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 . . . .
Your Jaw Never Gets Tired 
More of those comments
September 22, 2012
Anne Uncategorized children, comments, exercise, frustration, ignorance, phone calls, things People Say, tiredness Leave a comment
Oh God, the comments from people . . .
Have you no hobbies to fill your day ?
What – on top of being a Landlady and trying to keep a property portfolio (albeit a small one) afloat thru the credit crunch & recession ? And the daily struggle with household tasks? I‘m just grateful if I have any energy left over to eat my dinner or watch TV some days.
Your lucky you don’t have children – as you would just have to get on with it.
How would that work then?
Have you tried just getting on with it when you don’t have enough strength left to even stir a cup of tea ? But even more seriously – the whole issue of people with CFS or ME not managing with their children can cause much guilt or heartbreak. Just read the book Shattered by Lynn Michell – there is a heart-rending section about this in it.
Nobody can be that tired (that they can’t make a phone call)
Want to bet ?
I rely on email a lot because of my CFS – as you can take as long as you need (to think) plus stop for many breaks. You can’t do that during a phone call – the person would just hang up on you.
I know you have your issues
OMG – my “issues” – what are these then ?
From a friend I hadn’t seen for abbout 18 months. Did you maybe mean to say how are you and how are you getting on . . . ? No ? Oh well .
You must keep exercising – no matter how bad it makes you feel.
Unbelievably this was from the GP I kept going back to for years and years before I got diagnosed. She was very abrupt. In fact I’m not sure she was actually a GP – just somebody doing a very bad impersonation of one . . .
Let me know when you will be ok to go out
How will I know ? Understand this one if from people who don’t really know me – or anything about CFS. But from other people . . . A bit frustrating.
She gets a bit tired at times.
This from my husband trying to explain it to people for me – and failing dismally . . . ! A major cause of much stress and rows over the years – but that’s another story.
Just let me know in advance if you cannot make it
Again – how will I know ?