Two years with these diseases. I went on my first girl overnight at a cabin in the woods. I did sedate activities. I read, played games, and read under a shady pine as they hiked. I did some help with clean-up with meals. Though sedate, there was nonstop engagement in talking and sedate activities. When I got home, I had a headache, dizzy on standing, and am literally exhausted. Second day and still have dizziness and exhaustion. Was it the constant engagement and no mind and body rest intervals that slayed me??
Anyone with similar experience or suggestions? Still learning how to deal after 2 years.
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Dream21
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But however enjoyable it might have been no doubt it was stressful- even though you didn’t think so at the time. You were out of your normal environment- planning for it beforehand, and maybe stressing a little, then surrounded by others, chatting and generally interacting all of the time (apart from them hiking, you reading).
A few days R&R and you’ll be back to your usual self. Sometimes we just have to put ourselves out there, enjoy it at the time, but appreciate we’ll need recovery time afterwards!
Just accept that’s what it’s like at the moment, and go with the flow! It is what it is!
However pleasant spending time with companions is - it is strenuous! And you were also almost certainly physically doing more and having longer days than when you are home.
I find even having visitors for a few days is tiring - and no, it isn't due to me rushing around behind them! We often go out to eat and OH does the cleaning beforehand!
I find when l meet with friends l have to be the old ‘Me’ the life & soul of the party, the raconteur with all the funny stories & anecdotes but it’s draining & takes it out of me but l’d rather that than be home & miserable!
I stopped entertaining along time ago as it was too stressful, we eat out now & it’s easier all round!
I have yet to learn when we go away with friends that I do not need to make an appearance at Breakfast, at home l have breakfast in bed & emerge around 10am so my new rule is when I’m away, it’s breakfast in bed, just the same as at home!
I’m pleased to hear you went away & you can reflect now on how it could be easier for you next time.
Hi, have you recovered from your weekend now? I think you’ll find that it’s made you realise what you can & can’t do as the saying goes Experience is a Bitter Teacher.
As you may know, we’ve moved & all my friends expect me to travel back to see them & my idea was to fit them in when returning for other reasons, l have a few hospital appointments but l realise having been back twice already l simply cannot fit everything in, so l’ll do it on a different day, even if l take the train, it will however make it an expensive cup of coffee, but they are my friends & l wish to remain in contact.
So we need to try & find a balance that’ll work for us.
I agree with what's been said so far, it doesn't matter how sedate the activities were they were too much with this dreaded illness - I hope it was worth it though. Just chatting over coffee with friends is tiring and you had a sleepover too! - no surprise how you feel really, perhaps better planning next time including rest as part of it - difficult I know but if it means you can go out with friends...
I find being “ on” all the time in a social group really takes it out of me too. I can’t really cope with multiple conversations or follow them. I need to creep away and be quiet. It’s stress and our stress hormone stays at the same level even if a bear’s coming, we just get sick instead. At least you didn’t have bears did you? 🐻
Yes l prefer One to One rather than a big group, l have 2 Friends & we call ourselves the 3M’s (The 3 Musketeer’s) but they truly understand & have been a huge support, l had lunch with them yesterday!
Sounds like a good trip and you’re coming out of it with a net positive but it it is draining. I find it isn’t the physical side so much as the social bit. Holding a conversation, stringing sentences together without losing my way, is the hard bit. It is like looking at moving faces takes all my concentration which is unheard of because I was such a people person and was sociable as was my job. I find it uplifting seeing a friend but I need a lie down. Crowds are a no no.
Ditto from me too. I have up to now been patting myself on the back for my "easy" ride through this. Now at 10mg Pred and I'm feeling the difference if I do too much (which I do/did, fueled by the Pred!). Will be sticking at 10mg for a while. Oh the lessons this illness teaches us.......
Me PMR/?GCA . Commenced Nov 2017 Diag Jan 2018. Pred 30mg now 10mg
hello, most has been said, so I will just add some reassurance that feeling exhusted seems pretty normal at this stage of PMR.
For my first couple of years with PMR, , I expected I should be able to jump in and out of activities that had previously been easy peasy...
finally I began to realize that when I borrowed "'extra spoons "to have a holiday...that I would have to 'pay the piper', meaning taking it easy for a couple days post holiday.
that simple equation has helped me accept some of the things I cant change...and get on with life.
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