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My Life so far – NOT what I expected

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I save a lot of pics like this if I see them on twitter or somewhere – just because I like them.  Mainly funny, upbeat,  philosophical, inspiring,  motivating etc.
Something a friend said to me in a text message recently reminded me of this picture.
It certainly describes my life.

But I’m not OK with it – yet. That will take a while.

I’m 55 – and now have nothing.

The post from 7 Feb 2015 titled Battered, Bruised and Bankrupt explains.

When I say nothing – I mean nothing financially. And no security.

No money
No income
No savings
No ability to earn any income because of all the ME symptoms severely affecting my life. (Certainly not just now.)
No Benefits – I am not well enough to deal with the process. Nowhere near well enough.
No GP ( or as good as no GP).
I do own 50% of this flat I now live in with my husband – but at the moment this is 50% of nothing (financially). As it has a large mortgage on it and there is no equity in it.
And we now have nothing to pay off the interest-only mortgage with in 8 years time. We did have various mortgage Endowments – but they were taken from us by the Trustee In Bankruptcy and cashed in.

Worked hard since 17

With Commercial Union Assurance (now part of Aviva) for 19 years.
Then Prudential for almost a year.
Then NTL ( now Virgin Media) in telecoms for 4 years

Studied for professional qualifications in Insurance (Life and Pensions) and Financial Services (for Compliance work).
Obtained A.C.I.I ( ie. Associateship Of The Chartered Insurance Institute) in the Life & Pensions branch early 1980s .
Obtained MLIA {Dip) and FPC (Financial Planning Certificate} in early 1990s.
During the early 1980s I also worked in pub jobs for 3 (sometimes 4) nights a week – on top of my full time job. I did this over a period of a few years and think I worked in 5 different pubs.
The reason – to save up for my 1st flat. For the deposit, costs and fees, furniture, etc.
I was keen to do this but not have any debt when I moved in.

All these jobs/careers I had to give up and resign from due to my health. And all the symptoms of what I now know to be ME (or CFS as it was called at my diagnosis).
NB. I left all these jobs with nothing – even after 19 years in Commercial Union.
There was no help or support from my GP at all. And I just wasn’t well enough to be able to push for more help.

Finally got diagnosed with what was called CFS in 2003.
After more than 12 years of going back and forwards to GP – but feeling I was being treated like a time-waster each time. As if I was just being lazy.
Appalling treatment really.

By 2004 I had to accept I just couldn’t risk working for an employer again. Assuming anyone would have me . . .
Although I was feeling a bit better again after some rest time, I still had a lot of symptoms to cope with. I knew I could only work when I was able to. And would often need big rest and recovery periods.
No employer could be expected to cope with this.

So the only option left was to work for myself.

In 2004 I started up the Property stuff seriously.
Buying the 2nd flat to rent out (ironically the one we now live in and are very glad to have !).
By using savings and remortgaging our home I got started.
Then managed to build up to owning 15 flats by 2014.
Mainly by remortgaging them or using additional borrowing to raise funds for the deposit, fees and costs to buy the next flat. When the value of the property had increased enough to allow this.

The point of this was to get to a point where I would have been able to sell off a property every year. Or maybe every 2nd year.
And the profit would give me an annual income.
(It is very hard to make any real monthly income from the rent – there are so many expenses and things to deduct from it.)

Ironically, if I had done nothing at all we would now be much better off financially.

Hindsight again . . . . A totally useless thing.

Remortgaging our home was a calculated risk. But it was the obvious and only option to use. Neither of us have ever had any inheritances or lottery wins !
It had loads of equity in it at 2014.
Partly because of the increase in the property market. But also because we had bought it in 1998 with a very small mortgage. We put down a large deposit of 65% of the purchase price.
This was done partly by saving up very hard for a few years and going without most things. Really scrimping on everything.
And the reason for this – our future security . . . .

Now at July 2015 – Bankrupt.

Husband dragged down with me – as some properties were bought in joint names.
But he has been totally supportive and never blaming me. And I’m so grateful for this.
So, the loss of everything – apart from the flat we are living in.
Oh, and we were allowed to keep our beloved BMW. Because it is so ancient now ! (Think I mentioned this in a previous post.)

As I explained in previous post, the Bankruptcy was voluntary because of my health.
I couldn’t go on.
And this was the only way, as I understood it, to give away all control and responsibility for all the properties. And hand over all dealings with everyone to a Trustee In Bankruptcy. ie. All dealings with banks, letting agents, tenants, insurance companies, etc etc.

It hasn’t worked out quite like that . . . .

But that’s life isn’t it ?
You get told something but the reality turns out to be quite different.

But at some point all this horrible Bankruptcy stuff will come to an end. And I will be able to “relax” and have some peace of mind.
No idea when this will be – impossible to get any clear info in writing.
And I will have the energy (well, more than just now) to hopefully find a decent “ME friendly” GP.
Not really for treatment – not expecting miracles. But just for some symptom control and support.

At the moment I have none of this. Just nothing at all.

But I’m still here.
And there are many people out there with ME or CFS who are much much worse than me.

So I’m grateful that I’m not even worse than I am. And that I do have “mini bursts” of energy. And can do some things. Even if the recovery time after it takes days . . . !

PS.
Apologies for any typing errors. I tried my best to check it before hitting the publish button.
But I really struggle to use my laptop or tablet etc. And am all out of energy now.

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Re-blogged : Hip Surgery and ME: Society Has It Wrong

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I had to reblog this post.
It is from Jeannette Burmeister’s blog which is called
http://www.thoughtsaboutme.com.
And it is written by her husband Ed Burmeister.
It is about one of the worst, most painful issues, encountered by people with ME.

Thoughts About M.E.

I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really resonated with the community.

Therefore, I talked him into allowing me to post it here as well. I am blessed to have such a supportive and loving spouse.

Last Wednesday, I had a complete hip replacement.  It was a short procedure (1-1/2hours). No general anesthesia required.  I was out of bed the day of surgery and home after two days.  On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain.  I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after…

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Voices From The Shadows DVD

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It’s Jan 3rd 2014.

I have just finished watching the dvd of Voices From The Shadows.
Probably a year after many people have seen it – I know.
I had always meant to buy this, but 2013 was a very bad year and I managed to do very few things I wanted to.

A fellow sufferer had her husband deliver this it me to watch after I sent her a Xmas card. And had mentioned how bad I had been over the last year or two.
(I was very touched by her thinking to do this, as she is affected more severely than me.)

I had planned to get my husband to watch this with me, but then decided to watch it on my own first.
And I’m relieved I did as it was upsetting.

I thought I had become slightly hardened by now to all the tragic stories of people with severe CFS and severe ME.   NB. I don’t mean that the way it sounds.
Its not thru lack of interest, or ignorance, or lack of experience.
Totally the opposite.

This last year 2013 has been the worst I have had in a long time with my CFS. If not THE worst.
Talking to fellow sufferers on twitter over the last 2 years, or just reading what they are saying, opened my eyes to a whole world of people suffering on a similar level to myself. In many cases, much worse than myself.
And I have read many peoples’ blogs too.

It has all helped me no end, but some of the stories and experiences have been awful.

So I guess I thought I would watch this dvd and find it very interesting, totally relevant and hugely worthwhile. But I wouldn’t get too emotional about it – because of all the stuff I have learned over the last few years. And gone thru myself.
Plus we all know the treatment of ME and CFS by the medical profession in general has been pretty rubbish – don’t we?  (That’s addressed to fellow sufferers of course.)

But here I am at 2am – compelled to start typing this blogpost.

After I finished watching the film (approx 1 hour long) I just sat with my head in my hands on the sofa for a wee while.

Feeling emotionally drained and sad – but then fired up with anger.
(And anger was one of the reasons I started this Blog in the first place.)

For me, the worst bit in the whole film was listening to the voice of Sophia Mirza.

In  the recording made when the *people came to section her and remove her to a mental institution. Against her, and her mother’s, will.
(*The people being her GP, a social worker and a psychiatrist. And policemen.)

Sophia was the 1st person in the UK to have Chronic Fatigue Syndrome recorded on her death certificate.
I had read about the tragic story of Sophia before and read thru the excellent website set up by her mother Criona, at :  www.sophiaandme.org.uk.

I had already read about the awful mis-treatment of this young woman by all the medical professionals involved. And how she ended up dying at the young age of 32 when her ME deteriorated to such an extent her body could not recover.

On this website is a transcript of a full recording made on the day when she was unbelievably sectioned. On 11 July 2003.
And I had read it all, and it was awful.

But hearing her actual voice in the film was even worse. So painful to listen to.
It made the tragedy of her story all the more real. A tragedy that should have been  preventable.
But instead the medical mis-treatment caused her ME to deteriorate to such an extent that she just couldn’t recover from it.

What a waste of a young life.

The tears came, and lasted some time.
But then I would challenge anyone with this wretched condition not to shed tears, listening to the actual pleas of this young woman :
“I’m an ME patient, not a mental health patient” she keeps saying.  And her heart-breaking pleas not to take her away, how it will make her worse.
And of course, it did make her worse.  It killed her.

Sophia’s story is actually like something out of a horror film.

The film explained something for me I never understood before,  ie. why her mother’s complaint to the General Medical Council (after her death) was not upheld .
The answer was so blindingly obvious that I almost smacked myself across the head :

The people at the GMC dealing with the complaint were psychiatrists . . .

You couldn’t make this up.    How could this have been allowed ?

The explanation about psychiatrists on the GMC ruled on the complaint  =  the anger I am still feeling right now.

But this is just one part of the film and the people featured in it.
There is much more.  All awful stories.

I don’t have enough energy to write any more just now. But my anger was so stirred up I had to write this post.
I think everyone with ME and CFS should buy this film and make at least one other person (a non-sufferer ) watch it.

To raise awareness.

The Secret CFS/ME Files

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The Secret ME/CFS Files
File No : FD/23/4553 from the Medical Research Council (MRC)

This week or weekend I am planning to settle down and read this file. Probably with a cup of tea – although given the contents a large gin & tonic might be better.
To explain – this will be no pleasant read and have no doubt it will make me very angry. But there is no question at all that I am going to read it.
All 158 pages of it.

This is a file from the Medical Research Council (MRC) on CFS/ME. It had been filed away in the UK National Archives in 1997. And wasn’t due to be released until 2071.
The contents seemingly go back as far as 20 years.
NB. The lady who has obviously done a massive amount of work bringing this to the public attention is :

Valerie Eliot Smith ( @SnakeTempleGirl on Twitter )

She is a long-term sufferer of ME/CFS and describes herself in her twitter profile as an “angry bird”.  And how well I understand that anger. It is the Number 1 reason I started this Blog.

Why am I angry ?

1) Because of the poor treatment I have had from GPs since maybe the late 1980s. So far back it is hard to be sure now. Not angry at the fact that I wasn’t cured – but more the way I have been treated all these years. With contempt, bullying, disbelief (obvious but unspoken), no respect, disinterest, irritation, silence, blank looks, etc etc etc.
Left to rot would basically sum it up.
Take anti-depressants and get on with it.

NB. I should add here that 2 of the 3 GPs I have seen over the years I’m sure are nice people & good GPs when it comes to other problems/conditions – ie. not CFS or ME related.  (In fact they have been quite nice with a few other things over the years.)  The contempt and bullying I mention was from the 1st one and goes back a long time now.

2) Secondly because of the way people with CFS or ME are often treated by the general public.
This can include employers, work colleagues, acquaintances, relatives – and unfortunately sometimes even friends and family. We are desperate to talk about it to people important to us – not because we want sympathy or attention. But because we want them to understand how bad this condition/illness can be and how much it limits us at times.  All we want is understanding and hopefully some allowances made for us – so that the friendship can continue even when we are limited.
But sadly, sufferers sometimes experience boredom, impatience, no empathy or understanding at all, intolerance, disbelief and even nastiness.
Plus many marriages have broken down, with partners leaving. I read somewhere it was estimated 50% of marriages break down when one partner has CFS or ME. I wasn’t shocked – only surprised it wasn’t more. The stress and strain can be terrible, intolerable even, on both people. Especially over the long term.
My own marriage almost didn’t survive and came very close to breaking down in January this year. After being together since 1991. Many reasons. But I would say most caused by me having CFS such a long time. Directly and indirectly.
The sheer stress of everything over so many years, without any help (for either of us) almost finished us off. We are still struggling. Maybe not so much with our marriage but with almost everything else in our life !  It has been very hard indeed the last few years. But, after a 9 month spell apart, we are now living together again.

NB.  How does this relate to these medical files you may be wondering ?
Well although there is really no excuse for people treating us poorly –  I am sure the attitude of the medical profession ( ie. the experts) has not helped things one bit.

3) The sheer injustice of it all.
Being made to feel I was lazy or work-shy by the medical profession. And sometimes others. Always indirectly of course. Never stated outright – therefore denying me the opportunity to challenge it and put the record straight.
I worked full-time from 1977 until 1999, then part-time 1999 – 2003. And studied hard to get professional qualifications in Insurance and in Financial Services : A.C.I.I and M.L.I.A (Dip) and FPC (Financial Planning Certificate).
In the early 1980’s I worked in numerous 2nd jobs in pubs 3 or 4 nights a week – on top of my full-time job. This was to save up the deposit to buy my 1st flat (and cover all the costs, furniture, fees, etc). I was in my early 20s at the time and most of my friends were enjoying going out, socialising, etc. But I wanted to do this and just focussed on it. It wasn’t easy and I did it over a period of a few years. Until around 1986.
Then to be treated as lazy, or basically “worthless” by the medical profession – how could I fail to be angry ?
The lack of almost any medical help, or any type of help. No “Care Pathways” or “Management Guidance” offered to me at all. And being told that I wouldn’t get any financial help from the State as I would not qualify with CFS. My GP did not help me at all. In fact I think the only time my previous GP agreed to sign me off work (for 3 or 4 weeks) was when both my Mum and Dad were seriously ill in hospital at the same time. My Dad was in hospital for a month and had a lot of health problems. Then my Mum had a heart attack at the same time – and ended in in the same hospital (Glasgow Royal Infirmary) for 2 weeks.
So I maybe shouldn’t complain too much . . . Allowed time off work for 4 weeks. This was maybe 1987.
In late 2002/03 my GP then did sign me off work, and eventually diagnosed my CFS. My Mum was terminally ill at that time, and I was struggling very much even before that.
But in order to get this (signed off work I mean for a few weeks ) – my husband actually had to come to the Doctors Surgery with me. To help me talk to her.

NB. I want to make 2 important points here :

a) I am not angry because I just wanted to have lots of time off work.  Then give it up forever.  Then live on State Benefits. And that my GP somehow stopped me dong this. But it would have helped me so much if I had been treated seriously and shown some respect by GPs.  Because I am certain that if people are forced into struggling on for a long period of years (as I was) then the illness/condition becomes more ingrained. And so much more difficult to get rid of.

b) With regard to state financial help – I wouldn’t have wanted, asked or chosen to live on benefits.  But I fully understand that many have to do so because they have no choice, and are own their own. But to have received some financial help would have been good. I mean people get child benefit (previously totally un-means tested).  And having children is a choice – having CFS or ME isn’t.

4) Now a Landlady – since 2004.
This is hard too and is eating up most of my life just now. Because my CFS has got worse over the last few years. So makes it harder than it should be.
I “got into Property” in 2004 as was no longer employable. It had to be something where I wasn’t answerable to anyone and could do my own hours.
I took a big risk (financially) to start this up. I didn’t have any money other than some savings. Never had any inheritances, or gifts, or lottery wins.
I just borrowed and kept on borrowing . . . !  Including re-mortgaging the house – with my husband’s agreement of course.
It was designed to be long-term – and will be very long-term now. Keeping it all afloat throughout the last few years (since the credit crunch and recession started in 2008) must be one of the hardest things I have ever done.
Unlike GPs and other medical people I have no guaranteed salary at the end of each month. Sometimes a loss. And I just have to work the hours it takes.

NB.  My point here is not meant to be “Oh woe is me” or “I never knew it would be this hard”  . . . etc etc.  It is simply that I am working very hard – but am still treated dismissively at my GP surgery.   It seems that no matter what you do, or say,  if you have CFS or ME noted on your files – you are deemed not worth bothering with.


But : why do I want to read this file, if it is going to make me even more angry ?

Because I have to.
I have to see the contents in black and white for myself.
I feel it will confirm I have not been over-sensitive all these years. In feeling I have been badly treated by people who are highly paid professionals. Who I had turned to and had relied upon to help me.
And it will prove that I have not been alone.  And have a very justifiable right to be angry.

GPs treatment of CFS is . . .

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One of the main reasons I started up this blog was to get out some pent-up anger and emotions that have been blocked in over all the years. One area has been dealing with GPs and other health professionals.

Note :

I have removed this post now.  For a few reasons :

1) Don’t want to get struck of by my GPs surgery !
Although it would be good to find another more “CFS/ME aware” GP – I don’t have the energy or the time to do this. Not right now anyway.

2) I don’t want to cause any offence to the clinical phsycologist I was referred to for the standard CBT treatment years ago. He was very nice and easy to talk to, and certainly made me feel much better about myself at the time.  To that extent CBT did some good. On the emotional front.
But unfortunately was no practical help at all for CFS. (Which we now know is to be expected – as a phsycology-based treatment will not cure a physical condition/illness.)

3) I certainly don’t want to cause any offence to David Mickel in Elgin – who must be the best GP anybody with CFS or ME could wish to have. Having met him and knowing his sense of humour – I am pretty sure he would not be at all upset at my list of rants.  But as he is doing some GP work again now (as well as the Mickel Therapy) I decided to add this anyway.

4) Now that I have had my mini-rant and got it off my chest – I feel much better for it !

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