What are your goals for today?

[Mya Symons]

My goal is to finish going through my paperwork so that I can finally file my taxes. I was too sick to do it when it was time and keep putting it off. If we hadn't claimed 0 and we could actually work enough to owe money, I think we would be in trouble. The IRS would be coming for us.

I was supposed to do this today, but was having too much trouble with the osteoarthritis in my back. Hopefully, it will get done tomorrow.

 

[u&iraok]

I like the spoon theory but sometimes I have one more or one less spoon, depending on how I feel. Yesterday I had one more spoon to use but I used two and overdid it. It would be easier if I had the same number each day so I know.

 

[Nielk]

That's what is the trickiest thing to figure out with this disease. ( ok, one of the trickiest).
Every day is different and you are not given an advance warning. It's like playing Russian roulette.
My doctor says;do half of what you feel that you can do. If someone can explain to me how to intuit that, I would be very thankful.

 

[Nielk]

My goal today is to do a small unexpected act of kindness.
See video.
[video=youtube_share;nwAYpLVyeFU]http://youtu.be/nwAYpLVyeFU[/video]

 

[u&iraok]

That's what is the trickiest thing to figure out with this disease. ( ok, one of the trickiest).
Every day is different and you are not given an advance warning. It's like playing Russian roulette.
My doctor says;do half of what you feel that you can do. If someone can explain to me how to intuit that, I would be very thankful.

There is no rhyme or reason. I try the 'do half of what you feel you can do' but it's hard because it feels so half-way! If I have a good day that goes out the window. I guess the key, for me at least, is to rework how I look at things, you know, the focus on being, not doing. I had a hard time with that, being a Doer, but I'm now learning it.

 

[u&iraok]

My goal today is to do a small unexpected act of kindness.
See video.
[video=youtube_share;nwAYpLVyeFU]http://youtu.be/nwAYpLVyeFU[/video]

LOVE IT, LOVE IT. Pay it forward, my favorite.

(But, uh, as much as I love doing good deeds, they give me an adrenaline rush that I have to recover from. )

 

[Nielk]

Sorry I caused you an adrenaline rush! Hope you recovered.

When I first saw this video that someone sent me, my first reaction was- well, what can I do from my bed?
When I really thought it out, I realized that there's a lot that I can do. I can call people on the phone and be extra kind to them. I could listen to my daughter's problems over the phone and instead of getting annoyed at her, I can show my empathy and support. I can show more appreciation to my husband for all that he does for me. Not easy to live with a wife who can't do much and especially when I'n in a lot of pain, I can see his suffering in his eyes. This made me think that I don't know what's easier; to suffer from pain or to see your loved one suffer ? Another small act of kindness can be done by showing support and understanding to one or all the members on this forum. So, here it goes:
To all the members of PR forum:

May your day be calm and relaxing
You are all so cool and understanding
I wish for you less pain and vexation
Thank you all for your benefaction
Whether helpful information or support
It is so appreciated by me and I'm sure Cort
I don't know what I would do without you
So, a big hug from me - a thanks or two

 

[u&iraok]

When I really thought it out, I realized that there's a lot that I can do.

Absolutely. The video kinda shows how one act of kindness spreads out and touches a lot of people or can make a big difference in just one person's life. And you yourself feel better. The opposite is also true, you know the old chain reaction of man's boss yells at man, man comes home and yells at wife, wife yells at kid, kid kicks dog, or however it goes.

 

[taniaaust1]

My only goal today which I arent sure if Im going to get done or not.. is to spend 20-30 mins doing some of the built up dishes.
oh or cook myself a nice dinner. (I may not get both done.. its probably going to one of these or the other)

 

[taniaaust1]

I'm sure most of you heard of the spoon theory?
In that vein, whenever people talk about staying within our envelope, (not overdoing it)I think of it this way;
Lets imagine everyone has an envelope. Normal, healthy people get 500 chips in their envelope to spend in a day. Everything they do, they have to give away one chip till they use all their chips up and they are tired and go to sleep. I think that I get on average ten chips a day to use up. Getting dressed is one chip. Going downstairs to the first floor - another chip. Preparing a meal - one chip. So, after breakfast, I already spent 3 of my chips. Now, I have to be very smart as to how I'm going to spend the rest of it. A phone conversation - one chip. If that conversation stresses me out - 3 chips. If the conversation makes me cry -4 chips. If I want to take a bath (I should have done it before I got dressed and came down because now this is going to be very expensive. one chip to go back up. One chip to get undressed. Two chips for taking a bath an another chip to get dressed again. (even if it's just putting on pajamas. Now, I don't know if I have any chips left for more meals in the day. I have to reserve some chips for when my children call me. If they tell me about their problems - it will cost more. That's why I usually stay in bed in my pajamas.
Oh-I left something out. You cannot conserve chips for the next day. It just doesn't work that way. Come tomorrow, you get the same ten chips.

Hi Nielk. I have to comment as I disagree with something in your post at least for myself anyway (thou I respect you being different).

Many of us can conserve chips for the next day. I purposely use less chips on the day or two leading up to the day I go shopping. That way Im more likely to have a successful basic shopping trip. Many too do preemptive resting the day before one has something important on (to build up chips).

Tonight.. Ive left my dishes and only made dinner as I need chips for tomorrow which I wouldnt have otherwise. (if I didnt plan my chips ahead, I'd be really in a bad way).
...

Joining the pj club Im in my pjs too.. have been in them since Friday last week. That's another way I conserve energy, I put all my attention on the things which MUST be done and getting dressed isnt needed unless im having to leave the house.

 

[u&iraok]

Many of us can conserve chips for the next day. I purposely use less chips on the day or two leading up to the day I go shopping. That way Im more likely to have a successful basic shopping trip. Many too do preemptive resting the day before one has something important on (to build up chips).

I agree, I do this too, but I can only conserve one or two chips, beyond that it will not go. It definitely works more the other way--using too many chips makes you so tired you lose most or all of your chips for the next few days or week.

 

[fla]

I don't interpret this as accumulation of chips. If your baseline is 10 chips you're probably hovering around 8 at the start of an normal day. Only aggressive resting for 2 or 3 days will allow you to reach your true baseline of 10 since recovery time is more than 24hrs.

 

[Nielk]

It's fun talking about it like we have chips. Like we are in a casino playing blackjack.
I want to win a jackpot! I don't know what I would do with it but, just the idea of winning something is enticing when you are laying in bed with a sinus infection.

 

[u&iraok]

I think they're potato chips. That's why they deteriorate so quickly and you can only save one or two, if any. They probably start out stale, like our mitochondria.

fla, I've read your post three times. I don't get it.

 

[fla]

I think they're potato chips. That's why they deteriorate so quickly and you can only save one or two, if any. They probably start out stale, like our mitochondria.

fla, I've read your post three times. I don't get it.

It's not your fault, I used to explain complex things very clearly now I can't explain simple concepts.

A) Some people say you get 10 chips a day and they don't add up over multiple days
B) Some people say they do add up but they max out eg. 10 + 10 + 10 = 12
C) I'm saying that A is the right answer and that they don't add up above your baseline

Everyone has a baseline (number of chips of energy their body can provide). What people who think B is the right answer are experiencing is that they think their baseline is 10 when actually it is 12. With M.E. even the tiniest activity will take up to 48 hours to recover from so unless you completely rest up for 2-3 days you will not reach your baseline.

Example: My baseline may be 8 chips but showering uses 3 chips and takes 48 hours to fully replenish. If I shower every day, I'll never see 8 chips in the morning since I'm still paying for yesterday's and the day before's activities. If I have a doctor's appointment and want to have close to all 8 chips to make it through the outing, then I must skip showering and everything else the day or two before.

 

[ahimsa]

A) Some people say you get 10 chips a day and they don't add up over multiple days
B) Some people say they do add up but they max out eg. 10 + 10 + 10 = 12
C) I'm saying that A is the right answer and that they don't add up above your baseline

Everyone has a baseline (number of chips of energy their body can provide). What people who think B is the right answer are experiencing is that they think their baseline is 10 when actually it is 12. With M.E. even the tiniest activity will take up to 48 hours to recover from so unless you completely rest up for 2-3 days you will not reach your baseline.

This makes sense to me, e.g., complete rest for 3-4 days will let me reach what seems to be my baseline.

I do think there is one other factor and that is that my baseline changes from other factors, not just spending chips on activities (mental or physical). My menstrual cycle, for example, changes my baseline. Not sure whether this is due to my problems with endometriosis and related inflammation, hormonal shifts, fluid changes that affect NMH (a type of Orthostatic Intolerance), or what. But time of the month does seem to change the baseline (I don't get any pre-menstrual problems, only problems during menstruation).

Also, my baseline (not sure if that's the right word in this context?) can be increased by certain medications. E.g., midodrine, although no cure, has increased the amount of chips that I have to spend.

And I love all the chip metaphors, everything from poker chips to potato chips!

Hmm, what about computer chips? Probably not a good metaphor because heaven knows that ME/CFS folks often have trouble with parallel processing. Even if we had multiple computer chips we could never use more than one chip at a time....

 

[maddietod]

This is a very useful metaphor. To start with maximal chips, I have to eat correctly, stay hydrated, rest sufficiently and sleep well, avoid stressful people and situations, and take my meds/supplements. There's a lot here i can't control, so I start the day with an unpredictable number of chips. If I'm fighting off a cold or flu, I might not know it for a day or two, and be using chips while not aware I'm 'spending' them.

Which explains why I suddenly have a sore throat and runny nose, after feeling good enough this morning to go out with a friend. I drank decaf coffee instead of water, have hardly eaten because I'm not hungry, and talked for 3 hours - way over my usual limit.

And now I feel like a soggy potato chip.

 

[Nielk]

Sorry you're feeling like a "soggy potato chips".
It's crazy how we have to pay for everything we do. Talking for three hours was probably good for you mentally and emotionally. We can't live our whole life as inanimate robots! We need some small amount of enjoyment but, then we have to alway pay for it.
Not fair.
Hope you feel better.

 

[taniaaust1]

It's not your fault, I used to explain complex things very clearly now I can't explain simple concepts.

A) Some people say you get 10 chips a day and they don't add up over multiple days
B) Some people say they do add up but they max out eg. 10 + 10 + 10 = 12
C) I'm saying that A is the right answer and that they don't add up above your baseline

I think you did put the concept together very well just then 10=10=10=12 . yes we all certainly do have a base line at which point with rest we cant go past.

My baseline may be 8 chips but showering uses 3 chips and takes 48 hours to fully replenish. If I shower every day, I'll never see 8 chips in the morning since I'm still paying for yesterday's and the day before's activities.

I start most of my days on my full quota of chips which I'll say is four (no amount of rest will improve that that).. I only a couple of days a week are in recovery mode the next morning as I really watch myself. So most days I start with a full quota of my 4 chips. (I wish these chips were real ones with sauce!!).

Except the day or two a week I go to the doctors or shopping then my chips are lower the next day say 1 or 2 or sometimes Im actually recovered by that same night. That is due to the coexisting POTS, it stops me from being able to greatly over excert myself as it literally floors me real fast and then I can of cause recover usually far faster from the POTS hit then if I had been able to continue and exert more and have the ME kick the life out of me.

In my case thou.. I keep my chips most of the time at the baseline by severely restricting what I do.. eg I only shower once or twice a week (thats the only time I get dressed, do my hair etc etc).. by doing such things.. I keep my baseline FAR HIGHER then it would be otherwise (which also stops me from crashing). In my case it pays doing that as I then can deal with any unexpected things which may arise eg the rare occassion of a visitor unexpectively showing up.. to which otherwise would trigger me otherwise into a severe ME crash from just talking to them.
Spare chips saves me from getting terribly sick which then takes me almost a year to improve from.

Conserving chips in my case allows me to keep the ME stable which it wouldnt be otherwise as takes my level of disablity up from being mostly bedbound to just being housebound but being able to get out most of the time for basic shopping.
Instead of starting each day on just 1-2 chips.. I have 4. In my own case it makes a lot of difference this form of management (but of cause everyone is different and some even with a mangement plan in which one hardly ever causes a crash, some still dont get much variation).

Chip conservation is how I ended up going into a few years FULL remission from ME in the past.. it was doing that over years which lead to me improving (a very very slow long improvement). I think that those who are having to push themselves and in the push/crash cycle of things are probably less likely to end up getting a remission.

 

[u&iraok]

It's not your fault, I used to explain complex things very clearly now I can't explain simple concepts.

A) Some people say you get 10 chips a day and they don't add up over multiple days
B) Some people say they do add up but they max out eg. 10 + 10 + 10 = 12
C) I'm saying that A is the right answer and that they don't add up above your baseline

Everyone has a baseline (number of chips of energy their body can provide). What people who think B is the right answer are experiencing is that they think their baseline is 10 when actually it is 12. With M.E. even the tiniest activity will take up to 48 hours to recover from so unless you completely rest up for 2-3 days you will not reach your baseline.

Example: My baseline may be 8 chips but showering uses 3 chips and takes 48 hours to fully replenish. If I shower every day, I'll never see 8 chips in the morning since I'm still paying for yesterday's and the day before's activities. If I have a doctor's appointment and want to have close to all 8 chips to make it through the outing, then I must skip showering and everything else the day or two before.

Oh, okay, thanks for taking the time to explain. I have long known that I have no idea what my baseline is since I haven't rested for a long enough period in order to figure it out.

I'm sorry showering makes you so tired. Everytime I read that from someone, that showering makes them that tired it makes me sad for them.

And don't get me started, ahimsa, on the menstrual cycle and other things that affect the baseline. I get two potentially normal baseline weeks a month (notice of course, that I don't say 'good' weeks) because of the menstrual cycle and then naturally something else will come along and mess up those weeks.