Tag Archive | carers

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

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Sudden Changes

mh-carers-fine

I thought I would post an up-date, as it has been a while and a lot of things have changed.

It became apparent that it would have been impossible to leave my mum on her own – we had done everything we could to try to get NHS carers, but no help was forthcoming, so she agreed to come back to Cornwall with me.

The timing could not have been worse, as we were just about to move house. My brother organised a caravan for her to stay in to avoid the chaos, but as it turned out she hated it and it was just one more thing for us to deal with, so she came back to the house and lived with the chaos.

We started to move house two weeks later (and we’ve done that gradually – paying for an extra month of rent was cheaper than getting removals, but it has meant doing everything ourselves which has been pretty awful), so it has been differing levels of chaos over the last month. It won’t be over and done with until the end of this month.

So now, I am a ‘carer’. In a way it’s my worst nightmare come true, but it hasn’t been as awful as I expected because on the whole, mum has been much better – happier and healthier with us than she was at home. The doctors here have been much more responsive to dealing with mum’s physical health issues than her (apparently incompetent) doctors back home. It turned out that mum’s lithium levels were almost toxically high and so they reduced it and a lot of the symptoms (diarrhoea every day, which mum thought was IBS, amongst others) have lifted which has made a huge difference to quality of life. My only criticism is that the GP made an ‘urgent’ referral to the Psych Team, and we’ve heard nothing from them more than two weeks later.

For myself though, I thought I was fine at the beginning – my ME/ Fibro seemed to be in remission after a pregnancy earlier on in the year, but over the last few weeks I was beginning to feel signs that the Fibro was coming back. I didn’t want to believe it so I tried to ignore it, stupidly, and now I feel completely burnt out.

There are lots of things that have made everything more challenging – my  mum is a completely different character to me. Whereas I am perfectly happy to stay indoors, mum is a real ‘going-out girl’. She would like to go out every day, and wants me to organise groups and dinners and day centres. I’m finding it a challenge to find things for her, but hopefully that can be sorted in due course. But in addition, mum hates going in the car, and since we’ve moved out of town, now we’re about ten miles from everywhere. That can’t be helped unfortunately.

So I’m just having to deal with it, and get over my natural tendency to agoraphobia. I’ve been pretty brave myself as well, going out to support groups and the like. Next time I’ll post some info on some nice places we’ve been instead of doctors and mental health centres!

I found the picture above when I googled ‘mental health carers’, and felt that it was exactly how I felt as a sudden carer. Hopefully it will get better (although mum doesn’t really want to be here, she forgets very quickly how unhappy she was alone, and wants to go home every day), and I plan to make sure I plug into support groups and resources for carers.