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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.

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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/

Your Desire Shall Be for your Husband

I have been contemplating my relationship with my husband recently. It is pretty good now overall but we have had our fair share of ups and downs, and for years I resented him – not because we had had miscarriages, of course that wasn’t his fault, but because he had decided, despite knowing that I desperately wanted another baby, to wait so long (7 years) between our last baby and trying again, by which time it was too late.

I think that probably I was too ill by the time we started trying again, although I didn’t realise until much later that that might have been a factor. (I read a couple of years ago that women with chronic conditions such as ME, Fibro, MS, PCOS etc. tend to experience miscarriage three times as often as healthy women) .

I have mentioned before that I am not yet at a point of acceptance, of being able to get some closure and say now we have finished building our family. But I have been thinking more and more lately about trying to work out for myself what the shape of my life should look like now going forward if there’s not going to be any babies in the picture. I’ll be 45 this year, so the chances now are next to zero – especially after 4 years of no conception at all (and obviously not using anything to prevent conception!) It’s not beyond the realms of possibility, but highly unlikely. I know that.

I remember once, before we started trying again in 2010, my husband asking me, “Why am I not enough for you?” That is to say, why do you need a baby as well? At the time I thought it was a ridiculous thing to say, the two things weren’t in the same category. But I wonder now whether there is something in it. What is it that makes women like me want babies, and keep wanting babies even with a big family? Well, as I’m sure I have mentioned before, I was raised on the Waltons / Little House on the Prairie as well as having family friends with a big family which seemed really idyllic which fed into the same fantasy. Large family life just seemed much more homely and loving and fulfilling than our quiet, standard small nuclear family. When I had my own family I knew which style I wanted to emulate, and it wasn’t what I had grown up with. But additionally, maybe also a kind of tender intimacy, feeling needed, having somebody to love and adore? (Come to that, why do most women not continually desire that?)

My husband had two sisters, so not a specially large or small family really and I don’t think he was fussed either way. But I do remember once discussing with him that I wanted ten children, and he actually agreed. I suspect now that he thought I was joking. (We have produced 9 in total though – including all our losses – so one more and I would let him off the hook!)

Obviously I have also had thoughts about having a career and started taking steps towards that, but there have been obstacles and it hasn’t happened so far. I have been toying with the idea of working but I think I am basically unemployable. I would be so unreliable with ME – most days I wake up in so much pain I can’t get up, and who would want to employ somebody who might need more sick days than work days? So I have begun to wonder about what sort of things I could do from home. But I would still be at home.

I’m not really convinced that I am cut out for housewifery. I may have the excuse of homeschooling and having the kids around all day and having lots of extra educational materials and books hanging around, but I do not keep a very tight ship. If burglars ever broke in, they might be forgiven for thinking they were too late and we had already been burgled. I wish we didn’t live in a mess but we do.

Perhaps if I were well enough I could take a bit more pride in the state of the place, try a bit harder to keep things ship-shape. But I don’t think I would find that very fulfilling, and sitting at home reading books all day for the most part does nag me with a twinge of guilt at times. So being at home without babies, now that my kids are nearing the end of their education, is beginning to feel a bit odd. What will I do when the children are grown and start to fly away?

I did start some serious writing projects, but I haven’t given them the time or effort to see if they could amount to anything yet. Too busy letting myself get distracted with blogging, although I have given facebook and twitter the boot recently and I have pleasantly surprised myself to find that I really wasn’t addicted at all. (It’s nice to be able to discover new things about yourself at a time when you’re beginning to feel old and staid and boring!)

Going back to my relationship with husband though, I have been thinking more about the necessity of adjusting to this different way of life as empty-nesters (actually I think it will be a long way off for us as youngest is still only 12 and eldest who is 20 seems to have no plans to leave to go somewhere he might need to cook and wash his own clothes). I know it’s not uncommon for some couples to grow apart and end up separating when the children are gone, but that is not something I want to happen to us.

I keep thinking about the phrase in Genesis in the Bible where God tells Eve, “Your desire shall be for your husband“. The context is that it is part of the ‘curse’ after the Fall, and I know that many anti-feminists interpret it to mean that part of the curse is that women desire power over their husbands. (Just as an aside, I posted a question about Christian feminism on a Christian forum recently, asking for reading recommendations, and wasn’t at all surprised to be told that the whole concept of Christian feminism was power-seeking and unChristian. Good grief.) Anyway, what was I saying?

Yep, I don’t honestly know what it means, what the relevance or significance might be to modern Christian women. Perhaps none at all. But I can’t stop thinking about the phrase somehow. I remember when we were first together, before we had children, he told me that he didn’t want me to let myself become dependent on him, because I was perfectly capable to look after myself. But inevitably, as a non-earning housewife and mother of course I did become dependent on him and I still am. I’m not actually too worried about that, as I don’t think it reflects my worth or capability, and I know that things can change in an instant – the universe turns on a pin, after all. There was a time when I went out to work and he stayed at home. It’s not inconceivable that the roles could reverse again. I might get well. (Pigs might fly, hopefully the former is more likely than the latter.)

But I would really just like to be satisfied. Content. With him. With our life as it is, without wanting or needing any babies, or a bigger house, or more money, or some great career or some other monumental success in my life. Is that lame? Or is it a reasonable way for a middle aged woman to think? Yuck! I hate that phrase, ‘middle-aged’. I’m just ‘mature’, right?! (Hahaha, who am I kidding!)

So we are back to gratefulness again. I am grateful. I am thankful. I have lots of good things in my life, and I am totally grateful that I do have such a good, faithful, long-suffering husband. He thinks I am crazy, but he still loves me, and thankfully he seems perfectly happy to accommodate my wish to keep quite a bit of baby-making practice going. 😀

 

The Bajoran Exile

I thought I would let you guys (and gals?) know that, in my slightly housebound/ bedbound state, fuelled with the passion of misery, I’ve been writing like crazy, just not here.

I decided to indulge one of my passions, namely Star Trek, and have started a whole new blog, The Bajoran Exile. It’s actually something of a resurrection of a blog that I used to write about 8 years ago now, but which got deleted while I was incommunicado (actually, the whole platform was deleted) when we lived in Devon with no internet connection.

ds9

I haven’t abandoned this blog, but I do get bored quite easily. Sorry. I may have to change the furniture around a bit. But if you enjoy the idea of Life, the Universe and Everything looked at through the lens of science fiction, pop on over and take a look.

Really and truly, it’s all the same old stuff really – grief, misery, anger, frustration and red-headed fury (that’s why I identified so much with Kira Nerys of course). I will try and make this my happy place.

I’ll still post reviews here of any books, films or music that isn’t science-fiction related, plus my dreams (even though they do occasionally feature Jean-Luc Picard. There’s a confession. Plus, if I have a burning desire to share my opinions on current events I’ll post it here. (I bet you’re waiting with baited breath. No?)

I haven’t had a huge amount of interaction really, so I think that ultimately (although I would like more interaction – comments and suggestions are welcome, constructive criticism only please though, please) I am writing for myself, for my own pleasure and amusement, to make sure that my (formidable) brain doesn’t turn to mush while my body seems to be deteriorating.

I did, though, a few days ago – in a very dark moment – post a challenge/ threat/ slightly suggestive of suicide note on Facebook, throwing out a ‘fleece’ for God, saying that if I wasn’t healthy by the end of 2016 that I might leave the station (DS9 of course). I don’t normally feel like that, I’m not suicidal, I’m not even sure I’m depressed. But my quality of life right at this moment is pretty damn pants, and I don’t like it. I don’t intend to allow my body to deteriorate much further.

So, unless I have any remarkable dreams to share, or a miraculous Christmas recovery, my next post will probably be along the lines of drawing up New Years Resolutions. But I do reserve the right to be completely fickle and change my mind. Catch you on the other side.

LLAP.

 

 

ME Merry-go-round

I’ve been waiting, since my Zombie Apocalypse, for something good, or significant, or interesting, or funny to share.

That’s not to say that nothing of import has happened – I had planned to write after the Paris attacks. When they happened, we were at a metal gig ourselves and even before I knew what had been attacked, I remember thinking that Islamists would imagine that what we were doing was somehow sinful, simply because they don’t understand it and can’t distinguish good from evil.

But I didn’t write because I didn’t have the energy to express the sorrow and anger I felt.

I haven’t had much energy for anything recently. I have had a basically unexplained illness since 2003, and since 2013 they have been calling it ME (or CFS, depending who you speak to) and now Fibromyalgia has been added to my list of diagnoses.

But my relapse has been so hard and so fast and so un-relenting this time that I have started wondering and asking questions about possible alternative explanations, so I have begun to do the rounds of neurologists and rheumalogists etc. trying to rule out MS, RA or Lupus.

Unfortunately, none of these specialists so far want to get involved with the ME/cfs/Fibro diagnosis. You shouldn’t have to bang your head up against a big brick wall when you’re ill but that seems to be the way of things in the NHS, particularly with this label.

When I do have more energy, I might write a bit about what is like to live with this illness. Mostly I just rant a little on twitter about the ‘symptom roulette’ that we experience.

But something I may not have mentioned before is guilt – there are so, so many ways in which I feel I am failing, and while I know it isn’t my fault, I am made to feel as though I am somehow choosing this – choosing to live in pain, unable to do the least work (yesterday, since we had visitors, I did my best to tidy, I cooked, washed up, and today I am a wreck, and can only *hope* the weekend is long enough to recover).

I hate living in a dirty, untidy house, and there is literally nothing I can do about it.

There’s a lot about the world, and my life, that feels out of control. My dreams have been weirder and more disturbing than normal, even for me. Music, and specifically Rock and Heavy Metal, is one of the few things that make me really happy in amongst all the mess and pain and sorrow.

So as much pain I am in, and as much as I feel wrecked beyond anything the word ‘fatigue’ can describe, the one thing I make sure I get out to is live music. I can’t drive there, and I usually can’t stand up for long. But if needs be, I’ll get taken in on a stretcher. Music, and art, makes life worth living 🙂

Life with ME

Pacing
Is a thing
We’re supposed to do –
Determining
At the start of the day
Which activities
To choose
And which
Must fall by the way.
No matter
That we only get to choose
Half a life.
Which half
Is worth preserving
And which must be
Sacrificed?
Can you pace your emotions
So you only feel half sad –
Mildly disappointed
At the injustice
Of being cut down in your prime?
There are worse things
To suffer
After all.

(c) Sharon Tootill (Shoshana) 2015