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A typical day 

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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 probably now 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 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.  All bad memories. 

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. 

 

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Reblogged : Severe ME: ‘Took nearly 40 years to be diagnosed’

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The medical mistreatment and ignorance about how bad ME is seems to be a world-wide problem.
This is one person’s experience from Australia :

ME Australia

by Sasha Nimmo

Between 24,000 – 60,000 Australians have severe ME.  This is the first in a series telling the stories of Australians with severe ME.

Given the wrong medical treatment and intervention harmed this patient’s health to the point of no return. Disbelief by medical professionals and community care workers made life even more difficult. This patient fears further mistreatment so asked to maintain anonymity.

Above is a picture of Basil, an affectionate miniature fox terrier and company during difficult times.

Even after so many decades of illness, this patient still holds hope in medical research and participates in studies at Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, one of the few places studying severe ME.

This patient shares their story with us.

What was your life like before you became ill?
For me, it is not a straight forward answer as I have had mild ME since I was…

View original post 1,333 more words

ME Awareness Day 2016 : Comments from sufferers

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I wanted to do something for today but am very lacking in physical and mental energy.
So I am just posting a selection of comments from people that I came across on Twitter.
I think these well describe the situation we are in.

“Many people with ME are suffering against a backdrop of ignorance and disbelief”
Sarah, England

“I’ve been ill for 10 years but was only diagnosed in 2014”
Amelia, UK

“If you phone the NHS seeking a doctor who has any knowledge of this illness, they cannot name one person. Not one”
John, UK

“Daughter has ME in UK and little support. GP commented ‘you’re not that bad are you?’  I told him he only sees her when she is well”
Person in UK

“People with ME doing exercise under medical persuasion have become bedridden and appallingly ill”
John, Scotland

“It is very sad that government have allowed an entire disease to go unchecked for 3 decades”
Kati, Vancouver

“I am only 31 and yet everday things like taking a bath exhaust me”
Mary, USA

“People struggle to comprehend the enormity of the situation of people with ME. It just seems too unbearable”
Nicola, UK

“Diagnosed with breast cancer. Astonished by reactions. Where were all you caring people when I was much more ill with ME/CFS ?”
Linda, Belgium

“I used to be ashamed of this, but I have almost no support. One friend. Daughter sees me once a month. Have severe progressive ME and alone”
Louise, Canada

“I know far too many people who’s loved ones see, disbelieve, make life hell for the person with ME. And leave”
Lindy, area not stated

“So many people have said to me ‘it must be great to stay in bed all day’ . Well No, it actually isn’t”
Female, UK

“Sat on the bathroom floor because I am too tired to dry myself”
Person in UK

“People close to us must also find acceptance : understanding that ME isn’t a mental block and we can’t just run it off”
James, UK

“I’m always amazed at the amount of people who aren’t accepting. The psychosocial view of ME invites judgment on the patient”
Henry, UK

“What does it say about our situation that we have come to EXPECT neglect, disbelief, unprofessionalism and dismissal from doctors ?”
ME Action Network,  Global

“I fought so hard to recover from my broken neck and become a triathlete and Advanced Personal Trainer, yet I cannot beat damn ME. Says it all”
Carmel, England

“I can relate to that. I survived a rare aggressive form of Non-Hodgkins Lymphoma,  but I cannot beat ME”
Female, UK

“Patients are left household, bedbound and even fed by tubes. We as patients have to raise awareness and funding alone for ME/CFS”
Jade, England

“And yet 1 out of every 4 people with ME have lower quality of life than people with heart failure, end stage AIDS, or stage 4 cancer”
Kit, USA

A Long Slow Road

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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.

” Bullies ” comment and The Lancet

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There was a bit of a row on Twitter yesterday. And reading it (which I could not help) left me feeling angry and upset.
I will probably exhaust myself writing about it here – but it is too important not to.

It involved an editor from The Lancet making some astonishing comments to ME/CFS sufferers. Then actually blocking some people on twitter – so that they could no longer interact with her and The Lancet. Or be able to read anything she was writing about them, or any other health stuff.

The comment which jumped out at me involved an accusation of bullying. Followed up by a 2nd tweet showing she had no knowledge or understanding about ME/CFS at all.
If I have understood things right, her comments were initially in response to an ME sufferer pointing out inaccuracies in a piece that had been published in The Lancet. And commenting that another publication/magazine/journal had apologised for something – I,m assuming similar inaccuracies.

The 2 actual tweets were :

1st )
” What exactly would we be apologising for?? For having a view? Ridiculous.
You,re bullies ! ”

2nd )
” Chronic Fatigue = polarised field ! We,re entitled to our view as anyone else. Its an editorial !!
Write a letter if you,re that aggrieved ! ”

Gosh.
I mean, where do you start  . . . . ?

I could write so much, but simply don,t have enough energy. So I will just need to make my comments in shortish bullet points.

1) This Lancet editor has less than 1000 followers on twitter – but The Lancet itself has 164,000 twitter followers.

2) People with ME/CFS have a very serious, debilitating condition. In some cases people who have Very Severe ME have to be tube-fed as they are too weak  even to swallow.
Even the most mildly affected often struggle with simple daily activities. That the rest of the world take for granted.

3) We are hardly in a position to be bullies, are we ?
I thought bullying was about having power and control. In this situation – who has this ?
I don,t think it is an ME sufferer or the ME community.

4) Another ME sufferer tweeted :

” Jaw dropping response to chronically ill #MEcfs patients. Many cannot write an email ”

And there were many many other upset, outraged comments too.
Not surprisingly.

5) The ” write a letter . . ” comment really upset me too.

I have a multitude of symptoms to struggle with most days – just like thousands of other sufferers. The “brain fog” symptom has been pretty severe over the last few years in particular. Making writing an email or a letter a very difficult, time consuming and energy-draining task for me a lot of the time. It is difficult physically and also mentally.
I know I have written on this blog over the last few years about how much I was struggling with this. How an email that should take maybe 20 mins would take me 4 hours. And I would pay for it by being wiped out sometimes all the rest of that day. And the next day too sometimes.
etc etc etc . . . .
(A letter can be even harder if you don,t have somebody to post if for you.)
This was the reason I had accumulated such a huge backlog of work, and my business was spiralling out of control.
ie. That I couldn,t even manage to do simple admin tasks most of the time.

And the repercussions of this for me have hit me very hard.
Voluntary Bankruptcy, and the loss of almost everything – now in my 50,s.

So I did feel enraged at a health editor from a powerful health publication making such comments.

Over and out for now.

Headaches and finding a new GP

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Friday morning.

The frustration of this condition knows no bounds, and I guess I just need to write about it today.

Last Sunday I got out with my husband during the day.
Our car is fixed now and it was so good to get out. I think it was the first time I have been out during the day (ie, in daylight) for maybe 8 weeks.  I suspected I’d be paying for it a bit the next day – especially after climbing all the stairs to get back into our top-floor flat once home.
But that would have been ok. Well not ok exactly, but I would have accepted it without feeling too stressed about it.

I’m writing this on Friday morning and have been pretty much bed bound for the last 4 days. Not so much with exhaustion and weakness (although that too). But with crippling headaches (again).
So frustrating after managing a few hours out on Sunday. That horrible reality of 1 step forward then 3 steps back.

It all got triggered by an argument on Monday evening with husband.
Won’t go into details, but it was an issue that’s been argued over many times.  For me, very upsetting. And it always feels unresolved.
Hey ho . . . but that’s married life isn’t it ?
But it made me think about how emotional exertion (from a bad event) can sometimes have an even worse  impact on this condition than doing too much physically. At times.
If that makes sense ?
Well it made  sense to me.
Being in bed for 4 days completely disabled by headaches and exhaustion is bad.

Oh god, these headaches are vicious.

Been using the usual stuff like Panadol Extra together with Ibuprofen – didn’t work. Eventually gave in and resorted to taking Solpadeine Max the last two days – which I really don’t like taking because of the addictive affect of the codeine in it. And you are only allowed to use it for a maximum of 3 days anyway. Also tried using cool gel migraine patches on my forehead.  Some things would take ages to work, or not do anything at all.

Lying in bed with so much pain was driving me mad, but I didn’t have the strength to get up and move around. Or do anything to distract myself from the pain.
All I could do most of the time was try to “go with the pain” and breathe. As slowly and deeply as I could. Over and over.
Most of the time this didn’t work.  And I have to confess I wasn’t thinking calm or relaxed thoughts . . .

I was dwelling on stuff like :

This is the UK with a proper health-service. Not some backwater country with no health service.

It’s ridiculous that I can’t get any help with some decent pain medication.
Its really not much to ask for.

I’ve been mentioning these headaches to GP for years and years.

And at least twice to docs at the Homeopathic Hospital.

But nobody listens to a word I say.

And the last GP who phoned me from the surgery I have been with for 28 years was awful and actually made things even worse.
(See last post. The 5th section – it was quite a long post.)

And it is so bloody hard to change docs. To physically do it I mean. With this condition.

This is a situation I’m really struggling with.  And have done for years.

So far, I have managed to get a registration form from another surgery. But my husband had to go in to collect for me. As they don’t post or email them out  regardless of your situation. The receptionist I spoke to didn’t seem to understand much about the limitations of ME/Cfs. And it will be impossible for me to actually speak to the GP until I am registered as a patient.
(I don’t mean I wanted to speak to him as in a proper appointment, I wouldn’t expect that. But just to speak for a few minutes to kind of see what his manner towards people with ME is like.)

The process, as I understand it, is :

1) You have an appointment/examination with the nurse and fill in the form (I’ll need to complete it in advance).
2) Then (IF they agree to accept you as a new patient) your medical records get transferred.
I was informed this can take 2 months. I have no idea why that long.
NB.  You might not be accepted if it is felt you have “too much” wrong with you. (I heard this unofficially, not from the GP receptionist I have to say.)
3) Once this has all happened you can actually speak to the GP – if he hasn’t retired by that time . . .
and then the crucial one
4) You you have to hope (and pray) that he has some knowledge of ME. And even more importantly – a decent attitude towards it.

So its a kind of catch 22.
You have to go thru this process first, before you find out if it was worth all the effort of doing it (ie, to get a decent GP).
You may be rejected anyway.
You may complete the process then find out the GP and the surgery are even worse than the old one.

The chances of getting a GP who is more “ME/CFS friendly” and informed is maybe 50 – 50. Even that may be optimistic.

After just one phone conversation with the receptionist, I was exhausted. Mentally and physically.
And frustrated that she couldn’t understand why this is a difficult process for folk with ME/Cfs.  And may be pointless for me, and a waste of their time also.
I tried and tried to explain why it was difficult. But the longer I tried the more exhausted I got. And of course, the brain fog always gets worse in these situations. And I probably just started to sound drunk and confused.

I really need to be a lot more well than I am just now, to be able to do this.

When I was more well in the past – that of course is when I should have put all my energy into doing it.
But I didn’t.

But I will really need to persevere with this now.
I have doubts about the surgery for a few reasons – parking issues, suspect it may be quite a noisy surgery, etc. When my husband collected the registration form he said it looked as though it was “full of Romanians and asylum seekers” . . .
All I could think of was – as long as they’re not noisy I don’t care.
But the GP has been mentioned to me.
And I simply don’t have the energy to phone around various places. It would just be the same process everywhere from what I understand.
(Did try one other surgery but it was outwith my post code.)

At one point this week, I was actually trawling the internet for websites that sell you painkillers that normally require a prescription. But without a prescription. They seemed to be mainly American sites. But I couldn’t go any further with that – mainly because I just couldn’t tolerate looking at the tablet’s screen for long enough. And couldn’t concentrate enough to be able to read or digest the information.
However that was maybe a good thing. As this would seem a rather dodgy thing to do – maybe even dangerous.
But the pain was bad.

Today however, it is much less.

And I’m writing again – even if it is a bit negative.
I will try and do some lighthearted posts, I promise.

Voices From The Shadows DVD

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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 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.

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