Tag Archives: Myalgic Encephalomyelitis

If She Tries to Resist, Assimilate Her!

Just a very brief outline of what was upsetting me yesterday, and will no doubt continue to unsettle for a while.

Last year when Mum moved in with us, I took her along to a Women’s mental health support group which was run by a national charity known as Rethink Mental Illness. I was surprised to recognise many of the members from the Fibromyalgia group I had previously been a member of, but had been uncomfortable with it being run by a mental health charity. (ME and Fibromyalgia have been dogged by inappropriate association with psychiatry for decades)

To cut a long story short, the group decided to break free of Rethink and set up on their own (there was actually a very acrimonious split but I won’t go into details).

It was decided that the group would amalgamate to be both a Fibro group and a mental health group and since we were all friends, we could divide the time informally and equally between the two. I thought it suited everyone.

But then, just after Christmas, there was a big, bad falling out and one of the members left/ was pushed out of the group, and one or two members made a complete turnaround and decided to ask Rethink to step back in, as though everything that had happened before and all the reasons we ejected Rethink were irrelevant.

I was given leaflets to re-apply to Rethink to be ‘assessed’ by them, and I filled them in but carried them around in my bag for weeks, really not quite comfortable about being involved with them again (not to mention the fact that I was unhappy about various aspects of the way the group was going, not least of which was the decision to offically call the group a Mental Health group and ignore the ME & Fibromyalgia).

On Friday, we weren’t able to get to the group and apparently they met with Rethink  without us. Rethink determined that nobody could be a member of the group anymore unless they were assessed and approved by Rethink and so we could no longer attend meetings until we got that sorted out. Not only that, but they stipulated that we were not even allowed to meet members of the group for coffee until Rethink had approved us.

Well, no.

Apparently the other members of the group all sat there meekly and said “Yes Rethink, whatever you say, Rethink, three bags full, Rethink.”

They seem to be honestly surprised and confused that I would disobey. They had not anticipated it and apparently everybody is reeling because I have broken the group up!

Of course I am very sorry and upset to have hurt or upset my friends. But by all accounts, I think these friendships must have been very weak and superficial if not entirely fake if they would submit to tyranny for the dubious promise of safety that Rethink offers.

I think I probably need to learn to say “no” louder and more determinedly at an earlier stage if I’m to avoid repeats. But in this instance, I think it’s all over and we need to stand our ground and be prepared to lose the group to Rethink. I’m not willing to submit to the malevolence or incompetence of a group that has already shown themselves to be untrustworthy and more trouble than it’s worth, and I doubt the others are strong enough to resist.

I hope I’m wrong and the friendships will survive despite the disagreement (and Rethink’s ridiculous rules). But somehow, I very much doubt it.

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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

Progress

I have a new phone – an android,  a Samsung Galaxy Note 4 to be precise. It’s groovy because it has a stylus but I am missing the Blackberry keyboard a lot. I’m finding the new phone far less practical in terms of usability for somebody with weakness in my hands and wrists.

It’s too heavy and requires more movement in both hands. I am somewhat tempted to get myself another old Blackberry but I stupidly signed up for a contract. I’m trying to persuade my daughter to take it off my hands! 🙂

The worst thing is the feeling of lack of control – several times I have started posts and lost them.

A quick bit of good news next – today I had my first appointment with the good GP who just came back from maternity leave and let me say it was worth waiting for her.

I’m too tired now to go into detail but it’s all good. Maybe I will write again tomorrow  (but I will probably use the laptop if I can manage it).

Felix qui potuit rerum cognoscere causas

The fact that I am up (still up) at 4:25 am, playing with my blog and updating my Goodreads/ Shelfari/ LibraryThing accounts worries me somewhat. Yes, I’m tired, but I’m also so horribly buzzy that I know there is very little point in me going to lie down, because I would not be likely to sleep. In fact, sleep has been elusive for some time.

Adrenal rushes have always been part of my illness. During my succession of dreadful GPs I have been told that a) I was imagining them, b) that my adrenaline and cortisol appears normal and c) I must have an anxiety disorder. Well pah. I lost faith in the NHS a long time ago. I know that I have anxiety issues, but to be fair they didn’t start until after I became ill.

Adrenal fatigue/ dysfunction is a known symptom of ME as part of the overall autonomic nervous system dysfunction, but since the NHS are ill-equipped to correctly test for or treat such things, their default position is to insult us. Enough of that. When I can afford to, I will be getting some properly reliable tests done privately. What I will do after that is anyone’s guess. I’m not likely to ever be able to afford private care beyond the testing, so once I actually know what I am really dealing with, I will investigate affordable alternatives.

Anyway. What I wanted to mention is that this period of insomnia and frenetic activity is somewhat reminiscent of a Bi-polar high, or the ‘manic’ part of what used to be called Manic Depression. I do have Bi-polar tendencies, I am aware of this. My mother has Bi-polar Disorder, and although I don’t believe for a moment that I have Bi-polar myself, I do think I am slightly genetically vulnerable to changes in brain chemistry. I have had these occasional, mild highs before. Primarily, I have had them when taking a new medication – when I was on Amlopodine for high blood pressure, I experienced horrible racing thoughts and really unpleasant ‘mixed states’ – a feeling of intense depression and mania at the same time. The other thing that threw me for a total loop was St. John’s Wort, which I took for post-natal depression many years ago.

Thankfully I am not experiencing any of that this time. But I do feel very, very slightly ‘high’. And although there is a very crucial campaign by people with ME to ensure that the illness is not confused with mental illness (which I totally support, as I am quite, quite sure that the depression that comes with ME is not a cause or an explanation but rather a co-morbid result of suffering chronically and being treated so appallingly badly by the NHS, the media and society in general), this ‘high’ does strengthen my conviction that my particular illness has dysfunctional thyroid as an integral component, since hypo- and hyper- thyroid states can affect the brain, and in fact it is not unknown for people with dysfunctional thyroid (especially Hashimoto’s Thyroditis, which can swing from high to low) to be mis-diagnosed with Bipolar.

Yes, you have probably guessed it, I have been taking a supplement designed to help the Thyroid for the last week or so. I strongly suspect a causal link. Again, when I can afford to, I will be getting a complete thyroid panel done privately. But I’m feeling good (even allowing for the possible ‘mania’) about the feeling that I might be on the right track.

As you may have seen me mention, I posted in a very dark moment that if I didn’t get well in 2016, I would throw in the towel. I’m sure I wouldn’t. But I have a good feeling that 2016 might be the year for me. If I can get well – even by a small margin – my quality of life would improve beyond all recognition; I would be able to get out, clean my house, oh I don’t know – perhaps begin to make friends and build that ‘social network’ that 2015’s horoscope promised so faithlessly.

This is what I would like for 2016: glowing health, all our financial difficulties are over, find a better house, success in every area, and everything I touch turns to gold. Blessed beyond all imagining. “A good measure, pressed down, shaken together and running over, will be poured into your lap.” Yep. That’s what I’m looking for ideally.

And if it doesn’t happen quite like I want it to, I will try to find joy in all things, beauty and treasure in the darkness.

See? This is my happy place now.

Study Plans for 2016

I haven’t done any formal studying for a while now. Something went wrong with the funding for my OU course and, since I didn’t really get on with DD101 (I know I passed, but I never had any feedback or a score or anything) and for a whole host of other reasons, I won’t be picking it up again any time soon. But as it turned out, we had a really bad year which made not studying a good thing, I could not have coped with study deadlines at the same time.

I changed my OU degree from Q69, Combined Social Science, to an Open Degree, but nothing really appeals at the moment. So if I do pick it up again, I don’t know what direction I will go in. I wasn’t impressed with the way the OU worked, the materials, the tutor, and it felt like a waste of time, money and effort.

I had been considering the possibilities of studying Theology (which obviously would necessitate moving to another college anyway, St John’s Nottingham is an online option) – firstly in the hope of following the vocation of the priesthood, and secondly as a back-up plan, I could use it for teaching (primary or secondary) or alternatively as a chaplain of some sort or another (hospital/ school/ college/ military).

All of those possible paths have stumbling blocks – principally of the financial kind, and my health has been very poor this year, so I don’t know if I will even be able to take up a career any time soon even if I do manage to get qualified, I’ll be 45 this year, and I have already had 12 years of ME.
So at this point I’m just shrugging my shoulders and letting it all wash over me and trying not to care or worry.

A (virtual) friend of mine with ME started a Law Degree a few years ago. I can’t imagine how you would manage that with this illness, but he seemed to. I took an intro to Law (a 10 point OU course) It wasn’t hard, but it didn’t exactly thrill me!

But in an effort to ensure that my brain doesn’t turn to mush, I will probably start looking into what’s available to study informally this year again. I don’t like the idea that schools, colleges and universities act as the gate-keepers of knowledge. The whole qualification and student finance game seems like a big racket to me.

I have previously bought OU materials to study on my own without going through the rigmarole of the course and the debt. I have even toyed with the idea of studying medicine just for the fun of it. It might come in handy, you never know.

Do any of you have recommendations for any good courses coming up? So many books! So little time! 🙂

The Bajoran Exile

I thought I would let you guys (and gals?) know that, in my slightly housebound/ bedbound state, fuelled with the passion of misery, I’ve been writing like crazy, just not here.

I decided to indulge one of my passions, namely Star Trek, and have started a whole new blog, The Bajoran Exile. It’s actually something of a resurrection of a blog that I used to write about 8 years ago now, but which got deleted while I was incommunicado (actually, the whole platform was deleted) when we lived in Devon with no internet connection.

ds9

I haven’t abandoned this blog, but I do get bored quite easily. Sorry. I may have to change the furniture around a bit. But if you enjoy the idea of Life, the Universe and Everything looked at through the lens of science fiction, pop on over and take a look.

Really and truly, it’s all the same old stuff really – grief, misery, anger, frustration and red-headed fury (that’s why I identified so much with Kira Nerys of course). I will try and make this my happy place.

I’ll still post reviews here of any books, films or music that isn’t science-fiction related, plus my dreams (even though they do occasionally feature Jean-Luc Picard. There’s a confession. Plus, if I have a burning desire to share my opinions on current events I’ll post it here. (I bet you’re waiting with baited breath. No?)

I haven’t had a huge amount of interaction really, so I think that ultimately (although I would like more interaction – comments and suggestions are welcome, constructive criticism only please though, please) I am writing for myself, for my own pleasure and amusement, to make sure that my (formidable) brain doesn’t turn to mush while my body seems to be deteriorating.

I did, though, a few days ago – in a very dark moment – post a challenge/ threat/ slightly suggestive of suicide note on Facebook, throwing out a ‘fleece’ for God, saying that if I wasn’t healthy by the end of 2016 that I might leave the station (DS9 of course). I don’t normally feel like that, I’m not suicidal, I’m not even sure I’m depressed. But my quality of life right at this moment is pretty damn pants, and I don’t like it. I don’t intend to allow my body to deteriorate much further.

So, unless I have any remarkable dreams to share, or a miraculous Christmas recovery, my next post will probably be along the lines of drawing up New Years Resolutions. But I do reserve the right to be completely fickle and change my mind. Catch you on the other side.

LLAP.

 

 

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 🙂

May 12th International ME Awareness Day

I had planned to write my own post and draw together good and helpful links, posts and videos for International ME Awareness Day, but I seem to be having a bit of a bad patch and I have already run out of ‘spoons’ today.

So in the meantime, I am sure you will enjoy this post with beautiful paintings depitcting some of the various stages of ME/cfs.

http://glutenfreeadventuresandme.co.uk/2015/05/12/the-corrupted-part-1/

A New Name for ME: Good for us or bad for us?

ME, commonly confused with and lumped together with the unexplained chronic fatigue of ‘Chronic Fatigue Syndrome’ – primarily by the NHS – has a rather amusingly large number of hashtags on twitter: #ME (obviously), #MEcfs, #cfsME, #CFIDS (Chronic fatgue / immune deficiency syndrome), #MyalgicE, #MyalgicEncephalomyelitis, #Spoonie even, and now we can add the new hashtag #SEID.

SEID is the new name that the American ‘Institute of Medicine’ has given to the condition, christening it ‘Systemic Exertional Intolerance Disease’.

There are several things to note about this – please add your own thoughts as well, as I am sure I have missed plenty that could be said about this.

Improvement:

– Replacing ‘syndrome’ with ‘disease’ sounds like an improvement: ‘syndrome’ suggests an unknown collection of symptoms that fit loosely together but the connection between those symptoms may or may not be relevant. ‘Disease’ makes it sound a little bit more of a legitimate illness, recognised to be one coherent whole. Perhaps.

– The word ‘systemic’ is helpful in that it seems to acknowledge that whatever is causing the symptoms is affecting the whole body (although that’s not at all obvious in the diagnostic criteria).

– The removal of the word ‘fatigue’ is helpful since, although fatigue is often a core symptom, concentrating on fatigue has masked all else. For many, pain is a much more pressing issue than fatigue.

– Emphasising ‘exertion intolerance’, or ‘post-exertional malaise’ should now put paid to the dreadful PACE trial, CBT and GET – all of which are known to worsen symptoms in patients with ME (as opposed to any other type of chronic fatigue of unknown cause).

Steps Backward?

There are several things I am confused about and concerned about, which may well represent steps backward and put patients with ME in more danger of misdiagnosis and inappropriate treatment:

– The new proposed diagnostic criteria mention nothing of pain – as previously mentioned, for many people fatigue is much less of an issue than pain. For myself and many others, this pain is not a result of exertion at all, I am simply in constant pain.

– The new name and diagnostic criteria do nothing to address the cause of the condition. Even ‘Post-viral fatigue’ was a better name in that regard. The fact that the diagnostic criteria are so broad (and despite removing the word ‘fatigue’ actually still seem to actually focus on fatigue / post-exertional malaise) and remove such core symptoms as sore throat, flu-like pain, and cognitive / neuro symptoms, may actually make finding a cause more difficult, and it will almost certainly make finding funding for research focused on the missed symptoms more difficult.

– The WHO (World Health Organisation) already has an agreed definition for ME and categorises it as a neurological condition under ‘disorders of the brain’. Who are the IOM to redefine the condition? (Who are the NHS, for that matter to disagree with the WHO?) See the Action for ME document which details the WHO definition and others.

It has been suggested that the whole SEID renaming and re-framing may actually be a Trojan Horse. I’m sorry to say I can well believe it. Inevitably the infamous psychiatrist, Simon Wessely has been asked to comment on the change of name and diagnostic criteria, and according to the article in New Scientist, he ‘welcomes’ the change. That does very little to reassure me that SEID will be any kind of improvement over CFS.

I’m concerned it may add to, not reduce, confusion around this condition,” he says. I never thought I would agree with such a man (who, since it is nowhere legitimately defined as a psychiatric condition, really should not even be asked.) But there we are. We’ll have to watch and see how this impacts us.