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Fighting a legal battle with very few resources

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Pie chart explained at the end.


It feels like most of this year has been taken up trying to deal with 2 very big problems that have occurred as a consequence of my Bankruptcy. Which is dealing with legal and financial “debt” actions for bills and charges relating to one of the flats I used to rent out. In Motherwell.

Both the council for the area and the factors that manage the property want me to pay for things that have arisen or been charged after I went bankrupt in Sep 2014. This is why I referred to “debt” in inverted commas – as it is debts I haven’t run up myself. And no reasonable person would expect to be liable for these – as the properties had all been handed over to a Trustee In Bankruptcy in 2014.

My Trustee In Bankruptcy (say) they have repeatedly explained my situation to these 2 organisations (particularly the factors) over the last few years – ie, I am bankrupt, went bankrupt because of health, gave all assets away on becoming Bankrupt, have no income or savings now. And can hardly manage to deal with anything because of my health. Which is WHY I opted for Bankruptcy.

Sorry, I know this is the 1000th time I‘ve mentioned this . . . . !

I have also made (been forced to make) some efforts at explaining all this myself to these organisations – usually in long emails. At great cost to my health every time, as even small exertions usually make me more ill. And can cause me to crash/relapse even further for days, weeks, etc.

Trying to think and type out an email will usually take me hours and is a very big exertion with my level of health and ability (or disability).

Again, this is why I went Bankrupt.

But these 2 particular organisations don’t care a jot about this. They seem determined to push on for their pound of flesh.

Some of this stuff I’ve probably written about in earlier posts – sorry about this. And for maybe repeating stuff.

But I desperately need to try and pour some of this out – as it is all keeping me very ill indeed. It feels like it has consumed most of this year. And it is consuming me. My physical health and my mental and emotional health too. Nightmares all the time, increasing this year – with all this worry.

Oh, and the Bankruptcy itself is still ongoing.

Still being administered.

Still dragging on.

Some other flats still to be sold.

So for me, being “discharged” from Bankruptcy in Sep 2015 has meant absolutely nothing. I have no idea what benefits there are from saying a person is discharged. Not that I expected any benefits as such – I just mean what is that actual point of the statement saying you are “discharged” when you were a landlord with various properties ? Because they don’t get disposed of overnight. And it is also pretty unlikely they will be disposed of within 12 months either. (By “disposed of”, I mean sold or repossessed.)

Given that one mortgage lender has taken almost 3 years to repossess an empty flat. A flat that was not tenanted, was unoccupied, ie. vacant – in Sep 2014. And well before that too I believe.

Yes, you read that correctly – 3 years . . . .

This of course, is the flat that has produced the bills I am now having to “fight” these legal and financial battles for.

I put “fight” in commas too, because I have so little ability to fight this.

As well as all the pages of physical symptoms I have with Severe ME, the awful cognitive dysfunction (AKA brain fog) prevents me being able to express myself or remember things when I most need to. Well, it causes problems for me all the time of course. Its very frustrating not to be able to remember stuff I have just read in a book, or having to re-read an email 5 times, or cannot digest something just heard on TV perhaps. It is miserable actually – but not essential in the way it will be in a court case.

The legal battle the firm of property factors are waging against me – is now in the 2nd part.

This firm (I will call them Apollo Property – not their real name) are suing me in 3 stages for factors bills, charges and “estimated” bills for communal maintenance/repairs. The total I think, adds up to somewhere between £9000 and £10000.

I think the reason they are doing it in 3 parts is so it comes under what is called the Simple Procedure in Scotland. It used to be called something like Small Claims. Either way, it is dealt with by the Sherriff Court. And I think the legal charges for the person bringing the action are cheaper than a normal court case. And the top limit for these types of cases I’m told are £5000.

So I am assuming that is why Apollo are doing it in this way.

It makes no difference to me really – as I have no funds with which to pay any of this. And would never have expected to be liable to pay these things. No reasonable person would surely ?

As I mentioned in this post, IF the flat had still been tenanted – the tenant’s rents would have been taken over by the Trustee. But I would still be liable to pay bills like these factors bills – from fresh air .

No reasonable person would expect this to be the position.

And I still don’t know for sure if this actually IS the legal position.

The previous solicitor I had requested to send or email me the specific legislation relating to this, ie. The Act and section, paragraph etc, where this is stated and detailed. So I could read it myself – as it seems so unbelievable.

He hasn’t replied.

But then he has been paid. (You have to pay the legal fees in advance and ongoing for this type of legal assistance. You do not get a bill at the end.)

For this 2 nd Stage – Apollo are claiming approx £5000.

For “estimated” bills for communal repairs and maintenance.

I don’t understand how it can be estimated – you would think they must know what they have paid out exactly ?

And is legal detail not meant to be accurate and specific ? I thought that the whole essence of legal stuff was the preciseness of the detail ?

So I am baffled by this.

Ironically, the whole communal area where this flat in Motherwell is located had, as I understood, been allowed to go downhill. And this was probably a result of the previous factors failing to carry out any maintenance or repairs over a period of a few years. (They eventually went into Administration and the current factors Apollo took over.) And of course, this would be why the letting agent I used said they just couldn’t get any decent tenants for the flat. And it had sat empty for quite some time before 2014.

No landlord would just choose to have a property sitting empty. Just saying . . .

At this particular scheme where my flat was – there are 3 small blocks of flats. Each with 11 flats in them.

They would all have needed similar work to mine I am pretty sure. So anything I am being charged for can be multiplied by 11 for definite. And then by 3, as 3 blocks.

Very recently it also came to light these factors Apollo are also charging the mortgage lender a sum of £16280 which they want paid to them from the sale of the flat.

(The lender finally repossessed it in March this year, and it was sold in July. )

The only detail Apollo seem to have given the bank’s solicitors is vague descriptions like “essential maintenance” and “charges”.

So that means the total of these repairs for my flat = £5000 + £16280

= £21280

And for the full block (as communal works)

X 11 flats = £234,080

And for the scheme of 3 blocks :

An absolutely whopping £702,240 . . . . !!

These figures seem astronomical.

I didn’t mean to type so much detail and make this into such a long post. But my head is spinning with all of this . . . .

And how to fight it with so little energy.

The pie chart in the picture at the top is a screen shot I took from an app called ME/CFS App. I try to record my daily energy use on it – in the hope of it helping me in the future. Or maybe as a visual aid perhaps to show a GP of how my life is.

I’ve been doing this off and on for a few years.

The dark blue is the amount of time I am either sleeping – or completely disabled.

Possibly resting or recovering from doing stuff, but certainly unable to “do” anything at all. Not even listen to soft music, certainly not read.

Just totally non-functional.

And this is at least 80% of my life.

Probably more actually – as you fill in the areas of “activity” in 30 min boxes. Nearly everything is a high or medium energy activity for me. A low energy activity may be listening to meditation music lying down. Or maybe eating food.

A simple text message might take me 20 mins to type out – but I would probably fill a 30 mins box for this on the App. So I tend to overstate my time being active.

I imagine my actual level of functioning is around 10 % .

Which is a pretty shit life – lets be honest.

10% is the figure the App keeps telling me is my baseline. I don’t even know what “baseline” means, as haven’t had enough spare energy to read all the instructions in 2 or 3 years.

So anyway – I’m trying to fight this legal battle with Apollo Factors while being functional only 10% of the time.

Not to mention the firm of Debt Collectors now employed by the Council for Motherwell as well.

I don’t feel very hopeful.

But its good to vent . . . .

And if the sheer effort of typing all this gets some of this horror out of my head, and reduces the number of nights a week I have exhausting nightmares – then it has been worthwhile for me.

Sorry its such a long read.

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 . . . .

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 MUCH 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.

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 maybe now partly 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 up 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. A lot of bad memories. Or at least I was only recalling all the bad ones at this point.

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.

The Bankruptcy stuff just keeps getting worse . . .

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My brain is exhausted and burned out.
Totally fried.

The never ending Bankruptcy stuff is still going on. No end in sight – 2 years now.
In fact its worse than that. 

I have a letter from the Trustee In Bankruptcy dated a month ago. It states that I may be made bankrupt AGAIN. Or sequestrated – to use the correct Scottish term.
It’s not definite, but still shocking to read.

The whole reason for the Bankruptcy (which was voluntary) was because my health was so poor at the start of 2014.
My ME was severe and I was too ill to carry on. I couldn’t do anything more.
I know I keep repeating this.
Sorry.

Because my health has been so bad,  I haven’t been able to communicate effectively with the Trustee In Bankruptcy. Any time I have tried it goes wrong.
The “brain fog” that comes with ME has been too severe and has ruined any communication attempts.

From Day One I had begged for everything in writing. Because of the brain fog.
But it doesn’t happen.
(Its often very hard for me to read stuff too, and digest the information. But at least if I have a letter or email I can read it over and over. 10 times if needed. Even then, I may still not understand it because of my ME. But there would be a bit more chance of it.)

Many times over the last 2 years I’ve been asked to do things I couldn’t do. 
Or provide information I couldn’t provide.
Or to read long documents and sign – which I couldn’t read.
All because I’ve been too unwell.

The WHOLE POINT of the voluntary Bankruptcy was to hand everything over to the Trustee.
So that they would deal with EVERYTHING.
Sign EVERYTHING.
Take EVERYTHING to do with the 15 properties away from me.

I know I have mentioned this before too.
Sorry.

Then I’ve made myself even more ill with trying to explain this to them. That I’m not able to deal with anything.
Over and over.

And to the Bankruptcy Adviser.

And to my husband.
Because they will phone him at work (while he is dealing with gas and the public) and he just agrees to anything. Says “that will be fine” – as he wants to be helpful.
Then I get put under pressure to do or provide what was asked for.
And I’m usually not able to do it.
Or not even sure what I’m being asked to do.
Or why.
As usually nothing in writing. No guidance. No explanation.

The stress of this has been abysmal.
Utterly abysmal.
It has almost finished our marriage.

For most of the last 10 weeks we haven’t been able to live under the same roof.
No choice any longer for me.
We haven’t split up – we just can’t be in the same place while this is going on.
NB. This is no easy choice.
Given that I can hardly look after myself. With food etc. So I’m eating quite poorly nuch of the time. And I’m in bed so much.
And it is very lonely. As I may speak to not a single person all week until hubby visits at the weekend.

But the stress has been too much for too long.
I felt I was getting pushed to the point where I was at risk of having a stroke or a heart attack. Or a total psychiatric breakdown.

Many times in this blog I have talked about the severe headaches and the disabling chest pains. Plus all the nightmares.
But in real life nobody takes anything I say seriously.

So many people with ME or CFS have an endless battle with medical professionals to be taken seriously.
I have had that too.
But I also seem to be in a battle with the Trustee In Bankruptcy. And the Bankruptcy Adviser (although I’ve given up on that now.)
And even with my own husband at times.
Just to be taken seriously in what I’m saying. Begging them all to hear me.

I’m so traumatised and angered by the whole Bankruptcy thing that me and my husband can’t discuss it at all now. I go into a complete meltdown every single time.
Then my ME is even worse afterwards.

Plus I’m fearful for my husband’s health too. He has high blood pressure now, caused by all of this I’m sure. And needs various medications for it.
All the rows and shocks are very bad for him too I’m sure.

I need to be able to do a letter of response to the Trustee In Bankruptcy. Because there seem to have been some misunderstandings.
They seem to think I have refused to do some things. Thereby “not co-operating” with them. This can be very serious – that much I do know.
It’s not true of course.
And I have to be able to tell them this.
But I can’t.

Because my brain will not work.

A simple letter, and yet I cannot manage this.
I will keep trying of course. But God knows how long this will take me.

This situation really is not fair.

To say I could be made Bankrupt again – because I haven’t been well enough to do things. Or do them quickly enough.
And the whole Bankruptcy was because I could hardly do anything any longer.

If I was able to make phone calls, read letters and documents, and reply clearly and in a timely manner – I would not have needed voluntary Bankruptcy in the first place.

This has been the worst experience of my life.
Because it has all been so out of control to me. Filled with shocks.

I feel like I’m being hammered all the time.
Like being made to walk on broken legs. Over and over.
But its not my legs.
It’s my brain and automatic nervous system that are getting more damaged every time.

These headaches are driving me mad

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Today Sunday – I don’t know whether to cry because of these headaches.  Or scream with frustration.
I haven‘t been outside in the fresh air for more than 3 weeks now. Not even for 5 minutes, or even one minute.
Today is a lovely bright sunny afternoon. I can see lots of golden autumn leaves lying on the street below. A warm coating. And trees with different shades of green.

It’s as if nature is saying to me – Anne, please come outside and breathe me in.

And today my physical energy didn’t seem too bad. I was up,  washed,  dressed and have eaten.  Just a banana and toast and tea. And water.

And I was determined to get out.
I so badly wanted to get out.

But these headaches . . .

I’ve been complaining of them for a very long time I know.
But I haven’t successfully managed to get any medical help. In fact some of my attempts to seek help have just resulted in them being made worse. And my other symptoms escalating. (Have written about this before of course.)

The thing that should eventually help lessen the headaches a bit – is to just lie down. On the bed, or in bed.
And may have to put on eye patches. Or just pull down the blinds.
And have no stimulation at all.

Doing this (lying down) tends to ease various symptoms a bit – not just the headaches. eg, neck pain, being out of breath,  chest tightness, etc.
To mention just a few.

But I spend so much time lying down.
So much of my life.

As its never just 10 mins, or 30 mins that’s needed. More like a few hours. Sometimes three, sometimes six.
Sometimes a whole day.

Last night I had headaches that lasted for 5 hours – after taking painkillers.
But I was able to stay up during all of this time. Even though I couldn’t actually do very much.
Well – I watched Day Of The Jackal. The whole film. One of my favourite films.
And I was quite pleased with that.

But this is worse today.

And I just needed to have a moan.

Today I had the physical energy to be able to go down the stairs and get out.
But simply any movement at all is making the headaches worse. And this has stopped me.   And changing from looking at a close-up item to something further away makes it worse too. (This is a very recent change or difficulty.)
Yes, I do probably need new glasses now too. 
That’s another challenge to think about . . .

A friend told me that Specsavers at Morrisons (the supermarkets) actually do home eye tests.
So I have emailed them to ask if I can have one.

Will see how that goes.

Difficulties keeping in touch and feeling isolated

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I’m feeling a bit down this week at how difficult things are.

My main way of keeping in contact with people has usually been with text message. This is often a struggle too, but at least it was an option on days when I was able to do it.

But now I feel this has been taken away from me.

I just can’t bear to switch my mobile on and see missed calls, text alerts about the missed calls, and voicemails. From people (eg. mortgage lenders) about the bankruptcy stuff. They usually refuse to acknowledge I am Bankrupt. 
Because all this stuff has been going on such a long time – my automatic stress reaction is quite severe now. I talked about this in a previous post.
The last time I put my mobile on it showed I had accumulated 20 voicemail messages. Over a few days. And I ended up having to listen to them – I couldn’t stop myself. And of course I ended up totally debilitated afterwards by headaches.

And another whole day was wiped out because of it.

Another big problem is my hyper-sensitivity to things like my laptop or tablet – this often makes it torture to use email. I can manage it some of the time, just not very often. And even that’s assuming my brain fog will allow me to think out an email.

Phone calls are often too difficult – for lots of reasons.
So many reasons.
Other ME sufferers will know exactly what I mean, especially if they have had severe symptoms.  I don’t have enough energy to explain it here just now. I’m sure I’ve mentioned this before – somewhere. If I can find it later I will add a link.

So the only thing left is sending letters or cards.
Which is a nice thing to do – really nice actually. And lovely to receive.
But it takes a lot of energy too.  And not always ideal. Eg. I may just want to text hubby to buy me some more painkillers on his way home.
Plus, when my supply of cards runs out – I can’t just easily order more and have them delivered.
Especially if I feel I cannot open the bloody door . . .

I’m so frustrated at how much these neurological type symptoms (headaches, brain fog, hyper-sensitivity, heightened stress response, etc) are severely limiting my life day to day. On top of everything else.
And even more frustrated that the Trustee In Bankruptcy cannot seem to do anything about many of the unwanted phone calls. Or visits.

I thought about getting another (very basic) phone of course. Maybe just for texts.
But with my levels of exhaustion, brain fog, headaches, etc etc – this is beyond me at the moment. And the delivery wouldn’t work anyway.

Not being able to open my door to anyone (on a good day when I’m up and about) is rubbish.
At least Asda or Tesco deliveries can be booked for an evening delivery when it should be “safe” to answer the door. Thank God for that !
But most other things can’t.

But it’s just life I guess.
We have to take the bad as well as the good. That may sound philosophical and accepting. But I don’t actually feel philosophical or accepting in any way at all right now.

The thing is – we all need connection and contact with other people. 

The physical ME symptoms I struggle with already drastically reduce my contact with friends, and the outside world.
And for this to be made even more difficult now, thru no fault of my own, is hard to deal with some weeks.

Hence why I’m writing this post – to get it out.

Final note :

I have an Eckhart Tolle app on my mobile. Which has lots of calming and accepting and philosophical statements on it.
A good idea I thought.
A positive action.
Trying to help myself.
Will help me stay strong.
Try to focus on bring grateful that things aren’t even worse.
But have you spotted the obvious problem ?

I cannot switch on my fucking mobile because of all the shit going on . . . .

Apologies for the F word.

What the world doesn’t see . . .

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This photo struck me as being a good visual descriptor of so many people’s lives when they have ME/CFS.

It certainly is for mine.

So much of our lives are not seen by the rest of the world.  Maybe not by anyone at all, unless we live with a partner or family. So much is hidden and out of sight from friends, relatives, acquaintances.  Not intentionally,  but just the way it is.
The times we do manage to get out and see a friend, or go out somewhere with our partner, can be few and far between.
These are occasions where we have managed to reach the “tips of our icebergs”.

What the world doesn’t see is the struggle the rest of the time. Our lives behind the scenes. Or the bulk of our iceberg that is usually beneath water.

Some examples from my day to day life :

Being so exhausted after a shower or bath that I was unable to go out.
Or do anything.

Having to eat my dinner in bed. Sometimes in a lying down position if unable to sit up. (Not ideal for digestion I wouldn’t think. )

Usually needing a seat with a high back to support my shoulders, neck and back of my head.
Without this I often wouldn’t manage to remain sitting upright for very long. As neck pain would set in. It often feels like my head is too heavy for my neck to support.
Maybe I have a very big brain . . .

Having to buy clothes that will not need ironing.

Actually buying clothes is only done rarely because of the massive difficulty with it.
(This would need another blog post to explain to non-sufferers.)

Same with going to the hairdressers.
I managed recently to get my hair cut and coloured.
This was the first time in over 3 years.

Washing clothes/laundry – but the stuff lying in the washing machine for 3 days until I have enough strength and energy to take it out.

The struggle just to fill in a simple form, and the mental exhaustion afterwards.
eg.
Filling in a Dvla form for a new driving licence recently took me ages. I had mislaid my licence ages ago. But have now moved house also. From the guidance notes I couldn’t decide if a fee was required or not.
Should have been simple but this took over 2 hours to do.
Because of brain fog and headaches.
(and No – I couldn’t phone to ask. See next point.)

Phone calls are almost impossible most of the time.
Unless there is no queue, no more than 2 options to select from, and just very quiet soft music while holding on.
Even on “good energy” days, the brain fog and headaches make this simple task incredibly difficult.

The internet and using my laptop or tablet are torture a lot of the time. (And my mobile.)
Because of hyper-sensitivity to them. Headaches get triggered almost immediately. Brain fog gets worse. And some days it feels like my whole nervous system goes into overdrive.

Doing a simple Asda shopping online yesterday was agony.
Should have been simple. I had made the list the night before. But it took ages.
And triggered off so many symptoms that I was in bed the rest of the day recovering.

Keeping in touch with people is hard when I often can’t manage to type an email, make a phone call, or write a letter or card.
Or I manage to do it – but pay for it with nasty after-effects (exhaustion, headaches, even worse brain fog, etc).
Even text messages can be hard to do as I can’t tolerate using my mobile at times.

Reading a book.
Another simple task most people take for granted.
But I’m very limited in being able to do this. For lots of reasons.
Brain fog – this causes so many problems. Have to keep re-reading stuff as memory is awful. Or I just can’t take in what I’m reading.
Lack of strength in arms – makes actually holding a book too hard some days.
Headaches – often as soon as I try to concentrate.
Hyper-sensitivity to reading a Kindle download on my tablet.
A neighbour loaned me a book when I first moved here.
It took me 11 months to read it . . .

This list could go on and on and on.
But that would be very boring. And you get the picture.

But I guess the 2 hardest things about day to day life for me are :

1) Having to choose between small things because you can’t do both.
eg. Put grocery shopping away OR have a shower.
eg. Make a phone call to pay a bill OR send a text message to a friend.

and

2) The length of time it takes to recover from doing things.
To be stuck in bed all day recovering from just doing an online grocery shopping is pretty grim.

But this stuff (struggle) varies from day to day and week to week. It doesn’t move in a straight line. Up or down.
And while this does make it almost impossible to monitor and control – it still gives me hope that things will improve in time.

I mean, if something varies then it can surely improve in time ?
And more of my iceberg will move up above water . . . .

Headaches and finding a new GP

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Friday morning.

The frustration of this condition knows no bounds, and I guess I just need to write about it today.

Last Sunday I got out with my husband during the day.
Our car is fixed now and it was so good to get out. I think it was the first time I have been out during the day (ie, in daylight) for maybe 8 weeks.  I suspected I’d be paying for it a bit the next day – especially after climbing all the stairs to get back into our top-floor flat once home.
But that would have been ok. Well not ok exactly, but I would have accepted it without feeling too stressed about it.

I’m writing this on Friday morning and have been pretty much bed bound for the last 4 days. Not so much with exhaustion and weakness (although that too). But with crippling headaches (again).
So frustrating after managing a few hours out on Sunday. That horrible reality of 1 step forward then 3 steps back.

It all got triggered by an argument on Monday evening with husband.
Won’t go into details, but it was an issue that’s been argued over many times.  For me, very upsetting. And it always feels unresolved.
Hey ho . . . but that’s married life isn’t it ?
But it made me think about how emotional exertion (from a bad event) can sometimes have an even worse  impact on this condition than doing too much physically. At times.
If that makes sense ?
Well it made  sense to me.
Being in bed for 4 days completely disabled by headaches and exhaustion is bad.

Oh god, these headaches are vicious.

Been using the usual stuff like Panadol Extra together with Ibuprofen – didn’t work. Eventually gave in and resorted to taking Solpadeine Max the last two days – which I really don’t like taking because of the addictive affect of the codeine in it. And you are only allowed to use it for a maximum of 3 days anyway. Also tried using cool gel migraine patches on my forehead.  Some things would take ages to work, or not do anything at all.

Lying in bed with so much pain was driving me mad, but I didn’t have the strength to get up and move around. Or do anything to distract myself from the pain.
All I could do most of the time was try to “go with the pain” and breathe. As slowly and deeply as I could. Over and over.
Most of the time this didn’t work.  And I have to confess I wasn’t thinking calm or relaxed thoughts . . .

I was dwelling on stuff like :

This is the UK with a proper health-service. Not some backwater country with no health service.

It’s ridiculous that I can’t get any help with some decent pain medication.
Its really not much to ask for.

I’ve been mentioning these headaches to GP for years and years.

And at least twice to docs at the Homeopathic Hospital.

But nobody listens to a word I say.

And the last GP who phoned me from the surgery I have been with for 28 years was awful and actually made things even worse.
(See last post. The 5th section – it was quite a long post.)

And it is so bloody hard to change docs. To physically do it I mean. With this condition.

This is a situation I’m really struggling with.  And have done for years.

So far, I have managed to get a registration form from another surgery. But my husband had to go in to collect for me. As they don’t post or email them out  regardless of your situation. The receptionist I spoke to didn’t seem to understand much about the limitations of ME/Cfs. And it will be impossible for me to actually speak to the GP until I am registered as a patient.
(I don’t mean I wanted to speak to him as in a proper appointment, I wouldn’t expect that. But just to speak for a few minutes to kind of see what his manner towards people with ME is like.)

The process, as I understand it, is :

1) You have an appointment/examination with the nurse and fill in the form (I’ll need to complete it in advance).
2) Then (IF they agree to accept you as a new patient) your medical records get transferred.
I was informed this can take 2 months. I have no idea why that long.
NB.  You might not be accepted if it is felt you have “too much” wrong with you. (I heard this unofficially, not from the GP receptionist I have to say.)
3) Once this has all happened you can actually speak to the GP – if he hasn’t retired by that time . . .
and then the crucial one
4) You you have to hope (and pray) that he has some knowledge of ME. And even more importantly – a decent attitude towards it.

So its a kind of catch 22.
You have to go thru this process first, before you find out if it was worth all the effort of doing it (ie, to get a decent GP).
You may be rejected anyway.
You may complete the process then find out the GP and the surgery are even worse than the old one.

The chances of getting a GP who is more “ME/CFS friendly” and informed is maybe 50 – 50. Even that may be optimistic.

After just one phone conversation with the receptionist, I was exhausted. Mentally and physically.
And frustrated that she couldn’t understand why this is a difficult process for folk with ME/Cfs.  And may be pointless for me, and a waste of their time also.
I tried and tried to explain why it was difficult. But the longer I tried the more exhausted I got. And of course, the brain fog always gets worse in these situations. And I probably just started to sound drunk and confused.

I really need to be a lot more well than I am just now, to be able to do this.

When I was more well in the past – that of course is when I should have put all my energy into doing it.
But I didn’t.

But I will really need to persevere with this now.
I have doubts about the surgery for a few reasons – parking issues, suspect it may be quite a noisy surgery, etc. When my husband collected the registration form he said it looked as though it was “full of Romanians and asylum seekers” . . .
All I could think of was – as long as they’re not noisy I don’t care.
But the GP has been mentioned to me.
And I simply don’t have the energy to phone around various places. It would just be the same process everywhere from what I understand.
(Did try one other surgery but it was outwith my post code.)

At one point this week, I was actually trawling the internet for websites that sell you painkillers that normally require a prescription. But without a prescription. They seemed to be mainly American sites. But I couldn’t go any further with that – mainly because I just couldn’t tolerate looking at the tablet’s screen for long enough. And couldn’t concentrate enough to be able to read or digest the information.
However that was maybe a good thing. As this would seem a rather dodgy thing to do – maybe even dangerous.
But the pain was bad.

Today however, it is much less.

And I’m writing again – even if it is a bit negative.
I will try and do some lighthearted posts, I promise.

Battered, Bruised and Bankrupt

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Voluntary Bankruptcy

This was the biggest and most life changing event which dominated most of last year.
And is still going on now.
I became voluntarily bankrupt w.e.f September 2014.
Or “in Sequestration” to use the correct scottish term,

I had to make this hard decision because my health was so poor. It had been steadily getting worse over the last few years and I was living a “non-life” really. In bed most of the time (maybe 80% or 90% of the time) struggling with all the horrible ME symptoms (an ever lengthening list). And at the same time trying to keep the property stuff afloat – mainly from bed. With my mobile phone for texts, emails, internet banking. And of course – actual phone calls. But phone calls had to be kept to an absolute minimum as I was too ill most of the time to carry out a business type phone call, or remember accurately what had been said . I relied mostly on emails as I could take breaks in a way you can’t in the middle of a phone call. Plus I needed a written record of almost everything – as my brain fog was severe.

But this was in no way ideal. You can’t deal with everyone purely by email or text. Plus a simple email that should take maybe 20 mins would often take me 4 hours to type. And that could often take me a day or two to recover from the exertion of doing even that.

My “PEM” or “PENE” (post exertional malaise / post exertional neuro exhaustion) has been severe and punishing.

Sometimes I would manage out of bed and get to my desk in my dressing gown and slippers. Looking like an unwashed wreck. Often I had to choose between washing/showering and getting any work done.
Almost every small bit of energy I could muster up had to go on work/property stuff. But over the last few years, I had built up a massive backlog of stuff that I would never have gotten on top of.

In the end I had to choose between my health and my ME getting even worse – or giving everything up.
When I write it like this, I can see there really was no choice.
But I went thru a lot of mental agony and anguish before deciding. Even started to have panic attacks at one point.

Doing this stuff had been my life for the last 11 years.
And I had struggled on for a very long time – because you can’t just get rid of 15 flats overnight. And I knew the consequences of “giving up” would be awful.
It wasn’t like resigning from my career in insurance in 1997 because of my health, after almost 20 years with the same employer. And walking away with nothing. And that door just closes behind you.
That was simple compared to this.

This has been terrible, and caused my health to go even further downhill. Which was one of my fears about doing it.
But it had to be done – and it was done to give myself a decent chance to improve again in the future.

When everything is more settled, and I get to a stage where I have some peace of mind.
I feel sure I can start to improve then.

I’ll probably write more about this in later posts.
As it has been traumatic, and I do need to get stuff out.

Moved house

For 2 reasons :

1) I wasn’t managing in our home very well any longer.
It was a semi-detached house with stairs (obviously). The stairs were hard. I could manage them some days – but with bad exhaustion after. Other days I couldn’t manage at all. My bedroom had been moved into a downstairs room some time ago – but the bathroom was still upstairs. (Had a downstairs loo, thank goodness.) My office was also upstairs (and I was hardly managing into it). The kitchen was too far away from the bedroom and living room for me. And when I did get into it, I often couldn’t stay in it for more than a few minutes at a time – as there was nowhere to sit down. And various windows throughout the house (incl my bedroom) I was unable to open – which would drive me mad.
It had a garden of course, but I rarely managed to get out in it over the last year or two. Any “good” days were spent trying to work and keep everything afloat. Not every one of course, but most of them.

2) The other reason was that we knew we would later voluntarily hand over our house to the Trustee In Bankruptcy. It would have been “taken” off us anyway. We had lived in it since 1998 and there was plenty of equity in it. So we knew it would be sold off to take the equity.
It has just gone onto Rightmove for sale this week. And it looks so sad and empty.

A house move is a stressful event anytime.
We moved well in advance of the bankruptcy taking effect. I actually moved into the flat before my husband at the end of May 2014. As I was desperate to get away from the house, its stairs, and all the other problems.

But as anyone with ME will know – a house move takes a huge toll on your health. Even when it’s a happy house move.
But in these circumstances . . .
I’m just glad its over – and I pray that we don’t have to do it again.

Had to change Banks – twice

How would I describe doing this (with ME) ?
Complete bloody torture . . .
The 1st change was recommended by the financial advisor and done ages before the bankruptcy. Bank manager clearly informed of probable future bankruptcy therefore ensuring everything done properly.
It took me months to get all the direct debits set up again – as I can hardly manage to tolerate using the laptop, or phone, etc with my ME being so bad.

Everything was just getting settled and running fine – then the bank decided that they were freezing and closing down all accounts (nationwide) for any bankrupt people. No notice was given at all. It just happened instantly.
This threw us into chaos.
Husband’s salary had just been paid in a week before this happened and we couldn’t get it back out. Well, we did eventually. But with a lot of hassle.
And trying to get a new current account once you have actually become bankrupt is very difficult. (No surprise really.) Most banks don’t want to know, and I actually thought we weren’t going to be able to open one at all at one point.
It was chaos, and mega stressful with ME.
Because you can’t pay many things without a bank account. And, as already mentioned, I am very limited in even being able to make phone calls. Or use the internet. And physically going out to places to try and pay things in cash was totally beyond me. (Still is most of the time.)
We now have a new account up and running (thank god).
But almost everything (DDs etc) have still to be set up all over again.

Not easy . . .

Homeopathic Hospital (or Centre Of Integrative Care)

Had a 5 day in-patient stay in January 2014.
This was a huge disappointment and actually resulted in my condition getting even worse afterwards. Especially when I read the doctor’s report a few weeks later.
There were many good things about the stay – I must add this.
Eg, the company of the other patients, getting good food at a regular time, the garden view from my bed (and got out into it twice), some of the meditation classes, a marvellous massage (called a Bowen Therapy massage), a great adjustable bed, a chair in the shower area to sit down on.
But there also a lot of odd, weird things that I tried to ignore and block out while I was there. This was hard work to do mentally, as a lot of things didn‘t “feel“ right.
But I didn’t speak up while there.
Partly because too exhausted – the whole effort of getting organised and getting there had taken its toll. And my husband was ill too and I was worried about him.
And the brain fog doesn’t make it easy to think clearly or express yourself when needed.
The other thing was – I didn’t want to be labelled as being “over-anxious” or having a “depressive/negative mood”. So I just kept quiet about things I was concerned or confused about.
But when I read the doctor’s (fairly short) report later – I was horrified. Angry, upset and despairing at what a waste of time and energy (mine) it had turned out to be.
Most of my symptoms had been ignored. And I reckoned about 80% of what I had said (or tried to say) had been dismissed or ignored. Or I hadn’t been allowed to talk about some symptoms.
Looking back – the total time the ward doctor spent with me was maybe 45 mins on the 1st day. Out of a 5 day stay. For 25 years of illness . . .
And a list of symptoms that was getting longer and longer. And more severe.
I had been so “grateful” and “positive” and “upbeat” while I was there. And on the last day, And even when I was just home.

But it all knocked the stuffing out of me.

I tried to reason with myself that I maybe had been expecting too much. But I just expected a doctor/doctors who had some knowledge and understanding of ME/CFS. Then I used up even more energy trying to go back over how it had gone so wrong, why had I not been able to make myself understood, did I not speak clearly enough, had I been speaking too fast (trying to get 25 years of history out remember), etc etc etc.

But it was damaging.

Have no GP now

Well, that’s not totally correct. But as good as.
The combination of having moved house to a different post code (although I’m actually closer to the surgery now), and the fact I haven’t been able to get into to surgery since 2011, means that I was told in October 2014 that I had to find a new GP.

I’m still reeling from the phone call that day.

A GP that I had never met or even spoken to before phoned me after my husband went into the surgery before going to work that morning. To ask for better (any) painkillers for me. My headaches have been very bad the last few years (mentioned while in the Homeopathic Hospital, but not taken seriously). And I had been awake most of the night actually crying with the pain. One of the worst nights ever, pain-wise.
The GP who phoned was abrupt and aggressive, wouldn’t let me speak, and I’m not sure she even understood what I was trying to say part of the time. She had a foreign accent.

She used phrases like :

“What’s wrong with you – are you housebound or something ?“
(Re why I haven‘t got to the surgery since 2011)

“We only do home visits for elderly people or people who cannot walk”.
(I didn’t want a home visit – just some effective medication.)

“If we come out to visit you and find out you CAN walk – we will be very angry with you.”
(I didn’t want a home visit but I was speechless at this.)

“I am noting your records now that you are not to be given any more prescriptions.”
(She talked to me like I had done something wrong. And was therefore punishing me.)

“There’s no rush – just within the next few days.”
(Telling me I had to change to another GP surgery – despite me trying to explain I hardly managed out, or even to make phone calls most of the time.)

And it went on and on.

I was in tears (of frustration) after it. And my heart rate felt like it was thru the roof for days later.
I have been with that surgery since 1987 and l don’t think I’ve had a home visit (or even asked for one ) in all those years.

Asked 2 ME Charities for help in finding a new “ME/CFS friendly GP”

1) Most recently (a few months ago) :
Paid £20 to join one and used a lot of time and energy emailing their advocacy worker. To explain in detail how limited I am and why I was asking for their help with the GP issue.
She was very nice, but explained she had a big backlog of people with ME needing help. And couldn’t really spend any time with me at this point in time.
She did mention one GP but I don’t think the practice is going to be suitable for other reasons. Even if he still works there, which she wasn’t sure of. And I would still have be a lot more well than I am just now to be able to make enquiries, or go there.

2) A few years ago :
The other charity (or maybe its more of a support group) – I used to be a member of years ago. But only managed to go to 2 or 3 meetings.
Anyway, I asked if I could pay the annual membership and rejoin. And explained my main need was for help finding a decent GP.
(This has been a big problem for me for years.)
I had hoped that somebody/anybody could just give me a recommendation for a decent one. I got an email reply just suggesting I come along to their next meeting – although I had tried to explain how limited I was, and rely mainly on email. I emailed back a few times asking could I pay their membership and rejoin anyway – but they just stopped replying.
So I gave up.

Car broken down at end of road – 5 weeks ago

I went into bankruptcy for health reasons.
To relinquish all the properties, and all the work and responsibility that went with them. And all the dealings with Letting Agents, Tenants, Banks, Mortgage Lenders, Tradesmen, Factors, Insurance Companies, etc etc etc.

It wasn’t so much for financial reasons – although debts had certainly built up over the last few years with me not being able to deal with things well, or quickly enough. I was making losses and haemorrhaging money.
But before the process started, everything was getting paid ok and nothing was in arrears. But it was a struggle trying to juggle it all.
Our assets well exceeded any debts – on paper anyway.
After the process we are left with almost nothing.
The Trustee is allowing us to keep this one flat to live in – mainly because it has a big mortgage on it and no equity in it.
But any life assurance and mortgage endowments were taken off us and cashed in.

But – the one bonus for us was they allowed us to keep our beloved BMW.
Only because it is so old – it is a Y registration. Which is roughly 15 years old I think. And it is probably worth less than £1000.
I have always loved this car.
It is the most reliable car we have ever had – and it looks good. And is so comfortable and secure to drive (when I’m able to.)
I was forever boring people with how reliable is has been.

5 weeks ago it broke down at the end of the street . . . .

A major suspension issue – involving a lot of labour time to fix (as well as an expensive part). To have it fixed by a BMW dealer or even a smaller garage would be unaffordable. The repair would cost more than the value of the car itself.
However, we are lucky that a friend of husband’s is working on it. Which will be much cheaper. But its a very slow process as he can only do bits at the weekends. In daylight. And the weather hasn’t helped.
But it will get fixed – eventually


This blog post has taken me ages to write. I changed it so much. And didn‘t want it to be so long – but felt the need to get all this out.

And it will be the first that most people in my real life will learn about the Bankruptcy.
I have only managed to tell a very small number of people. Mainly because my health has been so bad and I have hardly managed to see anyone.
(And it’s not really suitable for a text message . . . )

I’ll probably write more about much of this stuff in future posts.
I’m desperate to be writing again.
It is a struggle as I’m still feeling quite unwell much of the time. And just trying to think and concentrate is exhausting. And using my laptop feels like torture some days.

Doing this post will no doubt wipe me out for days. I feel totally wrecked after doing it.
But in this case, it will be worth it.
The more I can pour all this stuff out (onto this Blog) – the more it is out of my head. And creates “headroom” for better stuff.

That‘s the plan anyway . . .

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