Friday, February 24

a week in the life of yours truly

The eight years of Chronic Fatigue Syndrome gong boomed in my ear earlier this month. I felt mostly numb, and talked about it with no one. I thought it would be a two year blip when I was eighteen, because that was the word on the street, but a decade looms. I think how hard existing has been, and I think how eternally grateful I am to have met my man and carried a baby, because this has eased the sadness 100 fold.

Charlotte Bronte says things how they are, which is why I adore her words. She writes in Shirley:

Men and women never struggle so hard as when they struggle alone, without witness, counsellor, or confidant; unencouraged, unadvised, and unpitied.
And while I have felt acutely that I am an invisible minority, I have also had so many encouragers, advisors, and pitiers who have made eight years far more bareable. I want to list their names here but I would probably omit one and regret it, so I list them silently in my head.
I've been sick in a comfortable home with a full fridge and kind friends. This is not the way some people are suffering, and my heart aches for them.

I remember earlier times of this disease being acutely intense, and other times where I had a little business and stayed awake all day. This is a snap shot for my own memory of now, eight years through. I say through because the notion that I will pass through to the other side of this still lives in my heart, especially when I see how far I've come. 


It's chill, and grey, and I am utterly exhausted from feeding Aurelia twice in the night and having insomnia. When I had at last fallen asleep, she needed to be soothed with milk at 12am, and I had to fall asleep all over again. It was a gutting experience, to be repeated soon after. 

I feel ghastly, heavy, weak. And numb inside. I don't know how to smile. I don't think I can endure the day, hour by tortoise hour. Is it the grim sky or the sleepless night which makes me so sad? Duty is the only force in my body today, and it is a stodgy one. I feel so weak that turning the steering wheel into our driveway is challenging. I can scarcely believe it's powered steering. I wish for help, but it's scheduled for different days. The last part of the day is spent lying on the couch while Aurelia brings me books and I try to be entertaining whilst horizontal. She hides her cat puppet up my top, and I make it meow till she takes it out. I try to smile and laugh for her sake but it is so forced. 
Ben gets home and I tell him I am so low that I don't want to be alive. These conversations don't alarm him too much, because he knows I am rarely hopeless for long.  

"God surely did not create us, and cause us to live, with the sole end of wishing always to die. I believe, in my heart, we were intended to prize life and enjoy it, so long as we retain it. Existence never was originally meant to be that useless, blank, pale, slow-trailing thing it often becomes to many, and is becoming to me, among the rest." Shirley, Bronte. 

I didn't think I could go to ballet, but after he has taken her and I've had a hot drink I decide to beg my body for an adrenalin rush if it won't give me any at home. After a whole day of no strength I want a shot of it, to cheer me. I want to prize life and feel fully alive, so I go to ballet, initially weary and melancholic. Concentrating so fully on finesse and defying gravity breaks my mind's focus on monotony, and I come away with very sore feet and glutes, but uplifted spirits. 
Tonight I drift off easily. She feeds twice again, but I sleep in between. Its the first time since I began classes a month ago that I have slept normally afterwards. That means my mind has finally processed the experience: it has defibrillated ballet.
I'm elated when I wake and realise that my brain has made peace with an outing. 


No insomnia. Sun is shining. My mental optimism is powered almost entirely on sunshine and sleep, so I am like a different person. In the past month I've been couch or homebound on Tuesdays after the exertion of Monday night, as my body tries to replace the resources I extravagantly poured out. 
Today is different. I don't have a hangover. I'm not seriously energy deficient which makes me wonder how much of my hangover has been related to those shocking nights of my mind processing ballet though wakefulness and vivid dreams? How much of my hangover is due to muscles healing? My muscles don't feel too broken, so perhaps that's why I have more strength. Do more broken muscles mean worse sleep, because my body pours resources to my muscles instead of into sleep? I know full well that it takes energy to sleep well, a strange oxymoron. 
I always nap for 2 hours (or a measely 1.5 in this case) in the morning with Aurelia. I can't stay up all day, or I wilt and collapse. After this I go out with my adorable toddler to the park, and it's so much easier to wield the steering wheel today. Less muscle malaise, more smiling, and most notably: no thinking I can't get through till dinner time. That is the hallmark of a very very good day.


I think my throat liked that we got to sleep from 12am -6am without interruption. It felt nice and friendly in the morning when I swallowed, which is rare. I decided to scrub our poor scummy shower before our nap, which was a tiring exercise. I wanted to sleep immediately after that, but Aurelia needed significant and lengthy help to fall asleep. Aurelia was cared for in the afternoon so I could go to the gym. I really just wanted to go and lie in a park and drink Remedy Kombucha while she is not my responsibility - but, self discipline wins. My gym program is helping me feel strong, and go to ballet, and avoid neck issues and migraines. This program is the most effective thing I've done in five years of gym, because it is designed so that I won't have bad muscle malaise afterwards whilst still being very effective. {Keiser Training}. I fight my lazy side hard through this hour. It moans and groans to me incessantly and so I have to engage in mental warfare which it is all the harder because the exercise bikes look onto a pizza establishment and I see happy people who aren't sweating going in there. They really do look happier than weedy me and the protien guzzling hulks. Pizzas have protein too. When I get home its hot and I'm feeling like shakey jelly. I flop round on floors and couches while my girl is entertained and keep on flopping till dinner and beyond. Overall a good day despite an energy-free afternoon, because it passed without a 'can't make it through' crisis, I had a helper and companion, I did what I needed to.

What a night. I was still awake at 12am tossing in the heat when she first woke, got some sleep before she woke again at 4.30. I dread opening my puffy eyes and swallowing. Today it would be better to just lie in oblivion, but I have a toddler who comes in giggling to show me her dog book. Ben doing the dishes for me before work makes me feel slightly less distressed about living today.
I'm really too tired to write much tonight: this is rare brevity for me, tis not my strong suit. We made it, just. My mother came to mother my young, and I brought veggies. I didn't feel too sad. Bed is nigh. Goodnight. Please may it be good.


Today's struggle is brought to me by Aurelia's howling at 12 and 3, and my trouble getting back to sleep. (I only know these times later when I ask Ben because I have a strict no-clock rule). My difficulty falling asleep and need for a lot of it are hallmark CFS symtoms, and the main reason we were terrified to have a baby. Truthfully it has been as hard and harder than we imagined, especially the year of vertigo. Yet here I am, 16 months of broken sleep later, and arugably more well than I was at the onset of my illness. I used to be just as sick on 11 hours sleep. There is no way I could have stood without fainting or lived without a deep headache under these conditions in past years. Certainly I am under the weather today, but there are degrees of it and I have been worse from almost no exertion. CFS does not remain the same in eight years, there are slow shifts backwards and forwards.

When Ben drops her in my room as he leaves for work I still haven't opened my puffy eyes or lips. He leaves his work number by my bed because we both know that I may not be up to caring for her properly. I need too many sick days and can scarcely have one.

I'm just hoping I'll be well enough for the things we have on this weekend. Not that hoping is an effective thing. I am more accurately consoling myself that a lot can change in 24 hours because I've witnessed it many times. Celebrating Ben's birthday is one of the weekend activities and I baked his cake 10 days early because I knew I may not be gifted with health on the right day/week - I've learnt after the last two years of being caught with no cake for this reason and feeling like a horrible wife.

My sister's piano student cancels, so she calls me and asks if she can help? This is the kind of unexpected thing I have grown to expect, a perfectly timed kindness, and I agree.
I'm ragged, but I'm still feebly kicking, and Aurelia's kicking and sometimes screaming. I'm pretty grateful that this week is over.
It could have been worse, if I'd had a glandular flare, headaches, or events to attend, but it was very sleep deprived. Ebb and flow, wax and wane, up and down - I know better sleep will come. Goodnight.

No comments:

Post a Comment