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Bankruptcy in Scotland:  The law is an ass ? 

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I enjoy writing as it can be theraputic. But this is only the 3rd post I have done this year. And it will soon be the end of June. Half the year gone.

This is because I am still horribly limited by my ME and can manage to do very little. Everything takes me ages to recover from. Maybe 90% of the time I’m sleeping, resting or recovering. Some days a bit better.  And some even worse – when in bed 24 hours out of 24.

Resting or recovering isn’t much different from sleep for me. Well, apart from not having nightmares when awake. But I’m usually unable to do anything. Just pretty much non-functional. It feels like attempting anything, no matter how small, triggers off an increase in symptons. Which is miserable.

The Bankruptcy stuff is STILL ongoing. Since 2014. Shock after shock after shock. A constant battering to my health. And my husband’s health. It has been endless.

And is actually getting worse.

In my 2nd last post I had appealed for a solicitor to help. Because I was being sued by a property factor for their factors bills dating back to 2014. These bills were for their regular management charges, plus general repairs and maintenance.  And of course I was very shocked at this.

The property was one of my 14 buy-to-let flats which were handed over to the Trustee In Bankruptcy in 2014. When my health totally crashed.  All correspondence, bills, statements etc have been getting posted onto the Trustee every week since 2014. (By my husband as I have rarely been well enough to get out.)  And the point of this was that the Trustee would deal with everything. Handle everything.

That is what I was told by the bankruptcy Adviser. That was why I was advised that bankruptcy was the best option for me, as I understood it. And why I accepted this. To “give away” the properties and all responsibility for them. I was too unwell to even think about trying to sell them myself. I wouldn’t have wanted to do this anyway at that time. I would have waited until the property values had improved. As to sell then would just have resulted in many shortfalls against the mortgages.

I know I have laboured this point before. In this post – The Bankruptcy Stuff Keeps Getting worse.

And this one – A Long Slow Road. (This is quite a long post about various things. The comments about Bankruptcy are in the 2nd section.)

And this one – Unwanted Visitors.

And this one – My Life So Far – Not What I Expected.

But it is all the more shocking to me the more that happens and the more I find out.

IF I understand correctly what has happened recently :  It seems the original owner of the property (ie. me) is still liable for payment of bills like Factors bills from ONE DAY after their bankruptcy date. Up until the date the flat is either sold by the Trustee or legally taken back (ie. repossessed) by the mortgage lender.  Even if this takes years and years.

In this particular case it has taken years. From 2014 until March 2017 in the case of this flat. Almost 3 years. 3 years for the mortgage lender to repossess a property which was empty. Not tenanted. And no mortgage payments getting paid on it.  And its not just this flat. As I understand it – there are still 2 other flats left.  Therefore it would seem I still legally own these also.

Jesus wept . . . .

Just to talk about this a bit further.

As I understand it – all rents that were paid by tenants are taken by the Trustee. Even if any had been paid to me by the letting agents – the Trustee still gets them. As bank accounts get frozen.

But I am still meant to (legally) pay all these bills. I mean, seriously . . . . ?   And how am I meant to do this ? Or any other ex-landlord in the same situation.

To give a more extreme (but simple) example :

If a bankrupt landlord owned 100 flats. And they were all tenanted. All these rents would be taken by the Trustee In Bankruptcy. And if the Trustee doesn’t sell the flats themselves and the mortgage lender takes 3 years to actually repossess them – the bankrupt ex-landlord is still liable for all these bills. So the Trustee would get 3600 rents (monthly rents for 3 years).  But the landlord would still be legally liable to pay 3600 factors bills (if the factors bill monthly).  Does he/she magic the money to pay these out of thin air ?

IF this is the law – then the law really is an ass.  (I’m in Scotland. I don’t know if it is the same in England.)  I can still hardly believe it. It seems so unreasonable.

I have requested my solicitor to email me the details of where this is wtitten in the bankruptcy legislation. ie. The name of the Act and location (section, paragraph, whatever) of where this be found.  Not that I really know what I’ll do with this once I have it. But I need to be able to actually see it for myself. And it should be made widely known I think.  So that nobody else can be given the advice we were, without being told of these consequences.

Another point is : If any flats have been empty (not tenanted) a while – it gets even worse. As council tax bills build up too after exemption periods have been exhausted. Exemptions usually only last 6 months.

This then implies that utility bills for any empty flats, or empty periods, are my responsibility too. Where the supplier applies a standing charge.

This particular flat had been empty for quite a while before it was given to the Trustee in 2014.  Possibly a year, but maybe longer.  This was because the letting agent could not get any tenants for it. As I think the communal areas had deteriorated and fallen into a poor condition. This was because the previous firm of property Factors (who eventually went bankrupt themselves) failed to deal with any repairs or maintenance.

The irony of this is not lost on me . . .

Now I do realise (or assume) that when most people go Bankrupt they do not have a choice.  Because finances and debts have got to such a position where there is just no way to rescue things.  But my situation was different. As mentioned in previous posts – our assets well exceeded the debts.  But voluntary Bankruptcy was taken purely because the Bankruptcy Adviser clearly said that the Trustee would deal with everything. Take everything off my hands. All mail, demands, forthcoming  threats (once things stopped getting paid),  phone calls, etc,  just had to be passed onto the Trustee.  (And we knew we had to pay a big price for this financially and emotionally. The loss of our home of 15 years and all the equity in it. It was no easy option or get-out.)

At the time of getting the bankruptcy advice nothing was in arrears. Everything was getting paid and there had been no missed payments.  I was even still getting 0% credit card offers thru. My credit score (with Experian) had been 999 (the highest in the Excellent range) for a long time. Although it had dropped down a level by early 2014 – to the Very Good range I think. I suspect because the amount of capital debt was rising, even though nothing was in arrears.  It was getting harder though – but that was more because of my health.  This previous post from Feb 2013 gives an example.

I know they say ignorance of the law is no excuse. And it seems to be no defence either. But seriously – would anyone reasonably expect this to be the case?  Even my administrator at the Trustee said she would dispute the claim because it wasn’t my fault all those factors bills had built up. Plus the fact that I have no income or savings with which to pay, or even make a payment arrangement. (This wasn’t legal advice of course. She told me the Trustee do not have any in-house solicitors that could advise me.)

To add insult to injury – I have no way of knowing if any of the work billed for by these Factors has actually been done. Plus – I don’t even have the bills I am being forced to pay. They were all sent onto the Trustee over the last 3 years. (Everything has been sent onto them. It is what we were told to do.)  Then everything regarding the Factors claim was sent to the solicitor.

Words cannot describe how unjust this whole situation feels.

Now this same firm of Factors have started more court proceedings for “planned maintenance” bills.  The next one is for £4900.00 and has been allocated a claim number for court.  And they have stated they will be further suing for yet another amount for “planned and ongoing maintenance” – this time for a sum below £2000.00 .

In addition, the council for the Motherwell area where this flat is (North Lanarkshire Council) have now sent me a demand for almost £2600.00 for council tax. It was delivered by sherriff officers acting for the council. I  sent it the Trustee right away. As they are still administering my Bankruptcy. They have now sent it back to me and suggested I ask the solicitor about it.

We cannot afford to pay for any more legal help. Husband has been working 7 days a week for a while now to be able to pay for the recent legal fees.  And towards repaying the friend who very kindly gave us a cheque to settle the factors demand. 

Neither of us would be able to obain any loans now as our credit records will be utterly trashed as a consequence of the bankruptcy.  And hubby working 7 days a week is hard – given that I can hardly do anything around the house. And he does almost everything.  Just a week or two ago he had the lovely task of emptying plastic jugs I was having to use in the bedroom – as I was too ill to manage to the bathroom. Too much info I know, but this is how bad it can be. And scrunching up A4 envelopes so I could use them to breathe into (like a paper bag) when I felt panic attacks coming on.

How much more can he be expected to do?

And how much more battering can my health take ? Or husband’s.

Trying to communicate with the solicitor over the last few months has taken a massive amount out of me.  If I was well enough to do this sort of thing I wouldn’t have needed to consider voluntary bankruptcy in the first place.

It was made harder for me as I don’t think they could understand how bad ME actually is, especially when symptoms are severe.  For example : how do you sucessfully communicate how bad your brain fog (aka cognitive dysfunction) is – when this is one of my worst symptoms?

Sometines I wondered if they actually thought I was exagerrating about how limited I am. And how long it takes me to “recover” from the exertion involved in a simple thing like an email or a phone conversation. A simple thing to them but a very exhausting thing for me. Always triggering a big worsening of ME symptoms and being more ill for days on end.  And I found myself trying to explain over and over how badly limited I am. Then giving examples. Not because I was looking for sympathy or anything. But because all this legal and court stuff have time limits set. And I was terrified of what would happen if I couldn’t do things in time. This was so exhausting and I had been hoping for some reassurance that some accommodations could be made if needed.

I don’t know what to do now.

I’m really not well enough to use the internet to look for ideas. Or make longish phone calls. I don’t mean these things are impossible 100% of the time. But I can only manage a very short time doing things without it making me more ill. Then I’m knocked out for days.  And I get nothing done.

I can’t think straight about any of this. The only thing I do know for sure – is that bankruptcy has been a terrible option in my situation.  3 years of Hell for mothing.

Any suggestions would be welcome. (About the forthcoming claims.) Any info that might be helpful would be great, eg. phone numbers, websites, email addresses.

Thanks for reading.

PS.  I haven’t put the links in yet – where I’ve mentioned previous posts.  Will add soon.

Crashing badly now . . . and scared 

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Trying to put this post on my blog in a hurry.

As I can feel myself crashing badly. And I’m fearful I won’t be able to communicate at all with anyone for a while. Not that I do communicate with people very much. Apart from my husband, I don’t think I have seen or spoken to anyone for months. But I do manage to keep in touch with a couple of friends by text message. Even this is hard for me with so many ME symptoms to contend with. Finding it painful to tolerate the brightness of a mobile phone screen is just one difficult symptom.

For the last while – maybe almost 2 months now – I’ve been pushing myself regularly way beyond what I can safely do. Which is frustratingly very little anyway.   I haven’t had any choice in this – see last blog post for details.

A combination of lots of emails and maybe 3 quite long legal phone calls has finished me off.  Every email or phone conversation I only “managed” by somehow summoning up a huge amount of adrenaline (God knows where from).  Because of the importance of the communications. And every time I crashed miserably afterwards.

Every time the crashes have felt worse. More symptoms, worse severity.  But I had to keep pushing against this – because of the situation.

I feel so angry about this whole situation. All of the last 3 years. And now this legal fight – to cap it all.

But I can’t do anymore just now.

I feel as though this last 2 months extra-big  surge of stress, exertion, confusion, worry, etc has caused one crash too many.  Too many extreme type symptoms have started again, or feel worse, eg. can’t tolerate much light at all, or sound, or movement/vibration near me. All the usual symptoms are worse.

Trying to type this thru severe headaches and the agonising brightness of the screen is really really hard. And my brain feels like its plugged into electricity. I feel so horribly wired and over stimulated. Thoughts of the last 3 years of Hell all racing round my head.

I have had to spend a lot of 2017 so far in bed. Not all of it – but far too much of it. It is a rubbish life. Although there are many people with ME who are much worse than me. I know this. And I usually try to focus on being grateful that I’m not even worse. I read about one young girl who wasn’t able to sit up in her bed for 9 years.  9 YEARS . . . .  not weeks or months. And people who have lost the ability to speak. Or swallow food.

And I’m quite frightened now that I could deteriorate even further.

The last 2 months have been too much.  Its as simple as that.

I need to rest completely.  Even if this means bowing out of any communications with the outside world for a while. And avoiding any stimulation.  Or thinking.

Just breathe . . . .

A typical day 

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Yesterday was a typical day. With me exhausted although I managed to do very little.

Morning :  

Woke at 7.15 am.  Had a cereal bar and water for breakfast. (Keep these by the bed.) Then sent a few text messages. Then had a quick look at Twitter (thats usually where I get any news about whats happening in the world). And re-tweeted a few tweets by other people to help raise awareness about ME or CFS. I don’t manage to talk to people on twitter much. It’s usually too exhausting for me. But retweeting some things makes me feel I am doing something. Taking part. 

 By 9 am I was pretty tired and that was all I had done. Oh – and I had brushed my teeth too.  The headache, which had started after about two minutes of using my mobile phone, was now quite bad. (Even thinking and typing a text can be an exhausting activity.) And the exertion of brushing my teeth had made me out of breath and the movement had made the headache even worse. I had to give in and rest. Lying down in bed again. And took painkillers. 

I had to rest in bed until 3pm. Lying down, doing nothing, no stimulation at all, sleeping much of the time.                   6 hours rest/sleep needed after 90 mins of “activity”.                                                      I put activity in commas because in no normal well person’s world would it take 90 mins to send 4 texts and 4 retweets on twitter. And brush teeth. 

Afternoon :  

Got up around 3 pm.                           Managed to freshen up using body wipes (wet wipes). And got dressed. Eat a banana and a babybel cheese for lunch. And drank more water. Lots of water. As just the exertion of freshening up and getting dressed made me out of breath and thirsty. And I was tiring again.                             Tried to fight the urge to rest – as I was hardly up any time. Tidied up the bedroom, opened window and folded the duvet back to air the bed.    Forced to rest as now very tired, even more out of breath, and chest heavy. Plus neck pain. 

Sat on sofa in living room for about an hour or more. Just resting, with neck and head propped up and supported with cushions (to try to ease neck pain). I was so tired again that I wanted to lie down on the sofa. But the feeling of weight on my chest got worse when I tried this.

By 5 pm I wasn’t really feeling much better. But I needed to eat something more. A sickly headache was starting up,  and I was aware that I hadn’t eaten very much today. Which was probably now causing the headache, or making it worse. (I always feel awful if I go too long without food.)   

In the kitchen I just put some cheese and cold ham on a plate. With some cherry tomatoes. And a muffin. Ideally I would have liked to make a sandwich – but I couldn’t stand long enough to do this. So it was a case of just grabbing what I could.  After eating the food I felt a bit better. And was able to make a cup of tea.  This helped ease the headache a bit  – but the other symptons were still there. 

I wanted to do something (anything) to try and distract my attention away from the symptons. This isn’t easy to do. Because doing anything physical is very hard with the chest symptoms. And usually increases them and I end up even more breathless with a worse “weight” on the chest. Or a tight restricted feeling.  Reading wasn’t possible as I knew it would trigger more headaches. And it is hard to read and remember any of it with the level of “brain fog” that I have with ME.  Watching any TV was out of the question too. As i couldn’t tolerate the sound, or any bright colours or movement on the screen.   

So I eventually decided to listen to a recording from a website from an American Life Coach/trainer/motivational person. I had come across this on twitter and had saved the link, as thought it might be helpful.  To be honest, I have probably saved hundreds of interesting looking links to things over the years on twitter. But I haven’t been well enough to read or listen to most of them.                                             With ME – the gap between what I would like to do and what I can actually do is huge. And a big source of frustration. 

Early Evening : 

I listened to the 30 min recording. And it was good – I liked it. I immediately forgot most if it of course (damn brain fog . . .).  But I will listen to it again for sure.  It was about taking full 100% responsibility for everything that has happened in your life. Especially the bad stuff. And losing any kind of “victim” mindset.  It was good and I can definetely see the value in this. As I know I am holding onto a lot of anger, resentment and distress. And I still have so many nightmares about the bankruptcy (which is still ongoing). And about bad experiences with medical people. Plus the attempted PIP claim and terrible experience with Atos (nurse from Hell) just about finished me off. 

But maybe even listening for 30 mins was too much for me. Not only did my headache and neck pain come back with a vengeance, but my head was spinning. And my mind racing with the memories of all the bad things that have happened over all the years I’ve had ME. All the losses. All the medical mistreatment. The possibly ill-advised Bankruptcy (bankruptcy in reverse really). My marriage almost breaking (several times) with the strain of everything.   Then my brain was running through memories from the Property years – some rubbish letting agents, bad tenants (one actual tenant from hell), scum tradesmen, etc etc.  All bad memories. 

My energy just totally crashed.              And I had to take more painkillers and get into bed. Just as my husband got home from work. Luckily he would make the dinner. (He always has to make the dinner, and I’m really grateful for this.) 

I didn’t manage to get up again until 11.30 pm. Still felt rough but was hungry and thirsty. Hubby had eaten his dinner ages ago and was about to get ready for bed. So I warmed my dinner up in the microwave and eat it at midnight. Not ideal . . .  But very grateful that hubby had cooked it. And also grateful (or relieved) that I had been able to get back up and eat.  There have been many nights I couldn’t do this at all. And had to eat in bed, sometimes in a lying down position. Or just too exhausted to eat at all.  Over the last few years. 

But limited and small as this day was – I would rate this as an OK day. Out of a choice of Good, Bad or OK. 

I have had much worse days than this over the last few years. 

And I have had better days too.

And hope to have more better ones. 

But it shows how far removed our lives are from normal levels of ability when we have ME.  In what other illnesses  would a person class their day as OK when all they could manage to do was : 

Send a few texts messages, be on twitter for 10 mins, up and out of bed for only 3 or 4 hours (much of this resting),  eat some food, listen to a 30 min recording, talk to husband for about 20 mins.

Its not much . . .                                           But as I mentioned – I have had many poorer days than this. And I’m very grateful for the better days. 

 

” Bullies ” comment and The Lancet

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There was a bit of a row on Twitter yesterday. And reading it (which I could not help) left me feeling angry and upset.
I will probably exhaust myself writing about it here – but it is too important not to.

It involved an editor from The Lancet making some astonishing comments to ME/CFS sufferers. Then actually blocking some people on twitter – so that they could no longer interact with her and The Lancet. Or be able to read anything she was writing about them, or any other health stuff.

The comment which jumped out at me involved an accusation of bullying. Followed up by a 2nd tweet showing she had no knowledge or understanding about ME/CFS at all.
If I have understood things right, her comments were initially in response to an ME sufferer pointing out inaccuracies in a piece that had been published in The Lancet. And commenting that another publication/magazine/journal had apologised for something – I,m assuming similar inaccuracies.

The 2 actual tweets were :

1st )
” What exactly would we be apologising for?? For having a view? Ridiculous.
You,re bullies ! ”

2nd )
” Chronic Fatigue = polarised field ! We,re entitled to our view as anyone else. Its an editorial !!
Write a letter if you,re that aggrieved ! ”

Gosh.
I mean, where do you start  . . . . ?

I could write so much, but simply don,t have enough energy. So I will just need to make my comments in shortish bullet points.

1) This Lancet editor has less than 1000 followers on twitter – but The Lancet itself has 164,000 twitter followers.

2) People with ME/CFS have a very serious, debilitating condition. In some cases people who have Very Severe ME have to be tube-fed as they are too weak  even to swallow.
Even the most mildly affected often struggle with simple daily activities. That the rest of the world take for granted.

3) We are hardly in a position to be bullies, are we ?
I thought bullying was about having power and control. In this situation – who has this ?
I don,t think it is an ME sufferer or the ME community.

4) Another ME sufferer tweeted :

” Jaw dropping response to chronically ill #MEcfs patients. Many cannot write an email ”

And there were many many other upset, outraged comments too.
Not surprisingly.

5) The ” write a letter . . ” comment really upset me too.

I have a multitude of symptoms to struggle with most days – just like thousands of other sufferers. The “brain fog” symptom has been pretty severe over the last few years in particular. Making writing an email or a letter a very difficult, time consuming and energy-draining task for me a lot of the time. It is difficult physically and also mentally.
I know I have written on this blog over the last few years about how much I was struggling with this. How an email that should take maybe 20 mins would take me 4 hours. And I would pay for it by being wiped out sometimes all the rest of that day. And the next day too sometimes.
etc etc etc . . . .
(A letter can be even harder if you don,t have somebody to post if for you.)
This was the reason I had accumulated such a huge backlog of work, and my business was spiralling out of control.
ie. That I couldn,t even manage to do simple admin tasks most of the time.

And the repercussions of this for me have hit me very hard.
Voluntary Bankruptcy, and the loss of almost everything – now in my 50,s.

So I did feel enraged at a health editor from a powerful health publication making such comments.

Over and out for now.

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.

Am I getting worse ?

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Its now Jan 2013 and not much has changed. In terms of my day to day life and CFS.
I actually wonder if my health has got a bit worse over the last 2 years. But its hard for me to be objective and measure this clearly.
My head is filled up thinking about work (property) issues and problems. And household problems. And money matters – household and business. And practical problems of so many things I need to do, but haven’t been able to :
eg :
get my hair cut (over 12 months now), visit to dentist (maybe over 2 years), go for breast screening, was due 3 years ago. (have had 3 appointments but wasn’t well enough for any of them).
With all this going on, plus my CFS neurological smptoms of “brain fog” and the “racing brain” (to name just two), this is probably why I haven’t got the ability to tell.
But I am getting more severe and longer-lasting symptoms some weeks. And it seems to  take me longer to recover from my “crashes” each time.
People with CFS and ME will know what I mean by crashes. But for the benefit of others – it is more commonly called post exertional fatigue or post exertional exhaustion. And its nothing like the natural tiredness, or exhaustion, people can feel after a long hard day. Or even after doing something out of the ordinary which been exhausting. Like a marathon run. This tiredness/fatigue/exhaustion is entirely natural and a normal healthy person usually just needs adequate rest to recover from it.
But with CFS and ME it is so much worse.
The level of exhaustion, and severity of  other symptoms, can be very bad indeed. And often totally out of all proportion to the amount of time and energy the person had used. On whatever they were doing. And to make it even harder to control – it can fluctuate from day to day, week to week, etc. (Making planning things often a real challenge, if not impossible at times.)
An example from my day to day life :
I find that I’m often exhausted now after having a shower and may need hours to recover. Not every time but too often.
By “exhausted” I mean – I am too weak and out of breath to be able to do much other than rest. My arms are sore and weak with the effort taken holding them up long enough to shampoo my hair. And my chest is pounding and heart racing. I took my pulse after a shower a while ago – it was 141. This is maybe 2 to 2.5  x  the average rate of a fitter person ?
Yet it was a simple, short and non-stressful activity, done slowly under no pressure.
This makes me wonder how high my heart rate goes when I feel under any major stress.
eg. In November 2012 when relations turned sour with a firm of tradesmen I had used for lots of work in my properties. And spent much money with them. One of the 2 partners turned into a total scumbag and actually threatened voilence against the properties. Saying he would “rip the fittings out of all of them”. Or words similar. And this in writing to me by text message. . . Then a 2nd text message to me confirming it was “a promise, not a threat” . Unbelievable.
Just to add here : I had an ongoing account with this firm and faithfully paid them every month as had been agreed. So I wasn’t in default to them in any way. But I had been raising my dissatisfaction with some of their work, and various broken promises with time-scales etc.
And they just turned nasty.
That week I was in bed almost the entire time – and my worst symptom was feeling like an elephant was sitting on my chest. That heavy, weighty feeling.
Just awful.
But I still had to deal with the situation as best I could – from my bed. And not very well admittedly.
Its all over now and these people are out of my life.
But I hate to think that this could have worsened my condition. As I was experiencing so many bad emotions that week – fear, anger, disbelief, frustration, despair. But anger more than anything.
However they say what doesn’t kill you makes you stronger.
I certainly hope so  . . .  !

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.

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