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. 

131 days

It came. 

I choose to record it, because I will need to know again that tunnels do end. One day I will read this in the dark, and it will remind me that storms, tunnels, crap and all the other analogies for bad times, they will not endure forever.    

131 days after birth, came a day with no vertigo, mastitis, or virus, and Goldie, Ben, and I slept till morning.
There is a time to dance, and now is that time, with a few plies and some rusty happy allegro. And the little dove just coo-ed a major third, so there's music too.

normal

I’m on the couch, baby at the breast, Tchaikovsky playing on the stereo. Huge eyes stare up at me, searching mine, and on being met with a smile, she unlatches to return one. I know it’s better than the one I gave her. I’m swamped in a surge of such great love that I need to eat her.  I resist because of the same love. I’ve just been laughing because the drool was pouring from her chin as her eyes nearly popped from her head staring at the cushion with birds, her favourite one.

My new normal.

I’m not sick and lonely anymore, just sick.

My throat is lipstick red, with lumps. I knew well before I looked in the mirror, because I woke repeatedly from the pain of trying to swallow all night. It coincided with the first night she had slept nearly eight hours. How could I miss this first chance at real sleep after 130 broken nights? The cruelty of missing out slaps me in the face. I rage with the unfairness. I’d just been celebrating that mastitis and its aftermath was finally going to leave me in peace. The vicious scabs took far longer to heal than my doctor or lactation consultant was familiar with. I fed round the clock, biting my lip, using birth breathing, and rocking back and forth vigorously, like an overwhelmed child; ostensibly for her, but entirely for me.

Now that the pain was lesser, and there were fewer fully dizzy days, hope was peeping through the cracks. Maybe these months of extra-suffering were about to ease, and I would drive my car to walk in a beautiful spot. Or, bake a cake for the first time since having her. I felt like I was just taking a tentative step out of bliss-dark-land I’ve been in for months.

That’s why my reaction to the raging throat was more despairing that a cold should really produce. Melodramatic, to be honest. That’s why I didn’t feel refreshed when she took her longest sleep ever, because my other full time job, existence in this body, was in full flight all night.

I lie in bed, lemon tea with Manuka honey to soothe the pain. Drenching myself in facts to gently appease the powerful feelings. Truth, that I am loved, I am not forgotten, that the virus will pass, and I may still be able to go and buy my husband a birthday present this month. Fact, that these days are still ridiculously precious, they don’t need to be pain-free to be meaningful. They don’t need to be normal to be precious. This is far more meaningful and precious than driving my car, going to yoga, seeing my friend. I’m only missing out on the things I used to do with an unsatisfied pang.

I can hear a cooing dove from my bed where I’ve been conducting a little fact-based therapy. I have felt my pain, and now I go and look at the little poppet lying in her cot talking to the pom poms I made her. I get another day of full time smiling and singing, and she will do those things back to me. My day will be interspersed with moments of physical grief, sometimes despair. Followed by fact.  And then it will all be overridden by joy at unexpected moments, over and over.

My new normal. 

on vertigo and not socialising

I’ve never been blasé about the merits of being able to touch type. Ten years ago on MSN, it facilitated high velocity MSN conversations, and today it allows me to write this blog with my eyes closed on account of the vertigo.

Today in my appointment, which my mum had driven me to, I found myself feeling increasingly unwell. My thoughts began to flit from the conversation, at first missing only a word here or there, and then missing whole chunks. Where am I going to throw up? My mind obsessively probed the room. Aurelia was out of her car seat, and I was bobbing her up and down on my knee to keep her from crying, the motion intensifying my nausea. For some sick reason, my mind saw the bowl-like shape of the car seat and seriously considered it as an option, before spying a bin under the desk. While trying to produce the right amount of ‘Mmm, yes, yep’ sounds, which I can only assume were not being dispensed at appropriate moments in the conversation, I was fixating on that bin. I could grab it easily, it was perfectly nearly empty, the beauty of a morning appointment. It would be faster than trying to get a plastic bag out of the nappy bag, although the plastic bag belonged to me, and the bin did not. I was beginning to perspire, thighs stuck to the chair; it is so hard not to hurl when you need to. At last I managed to interrupt, “I’m sorry, this is a bit off topic, but I’m not feeling very well and was just wondering where I should go if I need to throw up?” And as I had hoped, she immediately offered the bin and placed it closer to me.

It has been eight weeks since I shuffled into Emergency holding onto Ben. The nurse who called me from the waiting room looked at the notes, and then the pint sized baby. She said, “So, she’s 24.....” and she was about to say ‘days’, but knew couldn’t be right based on the size of the baby. Then it clicked that I was the one with the problem, the new mum, and no, it wasn’t a haemorrhage as she suspected. I performed like a drunk when asked to walk and tiptoe, and as my world swooped around, I was grateful for the testing and the validation that yes, I had vertigo. Why, I asked? Is this a common post partum experience? The doctors said that sleep deprivation can have unusual manifestations in those with Chronic Fatigue Syndrome, and they thought it was one of them. Common? No.

But of course!

Some days I feel well, almost vibrant. But if I have a bad night, this combined with the last seventy nights {that is a lot of nights}, brings on the swaying, as does leaving the house. I stagger to the toilet holding onto door ways. I am nauseous, with lack of sensation in my hands. There is no cleaning, driving, crafting, or walking. But there is a trail of guilt. Guilt that family members haven’t seen much of Aurelia, because of me. Guilt that I am always an apology at events, always delaying catch ups, always needing a lift, always spending money to get help, always perceiving an obligation to share my beautiful baby and needing to keep her in my arms at home.

‘Stuff people,’ says my husband, who is the antipathy of a people pleaser and unchanged in fatherhood. It’s the nicest thing to say to a new mum with vertigo.

A new chapter has began. 

The one where I have to re-learn how to live not only as a woman, but as a mother, in a society designed for the busy. Like that mother and baby group I’ve been put in, which meets at 1.30 in the afternoon.  Are you actually telling me that mothers are awake at that time? And the maternal and child health nurse genuinely thinks that my three month old needs the socialisation? Because I kind of think we could all do with toning it down, and sitting in peace in the sunshine, and not doing from time to time. Maybe in some painful way it is good that I still can’t run on the western conveyer belt, so that I can show my daughter what it is to just be, and to be at peace with being not performing*. If she hops on, she might struggle to ever hop off. And who said the conveyer belt is even headed in the right direction? 

* If I can ever grasp the concept for more than a week.