

6. “We’re going out with a friend who has mobility issues tonight. We should ask them how much they can move tonight, try to find a place close by for food and also try to keep pace with them when we walk so they feel a part of the group.

This is such a simple thing, but there have been so many times where it’s gone neglected. Not due to malice, but simply because, unless you have prior experience, most able-bodied people don’t even consider that it might be an issue. Going out with someone who has mobility issues DOES change the dynamic of an evening out, despite our best efforts. Let us dictate our mobility level, help us fit in by either finding places that are only a short distance nearby, or be willing to compromise, and please include them in the group. You would be genuinely surprised how much a little gesture like keeping pace with them means – suddenly we go from feeling like a killjoy and a burden, to feeling valued, included and able to participate in conversations.

7. “I know my friend is displaying signs of being tired and in pain. Rather than telling them what I think they’re feeling, I should ask them to describe it in their words so that they have the opportunity to tell me exactly how they feel.

This one has cropped up because I had an encounter the other day with my mother. She meant well, but when I stumbled out of my room, she remarked “you’re tired”. Now, living with ME/CFS, the only time I’m not tired is when I’m exhausted. She wasn’t wrong, but by the same token, I felt like not giving me the opportunity to tell her how I was feeling in my body, she was effectively writing off the way I felt. I know it wasn’t the intention, but there are so many times when people with invisible illnesses don’t have a voice and that we have to dumb down our experiences so that we’re not called whingers or attention seekers. If you want to know how we’re feeling, just ask. Don’t assume you know what we’re experiencing. Give us that voice.

8. “This person looks to have physical issues. Rather than me deciding what they’re capable of, I’m going to let them set their own limit. After all, they know their body best.

A lot of the time we’re at an impasse – stuck between asking for help and wanting to keep some of our independence. Losing the ability to do things on our own is part of us losing our sense of self, so to keep this short, let us dictate our capacity for each occasion rather than just assuming we can’t.

There is absolutely no harm in asking if we need help, but the problem arises when you assume that we can’t do it and take away the opportunity for us to be involved.

9. “That person is walking/looking/moving a little funny or using mobility gear. It makes them stand out. It doesn’t matter if this is normal or abnormal for them, I need to respect them as a person, understand they may be feeling alienated and treat them exactly the same as I would anyone else unless asked otherwise.”

Sometimes chronic illness can manifest in different ways. I can only really speak for myself here, but I hate using my mobility gear like my cane, scooter and wheelchair since it really makes me stand out like a sore thumb. I feel awkward, I feel a bit like a freak and I hate the looks people give me where you can simply tell they’re silently judging you.

I have no issue with kids looking at me since they’re blissfully unaware of these things and mostly innocent, but when mummy or grandpa put down their coffee to gawk open-mouthed as I roll past, I feel like keeping a small stash of rabbit poo in my pocket so I can flick it at them. A lot of the time we don’t have a choice in these things – it comes down to either staying at home while out of milk and sugar (which spells disaster for a good cup of tea) or going out while using our gear.

Just remember that, behind all of that stuff, behind the limp and the sling and the walker, scooter or chair, we are just like you. We have feelings and are just as aware of the looks as you would be if you farted in the cheese isle in the shopping centre.

10. “There’s something I don’t know about their illness. You know what? I should just ask them about it rather than making assumptions. If I’m their friend, it’s good for me to know about their issues in case they need help in the future.

I really want to emphasise this one – so long as you’re respectful of us as people, we don’t bite. We actually appreciate you taking the time to learn about the issues and conditions affecting us. Just don’t come up and as “yo, cripple, why the limp?”.

This list is by no means definitive, but instead a collection of thoughts from both myself and others on the matter. Do you have something you really want added to the list? Comment below and let me know!

 

[Journal] 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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[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