mistreatment | Your Jaw Never Gets Tired

A typical day

December 7, 2016

Anne Uncategorized acceptance, anger, bankruptcy, brain fog, breathless, chest pain, exhaustion, fatigue, gratitude, headaches, hyper sensitivity, life coach, loss, ME, ME Awareness, medical professionals, mistreatment Leave a comment

Yesterday was a typical day. With me exhausted although I managed to do very little.

Morning :

Woke at 7.15 am. Had a cereal bar and water for breakfast. (Keep these by the bed.) Then sent a few text messages. Then had a quick look at Twitter (thats usually where I get any news about whats happening in the world). And re-tweeted a few tweets by other people to help raise awareness about ME or CFS. I don’t manage to talk to people on twitter much. It’s usually too exhausting for me. But retweeting some things makes me feel I am doing something. Taking part.

By 9 am I was pretty tired and that was all I had done. Oh – and I had brushed my teeth too. The headache, which had started after about two minutes of using my mobile phone, was now quite bad. (Even thinking and typing a text can be an exhausting activity.) And the exertion of brushing my teeth had made me out of breath and the movement had made the headache even worse. I had to give in and rest. Lying down in bed again. And took painkillers.

I had to rest in bed until 3pm. Lying down, doing nothing, no stimulation at all, sleeping much of the time. 6 hours rest/sleep needed after 90 mins of “activity”. I put activity in commas because in no normal well person’s world would it take 90 mins to send 4 texts and 4 retweets on twitter. And brush teeth.

Afternoon :

Got up around 3 pm. Managed to freshen up using body wipes (wet wipes). And got dressed. Eat a banana and a babybel cheese for lunch. And drank more water. Lots of water. As just the exertion of freshening up and getting dressed made me out of breath and thirsty. And I was tiring again. Tried to fight the urge to rest – as I was hardly up any time. Tidied up the bedroom, opened window and folded the duvet back to air the bed. Forced to rest as now very tired, even more out of breath, and chest heavy. Plus neck pain.

Sat on sofa in living room for about an hour or more. Just resting, with neck and head propped up and supported with cushions (to try to ease neck pain). I was so tired again that I wanted to lie down on the sofa. But the feeling of weight on my chest got worse when I tried this.

By 5 pm I wasn’t really feeling much better. But I needed to eat something more. A sickly headache was starting up, and I was aware that I hadn’t eaten very much today. Which was maybe now partly causing the headache, or making it worse. (I always feel awful if I go too long without food.)

In the kitchen I just put some cheese and cold ham on a plate. With some cherry tomatoes. And a muffin. Ideally I would have liked to make a sandwich – but I couldn’t stand up long enough to do this. So it was a case of just grabbing what I could. After eating the food I felt a bit better. And was able to make a cup of tea. This helped ease the headache a bit – but the other symptons were still there.

I wanted to do something (anything) to try and distract my attention away from the symptons. This isn’t easy to do. Because doing anything physical is very hard with the chest symptoms. And usually increases them and I end up even more breathless with a worse “weight” on the chest. Or a tight restricted feeling. Reading wasn’t possible as I knew it would trigger more headaches. And it is hard to read and remember any of it with the level of “brain fog” that I have with ME. Watching any TV was out of the question too. As i couldn’t tolerate the sound, or any bright colours or movement on the screen.

So I eventually decided to listen to a recording from a website from an American Life Coach/trainer/motivational person. I had come across this on twitter and had saved the link, as thought it might be helpful. To be honest, I have probably saved hundreds of interesting looking links to things over the years on twitter. But I haven’t been well enough to read or listen to most of them.

With ME – the gap between what I would like to do and what I can actually do is huge. And a big source of frustration.

Early Evening :

I listened to the 30 min recording. And it was good – I liked it. I immediately forgot most if it of course (damn brain fog . . .). But I will listen to it again for sure. It was about taking full 100% responsibility for everything that has happened in your life. Especially the bad stuff. And losing any kind of “victim” mindset. It was good and I can definetely see the value in this. As I know I am holding onto a lot of anger, resentment and distress. And I still have so many nightmares about the bankruptcy (which is still ongoing). And about bad experiences with medical people. Plus the attempted PIP claim and terrible experience with Atos (nurse from Hell) just about finished me off.

But maybe even listening for 30 mins was too much for me. Not only did my headache and neck pain come back with a vengeance, but my head was spinning. And my mind racing with the memories of all the bad things that have happened over all the years I’ve had ME. All the losses. All the medical mistreatment. The possibly ill-advised Bankruptcy (bankruptcy in reverse really). My marriage almost breaking (several times) with the strain of everything. Then my brain was running through memories from the Property years – some rubbish letting agents, bad tenants (one actual tenant from hell), scum tradesmen, etc etc. A lot of bad memories. Or at least I was only recalling all the bad ones at this point.

My energy just totally crashed. And I had to take more painkillers and get into bed. Just as my husband got home from work. Luckily he would make the dinner. (He always has to make the dinner, and I’m really grateful for this.)

I didn’t manage to get up again until 11.30 pm. Still felt rough but was hungry and thirsty. Hubby had eaten his dinner ages ago and was about to get ready for bed. So I warmed my dinner up in the microwave and eat it at midnight. Not ideal . . . But very grateful that hubby had cooked it. And also grateful (or relieved) that I had been able to get back up and eat. There have been many nights I couldn’t do this at all. And had to eat in bed, sometimes in a lying down position. Or just too exhausted to eat at all. Over the last few years.

But limited and small as this day was – I would rate this as an OK day. Out of a choice of Good, Bad or OK.

I have had much worse days than this over the last few years.

And I have had better days too.

And hope to have more better ones.

But it shows how far removed our lives are from normal levels of ability when we have ME. In what other illnesses would a person class their day as OK when all they could manage to do was :

Send a few texts messages, be on twitter for 10 mins, up and out of bed for only 3 or 4 hours (much of this resting), eat some food, listen to a 30 min recording, talk to husband for about 20 mins.

Its not much . . . But as I mentioned – I have had many poorer days than this. And I’m very grateful for the better days.

Media nonsense about ME and exercise

October 31, 2015

Anne Uncategorized exercise, exertion, ignorance, ME/CFS, media, mistreatment, positive thinking, treatments Leave a comment

This article has been re-blogged from the Blog http://www.uttingwolffspouts.com which is written by Claudia Gillberg and Geoffrey Jones. I had to reblog this as it concerns a very important subject that has often been misunderstood concerning the impact of exercise on people with ME or CFS. The dreadful article on the front page of a major newspaper this week prompted a justifiable outcry from many sufferers of this illness. And it was no wonder – our lives are hard enough without having to contend with this rubbish. The Telegraph article is here http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html (if anyone wants to read it).

The blogpost speaks for itself – and I love the title :

” THE SCIENTIFICALLY CHALLENGED UK MEDIA STRIKES BACK “

” When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it¹. I’ve long become used to the appalling coverage of ME by the British media² and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement¹.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity to its reporting in the press. Indeed, flawed as the PACE trial is, at no point do the researchers suggest GET or CBT cure ME, as claimed by Ms Knapton in her inaccurate and mendacious article¹.

Most in the ME community are aware of the substantial problems with the PACE study, including the selection criteria, the self-reporting and lack of objective measures, a flawed methodology, which have been outlined in detail by various authors including Angela Kennedy, Professor Malcolm Hooper, Tom Kindlon, Jane Colby, the late Dr Elizabeth Dowsett and, most recently, David Tuller in the US. Unfortunately the UK media continues its obsession with treating ME as a non-illness affecting lazy people whose only problem is their inability to pull themselves together and push through their fatigue, which seems to be the only symptom the media acknowledge.

To start Knapton states:

‘Chronic Fatigue Syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found’¹.

Not a single word in that opening paragraph is accurate. The study included a large number of participants who probably did not have ME as the primary criteria for participating was fatigue. Despite this the PACE trial was only able to establish that some participants showed mild improvement while undergoing GET and CBT (though these were self-reported, subjective results). Participants remained ill and severely limited in their ability to perform normal daily activities. To repeat, any positive results revealed by the trial were barely notable yet according to Knapton,

‘The new study found that graded exercise therapy (GET), in which sufferers gradually increase activity levels, as well as cognitive behavioural therapy (CBT), which encourages positive thinking and behaviour, had a dramatic impact’¹.

A definition of dramatic: sudden and striking, impressive³

The PACE trial in no way justifies such an adjective, a more accurate description would be, ‘a negligible impact’ though this would not have supported the slant of Knapton’s piece.

Her next paragraph aggravates matters,

‘The finding is important because many CFS sufferers believe that exercise will make their condition worse.’¹

Sufferers do not believe, ME is not a religion (the proponents of the psychosocial model and their media acolytes exhibit cult-like behaviour but that’s a separate issue). ME sufferers know exercise can make their condition worse through first hand experience of the damage it can cause, something supported by scientific studies illustrating physiological damage^(4,5).

Two more paragraphs in the article were particularly disturbing:

‘But gradually increasing exercise and therapy to remove patients’ negative thoughts that they would never get better seemed to work. Prof Sharpe said the study was likely to prove controversial because a “minority” believe that CFS is either caused by a virus or is chronic and cannot be alleviated.’¹

In what other chronic illness would sufferers be accused of contributing to their illness due to their ‘negative thoughts’? A more clear case of blaming the patient is hard to imagine and to make such a statement with zero evidence to support it, is unworthy of an academic. Suggesting that only a minority believe a virus triggers the disease and that it is chronic is not only untrue, there has never been any suggestion that ME is an acute condition, but a use of language designed to offend ME sufferers. The following paragraph continues in the same vein,

Prof Sharpe added: “It’s wrong to say people don’t want to get better, but they get locked into a pattern and their life constricts around what they can do. If you live within your limits that becomes a self-fulfilling prophesy.”¹

There is no science to substantiate anything the professor states in this sentence and I can think of no other illness in which a researcher would speak of sufferers in such a fashion, it is immoral, breaches the Hippocratic Oath and constitutes abuse of a vulnerable group of patients.

Another point to make, highlighted by John Cohen in Science⁶, is that the basis of the original trial’s supposed success has been undermined by this latest study. The PACE trial claim that GET and CBT were the best treatments for ME is demolished by the finding in this latest study, which revealed that all therapy options produced the same results. To quote John Cohen,

After analyzing the responses, the researchers concluded that the benefits reported in the original study, which assessed participants at 1 year, were maintained for at least another 1.5 years. But the participants randomized to receive the two interventions that initially did nothing also improved, and there “was little evidence of differences in outcomes” when compared with the people in the other treatment groups’⁵.

Sharpe et al try to explain this by claiming that participants undergoing other therapies switched to GET and CBT in the intervening period but there is no evidence to support this conclusion. I’d also like to query what condition participants are in now, as the suggestion that any improvement was maintained for ‘at least another 1.5 years’ implies their health could have declined after this period of time.

Knapton’s article provides a list of ME symptoms, which exclude post-exertional malaise (PEM) arguably the defining symptom of the illness. It also includes a link to a video featuring Martine McCutcheon talking about the lightning process, telling you all you need to know about the malicious intent behind this article.

‘These are not magic cures’ says Sharpe. Apparently Sarah Knapton disagrees.

A final comment from Professor Sharpe:

‘It’s sometimes quite hard to understand what motivates the very vocal minority that gets upset by this apparently benign bit of moderately helpful treatment’¹.

Perhaps some of the headlines in the British media this morning will enlighten the good professor as to why so many in the ME community are upset by his ‘treatment’.

1) http://www.telegraph.co.uk/news/health/11959193/Chronic-Fatigue-Syndrome-sufferers-can-overcome-symptoms-of-ME-with-positive-thinking-and-exercise.html?utm_campaign=Echobox&utm_medium=Social&utm_source=Twitter#link_time=1446019914 (Accessed 28/10/2015)

2) http://uttingwolffspouts.com/2015/02/14/chronically-fatigued-the-uk-media-and-the-recently-released-iom-report/

3) http://www.oxforddictionaries.com/definition/english/dramatic (Accessed 28/10/2015)

4) http://www.ncbi.nlm.nih.gov/pubmed/23813081 (Accessed 28/10/2015)

5) http://www.ncbi.nlm.nih.gov/pubmed/25990639 (Accessed 28/10/2015)

6) http://news.sciencemag.org/health/2015/10/criticism-mounts-long-controversial-chronic-fatigue-study (Accessed 28/10/2015)

A Long Slow Road

August 16, 2015

Anne Uncategorized bankruptcy, banks, exertion, financial, frustration, GPs, ME, medical professionals, mistreatment, PEM, property 1 Comment

Everything is very very slow.

HEALTH/ME :

Trying hard to get a bit better health-wise.
But it’s like walking such a fine line with ME.
Do just that bit too much and the payback is punishing. You crash, so many symptoms go thru the roof, and it feels like back to square one again. Then you rest to recover, try to build up a bit, feel a bit better, physically stronger, some more energy. And you try to do something big – like just go out!
Then wham and crash – all over again.
This condition is such a nasty piece of work. And I have to manage it on my own.
No medical help at all.
Last weekend I managed to get out twice – late on the Friday and also the Sunday afternoon. This was marvellous and I enjoyed both so much. But then “crash” – and I had to spend most of the last 6 days in bed again. I’m not even going to bother detailing all the different symptoms as I’m so sick of them.
But its not easy.
And painfully slow.

BANKRUPCY STUFF :

This is painfully slow too.
I don’t mean the waiting to be discharged from bankruptcy. This can happen after 1 year – or it may take up to 3 years. And of course is on your record for ever. Well, 6 years I think is technically correct. But as good as forever I feel.

That’s not the problem.

The problem for me is the amount of mail, phone calls etc that I still get from people like mortgage lenders, etc. And the adverse effect it has on me every time.
Last week alone my husband posted off 3 big A4 size envelopes stuffed full of letters, demands, threats, etc to our Trustee In Bankruptcy. We try to send any mail on every week. Last week was admittedly worse than usual – but even then.
It’s not ideal.
And this is maybe 18 months after we first took advice from the bankruptcy adviser.
And later decided to proceed. My health had totally crashed to my lowest ever level of functioning in Feb 2014 so I really felt this was the best, if not the only option.
All this time – and still it all goes on and on.
Nobody seems to even acknowledge that we are Bankrupt. The Trustee say Yes they tell everyone. But still I am being pestered.
Getting to the stage (again) that I don’t even want to switch on my mobile phone. Because of missed calls, voicemail messages, etc. This isn’t good because I still want to be able to use text messages at times, or maybe listen to calming music on the U Tube app in the phone. Even if I can do very little else some days.

I think I have said this before – this process has been torture for me. And has had the effect of worsening my ME overall. I have more symptoms now than when it started.
Plus recurring nightmares over the last 18 months.
My automatic stress response to this stuff is very heightened now. Very over sensitive. The smallest of things sends my nervous system into orbit some days. And this triggers off so many debilitating symptoms (eg, the severe headaches). It’s automatic and just happens without any thought about it. Or choice. And it takes ages (sometimes days or more) for me to “come down” again. And for the symptoms to lessen.

Basically, my whole nervous system feels like it is in shreds.

And the point of the Bankruptcy (the WHOLE point) was to give away all control of everything to a Trustee In Bankruptcy. So they would deal with everything and everybody. Most especially all the properties and all the mortgage lenders.
That was what we were told would happen.
If I was able to continue to do stuff like this – then I wouldn’t have chosen voluntary Bankruptcy in the first place.

If I had a pound for every time I’ve said this over the last 12 months . . . .

I do realise that people may read this and think – yeah, but you must have been in a big mess financially ?

And yes, of course debts had accumulated. I had been hemorrhaging money over a few years leading up to Feb 2014 because my health had been getting even worse. I mentioned this in a previous post somewhere.
BUT – if I had been able to keep going then these would have been cleared in a few years by selling maybe 2 or 3 properties. But I couldn’t keep going – as there was no way of getting a reasonable break from everything.
ALSO – if it was just about financial reasons then we could have sold our home ourselves. Rather than handing it over the the Trustee. They sold it at a cheap price (as expected). And within just a week.
And the profit made (or equity released) was approx £150,000.00. No small sum.
Plus our 3 mortgage Endowments were taken from us and cashed in. (This was a total shock.) Producing over £40,000.00. Again, no small sum.
So we “gave away” almost £200,000.00 in “available assets” to the Trustee.
My business debts (property debts) when my health crashed early 2014 were nowhere near this sum. And at this point everything was being paid ok, nothing was in arrears, no missed payments or anything like that.
I was even still getting 0% balance transfer offers from a few of the credit cards that I was using for business cashflow and expenses.

So the issue wasn’t the amount of debt being carried – but more the fact that I could do no more. Physically (and mentally) I had nothing left.

So everything given up in return for Bankruptcy = a Trustee taking over and dealing with everything = total rest and peace of mind for me = the chance of my health improving.

It has been nothing like this.

I have no idea what’s going on. And it’s very hard to get anything in writing.
From day 1 – I begged for everything in writing. From the bankruptcy adviser and then from the Trustee In Bankruptcy.
(Because of my health and most especially the brain fog.)
But it just doesn’t happen.

But I know the only way thru this – is to go thru it.
And short of medicating myself into a stupor with perhaps very strong anti-depressants – I just have to take it.

GP PROBLEM :

After 10 months of trying – I’m not much further on with getting an ME friendly GP or any help or support.
The health centre I was trying to join – I had to admit defeat. And give up. A GP there had been mentioned as being good. But the staff (a nurse and 3 different medical receptionists) had no knowledge or time for people with ME. They just kept telling me to do things I wasn’t able to do. And were abrupt and totally lacking in any understanding or patient care. Every interaction I had (one appointment and 3 phone conversations) resulted in just making me more ill with the upset and stress of it.
These people are being paid salaries to treat people like this.
So it was 9 months of time and energy wasted for me.
As I’ve said before – you need to be much more well to be able to cope with this sort of stuff.

However, I think I am now successfully registered with a new small GP surgery.
I say I think – because I haven’t had any card from the health board or anything in writing to confirm this yet. The receptionist said I should get a card to confirm after a few weeks. Hasn’t arrived yet. But hubby phoned and the receptionist said it was OK.
This surgery is small with just one GP. But there was no in-person appointment with a nurse or GP required to apply to join. Just a form which was fairly simple. OK, it still took me ages to complete with the brain fog, headaches, etc. But fairly simple by most people’s standards.

The only thing is – I have no idea what the GP’s view and attitude towards people with ME is yet.
I will just have to hope for the best . . .
Anyone reading this who has no experience of ME may think I am over-worrying about this.
Here are just 2 examples from folk on twitter very recently of how it can be :

example 1
A sufferer’s GP told her father that he “didn’t believe in ME” and that it was “a charter for malingerers” .
This resulted in a long standing family break up. As it presumably resulted in the person’s father disbelieving his daughter and giving no support.
Which to be honest is absolutely unforgivable. But the GP did terrible damage here.

example 2
A male sufferer changed to a larger health centre to try to get better treatment, more respect.
There were 8 GPs in this health centre.
Over time (probably a long time) he found out that 7 out of the 8 GPs did not believe in ME. And only 1 did.
At least there was one.
But that’s a rate of 88℅ who would treat you poorly at that centre. And just 12% who would be likely to give you any support at all.

I do hope this isn’t reflective of the nationwide average . . . .

– – – – – – – – – – – –

Ok, thats all for now.
Incredibly exhausting to write all this. Much longer than I planned.
But it is therapeutic.

Voices From The Shadows DVD

January 3, 2014

Anne Uncategorized anger, deaths, ME Awareness, medical complaints, medical professionals, mistreatment, neglect, psychiatry, sadness, severe ME, Sophia Mirza Leave a comment

It’s Jan 3rd 2014.

I have just finished watching the dvd of Voices From The Shadows.
Probably a year after many people have seen it – I know.
I had always meant to buy this, but 2013 was a very bad year and I managed to do very few things I wanted to.

A fellow sufferer had her husband deliver this it me to watch after I sent her a Xmas card. And had mentioned how bad I had been over the last year or two.
(I was very touched by her thinking to do this, as she is affected more severely than me.)

I had planned to get my husband to watch this with me, but then decided to watch it on my own first.
And I’m relieved I did as it was upsetting.

I thought I had become slightly hardened by now to all the tragic stories of people with severe CFS and severe ME. NB. I don’t mean that the way it sounds.
Its not thru lack of interest, or ignorance, or lack of experience.
Totally the opposite.

This last year 2013 has been the worst I have had in a long time with my CFS. If not THE worst.
Talking to fellow sufferers on twitter over the last 2 years, or just reading what they are saying, opened my eyes to a whole world of people suffering on a similar level to myself. In many cases, much worse than myself.
And I have read many peoples’ blogs too.

It has all helped me no end, but some of the stories and experiences have been awful.

So I guess I thought I would watch this dvd and find it very interesting, totally relevant and hugely worthwhile. But I wouldn’t get too emotional about it – because of all the stuff I have learned over the last few years. And gone thru myself.
Plus we all know the treatment of ME and CFS by the medical profession in general has been pretty rubbish – don’t we? (That’s addressed to fellow sufferers of course.)

But here I am at 2am – compelled to start typing this blogpost.

After I finished watching the film (approx 1 hour long) I just sat with my head in my hands on the sofa for a wee while.

Feeling emotionally drained and sad – but then fired up with anger.
(And anger was one of the reasons I started this Blog in the first place.)

For me, the worst bit in the whole film was listening to the voice of Sophia Mirza.

In the recording made when the people came to section her and remove her to a mental institution. Against her, and her mother’s, will.
(The people being her GP, a social worker and a psychiatrist. And policemen.)

Sophia was the 1st person in the UK to have Chronic Fatigue Syndrome recorded on her death certificate.
I had read about the tragic story of Sophia before and read thru the excellent website set up by her mother Criona, at : www.sophiaandme.org.uk.

I had already read about the awful mis-treatment of this young woman by all the medical professionals involved. And how she ended up dying at the young age of 32 when her ME deteriorated to such an extent her body could not recover.

On this website is a transcript of a full recording made on the day when she was unbelievably sectioned. On 11 July 2003.
And I had read it all, and it was awful.

But hearing her actual voice in the film was even worse. So painful to listen to.
It made the tragedy of her story all the more real. A tragedy that should have been preventable.
But instead the medical mis-treatment caused her ME to deteriorate to such an extent that she just couldn’t recover from it.

What a waste of a young life.

The tears eventually came, and lasted some time.
But then I would challenge anyone with this wretched condition not to shed tears, listening to the actual pleas of this young woman :
“I’m an ME patient, not a mental health patient” she keeps saying. And her heart-breaking pleas not to take her away, how it will make her worse.
And of course, it did make her worse. It killed her.

Sophia’s story is actually like something out of a horror film.

The film explained something for me I never understood before, ie. why her mother’s complaint to the General Medical Council (after her death) was not upheld .
The answer was so blindingly obvious that I almost smacked myself across the head :

The people at the GMC dealing with the complaint were psychiatrists . . .

You couldn’t make this up. How could this have been allowed ?

The explanation about psychiatrists on the GMC ruled on the complaint = the anger I am still feeling right now.

But this is just one part of the film and the people featured in it.
There is much more. All awful stories.

I don’t have enough energy to write any more just now. But my anger was so stirred up I had to write this post.
I think everyone with ME and CFS should buy this film and make at least one other person (a non-sufferer ) watch it.

To raise awareness.

Some Days Positive Thinking Just Doesn’t Work

September 14, 2013

Anne Uncategorized anti depressants, despair, frustration, housework, Mickel Therapy, mistreatment, My Life Today, positive thinking, random Thoughts, self help Leave a comment

Negative Blogpost Alert !

You have heard the song It’s My Party And I’ll Cry If I Want To ?
Well this is My Blog and I’ll moan if I want to . . .
Feel free not to read on.

There are some days when all the positive thinking in the world just doesn’t work for me.
And I want to throw all my self-help books, gratitude lists, motivational, inspirational & philosophical quotes, etc etc etc onto the nearest bonfire.

And just scream :

I hate having CFS
I hate how I have lost so much of my life to it
I hate how it becomes more “normal” to have symptoms than not have them
I hate how I have been in bed for so much of this year
I hate how it is often 1 step forward, then 2 back
I hate the view out my bedroom window – the side of next door’s house, a brick wall.
I hate how the longer you have CFS the more symptoms you seem to develop
I hate how I have been treated by GPs

I hate that I have been taking anti-depressants for such a long time, maybe 8 years.
I actually wonder if they make the “brain fog” worse ? This is an incredibly disabling symptom (especially when trying to work).

I hate how I can’t manage GP visits well, always a disaster. I crumble every time.
I hate how my husband often plays it down to people. It makes me look as if I’m exagerating how bad it has been.
I hate that the house always needs cleaned.
(I can’t manage it without half killing myself, hubby is overloaded with stuff to do, and we can’t afford a cleaner.)
I hate that our grass is always overgrown at front and back.
(Same reasons as above but substitute gardner for cleaner.)

I hate that our central heating system doesn’t work properly (the boiler is approx 40 yrs old). The heating doesn’t heat the rooms upstairs well (bedrooms & my office).
Dreading winter.

I hate that many people seem to think CFS and ME are trivial
I hate that I have no help or guidance managing my CFS.
On my last visit to my GP I virtually begged for practical help. She just doubled my dose of anti-depressants. This was 2.5 years ago.
I hate that I wasn’t strong enough (physically or mentally) to have coped better with the stresses of the last few years. Partly caused by a tenant from hell, a very poor letting agent and scum/bullying tradesmen.
I hate that I cannot get away from my work and have a long long break
I hate that I know how much Mickel Therapy helps CFS, but I haven’t been able to use the “tools” for the last few years.
Everything in my life seems to be working against it.
I hate feeling that I just want to run away from everything at times
I hate how very pathetic this all sounds . . . !
Some days I am totally sick of everything.

I feel quite a lot better now for having this rant.

I am sure it is healthy and positive to let these bad emotions out once in a while. Coping with a long term (mainly negative) situation by just surpressing these emotions all the time – we are in danger of becoming like a pressure cooker. Ready to burst.

We can positive think all we want, but this will not change the practical reality of a physical condition.

To quote what David Mickel once said to me :

” The body is the boss”

ie. it will not be fooled into being told a situation is ok when it’s not.

The Secret Files – more info

December 5, 2012

Anne Uncategorized internet, ME/CFS, medical professionals, mistreatment, research, secret files 3 Comments

I have reaslised that I must add some info here on how to actually obtain these files – as have had a few requests.

As I mentioned in the main post :
All the work in obtaining these files, and with as much info as possible re-instated into them, is all down to the hard work of Valerie Eliot Smith. Or @SnakeTempleGirl on Twitter.

Her Blog is at : http://www.valerieeliotsmith.com

Her post about these files gives the info needed to obtain them online. It is quite easy to do if a bit slow, and is free of charge.
The files aren’t secret as such anymore – but hadn’t exactly been made very public either. Plus a lot of info contained had been removed (or redacted) and it is because of Valerie’s hard work that most of this got re-instated into the files.

Hope this is of help to anyone wanting to view them.

I hope to read them very soon – but realistically will probably not be until the weekend. I think I will need to be relaxed, calm and collected – well before I start reading anyway . . . !

The Secret CFS/ME Files

November 30, 2012

Anne Uncategorized anger, disbelief, GPs, ignorance, landlady, ME/CFS, medical professionals, mistreatment, neglect, research, secret files, support 5 Comments

The Secret ME/CFS Files
File No : FD/23/4553 from the Medical Research Council (MRC)

This week or weekend I am planning to settle down and read this file. Probably with a cup of tea – although given the contents a large gin & tonic might be better.
To explain – this will be no pleasant read and have no doubt it will make me very angry. But there is no question at all that I am going to read it.
All 158 pages of it.

This is a file from the Medical Research Council (MRC) on CFS/ME. It had been filed away in the UK National Archives in 1997. And wasn’t due to be released until 2071.
The contents seemingly go back as far as 20 years.
NB. The lady who has obviously done a massive amount of work bringing this to the public attention is :

Valerie Eliot Smith ( @SnakeTempleGirl on Twitter )

She is a long-term sufferer of ME/CFS and describes herself in her twitter profile as an “angry bird”. And how well I understand that anger. It is the Number 1 reason I started this Blog.

Why am I angry ?

1) Because of the poor treatment I have had from GPs since maybe the late 1980s. So far back it is hard to be sure now. Not angry at the fact that I wasn’t cured – but more the way I have been treated all these years. With contempt, bullying, disbelief (obvious but unspoken), no respect, disinterest, irritation, silence, blank looks, etc etc etc.
Left to rot would basically sum it up.
Take anti-depressants and get on with it.

NB. I should add here that 2 of the 3 GPs I have seen over the years I’m sure are nice people & good GPs when it comes to other problems/conditions – ie. not CFS or ME related. (In fact they have been quite nice with a few other things over the years.) The contempt and bullying I mention was from the 1st one and goes back a long time now.

2) Secondly because of the way people with CFS or ME are often treated by the general public.
This can include employers, work colleagues, acquaintances, relatives – and unfortunately sometimes even friends and family. We are desperate to talk about it to people important to us – not because we want sympathy or attention. But because we want them to understand how bad this condition/illness can be and how much it limits us at times. All we want is understanding and hopefully some allowances made for us – so that the friendship can continue even when we are limited.
But sadly, sufferers sometimes experience boredom, impatience, no empathy or understanding at all, intolerance, disbelief and unpleasantness.
Plus many marriages have broken down, with partners leaving. I read somewhere it was estimated 50% of marriages break down when one partner has CFS or ME. I wasn’t shocked – only surprised it wasn’t more. The stress and strain can be terrible, intolerable even, on both people. Especially over the long term.
My own marriage almost didn’t survive and came very close to breaking down in January this year. After being together since 1991. Many reasons. But I would say most caused by me having CFS such a long time. Directly and indirectly.
The sheer stress of everything over so many years, without any help (for either of us) almost finished us off. We are still struggling. Not so much with our marriage but with almost everything else in our life ! It has been very hard indeed the last few years. But, after a 9 month spell apart, we are now living together again.

NB. How does this relate to these medical files you may be wondering ?
Well although there is really no excuse for people treating us poorly – I am sure the attitude of the medical profession ( ie. the experts) has not helped things one bit.

3) The sheer injustice of it all.
Being made to feel I was lazy or work-shy by the medical profession. And sometimes others. Always indirectly of course. Never stated outright – therefore denying me the opportunity to challenge it and put the record straight.
I worked full-time from 1977 until 1999, then part-time 1999 – 2003. And studied hard to get professional qualifications in Insurance and in Financial Services : A.C.I.I and M.L.I.A (Dip) and FPC (Financial Planning Certificate).
In the early 1980’s I worked in numerous 2nd jobs in pubs 3 or 4 nights a week – on top of my full-time job. This was to save up the deposit to buy my 1st flat (and cover all the costs, furniture, fees, etc). I was in my early 20s at the time and most of my friends were enjoying going out, socialising, etc. But I wanted to do this and just focussed on it. It wasn’t easy and I did it over a period of a few years. Until around 1986.
Then to be treated as lazy, or basically “worthless” by the medical profession – how could I fail to be angry ?
The lack of almost any medical help, or any type of help. No “Care Pathways” or “Management Guidance” offered to me at all. And being told that I wouldn’t get any financial help from the State as I would not qualify with CFS. My GP did not help me at all. In fact I think the only time my previous GP agreed to sign me off work (for 3 or 4 weeks) was when both my Mum and Dad were seriously ill in hospital at the same time. My Dad was in hospital for a month and had a lot of health problems. Then my Mum had a heart attack at the same time – and ended in in the same hospital (Glasgow Royal Infirmary) for 2 weeks.
So I maybe shouldn’t complain too much . . . Allowed time off work for 4 weeks. This was maybe 1987.
In late 2002/03 my GP then did sign me off work, and eventually diagnosed my CFS. My Mum was terminally ill at that time, and I was struggling very much even before that.
But in order to get this (signed off work I mean for a few weeks ) – my husband actually had to come to the Doctors Surgery with me. To help me talk to her.

NB. I want to make 2 important points here :

a) I am not angry because I wanted to have lots of time off work. Then give it up forever and live on State Benefits! But it would have helped me so much if I had been treated seriously and shown some respect by GPs. Because I am certain that if people are forced into struggling on for a long period of years (as I was) then the illness/condition becomes more ingrained. And so much more difficult to get rid of.

b) With regard to state financial help – I wouldn’t have wanted, asked or chosen to live on benefits. But I fully understand that many have to do so because they have no choice, and are own their own. But to have received some financial help would have been good. I mean people get child benefit (previously totally un-means tested). And having children is a choice – having CFS or ME isn’t.

4) Now a Landlady – since 2004.
This is hard too and is eating up most of my life just now. Because my CFS has got worse over the last few years. So makes it harder than it should be.
I “got into Property” in 2004 as was no longer employable. It had to be something where I wasn’t answerable to anyone and could do my own hours.
I took a big risk (financially) to start this up. I didn’t have any money other than some savings. Never had any inheritances, or lottery wins.
I just borrowed and kept on borrowing . . . ! Including re-mortgaging the house – with my husband’s agreement of course.
It was designed to be long-term – and will be very long-term now. Keeping it all afloat throughout the last few years (since the credit crunch and recession started in 2008) must be one of the hardest things I have ever done.
Unlike GPs and other medical people I have no guaranteed salary at the end of each month. Sometimes a loss. And I just have to work the hours it takes.

NB. My point here is not meant to be “Oh woe is me” or “I never knew it would be this hard” . . . etc etc. It is simply that I am working very hard – but am still treated dismissively at my GP surgery. It seems that no matter what you do, or say, if you have CFS or ME noted on your files – you are deemed not worth bothering with.

But : why do I want to read this file, if it is going to make me even more angry ?

Because I have to.
I have to see the contents in black and white for myself.
I feel it will confirm I have not been over-sensitive all these years. In feeling I have been badly treated by people who are highly paid professionals. Who I had turned to and had relied upon to help me.
And it will prove that I have not been alone. And have a very justifiable right to be angry.

GPs treatment of CFS is . . .

September 20, 2012

Anne Stress anger, CBT, David Mickel, GPs, ME/CFS, medical professionals, Mickel Therapy, mistreatment, neglect 1 Comment

One of the main reasons I started up this blog was to get out some pent-up anger and emotions that have been blocked in over all the years. One area has been dealing with GPs and other health professionals.

Note :

I have removed this post now. For a few reasons :

1) Don’t want to get struck of by my GPs surgery !
Although it would be good to find another more “CFS/ME aware” GP – I don’t have the energy or the time to do this. Not right now anyway.

2) I don’t want to cause any offence to the clinical phsycologist I was referred to for the standard CBT treatment years ago. He was very nice and easy to talk to, and certainly made me feel much better about myself at the time. To that extent CBT did some good. On the emotional front.
But unfortunately was no practical help at all for my CFS.

3) I certainly don’t want to cause any offence to David Mickel in Elgin – who must be the best GP anybody with CFS or ME could wish to have. Having met him and knowing his sense of humour – I am pretty sure he would not be at all upset at my list of rants. But as he is doing some GP work again now (as well as the Mickel Therapy) I decided to add this anyway.

4) Now that I have had my mini-rant and got it off my chest – I feel much better for it !

Your Jaw Never Gets Tired

A typical day

Media nonsense about ME and exercise

A Long Slow Road

Voices From The Shadows DVD

Some Days Positive Thinking Just Doesn’t Work

Negative Blogpost Alert !

The Secret Files – more info

The Secret CFS/ME Files

GPs treatment of CFS is . . .

Note :

Anne

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