And After Denial And Anger And Depression Comes Acceptance

Yesterday’s post was written a day or two after I was diagnosed with fibromyalgia. It was a messy few weeks, of crying and ableism and cancelling plans and haze and tough decisions and more crying. I yelled at people I loved: my mom, Tom, my sisters, God. I pretended nothing had changed with everyone else. Both took a toll.

But now I’m almost a month in. And things are looking up. My worries and fears from July have come to their foregone conclusions for the most part and I am looking for the upside in them all. And life is looking a little like this:

  • Downside: I decided not to go EUDC in Croatia. Upside: My space went to Andrew, who deserves it and will do it justice.
  • Downside: I have been transferred out of Nursing and will not be graduating in 2015. Upside: The college are making what is essentially a new course for me (BSc Health Studies) and I will graduate in 2016. The next year will also be part time, which will allow me to adjust to professional life at my own pace.
  • Downside: Running is a no-no. Upside: Swimming and yoga are still yes-yes.

It helps that two of my dearest people have disabilities, and are up for a venting session when it is needed. It helps that I bought a shower chair so that I can wash myself in peace. It helps that I am getting into a low-sugar, low-caffeine, bed at 10pm routine. It helps that I am taking more me time. It helps to multitask less. It helps that I am taking a break from worship team, and approaching God in a slightly different manner. It helps that the American explains relevant theology (and makes silly faces) when I am upset. It helps to have a mother who does lots of research about fibro and test runs facials on me.

You get to a point where you start being okay with being a spoonie, a fibromite, a pillow fighter, and whatever other cute names online support groups have for their members. You start being okay with walking less and sitting more, less nights out and more sleeps in, less fancy coffee and two more paracetemol.

But it’s good. This is good.

 

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

Waiting, Surviving, and More Than Surviving

It’s been a few weeks, sporadic blog readers. One of those months, you know? Where things are going from bad to worse, and a cycle begins reminding you of all the other bad things that have already happened in your life thus far. The cycle then goes on to speculate on all the terrible things that are inevitably going to happen as your life progresses and you get caught in this storm of desperation and disinterest in anything else in the world.

The latest in is that I have an undiagnosed something. Readers and real life friends alike are fully aware that I give out about my hip pain a lot, and as time has gone on, it has become more of an issue. Now I’m waiting on a rheumatology consult, need to take day time naps to deal with the fatigue, and am relating far too well to The Spoon Theory. It’s frustrating and exhausting and it takes a whole ton of effort to do not very much.

The build up has started: I am tired and in pain, so I can’t get a job, so I have no money. I am tired and in pain, so I can’t work as a nurse so I have to consider transferring into something else, which isn’t dropping out, but feels remarkably similar. I am tired and in pain so I can’t sleep at night and am exhausted during the way which makes it harder to socialise, serve, and survive.

All this happens and it would be so easy to give up. I could just take to my bed and watch Netflix and drink tea and never stir. Which I do some days, and it is absolutely necessary. But not every day. And I have to remind myself, as we all do sometimes, that I have survived the terrible things before. I survived bulimia, and dropping out of med school, and coming out as queer, and being raped, and having PTSD, GAD, and panic attacks, and having IBS (I am alphabet soup apparently), and a whole host of other things that felt like the end of the world (like being broke and relationships ending and growing apart from friends.) I am still here after all of that and so I must keep going. Or all that effort will have been a waste.

I can survive, and more than survive. I can adjust. I have a computer. I write (and get paid now. That’s cool). I have Skype. I have a rent free room to live in and meals made for me, courtesy of my beautiful father and mother. I have best friends who are not in the least bit frightened of all my baggage, and often come to the rescue. I have Jesus, and God’s infinite love. I have hope.

And that’s good enough for now.

25 Ideas To Break The Bell Jar

Incidentally, I like to read the Bell Jar when I am sad. Today was a day in which I wanted to stay in bed (my mother forced me up at 1pm), mope, do nothing, and repeat as needed. So the following is a list of things I do (or at least think about doing) when I feel like the world is closing in around me and there is no air available. Following on from yesterday’s post, it is so much easier to break these spells if you are aware of the patterns your mind follows in the first descent. This takes a lot of time and work and therapy, but you’ll get there x

Practical ideas

1. Shower. Wash away the unpleasantness. Dissolve yourself in just-too-hot water. Water helps.

2. Set an alarm that is out of reach from your bed. This requires you knowing you will not want to get out of bed, but it means you have to get up to shut it up or someone else in the house will get pissed off enough to force you to get up a la my mother, which at the time seems crappy, but in retrospect is great.

3. Make a list. Sometimes I make a list and do absolutely nothing on it. But I feel productive for having made it. Sometimes I make a list of really basic things, like: tidy room, wash self, empty dishwasher, read 5 pages of a book. Ticking things off makes me feel less like a lazy mess, and more like a legitimate human.

4. Play music. Whether this means listening to it or playing it yourself, play it loud and unapologetically. Be emotional. Be silly. Be overly dramatic. Fuck everything. Follow the rhythm.

5. Make sure that you have taken all required medication. Whether this be your anxiolytics, anti-depressants, heart meds, thyroxine, or just your b complex vitamins, take your damn pills.

Hard to start but good to finish

6. Exercise. I know, it sucks. But but but. The endorphins will improve your mood PLUS you feel productive PLUS your body is moving which is good for your health PLUS its a distraction from your thoughts. When I’m super not motivated, I do low impact things like light cardio, walking or yoga. And I pump up the emo tunes and have at it.

7. Look up vague future unplanned plans on the internet. I look up grad school courses and visas to foreign lands, knowing full well that I have neither the means nor the qualifications to do it right now. But it gives me some gist of what might maybe could happen in a few years.

8. Do a 20:10, a la Unfuck Your Habitat. Or do 5:10. Or just pick up your dirty underwear and put it in the wash. Baby steps if you have to.

9. Leave the house. Even if its just for five minutes to walk to Centra to buy toilet paper. The air will do you good. The reminder that people exist will do you good.

10. Talk to someone. Call a friend. Sit down with your mom. Write a blog. HUMAN CONTACT. It’s a scary awful sounding thing, horrible to initiate, worse to maintain, but at the end of the day, there is not beating the support and love of other people.

Avoiding maladaptive coping mechanisms

11. Make rules to avoid the practice. If this means you set a timer for an hour (or longer) before you can engage or you need to attempt x amounts of alternatives before you can use your coping mechanism, try and put something in place to give yourself time to consider the consequences of what you are going to do. For me this looks like: 1. Ciara asking me am I sure I want a drink (often the answer is no). 2. Sitting for half an hour before eating more chocolate (Still a work in progress). 3. Telling someone I feel sick and that I’m upset before purging (which leads to no purging).

12. Use distraction techniques. This is the least useful for me, but others find it fantastic. Leaving the house is possibly the only distraction that works for me. That and college deadlines. If you need something to do with your hands, crafting (especially knitting or crochet) is a great occupier.

13. Make up a similar (but less harmful) alternative. I binge on tea instead of chocolate. I know people who draw scars in sharpies instead of blades. My doctor advised me to snap an elastic band against my wrist whenever I had negative thoughts about my body.

14. Blog. Or go on Tumblr and look at funny stuff and kittens. There are other websites with funny stuff and kittens but on Tumblr you can block certain tags and avoid potential triggers. Huzzah!

15. (Warning: Shameless self plug) Reasons To Not Kill Yourself

Ways to pass the time (when it feels like the day is never going to end)

16. Play Candy Crush. It’s mindless and colourful and you’ll run out of lives within 15 mins so it is not a complete waste of your time.

17. Watch anime. You literally cannot be sad watching Ouran High School Host Club.

18. Listen to Welcome to Night Vale. Its 20 minutes of your life and you will have emotions (mainly positive) at this beautifully surreal podcast.

19. Learn a language. I get these fegaeries to improve my french every now and then, and Duolingo is a super cute way to do it, with sounds and pictures and affirmative ding when you get an answer right.

Nice apps for not-so-nice moods

20. SAM. Its cute, its easy to use, and if (like me), you deal with panic attacks and anxiety, its super useful.

21. Dumb Ways to Die. Its a silly game to make you laugh plus you’ll learn about train safety.

Things to read

22. Hyperbole and a half. If you ever want someone to accurately describe depression in a series of cartoons, this is the website to go to. Just trust me. Just read it. Just go.

23. The Bible (or whatever religious text goes with your beliefs). I find hope and truth and purpose in Scripture. It is a source of good in my life, and there are certainly days when I don’t want to read the Bible, but on those days I want to want to read the Bible. So I pray for the will, for the courage, and know that this too shall pass. If you want to read the Bible but don’t own one, YouVersion is a lovely app. That is also free.

24. I read the Bell Jar by Sylvia Plath because I am a giant stereotype but also because I love it. I love how it so accurately describes how I feel when I feel trapped by the world, I love how much I can empathise with the main character, and I love that it ends with hope.

25. Andrew’s recommendation (and I quote): “Atlas Shrugged to remind me of the power of free market capitalism”

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.

Holistic Health: Weekly Set Up 12/11/12

Why Am I Doing This: When dieting, binging and eating distress has become a significant part of your existence, any attempts to change your habits may still be laced with unhealthy thought patterns. To make sure that I am not taken over by calorie counts, exercise minutes or weigh ins, I am setting small weekly goals under four headings: Fitness, Food, Motivation and Wellness.

How Do I Keep Track: I keep a small note at the end of each day on how I felt I did in each category and also write a quick summary on a Sunday night of what I need to work on (e.g. drink more water, make time to meditate, etc.)

Review of Last Week: The week started off well and on track. Thursday, we received some terrible news and I’ve been completely unconcerned with exercising and food choices since then. I make no apologies. Time to start again this week.

Weekly Plan: 

Fitness:

Monday: Upper and lower body strength

TuesdayRun and core strength

Wednesday: Walk and stretch

Thursday: Walk and stretch

Friday: Run and core strength

Saturday: Yoga

Sunday: Run and lower body strength

Food:

Average 1800-2000 cal/day

6-8 cups water/day

Deal with stressful situations by talking it out rather than eating though it

Motivation:

Write in journal every night

Study for exams

Wellness: 

Meditate 60 mins/week

Meds and vitamins on time

KNIT!

All of the hugs for everyone

It has been a tough week and with exams looming, I don’t see it getting any easier. To the next week!

Holistic Health: Weekly Set Up 5/11/12

Why Am I Doing This: When dieting, binging and eating distress has become a significant part of your existence, any attempts to change your habits may still be laced with unhealthy thought patterns. To make sure that I am not taken over by calorie counts, exercise minutes or weigh ins, I am setting small weekly goals under four headings: Fitness, Food, Motivation and Wellness.

How Do I Keep Track: I keep a small note at the end of each day on how I felt I did in each category and also write a quick summary on a Sunday night of what I need to work on (e.g. drink more water, make time to meditate, etc.)

Review of Last Week: It was my last week of placement, so the thirteen hour shifts did get in the way once or twice. I rejigged some of my fitness plan, but I got everything but yoga done (I opted to spend time with T instead and I do not regret it.) Meditation didn’t really happen, I aimed for every day and and only got about four in. I also got my time in for knitting, reading and music. Food wise, I was on target most days, except for the night before Halloween when I went overboard with the bread and was sick at 4am. That knocked some sense back into me anyway. Here’s to this week.

Weekly Plan: 

Fitness:

Monday: Upper and lower body strength

TuesdayRun and core strength

Wednesday: Walk and stretch

Thursday: Walk and stretch

Friday: Run and core strength

Saturday: Yoga

Sunday: Run and lower body strength

Food:

Average 1800-2000 cal/day

2L water/day

Avoid overeating in stressful situations

Motivation:

Write in journal every night

Complete Health Studies assignment (non-health related goal)

Wellness: 

Meditate everyday

Take vitamins and medication on time

Finish reading Angela’s Ashes

I’m back in college this week, so we’ll see how the changed routine affects me. Have a fabulous weeks, mes cheries!