A slightly different entry today. I think I am trending in the right direction now, the ebv symptoms and swelling in the glands appears to be calming down finally:
It's dawned on me over the last few months how I cannot think of any happy memories anymore. Every time my mind goes to a happy memory it's pre ME, every single time.
All the memories I have post ME (literally broke up with a girl the week I got ME because well I was confused at the time mentally and physically and didn't know what the hell was going on, so extra complications were something I couldn't deal with) are just struggle and difficulty.
It's just saddened me that like many here it becomes harder and harder to think back on a happy memory. I think working full time has actually made things a lot worse, I've spent time in offices with my head spinning from ME, or physically fatigued or struggling to get out of my chair, to have people laughing or bullying you (in one instance) while dealing with all that crap as well.
Then there's the anxiety and difficulty of knowing whether you'll have to quit work on your next big crash. It just feels like it's one long never ending road of misery.
Even as I got 4 or 5 days of feeling really good on the protocol linked in my signature I have got so used to aggressive pacing (spending all my spare time in bed), crashing after any type of exertion and struggling through every trip out, celebration, birthday, whatever. That I was trying to grapple with even the momentary semblance of feeling "well" because it was difficult to remember how to even be happy. Of course I think that just comes with practice, when you're no longer scared of your body all the time and your at least 80% free of viruses that make your ME worse, you will eventually feel better and your memories will be happier.
Because you're no longer carrying a swollen head around, your heads no longer spinning, you don't collapse from exertion at the drop of a hat. It will be great one day when everyone is free of this disease so they get to feel that good. But it's a contrast to the enforced limitation of aggressive pacing and energy management which consumes your every moment and locks you indoors.
It's dawned on me over the last few months how I cannot think of any happy memories anymore. Every time my mind goes to a happy memory it's pre ME, every single time.
All the memories I have post ME (literally broke up with a girl the week I got ME because well I was confused at the time mentally and physically and didn't know what the hell was going on, so extra complications were something I couldn't deal with) are just struggle and difficulty.
It's just saddened me that like many here it becomes harder and harder to think back on a happy memory. I think working full time has actually made things a lot worse, I've spent time in offices with my head spinning from ME, or physically fatigued or struggling to get out of my chair, to have people laughing or bullying you (in one instance) while dealing with all that crap as well.
Then there's the anxiety and difficulty of knowing whether you'll have to quit work on your next big crash. It just feels like it's one long never ending road of misery.
Even as I got 4 or 5 days of feeling really good on the protocol linked in my signature I have got so used to aggressive pacing (spending all my spare time in bed), crashing after any type of exertion and struggling through every trip out, celebration, birthday, whatever. That I was trying to grapple with even the momentary semblance of feeling "well" because it was difficult to remember how to even be happy. Of course I think that just comes with practice, when you're no longer scared of your body all the time and your at least 80% free of viruses that make your ME worse, you will eventually feel better and your memories will be happier.
Because you're no longer carrying a swollen head around, your heads no longer spinning, you don't collapse from exertion at the drop of a hat. It will be great one day when everyone is free of this disease so they get to feel that good. But it's a contrast to the enforced limitation of aggressive pacing and energy management which consumes your every moment and locks you indoors.