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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.

Gratitude 4 : Bagels made by Hubby

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Grateful for – Bagels with cheese and ham, with some cucumber and baby tomatoes. Made by my husband.
And a cup of tea.

Had this for breakfast this morning. And really really enjoyed them, especially as I’d eaten nothing since yesterday afternoon.
Was starving . . . !

Reason for this was bad headaches resulted in me getting into bed early evening. With painkillers. And the plan (ie. hope) that a couple of hours lying down, comfy with eye patches on would do the trick.
It did – eventually.
But I was feeling exhausted after just printing 6 emails off in the afternoon. I find it too hard to read things some days unless its in print form. But just looking at the laptop screen for too long, plus the noisy printer triggered off the dammed headaches. Anyway I ended having to stay in bed right thru to this morning.
Hence no dinner last night.

But don’t want to dwell on that.

My point is that I’m always so grateful for my hubby making these bagels for me. (Although they’re meant for my lunch, not breakfast.)
He always makes them the night before while making his lunch rolls for work. He has been doing this for so long now he kindof does it on autopilot.
And I’m very grateful for it . . .

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.

The Real Face of CFS . . .

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OK, here are 4 photos.
I think I am being quite brave putting these on. Especially as photo 3 is awful !

Photo 1 : A Good Day

Photo 2 : An OK Day

Photo 3 : A Bad Day. In bed, exhausted, in lots of pain (head, eyes, neck, shoulders). Unable to function.

Photo 4 : The same Bad Day, but the pain starting to ease off. Maybe 5 hours later.

When people see me – I am maybe like photos 1 or 2.
But for most of the time, people don’t see me. And this is very typical of people with CFS or ME.
This year, I have probably looked like photo 3 for a huge amount of the time – maybe 75% of the time.
In bed, exhausted, in pain, not functioning in any way.
Just ill.
It has been one of the worst years I can remember in all my years with CFS.

But I think I’m starting to improve slightly now. Very very slowly – baby steps.
I’m almost scared to say this – incase its tempting fate. If that makes sense ?

I wanted to publish these photos – as Photo 3 is the “real face of CFS”.

OLYMPUS DIGITAL CAMERAOK DayBad Day Recovering

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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