Need help trying to find my limits and daily routine

[Nightingale]

Hello lovely forum people!

I have recently been using activity logs and record keeping to try and plan my days better, find my limits and find when my peak energy levels are. I have had ME for four years, but it has been a long while since I tried any sort of record keeping. I'm also using experimentation to try to find what my body can tolerate and what the best sort of daily routine is. But I need some help!

I would really appreciate if anyone could give any sort of advice on this manner, or answer any or all of the following questions:

-How do you plan your day?
-How did you find your limits?
-Do you find TV restful?
-What are your warning signs you're overdoing it?

I plan to take your suggestions and try to experiment with them until I find a routine that works well for me. Thank you in advance for all your help. You guys have helped me a lot in the past, so I'm looking forward to your thoughts!

 

[keepswimming]

Hi @Nightingale thanks for posting this. I have been ill for a year now, I am still in the process of figuring this out. So I will be interested to hear other people's responses. I do feel like I'm starting to find a level I'm coping with better. Like you I've been recording my health (I've used an app called Health Log which I've found useful) which has been helpful to look for patterns in my symptoms.

-How do you plan your day?

Personally I'm best in the morning, so where possible I do the days activity in the morning (with rest breaks included) and then go to bed in the afternoon. In the late afternoon/evening I potter around, but nothing high energy if I can help it.

With my severity level, I find I can schedule one main activity a day. I've tried doing something else late afternoon after I've had a rest, but generally I find this doesn't work well. One factor I find is, if I know I have another activity later in the day, I struggle to properly rest and relax in the middle. I find it better to go to bed in the afternoon knowing I don't have anything else major to do that day, it means I can switch off properly.

How did you find your limits?

Mostly learning the hard way 😅 when I first got ill I dropped a lot of activity but I still clung onto doing too much. Gradually I've had to drop off more things as I've realised they're too much for me, it's an emotional process.

Learning about pacing has been helpful too, having preemptive rests, and trying to adjust the effort I put into the activities I'm doing. I always used to be a person who put 100% into everything. But if I can I try to hold something back now - I'm learning if I use less energy I can keep going for longer.

Do you find TV restful

Partly. I find it helpful to wind down, but I also need proper rest with my eyes shut. Sometimes after I've been doing something it's hard to immediately have meaningful rest. I find watching TV a good strategy to calm down, and then once I'm calmer I can close my eyes and rest properly.

What are your warning signs you're overdoing it?

My first sign is often emotion. I start getting tearful and upset. Initially I didn't recognise this as a PEM sign and just thought I was being hysterical! But now I realise it usually means I've done too much.

On the other hand, feeling like I've got too much energy can actually be a sign I've pushed too hard and started pumping adrenaline, which is not a good thing. When I say too much energy I mean I go from feeling tired to feeling "wired" and "buzzing". I start talking too fast and going at too fast a pace, and then even when I need to rest, I can't switch off because the adrenaline is pumping. When I first got ill I was doing this all the time, because I didn't recognise what was happening, and then paying with PEM crashes! Now I try to avoid this happening if I possibly can, running on adrenaline just gets followed up with a crash.

 

[jpcv]

I don´t plan my day, I follow my routine as strictly as I can. I try to avoid to do more than one extra thing a day, like going to the supermarket and to a medical appointment.
I discovered my limits by crossing them and paying a heavy price. From this experience I built my routine.
I do not like TV
Warning signs: pain and shortness of breath

 

[Loomcgoo]

I have found I can be a bit active in the morning and with 3-4 hours rest have another slightly active period in the afternoon. I'm still quite limited but pacing really helps.

TV can help distract and pass time, but it can over stimulate too. I use listening to radio drama, rain or fire sounds when I feel I need something low level. On another thread folk recommended slow tv, Bob Ross etc. I use meditation too. Nothing is doing something for our health. It's such a medicine and really hard to do.

Thank you for this thread because its helping me to focus on the one thing that really helps. That, I find really helps, we're all different. Helping myself emotionally to do nothing and to have my long periods of nothing will help improve my recovery. The problem is with so many things (chores, paperwork etc) outstanding, I want to get busy. Being busy also keeps the terror of being ill as well as the grief and pain of missing from my life out of my conscious mind.

Feeling purposeful, having a sense of mastery helps calm my system, yet that very system is screaming out for complete down time. I want to exist, I want to have some sort of future, I want hope. "Nothing" as medicinal as it is, can feel like suffocation. This thread is helping me to understand why it is ssssooooo difficult to do.

Finding new, more comfortable ways to do nothing will help. Gratitude practice helps soothe and calm. I am lucky I have two periods in the day where I am a bit active, this improvement is making it harder for me to use nothing. "Nothing" feels like a punishment and I go to a really dark place, yet it is why I've seen some progress.

I try to go to places in my mind that help. I imagine making a table or I'm creating a toy railway cafe in a garden. Sometimes I use breathing, other times I just try to feel the socks on my feet, the hair on my eyebrow etc- it's like it's a game. Other times i actually force myself to stay put and be as still as possible for 2 hours. I call that "forced rest".

Sometimes using mantras helps, such as I like here I get better in lots of different unseen ways. It's like the nothingness in winter - it's the unseen growth. The winter gives way to the spring, to growth and blooms. Nothingness is a much needed and often underrated medicine, that is emotionally very difficult to do.

Sorry my answer perhaps hasn't helped. To answer your question on limits. Don't always be at the very edge of your limits, only do 75% of what you can do and increase it by 1% a week - if you can. It is so tempting to do activity, or have a need to be distracted which then goes into over-stimulation. Cultivating stillness and nothingness is huge for healing in my experience. Because we have so little I think theres a fear in me I'm being swallowed up by nothingness because I'm missing so much from me, it's hard to move towards nothingness and stillness without an existential crisis.

A question for you might help. Answer out loud, without thinking too much, what would 75% of your activity level look like today?

Be careful you dont answer what you would like 75% of your activity level to look like. You can answer that first and then answer what you really think it is.