Category Archives: Health Issues

Unification

This is just a quick note, for anybody who might be reading/ interested, to let you know that I have decided to amalgamate all my various blogs – The Bajoran Exile, Chakotay Homestead, Seaside Therapy, Shepherdess, Messianic Woman etc. back into one right here (hopefully that should be achievable, as they’re all on WordPress). 

When it’s all done, you can expect more of the same, but with a much heavier dose of Star Trek analogies.

I don’t know exactly why I have this continual impulse to start new projects that I can’t possibly keep up with, but it is certainly a recurring theme. I shall attempt to stop it immediately. 

I haven’t written anything anywhere recently (unless you count twitter and facebook), due to mental, emotional and physical exhaustion. That has made me realise how ridiculous it is to have so many blog projects on the go at once, and so hopefully I will start writing again soon because at least I won’t have the excuse of not writing due to being overwhelmed by too many choices.

I think as well that all the splintering into so many different voices has been indicative of my state of mind over the last few years and so I’m feeling that the time is right to finally sort my head out and pull myself together. Metaphorically.

Wish me luck or something! 👍

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Head injury update

Just a quick mini post-ette as I’m suffering a bit after trapsing all around the hospital yesterday.

As you may know, I have literally had a permanent headache since 1983 after my head injury when I was knocked off my bike in a hit and run. 

It has taken me 34 years to get a doctor to take me seriously.

Yesterday, the MRI revealed a trauma cyst the size of a giant marble!

So I’m quite thrilled (at being vindicated after being ignored and dismissed for so long) at the same time as being freaked out that I need surgery! 😂

Dark Frontier

We took mum home about six weeks ago now. Since she has been gone I have tried really, really hard to relax and largely failed for some reason. I don’t ever seem to be able to properly relax.

I thought that reducing stress would help my physical health but instead, somehow, it has just got worse and worse; despite which, all the results of all the testing I was sent for, and all the various referrals to different consultants have come back negative. My MRI showed no obvious evidence of damage from my bike accident. Endocrinology didn’t find significant evidence of Cushing’s. There would appear to be an intermittent excess of cortisol, but there doesn’t appear to be a tumor either on my pituitary or my adrenals. The non-significant levels don’t justify more testing.

It would appear to suggest that my cortisol levels are likely related to anxiety. Anxiety that I wasn’t consciously aware I had.

I have reverted to my previous agoraphobia. Agoraphobia of course is a sign of anxiety, but somehow I didn’t connect it. Now that I don’t have a group to go to, I pretty much don’t go out unless I have to. I go to church on a Sunday (and once I went twice!) and I go out if husband drives me somewhere. But largely, I am hibernating and hiding.

I hadn’t realised until recently what the source of all my issues were, but a chance conversation on twitter, together with a conversation with my eldest child has forced me to confront some very dark and disturbing issues from my past going back to my childhood.

I’m not sure whether I want to dwell on that here. I have other places to talk about mental health and spiritual abuse (for that is what it was, if anybody is interested to look at that).

The question is, how to move forward. I know that I have to confront my past if I’m to get through it and get well and recover mentally and physically. Talk about it, write about it, meet with other survivors, they say. But just thinking about it has made me more physically ill than ever.

I prayed at the end of last year that God would reveal the true source of my illness so that I could get well. I really thought I was on to something when I the doctor suggested Cushing’s. I think she was right that cortisol is a big issue. But the cortisol is actually (probably) in response to trauma. I wasn’t ready to consider that, but now that I do it all makes sense, and I just want to cry. I have to open up a whole Pandora’s Box I thought I had long buried. It makes me feel vulnerable, like a little girl again.

If I still have any Star Trek fans following me, you will recognise the name of the Voyager episode in which Seven is confronted by her past – in which her parents took the risk of studying the Borg, thinking they wouldn’t be harmed, but not only are they harmed but they allow their daughter to be harmed, taken by the Borg and raised by them, and in turn Seven goes on to commit atrocities on others as a Borg herself. It’s a very good metaphor, for me, effectively being raised in a cult-like church, and later going on to do harm to others in the same vein (in particular, I regret, my eldest child).

It’s not easy to face.

They’re Civilians! Civilians with Partical Weapons!

Apologies for the rather long hiatus in posting. Life as a full time (mental health) carer has been very taxing indeed, and I have found that my life and ‘free’ time has no longer been my own and, when I have had free time, I have been too exhausted to use it productively.

There have been lots of things going on, and there are lots of things I could post about but I will have to think about what and how much to share, why I’m writing in the first place and who my audience might be.

Since the Autumn I have also been battling with the NHS system to get to the bottom of my health issues. I now have an official Consultant-led confirmation of the diagnosis of ME, although disappointingly that doesn’t seem to help much – the general gist of things is that they can’t really do anything very much to help me. But I have seen a neurologist and will be referred back to the Pain Clinic apart from other things.

Additionally, my GP has been looking for evidence of Cushing’s Disease. It is considered a ‘rare’ disease, but it is on the list of endocrine disorders that should be ruled out before diagnosing either Fibromyalgia or ME as well as Adrenal Fatigue/ Exhaustion. It’s actually in a way rather the opposite of Adrenal Exhaustion since AE is a lack of adrenal hormones (the adrenals are exhausted) whereas Cushing’s is an excess of adrenal hormones – in particular, cortisol, which may be caused either by overuse of steroid medicines or the presence of a pituitary or adrenal tumour.

After various stages of testing, I have an appointment for a kidney scan (primarily to find out why my blood pressure is so enormously high and resistant to meds), and I’m waiting for the results of a new MRI. My GP said that, even though my cortisol levels appear normal so far, if there is no mass on my kidneys she will order an adrenal scan as there is obviously something not quite right. So no results yet but I feel as though I’m making (slow) progress at last thanks to my lovely GP who is the first to take me seriously and keep on testing until we find the truth.

That’s all for now. I do plan to come back to blogging. If you’re reading, please let me know. If it’s only for me I may still post as I find it therapeutic. Talking of therapy, my therapy of choice is still Star Trek. Top marks to any Trekkie who is able to identify the episode – I’ll give you a clue, it’s from Star Trek Voyager – from which the title of this post is named. (I used it as I’m in the middle of an upsetting episode in real life, that has me confused and questioning everything I thought I knew, but that is for another day.)

LLAP

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.

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/