It Just Doesn't Make Any Sense...

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Category:

People & Blogs

Tags:

• me/cfs
• myalgic encephalomyelitis
• CFS
• chronic fatigue syndrome
• neurological illness
• remission
• movement disorder

[2ladybughippies]

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

[kaazoom]

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.

[Carrigon]

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.

[kaazoom]

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.

[maybourne2010]

functional

[maybourne2010]

functional

[neelubird]

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.

[Dawny789]

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!

[deadgirldreaming]

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.

[semisonicTV]

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.

[Carrigon]

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.