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 . . . .
Apr 26, 2017 @ 12:02:06
Please try to rest Anne.I wish I had more profound and practical words of advice.This monster of an illness is in charge sadly.Youve done your very best with all the cr*p legal business,so take comfort from knowing that.As a severe bedbound sufferer all I can say is that you are not alone so let’s breathe together.So do bow out of doing anything other than taking care of yourself.Xx
Apr 26, 2017 @ 17:07:53
Hi Anne, I’ve been following your story for a while now as we seem to have similar situations. I’ve also been in bed most of 2017, I have the same reactions as you to difficult phone calls etc. When I’m going through like you are now I try to tell myself to just check out of everything. When I improve later (as you will) I am shocked that I expected so much from myself at a time when it was impossible. The way you describe how you feel (was awful for you, but ) great for me to know it’s not just me who feels overwhelmed like this.
Take as long a break as you can and just say sod it for a while, come back when you can, it does eventually get better but you must relax your brain. I’ll be thinking of you, sorry I’m not much use, struggling to write this but wanted you to know.xxxxxxxx Sarah
Apr 27, 2017 @ 16:36:22
How lovely that another sufferer,Sarah, offered her wise caring words….all so true.This monster is in control when we try to outsmart it so Sarah is spot on….we all really know what to do but human nature being what it is always strives to push on….then simply there are the awful times which demand us to use energy we really don’t have…..oh,that adrenaline!
Knowing others are out there trying to deal with an illness which is like nailing jelly to a wall,must remind you of how Toni B always tells us firstly to remember that we’re not alone.Fellow bedbound warrior gentle hugs and thoughts.Xx