Relief - how temporary ?

i wasn’t sure where to put this. Please move it if necessary.

I’m sure this happens to others as well. After being pretty much crashed and useless for 2-3 weeks, I am having a good week. I started this project to give me something to do while being stuck at home and it made my adrenalin high.

I’ve been running on adrenalin for about 4-5 days now. I don’t sleep as much at night, I don’t sleep during the day (most of the time I sleep once or twice per day) and I do a lot more than I usually do with less symptoms.

Of course my mind is thinking « what if this is it »? What if I’m in remission? Wouldn't that be great ? ». And there I am almost trying to pick a mew career and go back to work... After being pretty much homebound for many years. I just can’t stop doing that. Maybe it’s a way of surviving.

Those tricks of the mind are what I find so hard with this illness. It is what keeps me depressed also. Having hope, then having it taken away from you. And back to misery.

Anyways, let’s be optimistic. Maybe I’ll be the new remission case everyone is talking about on social media !

 

Do you attribute this to IVIG?

 

I’ve never had IVIG. I think it’s the adrenalin pumping. Or else I’m really better.

 

I used to get this now and then when i was moderate, its a false high.
I would suggest very carefully staying in your limits but getting things done that you can't do assuming it will fall again. If it doesn't then you have not lost much but if it does hopefully you extended your functioning a while longer and you got some stuff you otherwise could not do done.
Its not easy to do this, when you have energy you just want to enjoy it fully.

 

Sounds familiar! About two days in I will start planning my gradual return to work and fitness, should it miraculously last. Last year I cleaned out the shed and drove all the trash to the filling by myself. The year before that I built a huge custom espalier for my balcony. Things that would normally be impossible for me, even in the summer when I'm slightly better.

Very helpful to get some things done, but it doesn't last and I'm pretty sure I'm an idiot for taking so much risk and pushing so hard. Hard not to, it's so real while it's happening. I think the adrenaline makes me a little crazy too, making me throw all caution down the drain.

 

I know what you mean here
In my case it was no remission but it was like taking a stimulant while overtired, i felt better then expected and wanted to believe i was doing better.

 

I don't know if relevant, brain fog at present so not really understood the above posts, but I find when I am in a period of improving, undertaking physical activity can result in a real endorphin high.

The most extreme was some years ago in the Falklands when I ended up running up a mountain (fortunately in the Falklands the 'mountains' are not that high). I definitely was not acting rationally as running up crags and scree by myself could have left me with a broken leg and at risk of exposure. Obviously it was followed the the inevitable ME crash.

The longer a period of inactivity the less activity it takes to trigger the endorphin high. Now I know when things are going well, to watch out for the high and not to let it lead to doing too much or acting irrationally.

 

Ha Ha Ha ! You made me laugh, it sound so much like me !

 

@Peter Trewhitt that’s a very interesting theory ! And it might explain the kind of high I am on at the moment. Endorphins and adrenalin together, a dangerous mix for us.

This morning I’m feeling exhausted, so maybe it’s starting to wear out.

 

I get this as well, I always crash back down again but there’s always that little voice of hope every time I have a few days of feeling not so awful.

 

I had the worst crash for years recently following a 5 month period of difficult times (bereavement, redundancy and big home insurance claim meaning we lost our kitchen and bathrooms for months).

I remember thinking ...I must be getting the hang of this pacing thing, I haven’t suffered more than normal ..and with all this going on. It’s only when we got back to normal that the payback came and boy did it hit hard. I’ve still not really got back to normal since March.

I have no idea whether this is Adrenalin or some other way of deferring payback. It seems odd that it happened after the bad things had resolved though?

 

I also can't necessarily tell in the moment, it's only when I've improved and can look back that I can see how much function was lost.

During it's just a matter of frustration, but things don't work well enough to know what exactly is frustrating other than moment by moment.

Before I got diagnosed it wasn't uncommon for me to realise that the pain I was sick of wasn't just something that was happening now, that it had been more or less unrelenting for weeks, at least, but until that realisation I was only aware that I was in pain 'now'.

Same happens for everything else, I'm unable to sort out food 'now', I can't get shopping 'now, the fridge and cupboards are empty 'now'.

Cognitive impairment has an upside, it keeps me from realising just how 'bad' things are and how long this has been going on for.

If it didn't then there is a slight possibility I might suffer from depression lol

 

It does seem odd, but on the other hand it probably is a defense mechanism. The same that makes people do incredible stuff when their life depends on it.

I guess my cognitive impairment isn’t bad enough because depression hits me!

 

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