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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 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.

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

Death of another ME sufferer

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I wanted to do this post about the very sad death of Jodi Bassett who was a long term sufferer with Severe ME. Probably Very Severe ME.

She died on 11th June 2016.
She was just 40.
She had suffered from Severe ME since she was 19.

She created an amazing and comprehensive website called The Hummingbirds Foundation For ME.
http://www.hfme.org.
To help others.

I think this was mainly done from her bed as she was so ill and disabled by her ME.
To quote from her website, its purpose was :

” Fighting for recognition of ME. And for patients to be awarded the same basic human rights as those with similar neurological diseases such as M.S. ”

I’ve only been able to read tiny bits of the site because of my own symptoms being bad a lot of the time.

Jodi explained on the website

” I’m 100% housebound and 99.5% bedbound.
Yet like so many other ME sufferers I have had to fight so hard just to try to get even basic help and understanding from doctors, friends and family members ” .

That sums it up really.
The almost impossible position that people with ME are in.
We have to fight so hard for anything.
But the exertion makes us even more ill.
Such a vicious circle.

I’ve given personal examples of this throughout my blog.

The news about Jodi’s death I read on twitter. Where I get most news.
There were many tweets about it on Twitter.

People were very saddened by the news.

In the meantime I wanted to help raise awareness. 

And express my sadness for Jodi and so many others who have died.

R.I.P Jodi

#MillionsMissing – another photo

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Following on from my last post on the #MissingMillions day on 25th May 2016.
Here is another photo taken on the day of a lot of empty pairs of shoes that were sent.  This was in one of the American cities.

I just could not work out how to add this photo into the previous blogpost – in place of the one I deleted. Which would have been better.
I realise it is probably very simple when you know how . . .
But I struggle a lot with using any tech things like tablets, mobiles, laptops, etc. So many ME symptoms get triggered off, or made worse.
Hyper-sensitivity, electro sensitivity, or whatever . . . In any case, it can make simple things difficult and painful to do.
Just sending text messages can be torture even with my smartphone’s brightness on the absolute lowest setting.

Anyway, I’ve probably mentioned this before.  But just to explain why I have done another blog post just to correct a photo.

Making a meal of something that ‘should’ have been simple . . . .

Missing from our own lives

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This was the scene in one American city yesterday – just one city.
For a day of worldwide protest called #MissingMillions.
Update :
Photo removed – see notes in Replies section. Sorry for confusion.
I will try to insert another photo into this post – when I have the energy to work out how to do it. Not very good with tech stuff like this . . . !

The shoes belong to people with ME who sent them in. Or got someone to send them. (I didn’t even manage to do that.)
To represent the fact that so many of us with ME are not well enough to attend a protest. Even if it was on our doorstep.

We are missing from our own lives.

And from the lives of our friends and family. Even much of the time from the lives of our husbands, wives or partners.

We are pretty much invisible to the world.

I am exhausted after just following it on twitter yesterday.
To the extent that I haven’t been able to wash, get dressed, or eat any proper food today. Just snacks.
(But I have had many days where I have been much worse than this.)

I wanted to do this blogpost as it was a very emotional thing to see all the photos of empty shoes.
Incredibly emotional.
So many lives going to waste.
And I bet all these shoes only represent a small percentage of the number of sufferers.

It was uplifting too.
And I felt less alone than I have done in a long while.

Surely this will help society realise that we have a serious illness which is very disabling ?

And that we’re not just a bit tired.
Or having a nice sleep in bed.

I wish . . . .

ME Awareness Day 2016 : Comments from sufferers

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image

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

2015 in review

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The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here's an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,300 times in 2015. If it were a cable car, it would take about 38 trips to carry that many people.

Click here to see the complete report.

The Real Face of CFS . . . . reblogged

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http://wp.me/p2E7tJ-8N

It’s 12th May and is ME Awareness Day and I haven’t managed to do a new blog post for the day. Although I did want to . . .

But I would still like to do something to join in the spirit of the day.  So I’m just going to publish the link to a previous post I did last year which was quite popular and got a lot of hits at the time,   ie  :

“The Real Face Of CFS”

NB. The bit where I said I thought I was getting slightly better – well that didn’t last long unfortunately.
Still struggling at the moment.

But seeing all the comments, links and blog posts that fellow sufferers have already posted to Twitter this morning is inspiring and uplifting.
And it reinforces that I am certainly not alone.

Apologies for taking a lazy option here,  especially when so many others have gone to a lot more effort.
Better than nothing though . . .

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.

The Real Face of CFS . . .

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OK, here are 4 photos.
I think I am being quite brave putting these on. Especially as photo 3 is awful !

Photo 1 : A Good Day

Photo 2 : An OK Day

Photo 3 : A Bad Day. In bed, exhausted, in lots of pain (head, eyes, neck, shoulders). Unable to function.

Photo 4 : The same Bad Day, but the pain starting to ease off. Maybe 5 hours later.

When people see me – I am maybe like photos 1 or 2.
But for most of the time, people don’t see me. And this is very typical of people with CFS or ME.
This year, I have probably looked like photo 3 for a huge amount of the time – maybe 75% of the time.
In bed, exhausted, in pain, not functioning in any way.
Just ill.
It has been one of the worst years I can remember in all my years with CFS.

But I think I’m starting to improve slightly now. Very very slowly – baby steps.
I’m almost scared to say this – incase its tempting fate. If that makes sense ?

I wanted to publish these photos – as Photo 3 is the “real face of CFS”.

OLYMPUS DIGITAL CAMERAOK DayBad Day Recovering

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