I have a little more energy but more sleepy at the same time. I have wanted to die from the LDN pain! It was so rough and it took me emotionally to a place I have not been in a bit.
But at the same time, I have hope on this drug, Is like even though I am having all these side effects, I noticed I can do much more. Is hard to explain but if I can live and I mean live in the sense of the word living, no like level 4 and down of cfs live style, I could take pain and been sick. Like I can keep moving and survive this even if I don't get cured.
Work, I have a lot of people ask me when to go back to work, is it worth it, how you do it. Let me tell you DON'T, UNLESS YOU CAN WALK a mile and stand for at least a few hours with no PEM.
I don't work in the same sense that others do. I have a recliner at my office, I do not require to move much (at the moment) and I am horizontal most of the time, Only stand to go to restroom, and no much people interaction either. I pack breakfast and lunch to avoid movements. I go to my car and rest for lunch and breaks (now that is cold it has been even harder, because I have to skip my mid day rest). If I would be any regular Job I would not stand a chance and I am at a level 6 to 7.
So here is how I calculated this, I work in a big place. Bathroom is a walk for a CFS person, Going to get to the cafeteria is another trip. Not counting walking to meetings and just interaction with people in general, we get overstimulated, we don't get to say in the middle of a meeting "well you are all overstimulating me so I am going to go to rest now ( I tried!)" So you should be able to sit up for 8h (or 4h if half time) and able to be overstimulated if needed. Also, If you are able to do 8h upright at your place uninterrupted, you have to add the taxing of people and over stimulation to that. So u have to be able to do basics things in the house before you can attempt to work and be vertical and walk without PEM. Then you have to add to that EVERYDAY from Mon - Fri.
But at the same time, I have hope on this drug, Is like even though I am having all these side effects, I noticed I can do much more. Is hard to explain but if I can live and I mean live in the sense of the word living, no like level 4 and down of cfs live style, I could take pain and been sick. Like I can keep moving and survive this even if I don't get cured.
Work, I have a lot of people ask me when to go back to work, is it worth it, how you do it. Let me tell you DON'T, UNLESS YOU CAN WALK a mile and stand for at least a few hours with no PEM.
I don't work in the same sense that others do. I have a recliner at my office, I do not require to move much (at the moment) and I am horizontal most of the time, Only stand to go to restroom, and no much people interaction either. I pack breakfast and lunch to avoid movements. I go to my car and rest for lunch and breaks (now that is cold it has been even harder, because I have to skip my mid day rest). If I would be any regular Job I would not stand a chance and I am at a level 6 to 7.
So here is how I calculated this, I work in a big place. Bathroom is a walk for a CFS person, Going to get to the cafeteria is another trip. Not counting walking to meetings and just interaction with people in general, we get overstimulated, we don't get to say in the middle of a meeting "well you are all overstimulating me so I am going to go to rest now ( I tried!)" So you should be able to sit up for 8h (or 4h if half time) and able to be overstimulated if needed. Also, If you are able to do 8h upright at your place uninterrupted, you have to add the taxing of people and over stimulation to that. So u have to be able to do basics things in the house before you can attempt to work and be vertical and walk without PEM. Then you have to add to that EVERYDAY from Mon - Fri.
