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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.

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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 . . .

Easter Weekend – what happened to it ?

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I realise I haven’t posted for some time.
The last few years is the worst my CFS and health has been for a long time. And it’s not really getting any better at the moment.
If anything it has possibly been even worse since maybe February-ish.
But to be honest it is hard for me to tell anything for sure.
The “brain fog” symptoms (ie, cognitive dysfunction) are quite possibly the worst they have ever been.
Plus the increased sensitivity to any stimulation (sound, TV, movement, brightness, reading, using computer, etc etc).
And all of this has been very severely disabling.
All I want is proper rest, head and brain rest more than anything. If that makes sense ?
But I remain hopeful, as I have some reasonable days. Even if they are quite few.
I guess I’m just posting this out of frustration, in the hope that I’ll feel better (emotionally that is) once I’ve done it.
And to keep my Blog going – as I  have been neglecting it.
Well, I have been managing almost nothing much of the time.
The smallest thing takes so much out of me, and the time needed to recover from it seems to get longer and longer each time.
So bloody difficult . . . .
But everyone with CFS and ME will know what I mean.
I haven’t managed to get outside the house for nearly 4 weeks now. The Easter Weekend has just passed in the blink of an eye.
Husband had the full 4 days off. I was glad he did – he was well overdue a break and some relaxation. I just wish I had been able to enjoy more of it with him, but have been in bed throughout most of the time.
The thing that has probably disappointed me most was not being able to get out into the garden. Ok, it is a mess out there, no doubt to our neighbours’ horror.  But I would love to have been able to sit outside and feel the fresh air and sunlight on my face.
I love the sun.
However we did enjoy some tasty   Chinese food on Sunday night and a couple of glasses of wine. And despite my ability to tolerate TV being very low just now – we did manage to watch a good film.
So it wasn’t all bad.

Going Into Hospital

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Can hardly believe it’s already the 24th Jan 2014.
I haven’t managed to do many posts in the last while, I know.

Everything has been too difficult.
Same old story . . .

Incase anyone thinks I am being a drama queen – my husband was almost in
tears the other night. And was saying things like “this is a terrible life” . . ,
NB.  He won’t thank me for quoting this here – but I have to.
As very few people can have any idea of how much struggling with CFS/ME long term takes out of you, and your partner. (Where you’re lucky enough to still have one that is.)
When there has been so little help available.

This is just a very brief update :

On Monday 27th Jan I will be getting the benefit of a 5 day in-patient stay (treatment and rest) in the Homeopathic Dept of Gartnavel Hospital in Glasgow.
And while I could say :
At last – some much needed help after what feels like a 25 year struggle, etc etc etc . . .  I do realise I am very fortunate to be offered this at all.
There are many people with CFS/ME much worse than me.
And so many people are just left to rot. Which was what I felt had happened to me – until recently.

Looking forward to this has without doubt given me a big mental & emotional boost – because how could this week fail to help me ?
Even just a little bit will be a huge bonus.
They are a Centre Of Integrative Care after all – which sounds ideal for people with CFS/ME.

But the effort involved in sorting out various work things, putting some changes in place, etc – has had a bad  physical effect on my health this past 2 weeks.

I’m getting that heavy pressing weight in my chest again. Lots of other symptoms too – but the weight on the chest (and out of puff so easily) is a problem that isn’t easily ignored.

I haven’t even been able to give much thought to what I want (and need) to take into hospital with me yet. And right now I have so little energy left that I can see me arriving at the hospital with just my handbag and maybe a toothbrush in it.
And little else !

But this is meant to be a positive post – and I have no doubt this coming week will benefit me.  Even if I do arrive looking as if I’ve been pulled through a hedge backwards . . .
And I’m really grateful for this chance.

I don’t think there are many of these Integrated Care centres throughout the UK.
I am very lucky that this one exists right  here in Glasgow.

Roll on Monday . . .

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

Some Days Positive Thinking Just Doesn’t Work

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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.

A Post For Invisible Illness Week

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Thanks to Twitter I know this week is “Invisible Illness Week”. And decided I would do a post to help raise awareness.

CFS (and ME) are classed as invisible illnesses.

For many reasons :

People can’t see it

People often don’t understand it

People often dismiss it as trivial and unimportant – despite some sufferers having died from it. eg. Sophia Mirza, Emily Collingridge.
(Sophia Mirza was the first person in the UK to have Chronic Fatigue Syndrome recorded on her death certificate in 2006.)

Some people are still so ignorant that “they don’t believe in it”.

It is a condition which can fluctuate (often dramatically) and this seems to cause confusion with people.
Although many conditions fluctuate to some extent. But with CFS and ME this isn’t “allowed for”.

Sufferers often look well – that is when you actually see them !
Much of the time we are invisible to the outside world as may not get out much.

Some sufferers are totally housebound, and worse, may be bedridden. In some very severe cases have to be tube-fed.

It is very hard to explain to people as there is often a huge list of symptoms – it is NOT just about being tired.

There is currently no recognised, established treatment that cures.

Many GPs are unhelpful and dismissive – which is actually a national scandal.

Many sufferers lead very reduced, limited lives much of the time.

But people just think they have become a bit quiet, unfriendly, anti-social, not making an effort, depressed, etc etc

Some sufferers manage to continue to work – but this often takes everything they have. And they have no energy left over for any quality life.


This isn’t a very good post as I have just listed points as they came to mind. Not really in any order.
And there will be lots more points, but I haven’t any more energy to spend on this just now.

Later today I am having some lunch with a friend.

We used to see each other every week.
But this year (now mid-September) this will be only the 2nd time I have managed to go out anywhere with her. The last time was in January, also for lunch.
We have managed the odd Friday evening in each other’s house. But even that hasn’t been often – maybe 3 or 4 times.

So, all going well, I will be enjoying a nice lunch. And nice company. And maybe a little glass of wine.
And hopefully looking reasonably ok. Well, clean and dressed anyway !

Whereas yesterday I was in bed all day following a 3 hour burst of urgent work the evening before.
And spent much of that time worrying and hoping that I will manage the lunch.

But that’s invisible illness for you . . . .

Shoes, Shopping & Friends (then Crash)

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I was going to call this post something serious like :

” Managing Post Exertional Fatigue : Life Gets In The Way ”

But as everyone with CFS and ME will know what I mean (and I have no new answers), I decided to go with a more fun title.

It has been a while since my last post, and improvement has been very slight. And very slow.
That endless dreaded post-exertion fatigue.
Can anyone tell me how you manage this thing ?
No – I thought not.

Life just gets in the way, doesn’t it . . ?

I managed to go to Braehead shopping centre one evening a few weeks ago. It was a Wednesday.
And bought a pair of shoes which were badly needed.
To celebrate the successful buying of the shoes I had a coffee in Costa Coffee and some mini-muffins. Ok, a whole bag of 6 which are meant for sharing. Well, they were tiny . . . and I felt I deserved them.

Because buying shoes I find very hard work.
All that bending and trying on. Assuming you can even find your size in the 1st place. eg. In places like M & S where all stock is out on display. But the sizes are often mixed up. Or the standard size range of shoes have had some wide-fitting ones thrown in.
And you get to the stage where your eyes are so blurred you can hardly see the sizes. Or be able to distinguish dark blue from black.
And bending forward to try on just one more shoe makes you so dizzy that you may just topple over onto the floor.

All very difficult . . .

After the coffee I went back to the car and drove over to the Sainsburys, also within the Braehead complex. Just two car parks away.
This was maybe pushing it, but I thought I was revived enough at the time. But with hindsight it was probably a mistake.
(Hindsight : what a great & useless thing this is.)
In Sainsburys I bought 3 items.
A birthday card, a quiche and a box of wine for the fridge.

Once back in the car, and things put in the boot, I knew I had overdone it. That feeling of all strength draining away and aches and pains.
And I still had to drive home.
Oh dear . . .
But I have been there many times before over the years.
And had my “emergency cereal bar” and some water in the car.
After eating the cereal bar, gulping down most of the water, and resting for a while – I felt able to drive home.
Only 15 or 20 minutes, but an unpleasant journey.

The physical weakness and aching muscles (neck, shoulders, upper back, right arm) made it a challenge. Then add in the “brain fog” which seemed to diminish my ability to concentrate, focus, judge distances, stay alert, etc. And of course the always-looming headache kicked in within seconds of hitting the motorway. I guess triggered by the effort it was taking to concentrate thru all these symptoms.

What a contrast to the journey out – just 2 hours earlier. A nice, easy, relaxed drive playing music in the car.

Once home in the driveway I phoned hubby with my mobile to come out and carry in the bags (just 3) from the car. It was all I could manage just to carry my handbag in.
He had 2 friends in who had come over to watch the football (the Scotland v England match).
I was glad they were still in, as had wanted to say hello. They are nice guys and good company, have known them a long time.
But almost every time they have been at our house over the last year I have been upstairs in bed. And not well enough to come down.
This time I was actually up – but knackered !

However, not to be beaten, I went straight to the kitchen. Followed hot at my heels by the visiting pussycat who had been hovering outside. (He was probably waiting on the football ending, as he doesn’t like the TV.)
Had more water and panadol extras – and got hubby to open the wine box for me and pour me a big glass. With ice, as still warm.
Then emerged into the living room to say hello and just sort of melted into a comfy chair.
The effect of the water, the painkillers working, the wine, the comfy chair, and the nice company all seemed to work wonders after a while.
And I stayed and chatted for an hour or more. Until the guys went home. Even had a 2nd glass of wine as I was now relaxed.

After they left I eat most of the quiche (just cold & sliced) as badly needed food. And this was easy, needing no preparation. Not the healthiest of dinners I know. But much better than no dinner at all.

With more hindsight (that word again !), I should maybe have just said hello, explained I was tired and only chatted for 10 mins, not had any wine, eaten food earlier, and gone to bed earlier with a cup of tea.
But I didn’t do that.

The next day the real “heavyweight exhaustion” kicked in big time. Body powerless and a lot of muscle pain. Even my legs were sore.
This kept me in bed for most of the next 3 days – the Thurs, Fri and part of Sat. And had to cancel two sets of plans for the Friday.
Frustrating ?
Yes. Soul destroying at times . . .

This is just part of everyday life with CFS or ME and post-exertional fatigue.
(You can see that “fatigue” is such a lame name for it though ? Totally inadequate.)

Its funny, I can imagine if either of the guys’ wives asked them
“Oh, how was Anne ?” – they would probably have said something like :

She seemed fine

or

She was in good form, chatting away

or even

She had a big glass of wine & gave this bloody cat that appeared from nowhere a saucer of water – while we were sitting gasping for a 2nd cup of coffee !
(Sorry about that . . . )

Well I haven’t worn the shoes yet.

But, overall it was still a good day.

The Last 7 Months

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Thought I would give a brief update on how I’m doing.

My 2nd last post (The Lonely Landlady) was a very negative sounding one, but it was simply a true reflection of my situation and health at that time. Nothing was exaggerated.
It wasn’t a negative thing for me – as writing the post made me feel slightly better.

Its now July 2013.
The last 7 or 8 months may have been the worst I can remember in all my years with CFS. As I have had to spend such a large amount of this time in bed. Maybe 85 – 90% – but not really sure.

So many bloody symptoms to handle and manage, and try to cope with.
I choose not to say things like “battle with” or “fight” because phrases like this just make me feel even more exhausted.
Not just the symptoms – but the frequency and severity of them.

The worst problems (symptoms) have been :

The Exhaustion :
Both physical & mental. Just dreadful.

Post-exertion fatigue/exhaustion :
Very bad, often after doing the slightest thing. One of the hardest, most difficult things to manage with CFS.
It is always there.

Headaches :
Crippling at times.
Spending £50 a month on different medications. Cheap things like paracetomal lost effect. One of the few things that helped was Panadol Extra. And Solpadeine Max – which I need to use very carefully.
(Why did I not get a doctor’s prescription ? Because I wasn’t well enough to get to the doctor. Or even consider a phone consultation most of the time.)

“Brain Fog” :
This has been terrible, and trying to work thru it (as I often had to) would trigger the headaches.
Brain fog is a term used to cover a multitude of cognitive problems in CFS and ME.
Put more simply – much of the time I feel as though my brain is totally fucked (sorry for language).

Chest Pain :
More of a tightness, heavy weight, a feeling of compression on the chest.
This came on (or got bad) in November 2012 following a very stressful incident (work-wise). I think I mentioned this in a previous blogpost.
This was a very disabling symptom as it was there so much of the time. Would ease a bit with bed rest, but then hit again with sometimes the slightest exertion.
Why not go to the doctor ?
1) I wasn’t well enough
2) It wasn’t unusual to me. This was the thing (symptom) that finally pushed me over the edge in Nov 1997 – and I resigned from a financial job I had held for over 19 years.
3) I suspected (hoped) it would improve with rest and trying to avoid stress.

– – – – –

This update is cautiously optimistic.

As I seem to be getting better – even if just very slightly. And hopefully starting to get out of this relapse or major crash – or whatever it would be called.

My reason for saying this ?

Because for the last month or so – the chest pains have eased off.
At last.
Thank god . . . . !

Also the headaches have been less severe. And even respond to paracetomal again some days.

Many days it can still be 2 steps forward and 1 step back. And often it may be 1 step forward and 2 back.
But overall – I feel a slight improvement.

Please may it continue so I can start to have a better life again.
Because my life has been very small this year.
The most reduced I can remember.

But I am quite encouraged that the chest pains have eased.
I know I need to go slow, be careful, etc etc. As there are still so many symptoms (problems) to manage and juggle day to day.

But I am optimistic.

And it’s Friday after all . . . . .

The Lonely Landlady

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The Lonely Landlady

She lives in her bedroom

She sleeps in her bedroom

She works from her bedroom, her bed

Her office next door with a backlog mountain growing daily

Her ability to cope diminishing daily

Her ability to switch-off, relax, non-existant

Her ability to cope with any mental stimulation or stress, very poor now

She dreams not of nice things, but of everything slipping away

She is thrilled to get downstairs, just to watch tv twice a week

She is grateful to get out the house once a week, on a good week

She has been left to rot by the NHS, for almost 25 years now

She is sad, upset, about the way some friends have acted

She hates it when her husband flippantly says “people don’t care, they’re not interested and are bored”

She is among nice neighbours who have no idea, think she has become unfriendly

She writes Gratitude Lists to keep her spirits up

She listens to Tibetan Flute Music, to slow her mind down

She dreams of getting away from home, to recuperate for a while

She thinks wistfully of her last holiday 3 years ago, beautiful Lake District

She feels wretched for her husband, he works so hard. And has to do far too much around the house.

She feels angry at being treated so badly by the system, after years of working

She worries that it has all been for nothing, will all be wasted

She desparately wants time off but can’t see how, it seems impossible.
Her husband agrees

She fears a further descent into severe CFS

And fears that she wouldn’t be able to climb back out . . . .


Footnote :

I’m not sure what to call the above.
Its not really a poem, more a ramble.
And its not well thought out, not really in any order at all.
But I felt it was “better out than in” .
For me, that is.

Feel free to ignore . . . .

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