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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 ALL OF THE DETAIL FROM THIS PART TOO.

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

HAVE REMOVED STUFF HERE TOO.

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

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

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

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

Hope you are well and business is good.

Best regards

Anne Dean ”

Blog post amended 26/4/2017.

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

 

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. 

 

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 . . . .

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