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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 very badly 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 . . . .

#MillionsMissing – another photo

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image

Following on from my last post on the #MissingMillions day on 25th May 2016.
Here is another photo taken on the day of a lot of empty pairs of shoes that were sent.  This was in one of the American cities.

I just could not work out how to add this photo into the previous blogpost – in place of the one I deleted. Which would have been better.
I realise it is probably very simple when you know how . . .
But I struggle a lot with using any tech things like tablets, mobiles, laptops, etc. So many ME symptoms get triggered off, or made worse.
Hyper-sensitivity, electro sensitivity, or whatever . . . In any case, it can make simple things difficult and painful to do.
Just sending text messages can be torture even with my smartphone’s brightness on the absolute lowest setting.

Anyway, I’ve probably mentioned this before.  But just to explain why I have done another blog post just to correct a photo.

Making a meal of something that ‘should’ have been simple . . . .

Missing from our own lives

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This was the scene in one American city yesterday – just one city.
For a day of worldwide protest called #MissingMillions.
Update :
Photo removed – see notes in Replies section. Sorry for confusion.
I will try to insert another photo into this post – when I have the energy to work out how to do it. Not very good with tech stuff like this . . . !

The shoes belong to people with ME who sent them in. Or got someone to send them. (I didn’t even manage to do that.)
To represent the fact that so many of us with ME are not well enough to attend a protest. Even if it was on our doorstep.

We are missing from our own lives.

And from the lives of our friends and family. Even much of the time from the lives of our husbands, wives or partners.

We are pretty much invisible to the world.

I am exhausted after just following it on twitter yesterday.
To the extent that I haven’t been able to wash, get dressed, or eat any proper food today. Just snacks.
(But I have had many days where I have been much worse than this.)

I wanted to do this blogpost as it was a very emotional thing to see all the photos of empty shoes.
Incredibly emotional.
So many lives going to waste.
And I bet all these shoes only represent a small percentage of the number of sufferers.

It was uplifting too.
And I felt less alone than I have done in a long while.

Surely this will help society realise that we have a serious illness which is very disabling ?

And that we’re not just a bit tired.
Or having a nice sleep in bed.

I wish . . . .

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.

Re-blogged : Hip Surgery and ME: Society Has It Wrong

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I had to reblog this post.
It is from Jeannette Burmeister’s blog which is called
http://www.thoughtsaboutme.com.
And it is written by her husband Ed Burmeister.
It is about one of the worst, most painful issues, encountered by people with ME

Jeannette Burmeister's avatarThoughts About M.E.

I am proud to share a note that my husband, Ed Burmeister, wrote last week. He initially posted it on Facebook only where it received a lot of attention and was shared more than 250 times. It really resonated with the community.

Therefore, I talked him into allowing me to post it here as well. I am blessed to have such a supportive and loving spouse.

Last Wednesday, I had a complete hip replacement.  It was a short procedure (1-1/2hours). No general anesthesia required.  I was out of bed the day of surgery and home after two days.  On Monday, I started driving again and really could have done so on Saturday already. Yesterday, I returned to work. I was comfortably working away, largely free of pain.  I walk without a limp and with no assistance and am pretty much unrestricted in my activities. I never needed narcotic painkillers after…

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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

Reasons For Blog

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A few days ago I was reflecting on my reasons for starting this blog. I said the main reason was for myself – to de-stress. And this is true. I also said I wasn’t bothered if people read it or not – well this wasn’t totally true. I would like people to read it.

Because :

1) I am so anxious for people to know I am not lazy.
This is something I am sensitive about – but it is because of the treatment I have encountered over the years. Many years.

2) So people know what I do – re working with property.
I work for myself, by myself, at home – and sometimes feel a bit removed from the outside world. Doing it with CFS isn’t always easy. Its not that I’m craving attention – but nobody likes to feel they are hidden away with people having no idea what they do all day.

3) To help friends understand why it has often been difficult to have a proper social life.
I am not choosing not to see them. And I am trying to get things back on an even keel.

Other reasons :

4) To help get the word out about the awful treatment of CFS and ME. And to add my voice to the calls for recognition from : the government, health professionals, and the general public.
At the moment the situation is a national and world-wide scandal. People with very severe CFS and ME are actually dying – and it is ignored. Just hidden away.

5) To connect with others with CFS or ME.
Joining twitter opened my eyes to how many people were out there who wanted to talk and share experiences. And just to connect.

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