On the days when I'm physically a lot stronger, alert, able to walk much more etc I know I'm constipated. Sounds bizarre I know, but when my digestion returns to normal, I start to feel horribly shattered and messed up again. It shouldn't make sense, but I've seen the correlation enough times to know the drill now.
This illness never makes any sense. Like a switch inside your head turning things on and off all the time. I even have more energy when I have a cold sometimes, now that doesn't make any sense to me!
Know the feeling Paul - I managed to go for a couple of walks recently - one of them I felt quite good - by the 2nd day after I was so disgustingly unwell I ended up in the dark room again.
Paul so glad to see another video from you. Just wish it would have been happier news.
I totally understand what you are saying. I lay here today with the same dilemma. Great day yesterday did somethings and even tho I paced myself,today is horrible.
This crappy disease is a rollercoaster ride,but not the fun kind.
Sorry to hear you are having a bad time too. The way this illness can change can be really confusing. it is rare I get good days, but I make the most of them when I do. I have tried holding back a bit during these good periods, but it never helps, the crash is just as severe. So I make the most of the time. The thing I find difficult is I start to think I am getting better. I should know from previous experience that it is unlikely, but I just can't help myself.
I pray so you have plenty of good days. You bring strength to me, with your faith and own strength. Its a real testiment to you Paul, and the strength you give to many other people. My prayers are with you!
I call those the cruelest days. When you get an odd day where you suddenly feel so much better and, it's almost like someone is saying, this is what you would be like if you were almost well. But then they laugh at you and say, guess what, you won't be. And then the next day you're just as sick as ever. We all seem to get that once in awhile. And it's cruel and sad. And you wish every day could be that good and it never is.
It is a dilemma. It is good to feel well and be able to do normal things. I am glad of these very rare days. but then it is cruel as I start to make plans as if everything is going to be ok, only to find my hopes dashed.
From what others have said to me, this can be the pattern ME takes. That helps because at least it isn't just me.
Ya remember it's just in our heads! lol Ya Iam limping around today and my legs have been fine for awhile, then wham Iam limping and having aches in them.????
Actually. Now I think about it, there was a D-E-A-D goldfish in the pond. That must be the reason...Hang on I can feel my mind converting those repressed memories into body dysfunction even as I am writing.
& on days like those they say to live inside your envelope, what a joke when u feel like crap most of time, so on rare occasions u feel pretty good of course u over do! Then I flare afterwards. Those days r such blessings!
I've tried living inside my 'envelop' on these very, very rare occasions too. I still end up in just as bad. Like you I'd rather enjoy being able to do things I can't usually do. At least I have something to show for it. I just don't understand how I can go from struggling to walk because the signals don't seem to get through to my legs, to walking normally etc, then back to not being able to do it again. It just makes no sense.
functional
maybourne2010 1 year ago
functional
maybourne2010 1 year ago
On the days when I'm physically a lot stronger, alert, able to walk much more etc I know I'm constipated. Sounds bizarre I know, but when my digestion returns to normal, I start to feel horribly shattered and messed up again. It shouldn't make sense, but I've seen the correlation enough times to know the drill now.
neelubird 1 year ago
This illness never makes any sense. Like a switch inside your head turning things on and off all the time. I even have more energy when I have a cold sometimes, now that doesn't make any sense to me!
Dawny789 1 year ago
Know the feeling Paul - I managed to go for a couple of walks recently - one of them I felt quite good - by the 2nd day after I was so disgustingly unwell I ended up in the dark room again.
It's a enough to drive ya mad.
deadgirldreaming 1 year ago
Paul so glad to see another video from you. Just wish it would have been happier news.
I totally understand what you are saying. I lay here today with the same dilemma. Great day yesterday did somethings and even tho I paced myself,today is horrible.
This crappy disease is a rollercoaster ride,but not the fun kind.
take care
2ladybughippies 1 year ago
Sorry to hear you are having a bad time too. The way this illness can change can be really confusing. it is rare I get good days, but I make the most of them when I do. I have tried holding back a bit during these good periods, but it never helps, the crash is just as severe. So I make the most of the time. The thing I find difficult is I start to think I am getting better. I should know from previous experience that it is unlikely, but I just can't help myself.
kaazoom 1 year ago
Paul,
I pray so you have plenty of good days. You bring strength to me, with your faith and own strength. Its a real testiment to you Paul, and the strength you give to many other people. My prayers are with you!
Mark.
semisonicTV 1 year ago
I call those the cruelest days. When you get an odd day where you suddenly feel so much better and, it's almost like someone is saying, this is what you would be like if you were almost well. But then they laugh at you and say, guess what, you won't be. And then the next day you're just as sick as ever. We all seem to get that once in awhile. And it's cruel and sad. And you wish every day could be that good and it never is.
Carrigon 1 year ago
It is a dilemma. It is good to feel well and be able to do normal things. I am glad of these very rare days. but then it is cruel as I start to make plans as if everything is going to be ok, only to find my hopes dashed.
From what others have said to me, this can be the pattern ME takes. That helps because at least it isn't just me.
kaazoom 1 year ago
Does anything about this illness make sense?
ironbith 1 year ago
There u have it! Glad we could solve this! lol It is frustrating, I know. Iam seriuosly walking like a gimp today.
ironbith 1 year ago
Ya remember it's just in our heads! lol Ya Iam limping around today and my legs have been fine for awhile, then wham Iam limping and having aches in them.????
ironbith 1 year ago
I did see a goldfish in my daughter's garden pond yesterday. Perhaps that's the cause - it reminded me of my poor long lost goldfish Eustace!
kaazoom 1 year ago
Actually. Now I think about it, there was a D-E-A-D goldfish in the pond. That must be the reason...Hang on I can feel my mind converting those repressed memories into body dysfunction even as I am writing.
kaazoom 1 year ago
& on days like those they say to live inside your envelope, what a joke when u feel like crap most of time, so on rare occasions u feel pretty good of course u over do! Then I flare afterwards. Those days r such blessings!
ironbith 1 year ago
I've tried living inside my 'envelop' on these very, very rare occasions too. I still end up in just as bad. Like you I'd rather enjoy being able to do things I can't usually do. At least I have something to show for it. I just don't understand how I can go from struggling to walk because the signals don't seem to get through to my legs, to walking normally etc, then back to not being able to do it again. It just makes no sense.
kaazoom 1 year ago
Sometimes I think the disease has a mind of its own. It hides in the brain and spinal column and attacks at will.
You are not alone. There are millions of us in the world now.
Carrigon 1 year ago