Tag Archive | Cushing’s

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.

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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