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I can’t take much more . . . 

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I need the help of a good solicitor in Glasgow

HAVE REMOVED THE BULK OF THIS BLOG POST.   FOR LEGAL REASONS. 

I only have enough energy just now to copy below an email I sent to my usual solicitor last week. As it gives some background.
But he told me his firm don’t do civil court cases therefore cannot help.

HAVE REMOVED ALL OF THE DETAIL FROM THIS PART TOO.

” I am simply not well enough to phone around. Therefore adding this to my blog. And will advertise/appeal on Twitter.
Maybe not ideal but its all I can think of.

HAVE REMOVED STUFF HERE TOO.

It makes phone calls too hard. I can’t remember stuff, communicate what I need to say, get muddled, etc.
This email is massively hard work and exhausting. But I can take hours over it with breaks. Change mistakes, etc.

And another worry is any time limits for things. This is also why I feel I need proper representation.
Because with ME – when I push myself to use extra energy on something big (like typing this email) – I am then much worse for the next few days. Often completely wiped out with severe headaches and exhaustion.

So I’m concerned that I won’t be able to do things quickly enough, eg. any forms needed.

Sorry this is so long.
Will wait to hear from you.

Hope you are well and business is good.

Best regards

Anne Dean ”

Blog post amended 26/4/2017.

Apologies if it doesn’t make much sense now. My priority was just to delete any specific detail about the legal issue. Even although no actual names were mentioned, I felt it was sensible to do this. 

 

Needing to be heard

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Its been over 3 months since my last blog post.

I have so much I want to write about but haven’t been able to. Because of all the usual ME symptoms. Profound exhaustion and weakness, pain (mainly the headaches, despite new glasses), appalling brain fog (aka cognitive dysfunction or brain dysfunction) and hyper-sensitivity to using anything like a PC, a tablet, or a mobile phone most of the time. Or looking at a TV screen.

And the fact that stuff done on a good day just goes on to cause a crash the next day again. And then I need time to recover from this.
An endless vicious circle . . .

These symptoms have been making my life a misery for a long time now – years I think.

  • I haven’t been outside in the fresh air for 2 months now. Not by choice.

  • I am still having to spend a huge amount of time in bed. Not by choice.

  • I get to see or speak with virtually nobody apart from my husband.
    Not by choice.
    eg. In the last 6 weeks I have been in the company of 2 other people. For maybe 9 hours in total. Spread over two occasions. (This is less than 1% of the time.)
    Even one of these occasions probably wouldn’t have happened unless hubby had been present. As I think the visitors wanted to see him rather than me.
    As he says – “everyone likes me” !
    He is right of course – people do like him. He is always friendly and fun. And has energy. And makes a joke about everything – never serious.
    I must seem dismal by comparison.

    • I can hardly read anything – apart from links to short news articles (usually via twitter).

Reading books is still very hard because of everything involved with the “brain fog” – as well as the physical exhaustion of course.

For instance : I have been trying to read Eat Pray Love by Elizabeth Gilbert for possibly almost a year now. I first bought the kindle version and downloaded it onto my tablet. To read in bed, usually lying down. But I had to give up on this as (1) the tablet was often too heavy for me to hold, and (2) I very often can’t tolerate the brightness from it, even on lowest setting.
So I then bought the book (again) – the paperback version this time. By the time I managed to do this (as using the internet can be torture) I had to start reading it from the beginning again. And I’m still struggling.

I can’t read comfortably with my new £310 varifocal glasses (thanks Specsavers). So I have to read with my glasses off which = headaches. And the brain fog means I have to keep reading and re-reading the same bits. Over and over. And this isn’t a difficult or challenging book. Its an enjoyable easy read – or should be.

  • Using the Internet is torture most of the time – because of my hypersensitivity to bright screens. And pushing on triggers headaches very fast. Then it feels like my whole automatic nervous system goes haywire, heart pounding, feeling wired and hyper, etc.

  • Using emails to keep in touch with friends is also hard and exhausting. Usually its just too much.
    I think the last email I did was in December. To a friend I hadn’t seen since the previous December. I was concerned incase there would be a short-notice visit over the Xmas period. As there would be so little chance I’d be well enough for this. So I tried to explain this in the email, because I did hope to see them.
    With headaches, brain fog and the torture of the bright screen – the email took me a whole evening to do. About 5 hours. It wasn’t massively long. But I needed so many breaks.
    And I don’t think the person has even read it yet. As her laptop was out of order.

  • Watching TV : this I can do in small doses. There was a long period when it was almost totally intolerable for me. But I still struggle with bright colour, movement on the screen, sound changes between channels, or at adverts, etc. I have the final of Strictly Come Dancing recorded from December. I wanted so much to watch this – especially as my long time favourite Anton Du Beke was in the final for his first time. Ok, I know now that he didn’t win. But I do still want to watch it. However, as yet this hasn’t been possible for me.

  • Phone Calls : mostly impossible and/or pointless – as I struggle to remember anything. Important calls are pointless – the more important the call the worse my brain fog seems to become. And people get so annoyed when I have to ask for a letter or email to confirm everything said . . . !

    • Music : even listening to music can be too much. With sound sensitivity. If I’m in bed then my option would be listen to music on my mobile from U-Tube. There is a whole world of choice there. But if I’m too sensitive to using my mobile then even this can cause symptoms to worsen.

NB. Not meaning it to sound like I want to spend all my time reading, listening to music, being on the internet, using the phone or email, or watching telly.
Just saying that if I can’t ‘even’ do these small things it makes for a very dry life.
When I can hardly get out or see people. Or do much at all.

How do you stop yourself sinking mentally and emotionally ?

 

On the medical/health front :

  • I am successfully registered with a new GP surgery now. This worked out because they accepted new patients without the need for a face to face visit with the GP or a nurse. Just forms submitted.
    As yet I haven’t been well enough to actually meet the GP or even manage a phone consultation. A few were booked but I had to cancel them every time as not well enough on the day.
    Some meds I’m still being allowed on repeat prescription. Others have been stopped a long time ago, eg. Vitiman D. As I need a blood test check whether I still have a deficiency or not. (Given that I rarely get outside – I tend to assume I will have.)
    Painkillers – I am no better off yet. Still spending £40 or £50 a month on stuff like Panadol Extra. Paracetomals do nothing.
    A big worry is I have no idea what the GP’s view about ME or CFS is. I will just have to hope for the best. (The surgery was chosen because of the easier procedure to join.)

  • New Glasses :
    I prioritised this (over trying to meet new GP) as I hoped that new glasses might help reduce my headaches. The last eye test and new glasses was over 5 years ago.
    I used Specsavers Healthcall as they do home visits. And paid £310 for new varifocal glasses. My distance px had got quite a lot worse. But my reading px had improved. I was told this wasn‘t unusual as sometimes one can compensate for the other.
    Or I think that’s what I was told.
    While I was very grateful for the home visit – I wouldn’t really recommend them.
    Their procedure was difficult to fit in with if you have ME. They couldn’t arrange an appointment with much notice. Because they cover a big area and don’t know where they will be going day to day – until their computer prints off a list for the next day. So they would phone in the afternoon and say “we want to come out tomorrow morning”. This was very difficult with my ME severely affecting me. A lot of the time my phone is off, or on silent. And the whole process (just 2 visits) took around 2 months to manage. Even the 2nd visit to fit the glasses I really wasn’t well enough for. But I agreed as had said No to quite a few other visits.
    And I now have glasses that I cannot comfortably read with . . .
    (Yes, I have emailed them twice after I realised this. With great difficulty. No reply yet.)

  • Smear Test :
    This was very overdue and I also prioritised this over meeting the new GP.
    Mainly because of having blood since 2011 or longer (that I shouldn’t be having). In fact when I started trying to focus on getting this done – I didn’t really have a GP at all.

My last contact with the previous surgery had been that absolutely atrocious phone call I received from a foreign sounding GP following my request for painkillers.
Then I had spent maybe 8 months trying to join a health centre where an ME charity had mentioned there was a good GP.
The GP himself may well have been good (in his treatment of people with ME or CFS) – but the staff were awful. They acted like they had no knowledge, understanding or tolerance for this condition.
The nurse wasn’t very nice and changed the procedure for joining the health centre once I mentioned CFS (as I called it then). Then after 3 different attempts at explaining my health (and why I couldn’t get back into the surgery again) to different receptionists – I had to give up. The 3rd person was the worst. She would either argue with me – or go silent for long spells. And make sighing noises . . .
That last call lasted 9 minutes – I gave up after that. I felt exhausted and demoralised by the whole experience.

So, to get my smear test done I went to the Sandyford Sexual Health Clinic. This was a good solution for me as a friend had told me they were a walk-in clinic. Meaning I wouldn’t be in the position of booking an appointment then having to cancel on the day if not well enough to get there. I phoned to ask what choice of days I would have – as didn’t expect they would do smear tests every day. But unfortunately the walk-in service had ceased just 2 weeks before. This was a service that had been going for maybe 30 years too.

However I got to speak to a nurse over the phone when I explained my dilemma. She was incredibly nice. And went out of her way to tell me to make an appointment anyway, and not to worry if I had to cancel on the day. As cancellations are almost always taken by someone else.

I ended up getting a smear test, a womb biopsy, blood tests and an internal scan. Because of the issue with blood. Everything was fine. I had absolutely no anxiety about any of these tests. (My only anxiety with medical people is when I have to deal with anyone about my ME.)
I dealt with 3 different doctors – 2 at the actual appointments and one over the phone. They were all lovely. Very thorough and very professional.

The contrast between they way they treated me – and they way I’ve been treated over all the years with my ME – was astounding.
I actually send a letter saying thank you afterwards.

But this whole thing (the smear and other tests) took up perhaps a 5 month period. Because of me having to cancel some appointments and then re-arrange them. Like everything else – it was very exhausting for me. But totally worth-while and reassuring.

 

NB.
When I started writing this post I’m sure I had a different point in mind. Rather than just another summary of how shit all these ME symptoms are. And the medical updates.

But I can’t remember what it was and have gone off on a complete tangent here.

Bloody brain fog . . .


Continued :

Actually, the point is coming back now.

It was the fact I discovered I have 2000 followers on Twitter at the weekend.

Now I know this is peanuts compared to :

Stephen Fry – 12 million followers

Duncan Bannatyne – 774000 followers

To use just 2 examples.

But 2000 is a big number to me.

It was a pleasant and much needed boost to my self esteem. Which has been near rock bottom for a while now to be honest.

Its bad enough living such a limited life with so many symptoms day to day. When things have been really bad for years now – then add in the whole Bankruptcy stuff on top of it. (Still ongoing.)

But maybe even worse than this is the fact I feel almost nobody listens to a word I say – in real life. And there are valid reasons I feel this way :

1) Years of being ignored and dismissed by medical professionals.
Since the late 1980’s.
(There is one recent exception to this but I don’t want to jeopardise it by writing about it !)

2) Not being listened to by the Bankruptcy Adviser or the Trustee In Bankruptcy. Despite me using up huge amounts of energy explaining my health position.
Over and over and over.
Since 2014.
To the further detriment of my health.
What has happened is I have been ignored and not really represented at all in this Bankruptcy process. Despite it being about my Property business. And having chosen Voluntary Bankruptcy in an attempt to stop my ME getting even worse.

Again, I have been traumatised by this experience.
The nightmares I had been having for years (presumably because of the medical profession not listening to me) have been increased and intensified by this.

But maybe even worse emotionally is :

3) Not being heard or listened to by people in my life – just pretty much left alone. (Apart from husband of course.)

In the past and recently I have used up so much energy trying to explain stuff to friends, people, etc. About my ME.
Not to bore them to death with it – but just because I want to be able to see them, stay in touch, etc.
But if they don’t understand a bit about how limited I often am it can make things really difficult. And ends up with frustration and possibly annoyance from others.

Even when I was more well and could socialise more – I would often just get talked over or sort of ignored in some situations.
A lot of situations actually.
I have quite a soft voice which doesn’t help matters.
My husband would often say things like “people don’t want to hear about all that”. And I would get cut off.
To clarify : I have no desire to bore folk to death about my health challenges or limits in a social situation. Nobody would. I’m meaning times when it felt necessary.

One example, out of hundreds of situations over the years :

This could be 10 years ago now :
Hubby and I were 2 hours late for a small drinks get together. With people who are very close to hubby – almost like parents. Two people were visiting from Australia. When we eventually arrived there was a bad atmosphere and clearly everyone was upset with us. One person went as far as to say “you shouldn’t have bothered coming at all”.
Wow . . .
The reason for our lateness was I had needed a lot more time than usual to recover and get my strength back after having a shower earlier in the day.
Now, all these people knew I had ME. But like many folk probably didn’t understand how it can limit me. So I tried to explain myself, how it was my fault but really couldn’t be helped, etc.
But I was just shut down, dismissed, talked over, etc.
And we just had to sort of endure everyone’s annoyance and irritation all evening.
Eventually I just gave up trying to speak – as even hubby wasn’t helping things by talking over me !

This is just one example of a type of situation in which I may try to explain a wee bit about how ME affects me.
Not just to talk about it for the fun of it.

This sort of thing would upset me although I tried hard not to let it. To me this was hurtful and rude. But to him it was ok.
But he was usually right I guess – so many people just don’t want to know or hear about anything difficult.
If I expressed any dismay at this I was told I was too sensitive or over-thinking the situation.

He has said to me so many times over the years :

“ People don’t understand, they’re not interested and they don’t care “ . . . .

(But what if they are meant to be friends?)

I think he keeps saying this partly to try and stop me feeling upset (even though it upsets me more every time). And to keep my expectations of people low perhaps. To be more accepting of poor treatment.
Also, maybe to absolve him of not being able to get friends to understand either. (Maybe of not being able to help me with doctors either. Apart from collecting prescriptions etc.)

He says he explains to people “until he’s blue in the face”. But they’re still not interested or don’t understand.
And its just the way it is.

I personally tend to feel “it’s just the way it is” if you have ME or CFS.
Not so much with other serious illnesses?

Needless to say all this hasn’t helped me.
And I’ve used up so much energy trying to understand it. Because I feel I wouldn’t behave that way if situations were reversed. I mean, it doesn’t take much to give out some kind words – does it ?
Or maybe it does.

This has turned into a very long post. Much much longer than planned.
It will take me days to recover from typing this.

But the 2000 twitter followers has inspired me today.
And given me a well needed emotional boost.
Made me realise that some people do want to hear what I say.
And are interested.
And do care.

And it couldn’t have come at a better time. Because I think I was starting to give up – mentally and emotionally.

We all need to feel heard after all.

 

 

 

 

 

 

 

 

 

 

 

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 . . .

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.

Feeling Sorry For Myself Today !

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Ok I confess I was feeling a bit sorry for myself today. But its allowed at times isn’t it ?

Reasons :

1) Now Friday night and I haven’t been outside the house since last Sunday. (Actually that is just 5 days which is better than some weeks. But still not great.)

2) I am managing to work (for myself) but doing it poorly. Backlog of work just gets bigger and bigger !

3) My life for such a long time now has been :
Work – too much for me – unwell – rest – recover
– then start all over again.

4) I just cannot get a proper break to allow myself to get better – or work towards it. If I stop for 1 or 2 days (when CFS forces me to) the work backlog and problems get worse. And makes it even harder when I restart a day or two later. I don’t want to keep going on about this as I know I’ve mentioned it before – but it feels unresolvable just now.

5) Have so little energy or time left over to do anything nice or fun – apart from work, work, work.
Not the life I would have chosen.

5) I was guilty of dwelling today on how many days of my life have been “lost” because of this bloody CFS.
By lost – I don’t mean days I haven’t got out the house. These are very common because I work from home, then have no energy left. I mean the days (like today) when most of it has been spent being unable to do almost anything (even work). And have been in and out of bed most of the time. (Still in my PJs now.)

6) Often feel the outside world has no idea what my life is like.
For instance neighbours that I haven’t managed to chat with properly for ages probably think I’m a bit unsociable. Some friends I’m sure have taken offence that I haven’t been in contact for ages. Etc etc
And my husband tends to play it down if people ask. He will say things like “she gets a bit tired” or “she tries her best”. Neither of course give any inkling of the reality.
NB. This is a difficult area for me and always has been.
I don’t know if I can yet explain it properly. You see its not that I am looking for attention or sympathy. But I often feel that hardly anyone knows how hard I am trying – and how hard it is day to day. And I am so sensitive at anyone thinking I’m lazy or not trying.

7) Sometimes I feel scared I could slip into a “severe CFS” state and won’t be able to pull myself back. If things in my life don’t improve and the day to day stress lifts a bit. This can’t happen on its own I know – and I am trying so hard and so many things. But these take up even more energy.

8) I keep saying “I will get there” and “I will keep going” . But some days I don‘t believe myself.

9) I was also dwelling (too much) on the way so many people treat you if you have CFS or ME. Not everyone by any means – but so many people.
Hubby once said to me “Anne, people are bored, don’t understand and are not interested”.
A young girl (young teens) with ME put it very simply in an article I read recently. She said “people have not been very nice to me since I got ME”.
Both of these sum it up at times . . . .

CBT & GET used in US too

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CBT & GET

In my Reasons For Blog post I mentioned the treatment (or mistreatment) of people with CFS and ME has become a national and world-wide scandal. And it feels that almost every week something else happens to emphasise this.

2 things this week :

1) The #MEinsults timeline that took off on Twitter.

2) The CFS Advisory Committee meeting in the USA

I will just cover (2) in this post.

I didn’t know much about this until I saw a message on twitter. To explain :

The CFSAC are the Chronic Fatigue Syndrome Advisory Committee in the US. They provide advice and recommendations to HHS.gov (the Dept of Health and Human Services) on issues relating to CFS and ME.
They met a few days ago to listen to presentations and submissions from people involved with CFS & ME – including sufferers themselves (or their representatives). One of the recommendations made from a mother of a severely affected sufferer was that use of The Toolkit should be stopped with immediate effect.
I didn’t know what this was. Now I read it I see it is the recommended treatment and uses GET (graded exercise therapy) and CBT (cognitive behavioural therapy).
Just like the UK.
Unbelievably the AC have now decided to continue using the Toolkit despite the impassioned plea against it. Very depressing. There are millions of sufferers in the US and this means no new hope for them.

GET has been described as a type of torture for people who are very ill. For others it ranges from being no use at all to making their condition much worse. And even pushing them from a mild or moderate state (both still very bad) – into the much worse severe or very severe level. There seem to be very few people helped by it, if any. Yet it is still one of the two primary treatments in the UK and USA.
It is scandalous.

CBT is a psychological-based talking treatment – except that it does nothing to treat the condition and therefore has no chance of curing it. Or even improving it. But this is so obvious when it is a psychological treatment being used for a physical illness. And it is still the other of the two main treatments today.

The fact that the CFS Advisory Committee have ignored advice made to them just seems plain stupid. And will just cause further despair for so many.

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