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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 . . . .

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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.

Unwanted Visitors

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Last Friday was a very bad day.

An incident happened in the morning which sent all my ME symptoms into freefall. And me into a big meltdown.
It was stressful and unnecessary.

The day started well and I was up and dressed at 9 am. 
I’d had a bath or shower the night before, and had gone to bed very exhausted after it. But had slept soundly. So I was quite refreshed for a change.
The plan was have some breakfast then get outside for a short walk. Even if just very short. It looked lovely outside – bright and sunny. I was desperate to get out.

I was sitting enjoying my breakfast when the doorbell rang at 9.30 am.
I was expecting a delivery from Amazon of Co Enzyme Q10 capsules (taken to try to reduce my chest symptoms). So I opened the door without hesitation.
Two men were standing there and one of them introduced himself and showed me some ID.
I didn’t take in much of what they said or where they were from – but I managed to hear the bit about repossessing a property. I knew they didn’t mean the one we now live in which is our home now. But my head was immediately spinning.
I think I said something like “Oh for God’s sake, how many times . . . ” And then “you better come in” .  And I brought them into the living room.

I wouldn’t let them talk as my whole system had gone straight into a red alert state. From a stress/panic level of zero (totally relaxed) right up to a 10 (off the rails) in a spilt second.
No thinking about this and no choice in it at all.
I mentioned this in a previous post – the effect just a text or voicemail about the Bankruptcy stuff has on me now. To the extent I feel I cannot switch my mobile phone on now, as my body’s automatic stress response is so damaging for me (and my ME symptoms).
And that is just a simple phone message.  This event probably caused a much worse reaction.
I managed to digest the fact they represented solicitors who were acting for the mortgage lender Mortgage Express. Who now wanted to repossess 2 properties. Or they may have been from Sheriff Officers (like bailiffs) who the solicitors had employed.
Anyway, I got the gist of it.

I wouldn’t let them talk – instead I went straight into a sort of rant that must have lasted 25 minutes.  Hardly stopping for breath. A few times I did almost stop as tears were threatening to take over. But I just  kept on and on – like a steam train.
I was saying (maybe yelling) stuff like :

I am Bankrupt and have been for a year now
You (ie Mortgage Express) have been told this over and over and over
How many times do you have to be told ?
Why does NOBODY update your records ?
The whole reason for the bankruptcy was my health – to give away ALL CONTROL OF ALL THE PROPERTIES to the Trustee In Bankruptcy. So they would deal with EVERYTHING.
That is what I was told would happen
But it hasn’t happened
This is going to kill me
If I was well enough to sit here and have meetings – I wouldn’t have had to go Bankrupt in the first place
If it was just about finances – then I wouldn’t have volunteered for Bankruptcy. We could have sold our house yourself.
I used to have a perfect credit rating of 999 with Experian  (nothing to do with anything now – just misplaced pride I guess !)
I shouldn’t be getting treated like this
The Bankruptcy advisor told me the flats would all be handed back to the mortgage lenders. Then told us that the Trustee would be selling them instead.
Which was totally fine. Either way was fine
This was the WHOLE point of the Bankruptcy.
I’ve been trying to give you (Mortgage Express) these properties back for well over a year now
What is the point of repossessing properties that I am trying to give you back ?
How hard can you make it ?
It’s all such a shambles and its killing me
If you’re going to speak I’ll have to record it, as I won’t be able to remember anything you’ve said . . . !  (they couldn’t get a word in edgeways)

And on – and on – and on I rambled and ranted, until I finally ran out of energy.

The 2 men seemed fairly sympathetic, but that was maybe just because they couldn’t get a word in.
They did manage to mumble about procedures and stuff.  To be honest I wouldn’t have taken in anything they said – even if I had allowed them to speak a bit more.  They gave me some legal letters and tried to explain what they were.  But I just grabbed them and was saying stuff like
“I can’t even read this – it will just get posted onto the Trustee In Bankruptcy for them to deal”
“EVERYTHING gets sent onto them . . . ”
“They are supposed to deal with EVERYTHING . . .”

I think they were glad to get away.

After they left all my energy just evaporated.
I sat looking at my cold cup of tea for ages.
Then the tears started. From exhaustion, frustration, anger, etc etc.
Then I decided to phone my husband at work.
I shouldn’t have done this. But I had got myself into such a state I had to tell him. But all I did was rant on the phone to him. I kept saying things like – this shouldn’t be happening, they (the Trustee) must be able to stop this stuff, they were meant to deal with everything, etc etc etc

He then phoned the Trustee. But he said he ended up going into a rant himself on the phone, as he felt helpless and frustrated at not being able to do much to help.
When he called me back later, the only update was they had said they were very sympathetic to my health situation, but this stuff is just procedure.

And they suggested that I just do not answer the door to anyone . . !

How long for, I wonder . . . ?
These visitors were talking about 2 properties. There are another 12 to go . . .

I spent the the rest of the day curled up in a tight ball on the sofa. And just cried and wept for a few hours.
My temperature must have plummeted as I was very cold although it was sunny outside. So I needed the heating on for the whole day.
And all the usual symptoms were there – headaches, out of breath, heavy weight/feeling of compression on chest, legs and arms like jelly with no strength at all, head spinning and feeling dizzy, chest pounding – I dread to think how high my heart rate must have been
etc etc etc

So, to sum up the current situation :

Can’t bear to switch mobile phone on – because of unwanted missed calls and voicemails.

And cannot risk answering the door for the foreseeable future.

Given that I heavily rely on things being delivered (eg health items from Amazon) this isn’t ideal.

This situation is not conducive to improving my health in any way at all.
It is damaging it further.
It’s like constantly being made to walk on broken legs – destroys all chance of healing and recovery.

I just wanted to run away.
But I didn’t have the strength left to walk to the kitchen.

On Sunday night/Monday morning I was sick during the night, and had a lot of bouts of diarrhoea.
Horrible.

My whole system felt wrecked.

I just hope things improve soon.

Going Into Hospital

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Can hardly believe it’s already the 24th Jan 2014.
I haven’t managed to do many posts in the last while, I know.

Everything has been too difficult.
Same old story . . .

Incase anyone thinks I am being a drama queen – my husband was almost in
tears the other night. And was saying things like “this is a terrible life” . . ,
NB.  He won’t thank me for quoting this here – but I have to.
As very few people can have any idea of how much struggling with CFS/ME long term takes out of you, and your partner. (Where you’re lucky enough to still have one that is.)
When there has been so little help available.

This is just a very brief update :

On Monday 27th Jan I will be getting the benefit of a 5 day in-patient stay (treatment and rest) in the Homeopathic Dept of Gartnavel Hospital in Glasgow.
And while I could say :
At last – some much needed help after what feels like a 25 year struggle, etc etc etc . . .  I do realise I am very fortunate to be offered this at all.
There are many people with CFS/ME much worse than me.
And so many people are just left to rot. Which was what I felt had happened to me – until recently.

Looking forward to this has without doubt given me a big mental & emotional boost – because how could this week fail to help me ?
Even just a little bit will be a huge bonus.
They are a Centre Of Integrative Care after all – which sounds ideal for people with CFS/ME.

But the effort involved in sorting out various work things, putting some changes in place, etc – has had a bad  physical effect on my health this past 2 weeks.

I’m getting that heavy pressing weight in my chest again. Lots of other symptoms too – but the weight on the chest (and out of puff so easily) is a problem that isn’t easily ignored.

I haven’t even been able to give much thought to what I want (and need) to take into hospital with me yet. And right now I have so little energy left that I can see me arriving at the hospital with just my handbag and maybe a toothbrush in it.
And little else !

But this is meant to be a positive post – and I have no doubt this coming week will benefit me.  Even if I do arrive looking as if I’ve been pulled through a hedge backwards . . .
And I’m really grateful for this chance.

I don’t think there are many of these Integrated Care centres throughout the UK.
I am very lucky that this one exists right  here in Glasgow.

Roll on Monday . . .

My CFS Symptoms

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I decided to list my symptoms with CFS.   Not for fun (!) but for various reasons :

I’m sure there people out there who still assume Chronic Fatigue Syndrome just means that we get a bit tired. And get tired more often than average.
And therefore they regard it as not very serious.
But (unfortunately) there is much more to it – as you can see from this list.

It is rather a long list – and I realise that I have some symptoms now that I didn’t have eg. 6 years ago. I feel that the longer you have CFS and/or the longer you had to go before getting diagnosed – the more it may become “entrenched” or “ingrained” in you.
And all the harder to get rid of.
NB. This is just my personal opinion and not based on any medical facts.

But I also know I am very lucky in that my symptoms do fluctuate and I am not hit anything as badly as some who are classed as having severe CFS or very severe CFS. Or severe ME & very severe ME.
Plus in making this list I noticed that some symptoms I had quite badly years ago – I rarely get now, eg. IBS.  (= good)
But on the other side of the coin I have developed other new symptoms in recent years, eg. 21 – 23.  (= bad)

Anyway – here they are :

1) Flu-like exhaustion (no strength or power left)
2) Muscle weakness
3) Muscle pain (esp neck, shoulders, upper & middle back)
4) Stiff neck
5) Sore/stiff right arm and wrist
6) Headaches (more often & severe last year or so)
7) Weakness & lack of grip in right hand
8) Out of breath easy
9) Chest tightness or heaviness
10) Heart pounding/racing
(Pulse Rate always high : eg. lowest usually 80 – if feel well and am very rested. Can be much higher – eg. 141 the other day after having a shower.)
11) Blurred vision
12) Always thirsty
13) Memory bad
14) Often forget point I’m talking about mid-sentence
15) Find it hard to be concise – often go off on tangents
16) Cannot find the right words at times
17) Poor concentration – cannot focus on 1 thing at a time
18) Racing thoughts – all jumbled up/so many things that need doing/
19) Brain Fog – thoughts very slow, as if they cannot get thru,
20) Eyes get tired very easy
21) Cannot tolerate bright light some days (eg. from TV or PC screen)
22) Cannot tolerate noise some days or sudden change in noise levels (eg. different sound levels on diff TV channels)
23) Cannot tolerate moving images some days (eg. on TV)
24) Prone to getting cold easily (especially if overdue food)
25) IBS
26) Excessive sleeping some days

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