the second step, again

Going downhill after four months of giddyingly good health is not what I would call fun. But neither is it shocking, or acutely devastating {just moderately}. I actually thought my reaction would be more one of catastrophic depression, because I was having such a wonderful time feeling well, and was wondering if I had an addiction to it. But here’s the thing: I feel kind of normal again.

I know this life. This has been my norm, my familiar, my staple for the last few years. I can slot back into this old groove, as challenging as it is. And now I realise, I have adjusted to being unwell and it happened without me even realising.

It was strange feeling so well. I had to pinch myself, to know if it was true. I didn’t feel like me at first.  It was all so surreal, so sparkly. I would burst into tears if I thought about it too much because it was so overwhelmingly ridiculous to feel like that.  And with it came lots of adjustments for me, and for Ben. What to do, if I did get well? I felt this huge responsibility; now you have health, you need to do something really worthwhile. But I had no idea what because I have changed so much. Our home life was different, our housework roles were changing, our social life was changing, our dates were changing – and even when change is beautiful and exciting, you don’t necessarily feel secure. It’s like when you’ve just met someone you really like, and you are in this crazy hyped state of excitement whenever you hear from them, touch them {even accidentally}, talk to them...but it’s not like the stable, comforting closeness of being in a committed relationship with them and knowing them deeply and intimately. Not that being sick is like being in a committed relationship {although I must say, chronic illness is VERY committed to it’s victims}, but that change makes you feel a little uncertain, and tips you out of the groove for a while. 

If most of the things that come with being unwell are nasty, at least there are a couple of pros. One is the comedy of my brain. Most days at the moment we get some serious laughs from the things that my foggy brain verbalises, particularly at night in bed when it’s at its finest. It was a bit boring when I could say what I meant first time. 

And then there is lying on the couch with my dog. It was so odd seeing him lie on the couch while I was up and about, and there is something very precious about his cuddles and his loyalty. Other perks include getting to drink more cups of tea, and....I actually can’t think of anymore pros right now, but the point is, when you find yourself on the second step of the staircase, after having been near the top, at the very least you have been there before and it’s not new and it’s not scary.

And you know that it is possible to be well, and you know that you were loved and comforted last time you were unwell and feeling like a complete mess, so you settle down to hope and wait. 

please pinch me, hard

The sky has no colour, no life, just a melancholy and listless gray which permeates all that lives beneath it. Survival is possible, but I don’t think radiant joy is. 

Bit by bit, it peeps through, that soul and earth warming star, the sun, and makes every living thing sparkle. The sun stipples the trees, it warms my back, and it makes all living things want to live more. Golden and beautiful.

That is how these past months have felt, like glorious warm sun kissing my skin and hair, after an eternity of weary, depressing gray. 

I am a lamb frolicking in spring, with fresh vigour. I have taken wobbly steps out of a dim-lit hovel in which I’ve been trapped, trying to survive; into fresh air. I am a bird soaring in the skies. I am intoxicated with the blessing of health. Always in my mind is the gray sky, the dungeon, but revelling in freedom is so much sweeter for the suffering which came before. 

The absence of continual pain is shocking. Why don’t I have a headache right now? Why do I not need to rest after seeing those people? Why have I still got energy, after such a busy week? How come I haven’t collapsed in bed feeling ill, dead? Why haven’t I needed those drugs and a trip to the pharmacy this week? I begin to measure my good health in weeks, and months, rather than hours. It used to be, “I had a well hour this morning...” now it’s “well I’ve kind of had a well month”. That’s kind of 720 hours. Not all of them well of course, but overall. 

Am I sane? Please pinch me hard, because I don’t want to wake up and find it was a dream. Alive. Not half dead, as I am accustomed to surviving.

“I feel like me again, the real me”, I keep repeating to my ever patient husband. He is excited, amazed, and curious, because he has never met the old me. I think he likes it. A lot. It's kind of like Snow White waking up, and she can finally kiss her prince back.

When did I last sob for my despair at the awful endless illness – for doctors who couldn’t help, for years ticking by? Rather than crying to God for healing, I pour out my thankfulness.’ Thankyou’ never ever does it justice, but I know he knows that overwhelmed feeling I have in my heart. He doesn’t need me to articulate that feeling.

I feel excited that in two weeks I will turn 22. Somehow celebrating a life of health excites me a lot more than recognising another year of survival, of patient (or not so patient) endurance.

I just realised, I’m not enduring life at the moment – I’m actually living it. 

And if I do relapse? At least I will know this is possible, this is an actual reality for my body. But I don’t dwell on that thought; I’m living here and now in these sunny days without blighting them with fears of the night.

grief

picture source

 

i lie on the couch for the hundredth day

the flat is so silent, so still, so alone.

my heart feels this grief it cannot say...

i wish for a voice and i wait by my phone.

how many years will this illness linger on?

i hoped it’d be two, but it’s already three,

i wonder if sobbing would make it be gone.

i want to feel well, live a life pain free.

i long to study, to walk out that door...

and not return home till 6 pm.

 then flop on the couch, and not be sore,

and spend the evening with energy spare.

i have a good week, and i dare to hope,

then a rough patch which knocks back me down.

sometimes i feel i cannot cope -

in this storm, in this black, i might drown.

i used to be strong – to study, to work

but now i can barely remember those days...

my whole world has changed, greyness lurks,

and i feel this sorrow as my body decays.

why was it me? and will i get better?

and how do i keep plodding along?

i wish You would tell me, write me a letter.

i struggle to smile, to laugh, sing a song.

but there is a glimmer amid the pain...

that helps me strive to dance in this rain.

this life is a moment compared to the next.

This is my sickness song. It's worth the listen.

praise you in this storm 

by Casting Crowns

Relapse?

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When should I let go of something I’d set my heart on? When is it too costly to be worth the sacrifice? What will I do with my talents with so little energy? What does tomorrow look like?

My husband is in his final year of his degree. We often talk about next year when he will be an intern in a hospital, and the following year when he will be a fully qualified Radiographer. I get clucky  thinking about his graduation and how proud I will be of him in his black gown....we marvel at how it will feel to have an income at last...how we’ll save for a car, and a home loan, and a holiday...

 We have plans and dreams in the bucket loads. Mainly because we assume that he will be alive and capable of all those things. We used to have the same kinds of plans for my life...I was going to finish my Bachelor of Music, do my Honours, possibly go overseas and then work for several years before trying to have a baby or two.

But when we make plans, we really don’t know for sure if they will come to be. The future is so unknown, so utterly out of our hands.

I honestly don’t know what I will be doing in 6 months time. In the past few months, I made huge progress with my health and it looked right for me to go back to university and re-sit my 1^st Year flute recital. I was keen to get out of the house after a year of being homebound, keen to have flute lessons and square away the first year of my degree. Infact, I am keen! My whole heart yearns to do this but I don’t know if my body is feeling the same. I wish it could talk to me.

*Croaky voice, “ Deee-ee, I’m not ready. It’s too much...”

 I’m only two weeks into this experiment, but so far I’m rather befuddled. I hope my next post will be announcing that I am feeling great and loving being back, because right now I feel that my body has regressed – maybe I’m having a relapse?

Since returning, I have been feeling really unwell. I’ve had migraines every evening, afternoon sleeps, insomnia, nausea, weakness...a whole list of yuckies. To be perfectly honest, I’m ok with feeling like that – if I can stay home on the couch with a blankie and a cup of tea. It’s hard, but it’s tolerable. What I don’t like is lying in bed knowing that ideally I would be at class, or practicing. That’s stressful.

It could be the antidepressants I recently went on, but now it feels like POTS/CFS. And it could be that my recent virus has given my body a bit of a shake. But I don’t know, and only time will tell me. If it turns out that going back to uni has retriggered my illness, maybe I won’t try to finish the remaining two years of my degree. I never thought I’d write that. I thought I would just get better, 100% better, and carry on where I left off, with a few lessons in patience and hardship under my belt. But lately I’ve been thinking that maybe this journey will be longer, with more peaks and troughs than I expected.

It’s a quality of life issue. I could potentially limp through my degree at a painstakingly slow pace, and hobble up to claim my certificate five years later....before crawling back into bed for the next few. But I don’t think I want that. I think I’d rather go, “Alright, things haven’t panned out according to my dreams and plans. I can accept that, and I’m going to pursue a life I can cope with.”

And then I wonder, what could I do with my limited energy? Could I make cards and sell them at markets? Could I write? Could I invest at home more? Could I still have flute lessons and practice?

Could I learn contentment?

"It is a big mistake to boast about what you will do tomorrow because there is really no way of knowing for sure what will happen."

Proverbs 27 : 1