Tag Archives: 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.

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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

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.

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).

Dreams of the Good Life

The_Good_Life_(logo_for_1975_TV_show)

I had a really good run of about 8-10 weeks of feeling much better physically at the beginning of this year. I can’t explain it – there seems to be no obvious correlation between my physical health and my state of mind, and no clear connection with my dietary habits or lifestyle. I wasn’t eating anything different than I was in the Autumn and up to Christmas when I was really ill (actually, I think it has been worse this year, as we haven’t been able to afford a good diet recently); and yet, I had a very welcome reprieve.

But now I have begun to notice the clear signs of relapse, and I don’t know what has caused that either. It is a challenge to slow down and take it easy (which is essentially the only thing you can do in response to an impending ME relapse) when you are already generally so inactive.

I have noticed my dreams becoming much more vivid and intense again – while I was feeling better, I didn’t seem to dream at all. (If I recall any worth mentioning, I will share).

I really desperately want to turn my life around, get well, get fit, get slim and healthy, reach my potential, start working again. I have lost more than a decade to ME, and I don’t want to lose any more. I really do not want this.

I can’t help thinking about positive thinking and the ‘law of attraction’ again. You’ll know that it irritates me no end, and I have written about it a couple of times. And yet, and yet. I keep coming back to the whole idea.

Am I attracting bad luck? Am I somehow causing my ill health? Am I mis-using the ‘power of words’ and bringing negativity into my life? And by the same token, is it possible to change things around? Stem the tide of bad luck? Attract light and life and all good and happy and lovely things instead?

Or is it just a matter of frame of mind?

I find myself dreaming (in the sense of fantasising, not actual sleeping dreams) of a better life – a life where I am healthy and active, and working hard, and able to make a better life for us all round (actually, you probably already know that my fantasy is having a country farm, working on the land, and practising increasing self sufficiency – the ‘Good Life’).

Tom and Barbara in their garden, The Good Life, BBC TV

Tom and Barbara in their garden, The Good Life, BBC TV

One of the ‘positive thinking’ gurus on twitter suggests that the way to invite what you want into your life is to behave as though you already have it.

Well, I can’t physically pretend I’m well, or go digging the land, but I think I can practice the happiness that I imagine I would have if I had that life, choose joy, pretend that I am already there.

Make believe.

Will it make the real thing come a step closer? Will it invite happiness into my life? I have no idea. But it seems considerably preferable to concentrating on how terrible reality is.

Budget Healthcare

I know that we are supremely blessed out of all the world to have a publicly funded healthcare system. I am extremely grateful for it. In the case of my son, it saved his life… but only after almost taking it through misdiagnosis and negligence (see the page above on Type 1 Diabetes).

I don’t know whether it is the same across the board or whether my family and I have been particularly unlucky with bad and lazy doctors, but I could recount a catalogue of poor care and misdiagnosis. In fact, I think I will (indulge me):

  • When I was 12, I was knocked off my bike in a hit and run incident, causing a head injury and concussion (and actually who knows what else, as despite a litany of symptoms after this I have had no follow-up?) There was no room on the children’s ward, so I was placed in a single room off the men’s geriatric ward. I was allowed no visitors except at the ward’s very limited visiting times. I didn’t even receive nursing from the children’s ward. So to put it mildly, a horrible experience all round. (Incidentally, the police never investigated the hit and run either, so some guy who probably thought he killed a child – he didn’t stop to check – was just left to carry on with his life without so much as a caution.)
  • When I was 17, I went to the doctor reporting abdominal pain and a year of missed periods. This doctor had already missed my brother’s Crohn’s for more than ten years so I had armed myself with information. I suggested that I thought I might have ovarian cysts, so she sent me for a scan which confirmed my diagnosis, but I was told they were best left alone. I was diagnosed with Poly-cystic ovary syndrome (PCOS) but not told. I did not find out about this diagnosis until another doctor happened to find it in my notes 25 years later, despite having multiple miscarriages in the intervening period.
  • When I was 22, I had a debilitating throat infection with swollen glands which kept me off work for more than two weeks. The doctor refused to visit me. When I finally was well enough to go and see her, she told me it was ‘probably’ glandular fever but refused to write me a sick note for work. (Incidentally, I don’t think this was the first incidence of this illness, and I suspect it goes back to early childhood.) I remember getting in a lot of trouble for that!
  • In 2003 right after the birth of my fourth child, I seemed to have a recurrence of this illness which absolutely knocked me down with widespread pain, digestive troubles, and a host of other unexplained and apparently neurological symptoms. I can’t be sure whether or not it was the same thing or something different, as I was never tested for EBV (The Epstein-Barr Virus, which is the virus responsible for both glandular fever and tonsilitis.) I went to the doctor multiple times, only to be told that I was depressed! (what?!) Later, this bizarre misdiagnosis changed to indigestion (what?!) and IBS caused by stress (what?!) Lastly, she suggested Chronic Fatigue  (which seems quite bizarre to me as I never once mentioned fatigue as one of my core symptoms although it was present, it always seemed to me to be a secondary result of the illness, as is depression) but then told me she didn’t believe in it anyway and refused to diagnose it!! (what?!) Finally, after 13 years and several different opinions from different doctors, I finally got a diagnosis of so-called ‘ME/CFS’. A step in the right direction perhaps but not much help, and really on no basis at all.

Jackie commented yesterday on one of my previous posts on ME, drawing my attention  to some articles explaining the very fundamental differences between ME and CFS, and I will share them below. As I am sure I have mentioned before, the NHS has ignored the WHO’s determination that ME is a neurological illness, and instead has chosen – under the direction of a group of now largely discredited psychiatrists who like to believe that it is an imagined illness – to use their own ‘NICE’ guidelines which conflate ME with ‘Chronic Fatigue’.

CFS and ME Comparison Chart

CFS is Always a Misdiagnosis

ME v CFS – They’re Not the Same!

Reading through these important articles (and I recommend the Hummingbird Foundation as one of the few places where you will find reliable information about ME – see my health links to the right), I am struck by how easy it would have been to have sent me for a brain scan when I first got ill. Either it would have shown something and I could have received a correct diagnosis immediately, or it would have been clear that it wasn’t ME and further investigation needed to be undertaken to determine the true cause of the illness.

But the NHS does not routinely offer brain scans to people who present with ME-like symptoms. (In fact, I am still pushing for a scan relating to my head injury more than 30 years later because I strongly suspect pituitary damage, but I might as well be banging that head up against a big brick wall!)

To save a bit of money, the NHS lumps genuine ME together with unexplained CFS and recommends only a treatment which can severely damage people with genuine ME (although this may be alright for people with chronic fatigue that isn’t ME), with no regard whatsoever to the years of suffering and lives wasted. The same is true of people with clear Thyroid conversion issues, but whose TSH appears normal. (More to say on that another time.)

ME/ CFS/ Fibromyalgia (which may or may not be the same illness) used to be diagnosed by a process of exclusion. But when I went to the Rheumatologist and received the dubious new diagnosis of Fibromyalgia, he told me that this is no longer the policy in the NHS, but rather, a (mis)diagnosis is offered on the basis of what it ‘appears to be’. This is truly scandalous. So I was not tested for Rheumatoid Arthritis, Sjogren’s or Lupus, despite having an overwhelming list of symptoms that would warrant such testing.

When I went last week to my first meeting of the local Fibromyalgia support group, I was surprised to find a large number with multiple diagnoses including three with MS, and lo! When I looked up co-morbidities of Myalgia Encephalomyelitis, MS was listed as commonly occurring together with ME. But this is important – if you were once diagnosed with CFS but then later received a diagnosis of MS, CFS was a false diagnosis because the nature of CFS is unexplained fatigue – if it goes on to be explained, it ceases to be CFS. But if you had a diagnosis of ME and then later received a diagnosis of MS, they could be legitimately occurring together.

But this can only be determined by proper testing, which is not generally available on the NHS. The only choices available to an NHS patient are to fight and battle and shout and scream in the hope of getting the help you need (and risk getting labeled as a trouble-maker, or worse) or to get private testing done. Most people of course do not have that option open to them.

When my Dad was rushed into hospital by ambulance with heart failure, the front-line care appeared absolutely top-notch. We were all very impressed. But after being bullied into having an operation that he wasn’t strong enough to survive (for what nefarious reason I cannot determine), and having had a stroke on the table which caused a severe personality change, depression and emotional lability which made his last year hell, he was never offered any kind of aftercare. Physiotherapy was not even suggested until the week before he died, when of course it was far too late. Front-line care may be impressive, but the reality for the day-to-day care of living with chronic illness can only be described as poor in the extreme.

I don’t knock the NHS because I hate it. I love it, and I want it to continue and to improve, and I can only think that it has been mismanaged the way that it has for the express purpose of dismantling it and selling it off. I wish I knew what could be done to reverse the trend. But I think that patients can and must speak up when they receive poor care and demand better.