not to be pitied

from here, via pinterest

"Sometimes I feel like we are the lucky ones."
We lie in bed before he slips off to spend the night tending to our offspring.
"I think that too."

He had just applied to drop back to part time work for six months. At first I was dark and brooding over it, the fact that ill health was robbing us of societal normality once again.
Us, not just me. That made it even worse.
It passed, like an angry cloud, when I saw the sparkle in his eye.

We have thought for years, there is a significant upside to living in the slow lane, keeping life a gentle pain-managing whisper. We have many an hour on our couch* becoming closer than we ever imagined, more united and delighted with our companionship, more than we could have if my body roared all day and into the night. It trickles down into the next generation too, time and ensuing fondness, which exists away from the hurry and scurry.

Sometimes the miserable path where you get stabbed and almost beheaded by an onslaught of low lying branches, has magical foliage not found on other paths. We get time and closeness.

Not a creative career, not as much money, not many pain-free days, but something so lush. '

* sans tv, is the key

i want to be the mother

Motherhood is taking the most vulnerable little person under you wing, and keeping it safe and fed until it’s ready to venture forth. It’s giving and giving and giving, when you long to be admitted into the hospital and nursed yourself. For someone who has struggled for many years just to shower and feed herself, it’s outrageous to turn around and give my sparse feathers up to a scrap of babe. I’m shivering, wanting to be wrapped up, but giving that blanket away. I sometimes groan, ‘I want to be the baby’. I get occasional bouts of jealousy. My friend has abbreviated it to IWBB, for ease of use in messaging {also known as mother’s group for the sick}. Who wouldn’t want to be fed, hugged, bathed, carried and gently popped to bed on repeat? That’s all any sickie ever wanted.

Apart from getting better.

But really, actually, not very deep down, I want to be the mother. IWBM. It’s painful yes, but strangely cathartic. I am the carer, for once. I get to love on her the way I want to be loved when I am a vulnerable inhabitant of a painful body. When I fold my arms tightly around her, I am stronger than my illness because my heart is acting. My heart is what motivates my aching arms to respond to her cries for me, and bundle her up. I like that there is more to me than pain and disability. There is fierce love. Sometimes the two wrestle it out, and the pain punches my heart and tells it that it is stronger and I can’t give anymore. I can’t give with vertigo, I can’t give with fatigue. But it underestimates the heart. I haven’t had to grapple with parenting books and styles. It’s instinctual, and it has been shaped by what I have learned through my walls being broken down and becoming weak.

It’s gentle. There is enough life ahead of her brimming with disappointment, raised levels of stress, tears. I will nurture her like she will only be an innocent baby once. Ben and I mock parenting labels, but then go ahead and name our style ‘low cortisol parenting’. Or shall we paraphrase it with this sleek version: ‘Actively minimising adrenal stress in infants because life gets hard fast parenting.'

As she grows she will learn that her mama hurts, that every family is a bit different, that her well papa struggles, that not every smiling face is feeling fine. She will find that life is messy, imperfect, uncontrollable, and at times downright miserable. But the answer to the sadness is love coming vertically from above, and horizontally from us. And it’s tender. It lessens pain; it keeps me soft instead of bitter. It lets me give when I’m hurting. It’s the reason that I want to be the mother. 

you don't know that you're toxic to me

A post I wrote three years ago. 

You don’t know

that you’re toxic to me.

Even you, my close friend,

my incredible family.

You don’t see how I hurt

after we’ve talked. As we talk.

How I ache and burn,

How I lie and wait.

You cannot watch,

as I mend myself.

In my private space.

I long to be with you,

you give me joy.

But oh, your humanity is something my body

cannot tolerate. Anymore.

You stimulate me,

violently,

unconsciously.

I leak, adrenalin.

My head, my ears, my heart,

Hurt.

you assault my senses,

overloading me with sight

emotion

scent

presence.

You can’t see my inward battles.

I need you to leave

I feel unwell

Yes, even with you.

But I feel so rude

that I hide my pain.

Or I want to keep talking

despite the discomfort.

I pretend I am normal

but it always destroys my health

a little, or a lot.

I lie to reassure you.

I lie far too often.

I fear telling you the truth,

That your body affects me detrimentally,

of my fragility.

That you, even you,

overwhelm me.

I limit my friends, I can’t always invest

I can’t bare interaction

often, for long.

We ‘need’ to catch up,

that’s what you say.

But those words make me shiver.

No. We don’t.

Don’t oblige me with ‘need’.

Don’t say ‘it’s been too long’.

It’s not long enough, for me,

if I’ve been silent.

You who just wait and gently offer yourself,

when I’m ready.

for however short a time,

without asking for more,

You are the sunshine.

In your patience, your subtle communication,

you restore me

from the terrors of interaction.

You never ask for more than I can give.

You know that you’re toxic

to my body.

I wanted to read it after writing a message today which said something like, thankyou so much for wanting to encourage me, but in person that will exacerbate my pain, can you write it? It's a tough patch. I smile as I read this post, knowing that in the years that followed it, there were seasons where my body was better than this, and there will be seasons again. I smile because now more people than ever know that my body shrivels with stimulation, and they love me despite it. 

 

malaise

nota bene 

Not every day is like this. Some easier, some harder. But days have been like this in school, university, years of no occupation, and motherhood. This is cfs in all circumstances.

So I guess we can get through today because we got through other ones. God help me.

Linger. Linger on every bearable moment. Whenever you can be still, just stay an extra second.

Relief. She is hungry. May this feed last forever. The longer she quietly drinks, the longer I can sit here not moving.

Oh no, a nappy. I’m going to get up and change it, I can do this. I’m going to force my dizzy, headachey eyes to look right into hers instead of blurring out on the white wall. Focus takes focus. And if I smile, can she tell that it’s a physical strain? Can she see the love behind the wasted face it’s coming from? I really hope this smile seems normal to her because it’s abnormally hard to produce.

Fed her to sleep, well and truly, transferred her to bed, all is quiet. No strength for different methods. Now I lie here, and if this could last two hours, that would be two hours of not looking after her, and two hours closer to the end of the day. How sad to count down the hours like this, when these days are precious and irreplaceable. Please, please, last two, it’s the make or break.

No, no, no. Don’t wake. Don’t stir poppet, I love you but I don’t think I can do this. I need to lie here longer. Oh help, I have to pick you up, and even though you’re really as a light as a feather and mini for your age, you are like bricks to my arms.

Malaise, is every cell dying everywhere.

It’s not you, you’re not a burden. It’s me. I’m a burden to me. Physical burden to mental me.

Smile. Sing to her. You don’t have to see the world clearly to pick her up and sing. She can’t tell that it’s strained, don’t let that hold you back. Ok, I feel horrendous. I can call Mum, or my sister if it gets impossible. Tell them my body isn’t working. More water. I’ll carry her to get another glass. Is it worth the trip? Ughhh. No water in the waterfilter. Have to carry it to the sink, so dizzy and wasted.

And now to tidy things up. Move one leg, move the other. This is possible. But this is too grinding. Possible does not mean pleasant, this is awful. I don’t feel like existing anymore. If I said that would people think I’m depressed or would they realize my body is just not functional?  

Just exist for the next half hour. Not the next day, surely you know this by now? Better days will come, there is always variety. Too many Acute Fatigue Bertie Bots Every Flavour Days. What a privilege to have a baby despite the illness though. And to have no regrets, to have fed and loved fully despite the pain. But should we have done this? Stop questioning that. She is meant to be, because she’s so incredible, because she came to be. Stop thinking about the future, each day has enough trouble of its own. I’m tired of worrying I can only endure this once in my life. Why can’t dogs count as siblings for real.

Get the most easy filling lunch possible. I feel bad that its leftovers Ben could have taken to work, or we could have had tonight, but no choice. I leave this kitchen with dishes piled high, unrinsed.

Another half hour has passed. Celebrate inside. Yes. Yess. Not crying yet, maybe we can make it till Ben’s return. But I can’t keep dangling toys and picking her up, my body isn’t working. I can’t do that for three hours more, and the sleeps are over, and what on earth am I going to do?

I’m going to load her into the pram. I’m not up to this, I’m really not. Goodness she looks mini and precious in there, I just love her to bits and pieces. Walk slow, if I could get this to last a whole hour, then it would be late afternoon. Come on legs. No, stomach you are not actually nauseous. Ok, maybe you are, but you can’t throw up here. Look, rotunda in the graveyard, I’ll sit here in this morbid place and simulate walking for a bit.

Home now. Dry retch in bathroom. Drink water. Epic time passing, excellent. Was that easier than holding at home? I wonder. This is the last stretch of the day, we are nearly through, can you believe it?

Standing in the front yard waiting for co-parent. Actually, let’s show her flowers. I don’t want to seem crushingly desperate, so I’ll go inside, and wait at the window instead. He must be here in about one minute. Yes, hello, I hear the garage. Ask about his day while subtly handing him cherubina. Lie in coma on the couch, maybe if I do, I’ll have the strength to feed a few more times before bed.

The problem is, she needs to be entertained while dinner is made. I’m not up to cooking, or baby minding. Takeaway or cry, I’m not sure. Maybe tomorrow will be different, will some strength be granted me before the 1:00 am feed, or the 5.30 am feed? I’m not sure. It won’t be like this forever. I just need to lie. Malaise.

bookshelf fire just happens sometimes

Thanks to a stranger on the internet for articulating things so fantastically well. 

going to the doctor when you're chronically ill is wierd

And, thanks for making me ugly laugh so hard that my five month old joined in. She will get accustomed to seeing me laugh and then sob about chronically crappy health.  

the situation I was in before I got myself an earning husband

To have a baby with chronic illness, or not

I think we had this conversation two billion trillion times. Ben squirms when I use nonsensical numbers, but I really need to, for expressive reasons. In my acquaintance of people with the same illness, the majority are not partnered and do not have children. I am privileged to have been in a serious relationship before my illness got serious. However there was one friend with ME/CFS who urged us to have a baby. She was the one who had cleared out every baby item after her firstborn, vowing never to go through it again. Three years later, she bought it all again and welcomed a second baby girl. Despite her encouragement and our longing, the idea of introducing a baby into our just-floating existence was frightening. The possible health cons list was just as long as the pros; it was terribly unclear. People twice my age say they are far too tired to look after new babies; yet my beautiful fifty-year old mum has at least double my energy. I’m on a par with my grandma.

If an idea won’t fade from your mind, it generally needs acting on. So we took the plunge. You’re supposed to do radical and ludicrous things in your youth, and we chose the most risky thing we could conceive.

Having support back stage, that is crucial. A few days before the appointed birth day, Ben got the flu and collapsed twice in the kitchen. This was a huge concern for us, as we knew he wouldn’t be allowed in surgery or Special Care Nursery with the flu. He took time off work, and our parents cooked so many soups and dishes that we were both able to rest and recover. Our lawns were done, twice, our dog cared for beautifully. Mum sat with me for hours on hospital days, and drove me around. We should probably have asked for support earlier in the horror that was my first trimester, but when we did, it was there. When we had our daughter, between our church family and our blood family, Ben didn’t have to cook for over 5 weeks. It was astounding. My private midwife visited and messaged me till I felt confident. There were so many valuable pieces in our support puzzle.

Harder is the lovely tradition of visiting new babies. It’s theoretically really nice. I simultaneously wanted it and couldn’t handle much of it. There is a real irony that you have insufficient energy for visitors at the best of times, and then at the worst of times, surgery and newborn, you have more visitors than ever before. Your gate keeping skills need to be honed before, or rapidly honed during, because otherwise there will be an extra sick, very teary mother. It’s ideal to share new baby cuddles, but when life is not ideal, something’s got to give. I wish more people could have enjoyed her newness but Mr. Baruch was onto something when he said that ‘the ones who mind don’t matter, and the ones who matter don’t mind’.

While I was pregnant, our main concern was how we were going to keep a tiny person cared for at night. We decided that flexibility was our strategy, we would do whatever worked. If we needed to co-sleep, we would do that. If she needed to be formula fed so that our mum’s could do night shifts, we would do that. Our night regime evolved after I developed vertigo. We were the couple who had never spent a night apart since we got married, but we found that if Ben sleeps out with her and brings her in for a feed, I have the strength to care for her during the day. He deals with grunts, re-settling, and checks for actual hunger, so that my role is milk-and-milk-alone. At first he started on the couch, and then we resigned ourselves to the regime and borrowed a mattress. It’s kind of sad, but it’s also kind of awesome that as a team, we have a breastfed baby girl, a mama able to care for her during the day, and a papa young enough to be able to cope with work too.

Would life be easier for me if she were bottle fed? Yes. It’s a hugely personal decision for sick mamas. But as with all decisions, mine came from the journey I have been on, a journey of sickness. I don’t feed in spite of my illness, I feed because of it. I longed to give her the gift of breastmilk. It’s the earliest gift of health that I can bestow, my body has made plenty of it, and so we are prioritising it. I have unresolved feeding pain, but that’s another story.

In the day time, I am grateful for a baby who sleeps. I lie down for all her sleeps, three or so hours a day. If she didn’t sleep and did cry, I would need her grandmas to let me get a daily sleep. But our quiet life, it works best for the two of us. No there aren’t many outings yet, but that’s ok. I’ve been mostly homebound without a baby too, and this is 100% better. When she’s older and drinks less milk, she might go to her grandmother’s houses for plays like her namesake book, ‘Marigold in Grandmother’s House’. She might sleep through too, breastfeed less, and I might start to feel better again. We were given a placid little girl, sparkly, but not fussy* or teary. That’s the best gift you can be given when you’re underpowered.

It has been extremely physically challenging despite flexibility and support, but emotionally, there aren’t words for how grateful we are to have Aurelia in our world. That leap, it hurt like nothing else, but it also took our lives up numerous notches on the joy scale. There is more laughing, singing, goofiness and hugging in our home than ever, groans followed by euphoria, and fulfilled sighs at the end of the day. Worth the risk, and a season (or eight) of extra-ill.

* She was not fussy for the first few months, and then immediately after I penned those words she took up five-month-old extensive grizzling and all day demands, I suppose because she is too grown up and bored for quiet lying and happy bouncing anymore. Sparkly and fussy.