Tag Archive | ME

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.

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

Karma

Just a quick note to let you know we have moved (or rather are in the process of moving, since we haven’t let the old place go yet, to make moving gradually possible – not the way ‘normal’ people move, I know, but it seems to be the way we do it!)

We have no phone or broadband at the new place for the time being (other than a very patch connection to BT’s openzone hotspots or whatever they’re called. Better than nothing, for sure but frustratingly slow and requiring fresh logins every 5 minutes.

I am, I have to say, unspeakably happy to be away from the previous place. We’re in a bungalow now which is just wonderful. It needs lots of work, but it’s actually ours – we finally own our own home again, against all the odds. (If I have enough signal to upload photos I will).

As chance would have it, the week before we were set to move, my mum – who has bipolar disorder – had a crisis which meant I needed to stay and look after her, and when it became clear that she couldn’t look after herself (possibly due to dementia creeping in there too), I brought her home with me and she moved with us. Terrible timing, but since the bungalow is big and we had a ‘spare’ bedroom, it’s all working out (as well as any story including bipolar can).

From everything I can gather, although the local Psych team were trying to do what they could, it appears that mum’s GP was completely incompetent, so I’m hoping that we can get her a little bit more stable and happier with a bit of TLC from my great new doctor’s practice, and although she is very uncertain about the whole idea of moving, managed to persuade her to register here as a permanent resident so at least then the GP can do some proper investigations.

And, fortunately again, I seem to be quite well right now. Preganancy may have put my ME into remission, so I hope it will stay this way. I had a bunch of unsolicited emails this week reminding me that I should have been 21 weeks’ pregnant this week, but I’m not allowing myself to slip back down into grief and misery. I really don’t have time.

How bad science misled chronic fatigue syndrome patients

I get all my medical news from twitter, and I haven’t been on for a while (because typing on an android screen keyboard is too much like hard work when your hands and wrists have no strength), so I missed the news that Wellesley’s team had been forced by court order to release the data from their faudulent pace study earlier this year – Thank-you to everyone that made that happen. Full details in the article below.https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

As everyone was agreeing on twitter when I looked last night, it’s about time to hear some very loud apologies from journalists, the medical establishment, and especially Simon Wellesley himself. But we won’t be holding our breath.

My question now is, when so much evidence was already out there, and every other medical authority – including the World Health Organisation – agree that ME is a neurological disorder with a possible viral component, how on earth did the UK allow psychiatry, of all the inappropriate disciplines, to take over our ‘care’ at all, ever, in the first place, let alone for so long. And when will they finally be kicked off the case? It would be difficult to find any doctor, team, study, or discipline more thoroughly discredited.

Postnatal Depletion—Even 10 Years Later

This is a really interesting article, and I can’t help but notice the similarity between the symptoms of what the author calls ‘post-natal depletion’ and ME/ CFS/ Fibromyalgia – doctors and scientists and article writers are constantly coming up with new theories,  but given that I got ill right after giving birth in 2003 (and the fact that I have had 9 pregnancies altogether, and at least 5 of those were back-to-back without a break), I wonder whether this might more readily explain how and why I became ill. And perhaps suggests a way forward to get healthy again.

http://goop.com/postnatal-depletion-even-10-years-later/

Looking forward

Hi people 🙂 A happy post for a change. I’m feeling good!

I have been so down for so long. All the heaviness of the past few years just heaped up on me and I was so weighed down I couldn’t get up. There is obviously a situational basis for my misery – I had the most miserable year of my life living by the beach (ironically) because I was ill in an unsuitable house, with financial troubles (not to mention marital, car, family troubles!) and no friends! But it was more than that. The stress had worn me down until I had no mental or emotional strength to fight it.

But then, there’s no rhyme or reason to depression.

black cat

I feel better now, but there’s no particular or obvious reason why I should feel better. I just do. I’m sleeping better too, and hopefully that means that the vicious circle is straightening itself out.  I hope I’ll be able to shrug it all off now and things will start to look better on a permanent basis.

I know I keep saying this, but I don’t have the life I wanted, or hoped for, or thought was right around the corner. But we hopefully have some good things on the horizon, and I truly am grateful for all the good things I have.

(But, do you know what? the glad game doesn’t work when you’re deep in the pit.)

I started a dose of amitriptyline about 3 weeks ago, and honestly I usually forget to take it, so I’m not sure whether or not it’s having any effect. But at this point, knowing what the deep pit looks like, I thoroughly recommend taking whatever hand is held out to you, just to get your head above the parapet where you can see the sun again.

Funnily, you know – I have been down in the pit deep enough to ask my GP before to give me anti-depressants, but that GP refused (bizarrely, a few years before, when I was desperately trying to get a proper diagnosis of ME, I was offered anti-depressants when I didn’t need them). This time, I just casually mentioned to my new GP that battling ME makes me feel a bit depressed every now and then, could I try anti-depressants?

No problem.

It totally depends on the doctor you get. If you need it, don’t take no for an answer, or by all means find a better doctor. They are so variable, and some of them are complete buggers.

So now, despite contemplating moving house again for the 7th time in just over 5 years, I am actually looking forward to moving. I think. I mean, I’m not looking forward to the actual moving of course, that would be crazy. But I am looking forward to being settled.

I’m looking forward to living right in the centre of town where everything I need will be within walking distance. I’m looking forward to living in a place where I already have a bunch of good friends who can’t wait to visit us.

Incidentally, I keep wondering why I found this place so unfriendly? I can’t work it out. I don’t think it has anything to do with Cornish culture, because we’re not even that far down into Cornwall, and it isn’t that Cornish here. (And before I am accused of being racist, I never thought it was that, but the suggestion keeps getting thrown into the mix, so I thought I’d mention it. Whether there is a truly Cornish culture, or whether what we’re experiencing up here is just countryside culture is another topic.)

I think the problem here has been a mixture of being here at the wrong time, with the wrong aged children (home educating never isolated us until we moved here, but the HE group in this place was just filled to the brim with under 8s. The only families with teens we knew passed through and moved away long ago) and apparently having nothing in common with any of the people we met. It can’t be helped. I think we weren’t meant to stay here, it was just for a season. I do just wish that season had been a little easier. But anyway. It’s nearly over.

And here’s another irony for you. After all this time – five years with virtually no friends despite huge effort on my part to be social and gregarious (without appearing desparate! lol) to no avail – I just discovered a local vegan group that didn’t seem to exist when I searched for it a year ago, or five years ago, and I’ve MADE FRIENDS.

Really.

So here’s what I am expecting to happen: when we move away, we will be coming back here to visit and go to the beach more than we ever did when we lived here.

Isn’t life just gloriously ridiculous?!

p.s. I just passed my one month as a vegan mark. It’s about as long as I’ve managed to stay vegan before, but this time I have plugged into social networking for accountability, and I’m thinking about getting a vegan tattoo. That would probably keep me vegan. Oy vey.

 

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).