At the hospital, again

[BaronC]

Here you go...

youtu.be/OORLAtczvdg(Not working as expected?)

[RogerCMerriman]

As on YouTube/Facebook I used to have some sunglasses like that! So no M?E? Give them time it will come back around!

[BaronC in reply to RogerCMerriman]

We'll see...

[Kirk5w7]

Oh Andy, just love your sense of humour on this. You have to latpugh don't you. So, I was labelling my fatigue as Post Viral syndrome, still chronic fatigue, label it what you will. Looks like I'm going to be fatigued til the day I die too.

I don't have the medication but I too had a tracheotomy and I have problems swallowing sometimes so could have the same issues, but I had a virus which eventually caused the BI so they wouldn't label me with ME either.

Oh well, I've just woken from an afternoon nap, that'll keep me going til I can't get to sleep tonight!

Love Janet x

[BaronC in reply to Kirk5w7]

I've essentially learnt to not mention fatigue to anyone in the medical world, it's just not worth it. I suppose I got ALL my bloods checked and they were all clear so there is a bright side.

[Kirk5w7 in reply to BaronC]

The only people that have really understood the fatigue, but were no help really as they are still trying to get to grips with how to deal with it, was the Encephalitis society. They helped my husband understand that this is something that is so difficult to deal with and not just being lazy.

We've no chance getting most people to understand when the professionals can't a grip on it .

X

[BaronC in reply to Kirk5w7]

Exactly! If the professionals don't get it, we may as well plait fog...

[Tortie14]

Great to see you made me laugh having had a post viral fatigue problem years ago and faced with a doctor who said "don't believe in ME but if I did you don't have it' and was worse than useless I empathise. In my case NHS did nothing at all. It was trial and error feeling rubbish for a lot of the time, learning what helped and what made it worse (trying to work through the fatigue and wine) and a lot of doing very little except survival (social life went) but eventually I recovered. But when I had my head injury I was reacquainted with my old adversary fatigue (as opposed to normal tiredness). Good luck with getting some help to reduce the fatigue somehow.

[BaronC in reply to Tortie14]

I know exactly how you feel, I really do. Pain in the posterior isn't it

[TiredNan]

Hello there Andy,

Appreciate you giving me a smile... liking the outfit.

Sending you all my best wishes and thank you for being there for us all.

TN x

[BaronC in reply to TiredNan]

Hi Nan, it's my pleasure! Hoping you're well

Andy

[TiredNan]

Doing ok Andy thanks for asking... plaiting fog and resting up. Agree with all you say about fatigue and docs.... definitely....

You take care of yourself and if you decide to market the outfit you are wearing in your clip there put us all down for the BaronC onesie for christmas. At least we would recognise each other when we go out ha ha!

All the best Nan x

[BaronC in reply to TiredNan]

Ooh, you think I've got to the stage where I can sell merchandise do you??

I do have a 'Brain Damaged Baron' t shirt, mug and keyring. Genuinely

[TiredNan]

Ha ha I've got a mug that says " I just let my mind wonder and it never came back"....

Thats a mug as in cup although my face often wears the same expression

[BaronC in reply to TiredNan]

Nice, I like that

[angelite]

I'm glad you haven't been labelled for convenience - ME does encompass many symptoms and any further health issues could potentially be put down as due to this instead of being properly investigated. No guarantees that you would get any useful treatment with ME. Better to stay as you are, with BI, Epilepsy /meds etc cited as reasons for fatigue. I can see why you were referred though - sore throats, fatigue, brain fog etc. Good that your bloods are all fine - at least basics are working, even if you still feel like cr*p !

Fatigue has been a major issue for me since relapse - partly due to the extra physical/mental effort required and the range of annoying things that keep waking me.

I noticed you said you had issues with breathing at night - do you have sleep apnoea ? x

[BaronC in reply to angelite]

No, not really. The Baroness says I do snore now and again, but not enough to really wipe me out. The simple fact is that I have a brain injury and the fatigue can be traced back to that at all times

[razyheath43]

HUGS! Love the hat!

[BaronC in reply to razyheath43]

Thank you and thank you