Originally Posted by Mark in Idaho
The others have given you some great ideas. The YouTube series starts at
Share it with your friends. If you can, invite them over one at a time or maybe two at a time if they are not prone to be too talkative.
It sounds like you may have not taken enough continuous days of quiet rest. The key is linking as many symptoms free days together as possible. The brain heals best with continuous days. Just because you feel good after a day of quiet rest, it does not mean you are ready for activity the next day. That next day can undo the good from the quiet rest day.
It helps to learn to recognize the very early symptoms of brain strain. The slightest sense of bleary eyed or struggle to understand is a signal to remove yourself to a quiet area. It can be as simple as asking someone to repeat what they said. If you did not understand the comment the first time, it was more likely your brain's struggle than your hearing.
For me, I do best with other sounds and voices completely eliminated. Turn of the TV, stereo, and have the other stop talking. Only one voice at a time and that voice should be looking at you so you can see their lips.
With some understanding friends, you can have a quiet social life until you can tolerate more.
My best to you.
Thanks again for your insight and suggestions which are always accurate and useful.
I have started watching the YouTube series you recommended and find myself connecting with a lot of what is presented.
I agree that ‘joining continuous days of rest’ is an important factor in recovering. However, the problem is that my symptoms are easily exacerbated from even the slightest physical exertion (e.g. defacating – as embarrassing as it is). Considering this, even if I make it a few days without exertion and therefore without symptoms, eventually I need to head to the bathroom and it’s back to square one, or thereabouts.
I plan to take 2-3 weeks off from work around the Xmas period in an attempt to promote my recovery. Although I don’t see how useful this will be when simply going to the bathroom causes a massive regression. I.e. how can I ‘link symptom-free days together’ when the symptoms are so easily triggered? How do you (or anyone) think I should get around this??
In all honesty, I really wish I could just be put into a coma for a few weeks to ensure that nothing aggravates my symptoms. But as we have already established, I think this is an impossible option. Unless anyone knows different?
To summarise, I do not wish to keep using up all my annual and sick leave doing as little as possible (physically and cognitively) in an attempt to recover, when really all I am doing is remaining stagnant with my condition (i.e. not recovering), and avoiding everything that is important to me. I.e. I am basically existing to continue my existence.
Knowing this, I almost feel that I should try and get back into my old routine (with ease and limitations) and just see what happens. Even if my symptoms remain, I doubt they will be worse than what they currently are, and perhaps it will at least provide me with a small sense of happiness and the chance to reconnect with my friends. Maybe this is a better option compared to just doing ‘nothing’ and still not recovering? It has already been over a year and I'm not sure how much longer I can continue to avoid all forms of activity and pleasure in the hope that I might progressively become better.
Any thoughts or suggestions would be greatly appreciated!
I have also considered explaining my condition to some of my friends and, although many of them will say "sure, we understand", unfortunately, this will only be for a while... I'm sure many others may agree with me on this.
Thanks in advance.