Avoiding Crash and Burn

Written the the first week of my diagnosis. TW: internalised ableism

The title suggests that I speak with knowledge and authority about how to avoid crashing and burning. Let me assure you that this is not the case.

Yesterday, I did 10 minutes of the workout app that my sisters use to keep fit, and that was cool. I did a whole ton of writing and work. I went for a thirty minute walk. I went for a short trip to the doctor. I was pretty okay at the end of the day. I fell asleep around one, which was a little late, but overall, no big deal.

Yeah, I thought. A new treatment for a new diagnosis, a new lease of life. Back to normal (or what passes for normal.) I went to sleep, happy in the knowledge that I could have a semblance of a productive day.

I woke this morning in such tremendous pain that I wondered had I forgotten my Lyrica (I hadn’t). I was overwhelmed with fibro fog (which feels not unlike a bad hangover when you get it first thing in the morning) and nausea. I turned on my computer, but the words wouldn’t come. I turned on Netflix, but had to continuously pause it so I could run to the bathroom to get sick. I lay on top of my bed for a while until the feeling like I wanted to die passed.

It did pass about an hour ago, and I played a little guitar, and briefly Skyped the American, before having enough control over my thoughts to ramble on my own blog (but not to complete writing that I am paid to do.)

Fibromyalgia, it appears, is a lesson. Balance, everyone says. It’s all about finding the balance. But how do you find the balance when your choices are total exhaustion or total lack of productivity? I am afraid to do anything that might steal what little energy I have, but if I don’t push I will never adjust. If I have to stay in the house all the time to avoid constantly feeling like I’m going to vomit, how am I supposed to do anything in life?

Spoon Theory would suggest that I need to become more aware of how I am using my energy, and making the hard choices of what activities are most important. This is a good principle. It is just very disheartening when you remember that standing up for a whole shower took at least two spoons that you could have used on preparing for the giant big-deal debating competition that’s coming up in two weeks.

The unpredictability is terrifying. The need to cancel plans mere hours before they happen is terrifying. The thought of being out of the country for ten days without family members or spoon-savvy friends is terrifying. And I don’t want to live my life in fear, but I also don’t want to spend in bed suffering from the aftermath of my antics.

I feel bad for not being able to do things. I feel guilty for not having the energy to get a part time job and help pay my way. I hate that I am complaining when it could be so much worse. I hate that I want to cry a lot, but instead of crying my brain decides it is more productive to call me fat and check the calories of what I am eating.

But I also hate that I am rife with this internalised ableism. I hate that people seem to consider fibro an inconvenience that plagues multitudes, in the manner of IBS. I hate that everyone is telling me that diet and exercise is the answer. I hate that I want to rebuff everyone’s reassurances that it will be fine.

Because it might not. In all likelihood, I might not be able to become the person I want to be. And I will do something else, and that will be okay, and it will work itself out one way or another. But I need to space to grieve that girl. That girl who was going to change the world, taking names, and never shutting up about human rights. Whether she ever could have become anything is beside the point.

Things are different now and I feel like I cannot process and be upset and deal with the fact that I have a chronic illness, because everyone is trying to reassure me and tell me it’s not so bad. But it is so bad. Right now, it is. Right now it feels like the world is ending. I know it’s an overreaction but I feel like crap. And soon, I won’t. It won’t be so bad, and it might even be good again. But my blog is the one place where there is precious little need to put on the calm, professional, emotionless face that I use to deal with the world.

So here. Emotions. frshukfdshiosd;uiofrsdhikjfsdxkljhdfikjdhsxcuoi;weumzrg€frj.gvdegopg:JOv\zdfd\shl frdknvflfsouuio.

 

/Rant

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i wrote a facebook status after watching the rte debate on homophobia

I have the shakes after the homophobia debate. To those who believe that the pain of being called a homophobe equates to the pain of not being allowed to be married, of being afraid to talk about your relationship for fear of losing your job, of having to leave bars for fear of violence, of having a significantly higher risk of rape and suicide and mental illness, of being told that God hates you, of being bullied without reprimand, of knowing that there will always be a situation where it might be wiser not to reveal that you are LGBTQ…

if you think these two things are the same, then I would love to be living the life you are living, and I hope you greatly appreciate the rights and the privilege you have never had to think about. I hope that you consider that the way you conduct yourself should be primarily concerned with loving your neighbour. I hope that you understand that the Lord gave us free will and that you have no right to judge others, and that their relationships and behaviour will in no way affect your relationships and behaviour. I hope that you know that even if you still think that being called a homophobe is the same as the above, I will endeavour to treat you always with love, but that I will never, for a second, agree.

I Live In A World

I was going to write a post about encouragement but then I saw the Mandela movie and I am now too riled with anger to deal with my emotions. So I will write about encouragement tomorrow and try and articulate my rage today. I will be writing a calm and hopefully eloquent piece on the need for unity when seeking civil rights soon, but this is not that piece. 

I live in a world of calm down. I live in a world where anger is not acceptable. I live in a world of not rocking the boat. Of moving on. Of getting over it. Of shutting up. I live in a world where legitimate anger is equated with hate and the concept of equality means that oppressive damaging bullshit stances must be given equal time and respect as the need for basic human rights for all people.

I live in a world that has forgotten its history. I live in a world that is so “post-oppression” that it cannot bear to admit the inequalities its people still face. I live in a world that shrugs off the past. I live in a world in which the fear of losing power incites violence and misinformation and pain. I live in a world where the pain of being oppressed is equated to the pain of having your privilege pointed out.

I live in a world that equates the feminist movement to Nazism. I live in a world that tells me that my “heterophobia”  is wrong.  I live in a world in which it is unacceptable to be overweight. I live in a world where teachers are legally fired for being gay. I live in a world where hospitalised trans* people are not shown basic compassion. I live in a world where any discussion of women’s rights is derailed with “What about the men?” I live in a world where I cannot report the crimes of my rapist. I live in a world where I have multiple friends who have been sexually assaulted and didn’t even know that saying no was an option.

I live in a world where unarmed people of colour are shot in the head and their killers go free. I live in a world where holding the hand of a member of the same sex can get you put in jail. I live in a world that offers scholarships to oppressed groups and then gives them to “allies” i.e. cishet white people. I live in a world where people make Powerpoints on Tumblr to defend their racism. I live in a world where MRAs exist. I live in a world where Coca Cola will make an ad with a same sex couple in it and then cut the scene before it goes on air.

I live in a world where I fight only with words and yet am seen as the enemy.

And you have the audacity to tell me that my anger is not legitimate? You have the nerve to tell me to calm down?

Then Peter came up and said to him, “Lord, how often will my brother sin against me, and I forgive him? As many as seven times?” Jesus said to him, “I do not say to you seven times, but seventy times seven. (Matthew 18:21-22, ESV)

I live in a world that I have forgiven. I live in a world that I will again forgive. But its mistakes, its injustices, its past – I will not forget.

Some Scripture

Everything hurts. My hips. My stomach. My head. And I have an overwhelming urge to cry but am physically unable to and also have no legitimate reason to cry except for bus sadness, which is to say, random sadness for no reason. And even though it is not working in terms of improving my emotions, I want scripture to make me appreciate the joy and opportunity that the Lord provides me. And I don’t want to deal with it. But I want to want to deal with it. 

Though the mountains be shaken and the hills be removed,
yet my unfailing love for you will not be shaken
nor my covenant of peace be removed,” says the LORD,
who has compassion on you.
Isaisah 54:10 

Detachment

I started my mental health placement today. Its nice, the nurses are lovely, and its right down the street from my mom’s office which means I have a built in lunch buddy. What I didn’t realise is how I would handle being in an environment where mental illness is treated.

It’s very close to home. I sit in on clinics and listen to clients with depression talk about their lives and I recognise myself. I ask the psychiatrist hypothetical questions and then freak myself out by jumping to the conclusion that he just predicted my future. I read MIMS and wonder why my doctor didn’t put me on this or that drug and ponder on whether I would have recovered more quickly had he.

I hate these trains of thought because it shows that I am living in the past. I am scared (not least because of my off kilter moods and thought streams which have hung around for the last fortnight.) I wish that I was in a better place for this placement (and all of the placements because the routine change is really killing me in terms of staying stable.)

So I am going to detach a bit. Not from patients, not for one second. But from myself. This is not life. Not anymore. And I have to remember that.

And The Pessimist Wins Again…

On the bright side, I am fairly sure I owned my French oral today. I got to speak about music to my heart’s content, along with my plans for Oxegen and what I would do if I had lovely sums of Lotto money. On an immense high (my maths teacher had also let me borrow her epic solutions book and equations were working) I came home with a sense of relief, and a new found motivation to work, something that has been sorely missing for the last few weeks.

Usual routine, hopped onto facebook, checked my e-mails and found there a new e-mail from UL. For the full impact of this result, I suggest reading my tales of auditioning here. Note particularly my tone of joy and excitement.

I regret to inform you that based on particular consideration of the outcome of the auditions, the panel was not in a position to recommend your application and consequently the University will not be offering you a place on the above course

Awesome.