Monday, 18 December 2017

Life On Steroids

This week my blood crashed. I ran out of platelets, which means I basically stopped clotting - quite a whoopsie, medically speaking. After a day of hanging around hospital trying to study while my wonderful friends and family cared for my children, I was put on an 'astronomical' (my GP's term) dose of steroids to sort me out. Which has worked, pretty much. I need to stay on them for a while, which is not a fun prospect, but I am learning a lot about myself in the process.

For a start, I am not - and never have been - lazy. Sometimes I look at other people's lives and wonder why I can't summon what it takes to achieve what they do. I can really blame myself for that, especially if I imagine my girls are missing out on something. But it turns out that as soon as I have energy I use it to do all those jobs I have been planning to do 'when I have a minute'. When you can't sleep, you have a lot of minutes. So once I am off these drugs, I will endeavour to be kinder to myself. My autoimmune stuff comes with fatigue and that is not a moral failing - just a fact.

Right now, for example, it's 11:45. Downstairs is a wonderfully enormous spread of presents I am giving this year, in the process of final organistaion - last wrapping, checking siblings have a similar pile, double-checking everything I ordered has arrived...but I am not downstairs. I am upstairs with Manna who has woken as her chicken alter ego and is lying in her cot, requesting "book, book, book". Normally I would stand by her until she slept again, or sit on the bed and read if it took ages, but tonight I have seized this chance to write the thoughts I couldn't capture earlier. The difference between being glad I can get something done rather than relieved I can do nothing for a few minutes has an enormous cumulative impact. I wonder if I can teach myself to be more productive after this.

I am also less careful, less particular, less afraid on steroids. If I haven't got time to clean something properly I will give it a quick wipe - much more effective than my usual perfectionist ploy of leaving it until I have time to be thorough...which can take a long time. Bish bash bosh is the way forward.
And the fear: I had a spider encounter which would usually have put me into a phobic state, but I barely flinched. I still needed it out the house, but I could put it out gently and pragmatically. I have since learned that my cortisol is suppressed by these drugs, which makes perfect sense.

And I am not sleeping enough. I have a body knowledge of a deep exhaustion, but I am restless. I cannot stop or sleep like I need to. It is 1:15 now. Manna is silent and wide-eyed. I am much the same. I understand why they wean you off these so slowly - a crash now would be from a dangerous height.

So it is good to be achieving things - I don't know how else I would have got ready for Christmas - but this is not sustainable. The biggest loss is being unable to match Manna's pace. She wants me to read the same book over and over, but not even read it - just point at the pictures and repeat the names and noises of things and play Boo with the flaps and then do it all again. This is how I spend hours of every day. This is how I don't vacuum much. Now my whole house has been thoroughly vacuumed, but I don't feel I have spent enough time just being with my daughters. I built one Megablocks tower, but then I'd finished so I moved on and left Manna to crash it by herself. These days are precious; I can vacuum for the rest of my life but I don't have many years left of children young enough to sit on me and sing action rhymes.

And I can't cry! I keep wanting to. I feel a pain in my throat and face and heart, but I cannot release the tears. It reminds me of the first phases of grief - at times I could not stop crying and at times I could not start.

I have been thinking of those times a lot over the last couple of months because the other big thing happening in my internal world is a dire countdown to the day Manna is as old as Ember was when Thomas died. Their birthdays being only four days apart, it is all too easy to flashback to when this bright and plumptious child in my arms, full of delight and secure in her world, was Ember. It is all too easy to flashback to how that security quaked terrifyingly; how she would freeze, motionless, at a sudden noise or unexpected touch. Only breastfeeding could reassure her on a deep enough level then, and let her howl like she needed to. I felt I was literally giving love into the centre of her body.

And now I still sometimes see that scared little girl in my eight-year-old Ember. I get heart-tearing flashes of how that deep peace and unshaken confidence in the world will never return for her. It is hell to be unable to give her that and all I can do is just keep loving her - when she's screaming while I brush her hair, when she won't get ready in the morning, when I find her still reading at 9:30 after she's been weeping with tiredness all day...just love, as much as I can manage, all the time.

So this Christmas is going to be mixed. It will be the first year Manna will really participate and I will love her enjoyment, as I always love Ember's. I will be with my family and I am looking forward to giving out presents. But in my mind will be a photo my sister took at Christmas six years ago:
Ember, holding a card, looking healthy and happy, meeting the eye of the camera;
Thomas, horribly pale, visibly exhausted, watching her with huge love;
and me, also pale, watching Thomas and looking very worried.

We didn't know. We were assured he would be okay until he was in his fifties. We didn't know...but there is no denying the fear in my face that last Christmas together.


  1. Much love and hugs to you at this difficult time. May you find peace and solace in your wonderful daughters. I think you achieve an amazing amount and I am sure Thomas is watching you and is inordinately proud of you xxxx

    1. Thank you Diana. My daughters are built of solace for me, every cell.

  2. May the year turn and give you good health and happiness xx

  3. I had a friend who was on steroids for a long while, it was very hard for him, especially the not sleeping. He got a good remedy from an alternative practitioner that REALLY helped him sleep while on the steroids. Wishing you well and peace and deep rest and a bit of magic to carry you through.

    1. Thank you Valerianna. I have slightly reduced my dose now so hopefully I won't be so manic and restless over the holidays - we'll see. Always happy with a bit of magic, thank you :) Love to you x

  4. Sending love, as ever, and some Chinese medicine when the time is right, if you'd like. We saw P in her cafe a few days ago and she told us what had been occurring... Big love to you all and hope to see you over the next few days. Tom x

    1. Ah, thank you, thank you. I think I will take your advice and find a way to see Clare at Sourcepoint. Sending you much love and wishing you a dry hat :)

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