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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.

Am I getting worse ?

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

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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