Having been recently diagnosed, one of the hardest things for me right now is trying to learn to avoid overdoing anything. Once in a while I think, hey it's a good day and I feel decent enough to go outside, let's go to a basketball game...which turns into let's go to dinner and visit friends and so on until I'm literally at the point of collapsing before I make it home, and I become completely bedridden for several days. I keep pushing myself to keep doing things like I was before CFS, even though I know I can't, and I can't seem to convince myself to stop doing that and stop crashing. Does anyone have any advice on how to adjust?
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How do you adjust?
- Thread starter Hikaru
- Start date
I think it's like hitting your thumb with a hammer. Eventually you get around to realizing that you really want to avoid pain and adjust your actions accordingly. How long that takes varies. Maybe make an effort to list the activities that triggers the symptoms, and review them frequently. Maybe even take the list with you and consult it whenever you think about doing some activity. That might sound silly, but it might be effective. Your friends should accept it when you consult a printed list and say: 'No, going to a basketball game will trigger PEM and make me feel really lousy all of tomorrow. I've proven it already.'
The 'I feel better today. I think I'll go do <strenuous activity>.' is something I think we all go through, even when we know better. I still do it sometimes because I decide that going for a long hike or bike ride is worth a day of PEM.
The 'I feel better today. I think I'll go do <strenuous activity>.' is something I think we all go through, even when we know better. I still do it sometimes because I decide that going for a long hike or bike ride is worth a day of PEM.
took about 15 monthes for me, 1st stage = confusion 2nd stage = depression / go a bit insane 3rd stage= try to work around it and keep living normally ( bad advice of doctors puts people on this path, they think they can cure it by determination / exercise etc ) 4th stage = suddenly become a lot worst, lose touch with past life, feel some regrets but also cursed / hopeless 5th stage = somehow come back from that situation to semi normality. After 5th stage 'adjustment' is achieved.
For me I would say the adjustment is a bit like going from the mindset of a 25 year old to a 40 or 50 year old,
but somehow you have to keep hold of your personality and interests at the same time. If your brain doesn't permafog etc / have constant light sensitivity / migraine problems etc like some people then its easier because you can remodel yourself as an academic type of person ( though we suffer in terms of memory reliability / brain speed ).
If you catch the correct diagnosis early and learn what to do you might be able to avoid the change which causes people not to be able to walk properly anymore, to start with I could still walk miles but now I couldn't even make it 1km, one time I had no choice but to walk 500m and it took about 20 minutes. Some people seem to just spontaneously get worse though or start off severe right from the beginning ( e.g. jenn brea ), so its kind of random,
some think there may be different 'versions' of the disease. So in that sense it can be highly unpredictable, which is one of the harder things to deal with psychologically.
For me I would say the adjustment is a bit like going from the mindset of a 25 year old to a 40 or 50 year old,
but somehow you have to keep hold of your personality and interests at the same time. If your brain doesn't permafog etc / have constant light sensitivity / migraine problems etc like some people then its easier because you can remodel yourself as an academic type of person ( though we suffer in terms of memory reliability / brain speed ).
If you catch the correct diagnosis early and learn what to do you might be able to avoid the change which causes people not to be able to walk properly anymore, to start with I could still walk miles but now I couldn't even make it 1km, one time I had no choice but to walk 500m and it took about 20 minutes. Some people seem to just spontaneously get worse though or start off severe right from the beginning ( e.g. jenn brea ), so its kind of random,
some think there may be different 'versions' of the disease. So in that sense it can be highly unpredictable, which is one of the harder things to deal with psychologically.
E.man
Senior Member
- Messages
- 196
- Location
- Bega Valley , Australia
If you pay attention to your body you will learn the subtle signs.
It's a tricky practice but try to stop before you think you should.
It might feel like you're being slack but you are seriously ill and need to care for yourself.
It's a tricky practice but try to stop before you think you should.
It might feel like you're being slack but you are seriously ill and need to care for yourself.
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mattie
Senior Member
- Messages
- 363
In the beginning on "good" days if I was more active I felt less symptoms.
But always crashing afterwards.
In hindsight this has made everything a lot worse. I am now 100% housebound. Mostly bedbound.
Be careful Hikaru. Avoiding crashes may be a key factor in not developing very severe ME.
Your body can probably handle a lot less than you think or even feel.
If you keep pushing through you will pay the price.
But always crashing afterwards.
In hindsight this has made everything a lot worse. I am now 100% housebound. Mostly bedbound.
Be careful Hikaru. Avoiding crashes may be a key factor in not developing very severe ME.
Your body can probably handle a lot less than you think or even feel.
If you keep pushing through you will pay the price.
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notmyself
Senior Member
- Messages
- 364
what exactly this ''crashing'' means? i see many people using this term..does it mean to be unable to leave bed/house even if you want?! like the body simply doesn t have energy no matter how much you try? i never experience the inability to go for a walk if i push it..it makes me wonder if i ever trully crashed?!
mattie
Senior Member
- Messages
- 363
?? In your post you gave the perfect definition of a crash:
That is totally contradictory?!
Becoming bedridden for days after exertion is crashing.
This should be avoided at all times as it will increase your chances of deteriorating.
But strangely enough in your last reply you state:
That is totally contradictory?!
Becoming bedridden for days after exertion is crashing.
This should be avoided at all times as it will increase your chances of deteriorating.
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You were replying to someone else, I think things got a bit mixed up. You're right, and I appreciate all the advice in this thread. I've been trying to be more self aware of how tired I feel and remembering that I'm allowed to say no to doing things that are too much for me - I think a part of it stems from the desire to be social and make friends in a new country, which has been difficult for me thus far, so even after I developed CFS I pretty much jump at the chance to do anything with other people.
notmyself
Senior Member
- Messages
- 364
i didin t write the first mesagge..that was hikaru who open this thread..if that is the definition of crashing i'm happy that i never experience it yet...another reason to feed my never ending doubt regarding if i have ME or not..
Exortion cause me major insomnia muscle twitching and ,stiff neck and back and minor trembling and rarelly flu like symptoms, it doesn t affect my energy levels the following days, on the good side it increase my mood, temporary boost in energy and lessen muscle weakness, it also make my standing heart rate better..if i rest to much my heart rate will shoot above 100 just by standing still ,if am active it will be around 85-95..it's a love and hate situation for me..and it's been like this since the begining...
mattie
Senior Member
- Messages
- 363
Totally sorry.
Mixing things up.
Brain fog.
Mixing things up.
Brain fog.
- Messages
- 53
Hikaru, I completely sympathize. And like others have said, do NOT push through. My recent experience proved that pushing can actually damage what progress you've made. So on those days where you get outside, celebrate getting outside! Find a snowball, or a pretty sign you hadn't seen before, or birds flying--something positive. Then go back inside, AS A REWARD for not pushing. See how you feel.
As 6666 suggested, keeping a journal helps. Because I'm lousy at journaling, in my planner, I've developed codes--every X is a 2 on the pain scale, so when I came back from my trip and totally crashed, that first five days was filled with at least 5 full Xs. Then it slowed to 4, then three. I felt so proud today--I got the dishwasher unloaded and loaded. Then went to bed with my beloved heating pad.
Best of luck!
Mel9
Senior Member
- Messages
- 995
- Location
- NSW Australia
Yes, with your heart rates too. You can learn to keep your heart rate at a safe level to avoid PEM
I agree with the journal. I'v kept a journal of food/activity/symptoms since this started, and it's been very useful for discovering things that affect me, and verifying hypotheses. Memory just doesn't work for this sort of thing, since it's so easy to forget or misremember.