Unravelled

​I found this poem in my facebook memories for today, and had to look it up to discover where it was from. I liked it so I thought I would share it. 

The book was probably the best one I had on pregnancy loss because it was offering art as therapy rather than just commiserating about the loss. As it turned out, the art form I chose was writing (and my first attempt at NaNoWriMo was an unexpectedly intensely personal piece of fiction that I haven’t been able to even go back and edit because it was so raw, but getting it out helped me I’m sure). 

I like this poem because, while it is heart-rending and painful, it is more beautiful than dark. I hope you enjoy it.

After three months
of silent stitching

what finger let slip

what growing row of cells

unravelled, loosing life and

leaving the lap empty?

– Olson Binder, 1993

Quoted in Grief Unseen, Healing Pregnancy Loss through the Arts by Laura Seftel

The Best Laid Plans…

I know it couldnt be further from husband’s mind, but after this most recent unexpected pregnancy and miscarriage I had hoped than once we were in our own home finally we would be able to start the adoption process again.

But two weeks before we were due to move house, my mother had an emotional crisis and was showing such severe signs of confusion and possible dementia that it was decided she would have to move in with us.

So there goes our ‘spare’ bedroom. Mum has actually been much better in the six weeks she’s been with us, so the plan is to make this a permanent arrangement.

Maybe it was just never meant to be. Every time our situation was starting to look promising, another hurdle would be thrown up in our way.

And now of course, I’m 45 so even if I could get on top of my health issues (I’m currently being investigated for Cushing’s and Diabetes Insipidus, all relating back to a head injury I had back in 1983) it would be too late for babies.

I keep thinking that I should just give up making plans and just let life wash over me and take it as it comes. Just shrug my shoulders and accept that whatever will be will be.

Years ago (actually straight after I lost my twins), a friend suggested I get myself a puppy. At the time I thought it was a really insensitive thing to say. But now, after 13 years of empty arms, secondary infertility and multiple recurrent miscarriages, I would settle for a teddy bear.

Dream Fury

I’m not really here, I’m really writing NaNoWriMo, but for some reason, my dreams at night are running rampant, so I thought I’d share them!

lady-in-black-cloak

I woke up so furious from a dream, I felt as though my blood were boiling. For some reason I was back in [that other place], and offering to do an arts and crafts workshop on pens! I packed all my various sets of pens and laid them out to show a certain person who once ran the children’s group despite her own child having grown up years ago (who shall remain nameless), and she vetoed the whole thing, and said it wasn’t ‘viable’. So I packed my pens angrily away into my holdall, saying “don’t worry, I was just thinking of doing it in somebody’s home, I’ll organise it myself.” But she started saying something along the lines of that being quite impossible (as though she controlled what went on in other people’s homes!) I packed even more angrily, and she accused me of stealing some cardboard or wooden crap of her own, which I hadn’t done, I just moved it out of my way, which I told her and said it was ridiculous, why on earth would I want to steal her rubbish? So then I stormed out (storm in a teacup, remember? Bitches!) and I stormed through the market, bumping into everybody. Everybody seemed to be wearing black, and I think I was wearing a big black cloak with a hood. I wonder what on earth prompted that, after so many years.

A second dream, I was somewhere up north, I don’t know what I was doing but have a feeling I was in a hospital for some reason. Husband was supposed to be coming to meet me but he kept sending messages saying he was delayed, so I decided to drive myself. Another girl persuaded me to take her with me, and she was supposed to be going to Nottingham, but she didn’t want to go home, so we decided to just abscond together, no idea where we were going. Strange, eh?

And there was another (I think these dreams are actually in reverse order). This one may well have been set in a hospital, it was definitely some kind of institutional building, and as usual, I was on the run, rushing through the building trying to escape and eventually I hid in somebody’s bed, but we were discovered, and we rolled off the bed on to the floor and both started running again.

That last one seems to be my typical dream format. I’m always on the run or being pursued, I have no idea why.

Perhaps I’m just crazy enough to be a writer?

Karma

Just a quick note to let you know we have moved (or rather are in the process of moving, since we haven’t let the old place go yet, to make moving gradually possible – not the way ‘normal’ people move, I know, but it seems to be the way we do it!)

We have no phone or broadband at the new place for the time being (other than a very patch connection to BT’s openzone hotspots or whatever they’re called. Better than nothing, for sure but frustratingly slow and requiring fresh logins every 5 minutes.

I am, I have to say, unspeakably happy to be away from the previous place. We’re in a bungalow now which is just wonderful. It needs lots of work, but it’s actually ours – we finally own our own home again, against all the odds. (If I have enough signal to upload photos I will).

As chance would have it, the week before we were set to move, my mum – who has bipolar disorder – had a crisis which meant I needed to stay and look after her, and when it became clear that she couldn’t look after herself (possibly due to dementia creeping in there too), I brought her home with me and she moved with us. Terrible timing, but since the bungalow is big and we had a ‘spare’ bedroom, it’s all working out (as well as any story including bipolar can).

From everything I can gather, although the local Psych team were trying to do what they could, it appears that mum’s GP was completely incompetent, so I’m hoping that we can get her a little bit more stable and happier with a bit of TLC from my great new doctor’s practice, and although she is very uncertain about the whole idea of moving, managed to persuade her to register here as a permanent resident so at least then the GP can do some proper investigations.

And, fortunately again, I seem to be quite well right now. Preganancy may have put my ME into remission, so I hope it will stay this way. I had a bunch of unsolicited emails this week reminding me that I should have been 21 weeks’ pregnant this week, but I’m not allowing myself to slip back down into grief and misery. I really don’t have time.

Aversion Therapy

aversion

I wrote this post once already, but the evil internet ate it up and it disappeared without a trace, so instead of the beautifully crafted original post, you’ll have to make do with what I can cobble back together from my memory.

A few weeks ago, my mother and brother came to visit us from that London, and on the Saturday they wanted to go to the cinema and the only thing that seemed remotely worth watching was Bridget Jones’ Baby, so we went to see that.

WHAT WAS I THINKING?!

Well this isn’t a review. In a nutshell, it’s a perfectly good and funny film (although I have to say it scandalised my mother! I forgot how rude and sweary Bridget Jones was!) But it is a stupidly inappropriate film for anybody who has recently had any kind of baby loss! I should have realised that, but I guess I felt ok – until the part in the film where Bridget goes for her (first) ultrasound scan, from which point, I was a complete wreck. I managed to contain my emotion outwardly until I got home and promptly locked myself in the bathroom and bawled my eyes out.

I told my little tale of woe to my Recurrent Miscarriage group, and lots of people said they wouldn’t even consider going to see it, one lady wanted to see but couldn’t face it and another watched it like I did and had a good cry afterwards, but she said she was glad she watched it anyway. I wish I hadn’t seen it.

On another note (but somehow related – I couldn’t tell you how my train of thought connected the two), I decided to take a proper break from facebook (it’s all baby photos and happy boasting announcements that make me want to vomit – maybe that’s the connection) and I noticed that an old friend, somebody I had known for years and with whom I had shared life’s traumas and troubles over and over – not just mine, but hers (she was evicted at the same time we were, she has a child with a chronic health condition that took ages to diagnose, as I do etc) had unfriended and blocked me, and not only on facebook but on Twitter as well (all my accounts!)

I was really ticked off because it seemed so petty. But apparently we had had what amounted to a fundamental disagreement.

I don’t actually remember exactly what she had posted but it was something along the lines that Trans people being allowed to choose the appropriate toilet for themselves was an outrage to public decency and a danger to all God-fearing girls.  As I recall, I tried to explain to her that being Trans was a little bit more complex than she probably realised. But she was so determined that she was right that she started making very unkind and wrongheaded personal judgments about one of my children (who happens to identify as Trans) and obviously that was not acceptable. I presume that she deleted me as soon as she realised I wasn’t prepared to let her do that.

Whatever.

Well. I’m prepared to say “good riddance” – that sort of ignorant attitude is not really what I want to surround myself (or my children) with.

But it hurts, to be judged, and to be summarily cut off in that way. And of course it worries me that these kind of attitudes are so prevalent, and I hope that my children can be safe and un-persecuted, whatever their personal choices that don’t hurt anybody else.

So just for the record I thought I would clarify some points about being Trans. I hope I’m not misrepresenting anybody, this is just my take on it all, as a parent.

  1. Being Trans – having gender dysphoria – is not a sin.
  2. Being Trans – identifying with a gender other than your birth gender – is not the same thing as being attracted to or having sexual relations with another person of the same birth gender. That can be the case, but it’s a separate issue. Still not a sin, even if you’re conservative enough to believe that all same-gender relations are inevitably sinful, with no exceptions.
  3. Being Trans does not automatically mean having a sex-change. (And frankly, having a sex-change is not necessarily a sin either!) ed.: I’m wondering what circumstances would make it a sin, actually?!
  4. Being Trans inevitably includes a range of mental health issues including depression, anxiety, fear and confusion. Please don’t add to it. Just be kind! Always.
  5. Being Trans is often seen in teenagers associated with Asperger’s Syndrome (in my own child’s case, gender just does not quite ‘compute’, and the whole idea of any kind of sex is disgusting). Not a sin.
  6. Trans people are not known for violence. The argument that allowing M to F Trans people use female toilets would lead to more rape or attacks on female children would seem to be deeply flawed on so many levels, and wholly without basis. The kind of people who desire to make those sorts of attacks are going to do it anyway, regardless of the law.
  7. Gender identity and sexuality are actually a little bit complex. Not the simple black and white, fixed boxes you might assume. It’s not just a matter of physical gender – it’s genetics, it’s hormones, it’s mental, it’s culture. It’s complicated. Take a step back before you jump in and condemn.
  8. And finally, who the (((bleep))) are you to judge? Get that plank out of your eye, people!

That is all.

How bad science misled chronic fatigue syndrome patients

I get all my medical news from twitter, and I haven’t been on for a while (because typing on an android screen keyboard is too much like hard work when your hands and wrists have no strength), so I missed the news that Wellesley’s team had been forced by court order to release the data from their faudulent pace study earlier this year – Thank-you to everyone that made that happen. Full details in the article below.https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

As everyone was agreeing on twitter when I looked last night, it’s about time to hear some very loud apologies from journalists, the medical establishment, and especially Simon Wellesley himself. But we won’t be holding our breath.

My question now is, when so much evidence was already out there, and every other medical authority – including the World Health Organisation – agree that ME is a neurological disorder with a possible viral component, how on earth did the UK allow psychiatry, of all the inappropriate disciplines, to take over our ‘care’ at all, ever, in the first place, let alone for so long. And when will they finally be kicked off the case? It would be difficult to find any doctor, team, study, or discipline more thoroughly discredited.

Postnatal Depletion—Even 10 Years Later

This is a really interesting article, and I can’t help but notice the similarity between the symptoms of what the author calls ‘post-natal depletion’ and ME/ CFS/ Fibromyalgia – doctors and scientists and article writers are constantly coming up with new theories,  but given that I got ill right after giving birth in 2003 (and the fact that I have had 9 pregnancies altogether, and at least 5 of those were back-to-back without a break), I wonder whether this might more readily explain how and why I became ill. And perhaps suggests a way forward to get healthy again.

http://goop.com/postnatal-depletion-even-10-years-later/