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  • Mrs Chakotay 5:49 pm on March 13, 2017 Permalink | Reply
    Tags: , , , , endocrine, , , , , , MyalgicE, MyE, , , ,   

    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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  • Mrs Chakotay 10:48 pm on December 14, 2015 Permalink | Reply
    Tags: , , , , , MyalgicE,   

    What’s it all about? #DreamWeirdness 

    I discovered the other day that intense and strange dreams are actually a recognised symptom of ME, something to do with hyperventilation because the oxygen doesn’t get to our cells properly. Anyway, that may explain why my dreams are always so vivid, and so memorable (to me anyway).

    In my dream, we let ourselves sneakily into our wealthy friends, Derek & Jane’s massive house (not the house they really in but rather some kind of classic mansion, with oak panelling everywhere) this would be the perfect size for us, I remarked.

    Derek & Jane turn up unexpectedly and are shocked to see us there, and we tell them that we are there to meet Tom (their eldest son). They rush off, believing our story, taking some other wealthy people’s children to swimming lessons at a private pool. Everything seems to look like 1930s, something out of a Poirot episode. The swimmers are in special life-saving costumes.

    I went in a downstairs toilet, there was a big dog lying with its face under a stool or something. It had such long, red fur I thought it was a girl. It’s asleep and doesn’t stir.

    Later, I am wandering round a bigger building, perhaps a school, attached to the house. People are milling around. I see someone I recognise and realise I know her from a scrapbooking group, but then I realise it can’t be that, because the scrapbooking group was in the city. it must be something else like that. We talk and walk together, but then I suddenly realise I am completely naked!

    I run back to the house looking for the bathroom or somewhere where I can find clothes or something to cover myself. There are people there! Have I gone in the wrong house? People I don’t know, cooking in the kitchen. I panic when suddenly I see my friend Nathalie who pulls me into another room (to protect my modesty!) She tells me it will be alright and that the people cooking would like my help.

    We have dinner, the other people have gone, and I look for a sink to wash the dishes. There are sinks everywhere! But they’re all full of strange things. I finally find an empty sink when somebody comes in the front door, a lady with a little boy. She goes in to the toilet without stopping to speak to us.

    Now (as is the way in dreams) it has changed to John and Gay’s house (but not the house I remember). I tell the lady they are out and then as she turns I realise she is heavily pregnant. I ask her when she is due, and she says soon, and then realises she is going in to labour. I wave over the neighbours. I say the boy can’t stay with us as he doesn’t know us. She is in a panic, and I think to myself that her anxiety reminds me of me, but the neighbours arrange everything and take them away.

    Why? What’s it all about? Lots of my dreams feature pregnancy and babies, random people I know, houses I know. And peculiarly, sinks, toilets and bathrooms feature heavily.

    Is it all nonsense? Do I need therapy?!

     
    • MjBee 3:39 am on December 15, 2015 Permalink | Reply

      I have M.E and crazy vivid dreams too. Theres lots of internet sights that you can search the meaning of certain dream themes, maybe check those out!

      Like

  • Mrs Chakotay 7:39 pm on December 4, 2015 Permalink | Reply
    Tags: , , , , , , , , , , , MyalgicE, , Paris,   

    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 🙂

     
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