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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 . . .

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