Hello again

So chronic fatigue syndrome is not a fun party nor is editing this blog post on my phone with a non responsive blogger on my phone but that is just the tech geek in me.  So I have been away from the blog dealing with life which to be honest has been tough.

I had to give up my job in London which was crushing when workand travelling  started to get tough and a new boss came on board who found it difficult to deal with me and my disability so I quickly removed myself from that situation because quite frankly crying in the toilet isn’t much fun.

I quickly found myself a new job closer to home and my condition seemed to improve for a while. I also got myself a little referral to the CFS clinic in record time and met some lovely people who didn’t seem to mind that I was crying on their shoulder before we had even made it through the door. 6 sessions in now and progress was good.

However I have decided that CFS/ME is a bitch that doesn’t let you get comfortable for too long and with the on set of winter, the looming doom of increased pain, fatigue and brain fog oh and let’s not forget the crying the toilet has returned.

I struggle to deal with people who I am not entirely comfortable with and their moods. I just seem overly sensitive to their moods and think I am the one in the wrong and that their frustrations are aimed at me and my lack of ability to function normally. I hate that I can’t socialise for more than 4 hours with the friends I love without lying on the sofa hours the next day or that I can’t go to a gig with my husband because I can’t stand the noise anymore but then another day it will be fine. You crazy up and down condition

I struggle with the fact that I can’t work normally and that I have to ask to work differently and all the crap that comes with peoples judgement about that. People this is the 21st century we can work remotely and not all of us are lazy assholes who won’t do any work if not supervised

I hate that I struggle to spell simple words that the day before were easy and that I can’t speak some days. Then I feel guilty about not achieving one thing that day because the brain puts a big stop sign in my way.

But I am lucky because this could of been lot worst,I am not one of the 25% confined to bed everyday only seeing those four walls. I have also made some awesome spoonie friends and reconnected with some others. I am lucky that my husband is an awesome dude who is supportive and gets the illness. I haven’t got my shit together but I am hoping that what I have got is enough for now and the rest will come together one day.

Much Love 💕