Help with establishing energy envelope,please

[roxi]

Hi Everyone,

Firstly, Thank you to everyone that answered in my previous posts. So kind to take from your time to get back to me.

Secondly, I am trying to establish what my energy envelope is and I am confused in relation to a few things.

It is said: dont do this activity if it makes your symptoms severe. What is the definition of severe? Myself ,for example, I am ill all the time, sometimes I feel absolutely terrible,other times I can get up the bed and walk around the house for a bit, but I still feel very ill. But the fact that I can get up the bed and even go to the supermarket for a 5 minute shop, it doesnt mean that I dont feel terrible.
So my point is, the fact that I can do something, like in the example above, doesnt mean that I should do it,given that it keeps me into a continuous crash.

I am having difficulty choosing what place on the Rating Scale I should put myself onto. At rating 20 it states:able to leave house once or twice a week.Moderate to severe symptoms, Able to concentrate for up to 1 hour a day. Yes, i am able to leave the house, but i feel awful while doing it and after doing it,so does this mean that I can or cant in fact go out of the house?

I think you understand what I mean and why i struggle to get it.


So how do I establish my base line? Do I just lay in bed for 3 days and do nothing except the very basics and than see how i feel before starting to add activities one by one?




If someone could help me understand the above points, that would be the biggest help I could get.Thank you!

 

[dejurgen]

Hi Roxi,

This is indeed not an easy one. I have long struggled with it myself. This is the best I did find so far:

I try to make each day follow a similar routine. I do find it easier to estimate how much energy I spend each day if I do similar activities in similar amounts. That way I slowly learned that some seemingly innocent activities ate far more energy then I ever anticipated. Routine activities also often cost a bit less energy to do I feel. It's not always easy to do so because of real life, but you get the point.

Then I reduced activities gradually until I had very few full blown PEMs left. Let us say less then once every two weeks. It took me a really long time but now I am at a rate of about once a month or less. That is if I manage to not trigger one of my food sensitivities. They all by themselves can cause me a nasty PEM.

Unfortunately even managing energy and food sensitivities will not be enough for plenty of patients to get to that point. Still, I consider that to be my baseline for now.

 

[roxi]

Dear Dejurgen,

Thank you for trying to help me.

I seem to be completelly lost as to what causes what! Im so fed up, i just want to be normal and be able to speak, stand, walk, like a normal human being. Such basic things... ☹️

I also have food intolerances, but frankly it would get too complicated and overwhelming if i would have to consider those too. Food, clouds, draft, heat, cold, sun,smells, effort, stress, upset, colds, etc etc, they are ALL triggers, so how on earth are we meant to figure it out which is which and navigate through life when it transformed into such a complex algorithm.

I forgot to mention GRIEF, my husband died unexpectedly in January and since then im living a second hell in parralel to the ME hell...

I hope you are keeping relatively well in there

 

[Issie]

Grief alone is enough to trigger a huge crash.

All the things you listed can be triggers of Mast Cell Activation Syndrome (MCAS). Have you looked into that?

 

[dejurgen]

I seem to be completelly lost as to what causes what! Im so fed up, i just want to be normal and be able to speak, stand, walk, like a normal human being. Such basic things... ☹️

I also have food intolerances, but frankly it would get too complicated and overwhelming if i would have to consider those too. Food, clouds, draft, heat, cold, sun,smells, effort, stress, upset, colds, etc etc, they are ALL triggers, so how on earth are we meant to figure it out which is which and navigate through life when it transformed into such a complex algorithm.

I forgot to mention GRIEF, my husband died unexpectedly in January and since then im living a second hell in parralel to the ME hell...

I know, This disease can be so overwhelming and confusing. The thing that worked best for me was to try and establish a baseline first. I did so by having a more boring and regular day to day pattern. That does not only include activities but also meals. Not that I ate every day the same meals, but gradually tried to find what meals were giving me a more constant feeling and avoiding the most suspicious food items. With that I mean those who from time to time seemed to give me more of a bad reaction then other foods. It's a hard and tricky thing to do. Still I believe the best way to slay a many headed dragon it to slay it one head at a time.

To put it more practical, I try to first find those little things I can find and change the easiest, even if they don't make a huge impact. It's just important that the effort is lower then the gain. Over time that gave me a bit more confidence and experience to tackle bigger and more difficult issues. I tried to go straight to the hart of the disease before, but that didn't worked out for me.

One thing I failed many times before when still being healthy-ish was to take time to rest and recover enough when having a hard time or disease. I wished I did back then. Grief and mourning indeed weights heavily and allowing yourself time to deal with it and recover from it may be an important goal for now.

 

[Not dead yet!]

Hi Everyone,

Firstly, Thank you to everyone that answered in my previous posts. So kind to take from your time to get back to me.

Secondly, I am trying to establish what my energy envelope is and I am confused in relation to a few things.

It is said: dont do this activity if it makes your symptoms severe. What is the definition of severe? Myself ,for example, I am ill all the time, sometimes I feel absolutely terrible,other times I can get up the bed and walk around the house for a bit, but I still feel very ill. But the fact that I can get up the bed and even go to the supermarket for a 5 minute shop, it doesnt mean that I dont feel terrible.
So my point is, the fact that I can do something, like in the example above, doesnt mean that I should do it,given that it keeps me into a continuous crash.

I am having difficulty choosing what place on the Rating Scale I should put myself onto. At rating 20 it states:able to leave house once or twice a week.Moderate to severe symptoms, Able to concentrate for up to 1 hour a day. Yes, i am able to leave the house, but i feel awful while doing it and after doing it,so does this mean that I can or cant in fact go out of the house?

I think you understand what I mean and why i struggle to get it.


So how do I establish my base line? Do I just lay in bed for 3 days and do nothing except the very basics and than see how i feel before starting to add activities one by one?




If someone could help me understand the above points, that would be the biggest help I could get.Thank you!

I really don't like ratings scales and I have refused to try and fill them out in the past. I always make the point that my situation changes almost daily and to try and shoehorn my condition into it would be a lie.

I do better with, "How many times last week (or month) have you had to forego bathing because you didn't have the energy or stamina?"

A series of questions like that, filled out weekly can really help me chart my progress, as long as I can write a note saying "On tuesday I exercised more than 30 minutes (shopping) and was breathing so hard at the checkout that the lady asked if I was ok. I was just exhausted like I'd run a mile."

If you keep a journal to record things you wish you could do but can't (vacation, visit family in another state, drive because you have a headache, make dinner...) then you can add that to your "how many times last week"

Not sure if that works for you but that's how I keep up.