The relapse poll

[Robin]

How long is your longest relapse?

I'm just curious. I've been in a bad crash for nine months.

 

[MEKoan]

This is difficult to answer without defining "relapse" and "crash" very specifically.

If relapse is a return to a level of illness which is generally incapacitating, but not relentless unbroken misery, following a period of time where one was in remission -loosely defined as being well more often than one is ill- then my answer would be >10 years. But, if relapse is defined as a state of relentless, unbroken misery during which one cannot for a moment forget one's symptoms then it would be much shorter.

 

[Robin]

This is difficult to answer without defining "relapse" and "crash" very specifically.

If relapse is a return to a level of illness which is generally incapacitating, but not relentless unbroken misery, following a period of time where one was in remission -loosely defined as being well more often than one is ill- then my answer would be >10 years. But, if relapse is defined as a state of relentless, unbroken misery during which one cannot for a moment forget one's symptoms then it would be much shorter.

hmmm, good question. I guess I would mean it to be an exacerbation of symptoms to the extent that it impacts your functioning, so that you're below your normal ME/CFS baseline. (The crash could be of any severity.) Does that make sense? I guess for you it would mean the latter.

And, I realize I inadvertantly made the poll "public" (my laptop mouse/fingerpad double clicks randomly sometimes so I must have checked a box, wrongly. I'll ask an admin/mod to fix it!)

 

[Wonko]

it would need to be further defined - my longest period where I was essentially bedbound was around 5-6 months - but that was followed by about 2 years of stepped but generally increasing functionality - only about the last 6 months of that was above what i would currently consider my "baseline" - however that 2 years was then followed by 6 months of almost total remission - I got complacent (rashly thought I could have a life again), crashed (tho not as bad) and since then have never recovered that level of functionaility - although I can come close for a few days at a time it never lasts

 

[Robin]

it would need to be further defined -

You bring up some good points, wonko. Perhaps baseline is a poor term because it overlooks the fact that, for many, symptom severity is not static.

I'll amend it to: crash/relapse = exacerbation of symptoms to extent that it reduces your ability to function to the level you had been experiencing prior, excluding your initial onset.

Wow, that's awesome that you have some good days AND a remission! I hope you experience another!

ETA: Here's another way to phrase it (there's some confusion about what I'm asking) --

what is your longest bout of PEM (post exertional malaise or morbidity)?

 

[starryeyes]

10 years of increasingly getting worse.

 

[wciarci]

Three months, in bed during the summer. Summer is always the worst time of year for me.

Wendy