[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.

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[Journal] I can’t think of a title today

This weekend I finally got out of the house. I ended up completely butts exhausted from it all, but I’ve been fighting the same sinus crap and hoping that the antibiotics are working (only to wake up this morning with a nasty sore throat) and I decided to get out and have some fun. I was lucky enough to see some old friends there and got to have a catch-up, but I also ran into someone from my days in reenactment.

I was quite taken aback at our brief exchange. We’ve known each other as acquaintances for almost 6 years now and I make no secret of my disability nor my mobility aids, so to have someone with such a bullshit attitude about it all really irritated in a way I couldn’t quite put my finger on. Bearing in mind, by this point I was on my way to exit the event. I was limping quite heavily and leaning on the cane a lot and thinking about nothing but getting home to bed.

Tool: “Why on earth do you have a cane?”
Me: (flatly) “Because I’m a cripple.”
Tool: “I call bullshit!”
Me: “… I’m sorry, what?”
Tool: “Since when?! I’ve never seen you with a cane before.”
Me: “Since always. I’ve had it with me at every camp* and event I’ve been to.”
Tool: “Well, I’ve never seen it before.”

*Every medieval camp I’ve been to, I’ve needed my cane by the time the evening kicks around. I don’t make a fuss of it. It’s just an extension of myself these days.

Their tone of voice was very accusatory and disbelieving, like I had suddenly grown a third arm just to spite them. I wasn’t expecting anything like that, especially from someone who has known me in the past. I think the bit that confounded me was the fact that I make no secret of needing my cane, nor do I make a secret of being sick. It almost seemed like their reaction seemed to say “Well, I wasn’t informed, so you’re not validated in being ill”. It’s probably an overreaction on my part, but something about what was said triggered instant rage on my part. I don’t know whether it was the fact that he was just an insensitive prick, the assumption that I’m faking sick for shits and/or giggles and attention or something I haven’t quite put my finger on yet, but I’ve spent the last two days brewing about it in my quiet moments.

I feel that, in instances like this, it should be entirely legal to pimp hand the shit out of the stupid.

The perception of illness also brings me to another point that’s been on my mind a lot this morning: Short term/new pain versus old/chronic pain.

Over the years I’ve seen a few friends of mine have accidents, break bones and generally get hit with the nastier side of life when it comes to pain. What always has me curious is how people react to it, especially on social mediums like Facebook. Now, this has nothing to do with the ‘attention’ raised from an issue, but more the general reactions over time. This can also apply to any long term or chronic issue, be it pain, depression and mental health or general malaise.

First and foremost here is that pain sucks. It really, really does, regardless of who’s experiencing it and for how long. But what I always find interesting is that, if you take an otherwise healthy person and they end up in pain (whether it’s short or long term), people kick up a stink. there’s a massive furor about how unfair it is and how they’re thinking of the person. There’s messages that they should stay strong and that it will pass and everything will be okay. There is generally some kind of outpouring of well-wishes, regardless of how big or small.

If we skip forward a few years and that one person is still in pain of one kind or another, the universal reaction is that it’s become old-hat. They still have the few usual friends offering support, but the uproar and discontent at the situation has died to a dull roar. It’s no longer a matter for outrage at the injustice, but becomes something that ‘just is’. The person going through the issue doesn’t suffer any less, but their suffering becomes commonplace. It’s something you expect. It’s something that you can’t change, so what was once this vociferous show of solidarity becomes a “well, you know we’re here” from the back seat.

Suddenly getting up and facing the reality of the situation, day after day, gets hard. You know what to expect. You know what’s coming and what you’re going to face. You just don’t have the crowd cheering you on from the seats, just the memory of the support you had when you first got sick.

Go and hug a chronic kitty. It doesn’t matter if they’ve been dealing with shit a week or eighteen years. Give them a gentle hug and let them know you’re thinking of them. It doesn’t matter if their illness is mental or physical or emotional. It doesn’t matter whether you can see it or not. Go and give them a hug. Write them a letter. Send them a message. Let them know they have their own personal army cheering for them on the hardest days ❤

A good support community

One thing people never tell you about being diagnosed with Fibro is that it can be seriously scary sometimes. Especially when you start getting all these strange and whacky symptoms that make no sense, you get no answers (see: “Your bloods came back perfectly normal!”) and you personally don’t know people you can talk to about these things.

One of the best things you can do is find a community for people dealing with Fibro specifically. In my case, it’s Reddit. Time and time again, I’ve found myself overwhelmed with the response I’ve had to my dire “Help, am I dying?” questions. Obviously not medical advice, but you’re dealing with people that LIVE the same condition you have and deal with the strange shit it brings on a daily basis. Sometimes all you need is to feel like you’re being understood. Sometimes you need advice from someone that’s walked the same road as you. Sometimes, you just need to feel like you’re not going mad. Thus far, the two most amazing communities I’ve encountered for this are Reddit and the Bloggers. Both are entirely no-bullshit, real people that will tell things how it is. Both have been important beyond words in my rough times, my pain flares and my freakouts.

For those without these resources, please please PLEASE follow these links and build your support community.

http://www.reddit.com/r/Fibromyalgia/ – The Reddit board. I love these guys to bits.

My fellow Fibromites:

http://bleachedbonevalley.wordpress.com/ – A wonderful woman that tells things exactly how it is.

http://littleefibro.wordpress.com/ – A blog I’ve found a lot of inspiration in.

http://fighterzblog.wordpress.com/ A zine specifically for us.

http://myfibrotasticlife.com/ – The first blog that I followed on here. A fellow fighter, incredible young woman and the inspiration for continuing to keep my own blog going. Thank you.