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” 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.

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Battered, Bruised and Bankrupt

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Voluntary Bankruptcy

This was the biggest and most life changing event which dominated most of last year.
And is still going on now.
I became voluntarily bankrupt w.e.f September 2014.
Or “in Sequestration” to use the correct scottish term,

I had to make this hard decision because my health was so poor. It had been steadily getting worse over the last few years and I was living a “non-life” really. In bed most of the time (maybe 80% or 90% of the time) struggling with all the horrible ME symptoms (an ever lengthening list). And at the same time trying to keep the property stuff afloat – mainly from bed. With my mobile phone for texts, emails, internet banking. And of course – actual phone calls. But phone calls had to be kept to an absolute minimum as I was too ill most of the time to carry out a business type phone call, or remember accurately what had been said . I relied mostly on emails as I could take breaks in a way you can’t in the middle of a phone call. Plus I needed a written record of almost everything – as my brain fog was severe.

But this was in no way ideal. You can’t deal with everyone purely by email or text. Plus a simple email that should take maybe 20 mins would often take me 4 hours to type. And that could often take me a day or two to recover from the exertion of doing even that.

My “PEM” or “PENE” (post exertional malaise / post exertional neuro exhaustion) has been severe and punishing.

Sometimes I would manage out of bed and get to my desk in my dressing gown and slippers. Looking like an unwashed wreck. Often I had to choose between washing/showering and getting any work done.
Almost every small bit of energy I could muster up had to go on work/property stuff. But over the last few years, I had built up a massive backlog of stuff that I would never have gotten on top of.

In the end I had to choose between my health and my ME getting even worse – or giving everything up.
When I write it like this, I can see there really was no choice.
But I went thru a lot of mental agony and anguish before deciding. Even started to have panic attacks at one point.

Doing this stuff had been my life for the last 11 years.
And I had struggled on for a very long time – because you can’t just get rid of 15 flats overnight. And I knew the consequences of “giving up” would be awful.
It wasn’t like resigning from my career in insurance in 1997 because of my health, after almost 20 years with the same employer. And walking away with nothing. And that door just closes behind you.
That was simple compared to this.

This has been terrible, and caused my health to go even further downhill. Which was one of my fears about doing it.
But it had to be done – and it was done to give myself a decent chance to improve again in the future.

When everything is more settled, and I get to a stage where I have some peace of mind.
I feel sure I can start to improve then.

I’ll probably write more about this in later posts.
As it has been traumatic, and I do need to get stuff out.

 

Moved house

For 2 reasons :

1) I wasn’t managing in our home very well any longer.
It was a semi-detached house with stairs (obviously). The stairs were hard. I could manage them some days – but with bad exhaustion after. Other days I couldn’t manage at all. My bedroom had been moved into a downstairs room some time ago – but the bathroom was still upstairs. (Had a downstairs loo, thank goodness.) My office was also upstairs (and I was hardly managing into it). The kitchen was too far away from the bedroom and living room for me. And when I did get into it, I often couldn’t stay in it for more than a few minutes at a time – as there was nowhere to sit down. And various windows throughout the house (incl my bedroom) I was unable to open – which would drive me mad.
It had a garden of course, but I rarely managed to get out in it over the last year or two. Any “good” days were spent trying to work and keep everything afloat. Not every one of course, but most of them.

2) The other reason was that we knew we would later voluntarily hand over our house to the Trustee In Bankruptcy. It would have been “taken” off us anyway. We had lived in it since 1998 and there was plenty of equity in it. So we knew it would be sold off to take the equity.
It has just gone onto Rightmove for sale this week. And it looks so sad and empty.

A house move is a stressful event anytime.
We moved well in advance of the bankruptcy taking effect. I actually moved into the flat before my husband at the end of May 2014. As I was desperate to get away from the house, its stairs, and all the other problems.

But as anyone with ME will know – a house move takes a huge toll on your health. Even when it’s a happy house move.
But in these circumstances . . .
I’m just glad its over – and I pray that we don’t have to do it again.

 

Had to change Banks – twice

How would I describe doing this (with ME) ?
Complete bloody torture . . .
The 1st change was recommended by the financial advisor and done ages before the bankruptcy. Bank manager clearly informed of probable future bankruptcy therefore ensuring everything done properly.
It took me months to get all the direct debits set up again – as I can hardly manage to tolerate using the laptop, or phone, etc with my ME being so bad.

Everything was just getting settled and running fine – then the bank decided that they were freezing and closing down all accounts (nationwide) for any bankrupt people. No notice was given at all. It just happened instantly.
This threw us into chaos.
Husband’s salary had just been paid in a week before this happened and we couldn’t get it back out. Well, we did eventually. But with a lot of hassle.
And trying to get a new current account once you have actually become bankrupt is very difficult. (No surprise really.) Most banks don’t want to know, and I actually thought we weren’t going to be able to open one at all at one point.
It was chaos, and mega stressful with ME.
Because you can’t pay many things without a bank account. And, as already mentioned, I am very limited in even being able to make phone calls. Or use the internet. And physically going out to places to try and pay things in cash was totally beyond me. (Still is most of the time.)
We now have a new account up and running (thank god).
But almost everything (DDs etc) have still to be set up all over again.

Not easy . . .

 

Homeopathic Hospital (or Centre Of Integrative Care)

Had a 5 day in-patient stay in January 2014.
This was a huge disappointment and actually resulted in my condition getting even worse afterwards. Especially when I read the doctor’s report a few weeks later.
There were many good things about the stay – I must add this.
Eg, the company of the other patients, getting good food at a regular time, the garden view from my bed (and got out into it twice), some of the meditation classes, a marvellous massage (called a Bowen Therapy massage), a great adjustable bed, a chair in the shower area to sit down on.
But there also a lot of odd, weird things that I tried to ignore and block out while I was there. This was hard work to do mentally, as a lot of things didn‘t “feel“ right.
But I didn’t speak up while there.
Partly because too exhausted – the whole effort of getting organised and getting there had taken its toll. And my husband was ill too and I was worried about him.
And the brain fog doesn’t make it easy to think clearly or express yourself when needed.
The other thing was – I didn’t want to be labelled as being “over-anxious” or having a “depressive/negative mood”. So I just kept quiet about things I was concerned or confused about.
But when I read the doctor’s (fairly short) report later – I was horrified. Angry, upset and despairing at what a waste of time and energy (mine) it had turned out to be.
Most of my symptoms had been ignored. And I reckoned about 80% of what I had said (or tried to say) had been dismissed or ignored. Or I hadn’t been allowed to talk about some symptoms.
Looking back – the total time the ward doctor spent with me was maybe 45 mins on the 1st day. Out of a 5 day stay. For 25 years of illness . . .
And a list of symptoms that was getting longer and longer. And more severe.
I had been so “grateful” and “positive” and “upbeat” while I was there. And on the last day, And even when I was just home.

But it all knocked the stuffing out of me.

I tried to reason with myself that I maybe had been expecting too much. But I just expected a doctor/doctors who had some knowledge and understanding of ME/CFS. Then I used up even more energy trying to go back over how it had gone so wrong, why had I not been able to make myself understood, did I not speak clearly enough, had I been speaking too fast (trying to get 25 years of history out remember), etc etc etc.

But it was damaging.

 

Have no GP now

Well, that’s not totally correct. But as good as.
The combination of having moved house to a different post code (although I’m actually closer to the surgery now), and the fact I haven’t been able to get into to surgery since 2011, means that I was told in October 2014 that I had to find a new GP.

I’m still reeling from the phone call that day.

A GP that I had never met or even spoken to before phoned me after my husband went into the surgery before going to work that morning. To ask for better (any) painkillers for me. My headaches have been very bad the last few years (mentioned while in the Homeopathic Hospital, but not taken seriously). And I had been awake most of the night actually crying with the pain. One of the worst nights ever, pain-wise.
The GP who phoned was abrupt and aggressive, wouldn’t let me speak, and I’m not sure she even understood what I was trying to say part of the time. She had a foreign accent.

She used phrases like :

“What’s wrong with you – are you housebound or something ?“
(Re why I haven‘t got to the surgery since 2011)

“We only do home visits for elderly people or people who cannot walk”.
(I didn’t want a home visit – just some effective medication.)

“If we come out to visit you and find out you CAN walk – we will be very angry with you.”
(I didn’t want a home visit but I was speechless at this.)

“I am noting your records now that you are not to be given any more prescriptions.”
(She talked to me like I had done something wrong. And was therefore punishing me.)

“There’s no rush – just within the next few days.”
(Telling me I had to change to another GP surgery – despite me trying to explain I hardly managed out, or even to make phone calls most of the time.)

And it went on and on.

I was in tears (of frustration) after it. And my heart rate felt like it was thru the roof for days later.
I have been with that surgery since 1987 and l don’t think I’ve had a home visit (or even asked for one ) in all those years.

 

Asked 2 ME Charities for help in finding a new “ME/CFS friendly GP”

1) Most recently (a few months ago) :
Paid £20 to join one and used a lot of time and energy emailing their advocacy worker. To explain in detail how limited I am and why I was asking for their help with the GP issue.
She was very nice, but explained she had a big backlog of people with ME needing help. And couldn’t really spend any time with me at this point in time.
She did mention one GP but I don’t think the practice is going to be suitable for other reasons. Even if he still works there, which she wasn’t sure of. And I would still have be a lot more well than I am just now to be able to make enquiries, or go there.

2) A few years ago :
The other charity (or maybe its more of a support group) – I used to be a member of years ago. But only managed to go to 2 or 3 meetings.
Anyway, I asked if I could pay the annual membership and rejoin. And explained my main need was for help finding a decent GP.
(This has been a big problem for me for years.)
I had hoped that somebody/anybody could just give me a recommendation for a decent one. I got an email reply just suggesting I come along to their next meeting – although I had tried to explain how limited I was, and rely mainly on email. I emailed back a few times asking could I pay their membership and rejoin anyway – but they just stopped replying.
So I gave up.

 

Car broken down at end of road – 5 weeks ago

I went into bankruptcy for health reasons.
To relinquish all the properties, and all the work and responsibility that went with them. And all the dealings with Letting Agents, Tenants, Banks, Mortgage Lenders, Tradesmen, Factors, Insurance Companies, etc etc etc.

It wasn’t so much for financial reasons – although debts had certainly built up over the last few years with me not being able to deal with things well, or quickly enough. I was making losses and haemorrhaging money.
But before the process started, everything was getting paid ok and nothing was in arrears. But it was a struggle trying to juggle it all.
Our assets well exceeded any debts – on paper anyway.
After the process we are left with almost nothing.
The Trustee is allowing us to keep this one flat to live in – mainly because it has a big mortgage on it and no equity in it.
But any life assurance and mortgage endowments were taken off us and cashed in.

But – the one bonus for us was they allowed us to keep our beloved BMW.
Only because it is so old – it is a Y registration. Which is roughly 15 years old I think. And it is probably worth less than £1000.
I have always loved this car.
It is the most reliable car we have ever had – and it looks good. And is so comfortable and secure to drive (when I’m able to.)
I was forever boring people with how reliable is has been.

5 weeks ago it broke down at the end of the street . . . .

A major suspension issue – involving a lot of labour time to fix (as well as an expensive part). To have it fixed by a BMW dealer or even a smaller garage would be unaffordable. The repair would cost more than the value of the car itself.
However, we are lucky that a friend of husband’s is working on it. Which will be much cheaper. But its a very slow process as he can only do bits at the weekends. In daylight. And the weather hasn’t helped.
But it will get fixed – eventually

 

– – – – – – – – – –

 

This blog post has taken me ages to write. I changed it so much. And didn‘t want it to be so long – but felt the need to get all this out.

And it will be the first that most people in my real life will learn about the Bankruptcy.
I have only managed to tell a very small number of people. Mainly because my health has been so bad and I have hardly managed to see anyone.
(And it’s not really suitable for a text message . . . )

I’ll probably write more about much of this stuff in future posts.
I’m desperate to be writing again.
It is a struggle as I’m still feeling quite unwell much of the time. And just trying to think and concentrate is exhausting. And using my laptop feels like torture some days.

Doing this post will no doubt wipe me out for days. I feel totally wrecked after doing it.
But in this case, it will be worth it.
The more I can pour all this stuff out (onto this Blog) – the more it is out of my head. And creates “headroom” for better stuff.

That‘s the plan anyway . . .

Things People Say (positive thinking & housework)

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” She keeps her house immaculate – but then she has such a positive attitude “

This one also merits a post of its own.

A friend visiting me at home told me about a friend (of hers) who was sadly very ill with cancer.

My friend has know me for over 30 years – therefore has known me before CFS and all the time I have had it. And she knows that I regularly struggle with doing some physical things.
Like housework and cleaning for instance.
Which can often defeat me (and cause me to stress over it). Or I actually manage to do some – but often pay the price afterwards with a bad relapse or “crash” and may need a day or so in bed to recover. Or at best a long rest – and waste half a day while energy is restored.

When my energy is very limited I often have to choose between essentials. Therefore things like managing to have food in the house, and make meals just has to take a higher priority. Or laundry. Or even personal cleaning/hygiene.
I mean what is the point of a clean house if I am a mess myself, with no clean clothes to wear ? And hair an unwashed straggly mess.
And food – well it’s an essential for life. We cannot do without it.
Also my work – which can quickly spiral out of control when I fail to keep on top of it. And is a constant challenge for me.

But a dust-free room, clean kitchen floor, hoovered carpets etc – just cannot be as high up the priority list when you have to choose. Everybody would agree with that – surely ?

All these things my friend knows – as I have explained over and over throughout the years.
So although I tried not to – I couldn’t help but feel upset at her comment. As it kind of implied that if only I was to change my attitude in some way then I too could have a lovely clean house !

With regard to her friend who was managing to maintain a spotless house despite her awful health predicament – I had to admit I was curious.
I was imaging some sort of mind over matter positive thinking. You know the sort of thing you read about where a person somehow manages to summon up a huge amount of mental energy and can make themselves do amazing things.  Like walk over red-hot coals in bare feet.

Finally I just had to blurt out “but how does she do it ?”
The answer was not what I expected.
It was : She pays her sister to clean her house for her.

Now there is absolutely nothing at all wrong with this as it was obviously an arrangement that suited both of them.  And if I had the money to spare then I would have a cleaner too for sure. But the way that my friend was quoting it to me as an example of “positive thinking” . . .

I think maybe because of the look on my face my friend went on to explain further that the sister  “hadn’t done very well for herself in life” and that her ill friend was actually helping her out by letting her clean her house and paying her for it.

For once I was left speechless . . . .

Footnote :

I decided to add this incase I have caused any offence or distress to any cancer sufferers out there with this post ? As this was totally not my intention.  The employment of a cleaner is something to be recommended 100% if you have the spare funds to pay for it.  The point of my post was the comment made by my friend – and wasn’t meant to sound critical of the person with the cancer in any way at all.

Things People Say (no legs comment)

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“In my day you didn’t stay off your work unless you had no legs ”.

This was a comment made by a close relative of my husband’s. It was made loudly in front me, but to another person – a neighbour if I remember right. But I tend to think it was for my benefit . . . as I was the only person in the room who was off work.
Actually the exact comment was something like : “unless you had both legs amputated” , or “unless you had broken both legs” – but you get the gist of it.
At the time I was working with Ntl but was off sick. Just to add – I only got paid “sick pay” for 2 months (full pay) and 2 months (half pay). If I had managed to hold on for 1 more month before caving in and having to go off sick, my entitlement would have been better as it improved with each year employed with the company. But “holding on” anymore just wasn‘t possible. I had got to the stage where I couldn’t hold on any more.
No choice.

This type of comment makes me upset for many reasons :

a) All the years I had spent working full-time (approx 21yrs)
b) All the studying over the years while working full time. (approx 6yrs) To get professional qualifications in insurance and financial advice & compliance work. I had been keen to learn and get on.
c) All the years I had worked in various 2nd jobs (pub jobs) at night to save up. (maybe 3 or 4 yrs)  For 3 or even 4 nights a week on top of my full-time job.

This comment implied that I was some sort of sciver and work-shy. And maybe happy to be at home while being paid ? (even though I either wasn’t paid much – or nothing at all if sick pay had ceased at the time).

It funny but this must be from around 2002/2003 – and I’m still trying to defend myself after all these years. After 10 years. It just shows how this sort of thing really takes root in your memory.

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