How to "normalize"days?

[pennstater]

9.5 years from diagnosis, at least 22 years into disease, and 1.75 years "early retired".

I had my psychiatrist appointment yesterday. I told him my biggest challenge is that I still haven't figured out how to "manage" my days. On days I feel good, I always over do it, then need to recover from my good days. So days I feel good, I get the high from accomplishing things, and days that I recover, I feel low sometimes from not doing anything.

So he asked me what I was going to do differently to break the cycle? Hmmm...good question.

I had a few ideas, such as setting my alarm after 2 hours and then stopping. If 2 hours for a week goes OK, then try 2.25 hours the next week, until I figure out what seems to be a good balance before crossing over.

I was curious how other people have managed to figure this out. I know it is not hard and fast and some days or periods, no activity is the only answer anyway. I know I always listen to my body. But on the good days when it isn't sending the signals, what to do?

Interesting side note. When he asked what I would do to relax after my 2 hours, a lot of things I came up with to still get things done, he pointed out still required mental exertion (sitting cleaning out junk drawer, or photos, etc...), and since I get more fatigued on cognitive efforts, need to rethink that approach. That may take more effort then reading, writing in journal, etc...

Any thoughts?

[heliotrope]

I still overdo on a regular basis, but I'm gradually realizing I have a 3-4 "on" limit. That means work or physical activity. A family member has started reminding me to block it out on my calendar since my cell phone sends reminders - followed a rest period. For me, self-directed work isn't an issue, so I'll often take my laptop to bed. If I rest for an hour, I can switch to a chair - but that's it for active periods for the day.
It's definitely a learning curve since my instinct is to jamb everything in - but I'm a much healthier and happier person if I don't.

[MSW1963]

pennstater, wish I had something positive to contribute, but I'm in the 'do what I can, as long as I can, when I can' camp when it comes to 'managing' fatigue.

I've been struggling with the same issues but honestly there just doesn't appear to be any rhyme or reason as far as I'm concerned, when it comes to those days when I've done little or nothing and I'm floored with fatigue anyway. Far too many of those long, empty days that sometimes seem to on without end.

When I have a good day, I just steel myself for a long active day and savor the satisfaction that physical activity brings.

I look forward to following your progress and what you figure out for inspiration.

[jreagan70]

When he asked what I would do to relax after my 2 hours, a lot of things I came up with to still get things done, he pointed out still required mental exertion (sitting cleaning out junk drawer, or photos, etc...), and since I get more fatigued on cognitive efforts, need to rethink that approach. That may take more effort then reading, writing in journal, etc... Any thoughts?

Meditation. Empty your mind regularly. Reducing your thinking will reduce your cognitive fatigue.

You'll have to work up to it. If you just sit down the first time and try to be quiet for a whole 15 minutes, your mind will be chattering like a monkey and you'll think it's too hard and give up before you even get started. Start with a minute three times a day. Then build up to 2 minutes. Then 3, then 4. When you can meditate for 10 minutes, you can decide how many times a day you'd like to do it. Twice is good.

Other than sleep, and better in some ways, meditation is the only way to rest your mind and give a break to the cognitive fatigue.

[Mamabug]

I have simply learned to listen to my body. I've probably always tended to be a bit of a diva, in the sense that I pamper myself a little bit. So, choosing not to push myself beyond what is "health-ful" (is that a word?) for me comes somewhat naturally.

But, the way that I tend to look at it is, I don't feel guilty for taking my Copaxone, and so I also give myself permission not to over-do.

[msgijo]

Meditation. Empty your mind regularly. Reducing your thinking will reduce your cognitive fatigue.

You'll have to work up to it. If you just sit down the first time and try to be quiet for a whole 15 minutes, your mind will be chattering like a monkey and you'll think it's too hard and give up before you even get started. Start with a minute three times a day. Then build up to 2 minutes. Then 3, then 4. When you can meditate for 10 minutes, you can decide how many times a day you'd like to do it. Twice is good.

Other than sleep, and better in some ways, meditation is the only way to rest your mind and give a break to the cognitive fatigue.

pennstater - Like you I always feel the need to be doing something 'productive', and it IS hard to just sit and do nothing (meditation).

i have feeders for wild birds, humming birds and squirrel feeders set up around my yard. Just sitting and watching them is a great way for me to 'meditate'. The squirrels are rather amusing to watch. And the hummingbirds are actually aggressive about who eats out of which feeder (they all have the same thing in them ).

For me that was the way that I learned to let my mind just be still. I find that setting time limits doesn't work for me because I always want to finish whatever I am working on, and that always ends up being so much more involved than I had thought it would be.

Good luck.

[pennstater]

heliotrope - thanks. Exactly what my doc said, much happier and healthier if I learn to not jam everything in. I am glad you learned how to balance this, as it means that I can too with patience.

MSW1963 - I think you hit the mark. I have had a lot of long no energy days, not just from MS, but multiple bouts of bronchitis. I don't want to jynx myself, but seem to have finally "recovered" from last MS relapse and the respiratory infections. So I want to jam everything in while I can. I feel like I am in a good stretch. I hate that you have to experience so many of the long days.

jreagan70 - thanks for the reminder. I have used both mindfulness and meditation and both do help. For the most part, I am a relaxed person. I am not anxious about the things I want to do, just excited to have the energy to get something done.

mamabug - so funny, never would have guessed you had a diva side. I hope you had a great mother's day and the diva in you was pampered. I am OK listening to my body, but on days my body isn't speaking to me, I keep going and pay later. But I do like your thought about not feeling guilty for not overdoing it, since no guilt for taking copaxone. on the days I don't get body signals, I realize now that I do feel guilt if I stop. I feel that since I don't have the warning bells, I should keep going. So I obviously have to work on that.

msgigo - nature is awesome. We also have multiple feeders and live in an area where we get a variety of birds. our neighbor has chickens. while a philly suburb, we also have a farm park near us and some woods behind us. currently, we have a red fox family that a had a litter of 5 cubs. they are fun to watch play. we also get deer visiting. but we do watch the birds. we have a few nests, so we keep an eye out on them. and a little more time, the butterfly bushes will be full. we are blessed to have an eagle that occasionally soars by.

Thanks again for all the responses. I am in my Tysabri slump ( infusion this Thursday) and it feels like July here, so no issue living a slower life this week! Next week, we will see how things are.

[Mamabug]

...
mamabug - so funny, never would have guessed you had a diva side. I hope you had a great mother's day and the diva in you was pampered. I am OK listening to my body, but on days my body isn't speaking to me, I keep going and pay later. But I do like your thought about not feeling guilty for not overdoing it, since no guilt for taking copaxone. on the days I don't get body signals, I realize now that I do feel guilt if I stop. I feel that since I don't have the warning bells, I should keep going. So I obviously have to work on that.

...

lol. Yup; I definitely have a diva side.