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Not Lazy, Crazy or Stupid

This is the first post I have managed to organise this year.

I have started 17 separate blogs and websites just on WordPress, and I haven’t posted on any of them for months. I thought amalgamating them all here would help but I think it might possibly have made it all worse.

It isn’t due to my life being horrendously empty and boring. It’s quite busy but in fact this is the problem – I have an irresistible impulse to create and start things, but I get overwhelmed really easily and end up doing nothing at all instead.

It’s the same reason why I buy and keep multiple diaries and planners but end up not writing anything in any of them. I can’t even promise I won’t buy any additional ones.

But after a lifetime of believing that I was just a little bit rubbish at everything, “lazy, crazy and stupid”, I finally got confirmation from two counselor/ therapists that in fact I have ADHD. My GP agreed, but she cannot make an official diagnosis.

Sadly, I was told by the same people that “there is no NHS pathway in Cornwall for adults with ADHD” (and the same would appear to be true for Asperger’s, since my eldest has been struggling for over a year now to get the official NHS rubber stamp on that diagnosis.)

What this means in practice is that we have no access to meds unless and until we are in a position financially to pursue a private diagnosis. Well I guess we will just have to start saving our pennies.

In the meantime, it’s a case of muddling along in the mess, physical, mental and emotional, repeating to myself daily, hourly, “I’m not lazy, crazy or stupid, I have ADHD.”

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! 👍

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.