Poll Is the Planning Ahead "Muscle" Broken with Chronic Fatigue Syndrome / Fibromyalgia

[Rosie26]

I have three note pads on a table in my dinning/hallway. One is a to do list (which is very long and I can never keep on top of), another is a reminder of appointments or birthdays or must gets. Then the third is the grocery list. I have about 10 exercise books beside me in a rectangular cane basket that sits beside me on my bed against the wall. They are all filled with scribbles of reminders of treatments to try and all kinds of information. I very rarely look at them.

I forgot that it was Mothers Day today which I forgot to write down and had wish Mum a happy Mother's day out in the street at about 11am.

 

[Rosie26]

feel like I've been hit with a stun gun

Yes, that's how the brain feels.

 

[Cort]

I have three note pads on a table in my dinning/hallway. One is a to do list (which is very long and I can never keep on top of), another is a reminder of appointments or birthdays or must gets. Then the third is the grocery list. I have about 10 exercise books beside me in a rectangular cane basket that sits beside me on my bed against the wall. They are all filled with scribbles of reminders of treatments to try and all kinds of information. I very rarely look at them.

I forgot that it was Mothers Day today which I forgot to write down and had wish Mum a happy Mother's day out in the street at about 11am.

It sounds like you were probably a good organizer pre-ME/CFS....

Maybe when energy levels are low all the energy just goes to keeping going in the moment.

 

[lisaadele]

I have three note pads on a table in my dinning/hallway. One is a to do list (which is very long and I can never keep on top of), another is a reminder of appointments or birthdays or must gets. Then the third is the grocery list. I have about 10 exercise books beside me in a rectangular cane basket that sits beside me on my bed against the wall. They are all filled with scribbles of reminders of treatments to try and all kinds of information. I very rarely look at them.

I forgot that it was Mothers Day today which I forgot to write down and had wish Mum a happy Mother's day out in the street at about 11am.

I have the notepad by the bed and one in the kitchen too. And the list of treatments and information that I hope to get to ... or at least read over but often don't.

I find that after hearing/reading repeatedly about something that will sometimes provide the critical point where I will 'take action'. And having stuff written down helps me to make connections when my brain can't access the old info. without the help of the notes.

 

[Lissa]

I am surprised and sorry that you have this problem, Cort. I've always admired how much you seem to accomplish! But I recognized your situation the minute I started reading your words. Before I was a sick, my husband used to tease me that I had "the soul of a librarian" because I was so highly organized. Also, I was a litigator who managed deadlines happily, while raising my children. However, when I became suddenly ill with ME 25 years ago, all of that changed. My experience began to match your description exactly. It's not merely brain fog or hopelessness about being able to, e.g., keep an appointment, or even simple exhaustion, although those factors each play an important part. Rather, the biggest factor is being unable to prioritize (your graphic is exactly the way I feel most of the time) and then, even if I have managed to write a list of "to dos" the night before, my day goes by with that black hole feeling you describe so well and it's nighttime again with a dawning, sickening awareness that I have accomplished nothing. Even on my better days, I don't seem to prioritize properly and get the most urgent thing done. Helplessly watching my lists get longer, but somehow having so little ability to execute efficiently is probably the most dispiriting aspect of my illness. It's true that I only have a few good hours per week to accomplish anything, but it's equally true that my brain doesn't take hold of my life the way it used to. Some quite important things, e.g., signing up for free disabled transportation to my drs. appts., will remain on my list week after week for over a year.......and I have no concrete explanation for that! The one silver lining is that rarely I will have a couple of hours with my old brain.........so I know that I am still in there......and I'm hoping hard that all of us are still in there when the cure comes.

So well put!!!! I totally relate...

 

[Lissa]

As for the day, I used to have a "routine" of what I'd do after "bathing", which I barely do anymore due to energy conservation, and I have forgotten that. Thus, I often have no moisturizer or deodorant on or my hair combed or engage in other forms of "normal" hygiene like healthy people. I just forget and am too "dead" to do so.

Totally relate. I even have resorted to setting an alarm on my phone to remind me to brush my teeth. It used to be routine before leaving the house, but I hardly ever go out anymore-- so I always forget. Now it's like my brain doesn't even hear the alarm. Ugh.

I made it through my whole life with beautiful teeth and no cavities..... And now this??!!! Soooo frustrating!

 

[Rosie26]

It sounds like you were probably a good organizer pre-ME/CFS....

Maybe when energy levels are low all the energy just goes to keeping going in the moment.

I was able to do everything from my head practically and remembered things I had to do, before I got sick. So I didn't really need to write things down except for the grocery list and sometimes I didn't need to do that.

I look like I am very organized now with all my note pads and books but they are exhausting and I still forget to write things down in them. I am even having trouble remembering to take my HRT each day and often question how much water I have had to drink. It's getting to the point that I need a note pad to remind myself to take my HRT tablet. Quite disorganized really. I do well for a while and then I'm forgetting again.

 

[Rosie26]

I have the notepad by the bed and one in the kitchen too. And the list of treatments and information that I hope to get to ... or at least read over but often don't.

I find that after hearing/reading repeatedly about something that will sometimes provide the critical point where I will 'take action'. And having stuff written down helps me to make connections when my brain can't access the old info. without the help of the notes.

I also have a lot of problems accessing old info that is tucked away in my brain. I notice reading other members posts very helpful because it can draw them out.

 

[Lissa]

Confessional: I can't count the number of times I've read posts, then went to hit "like" only to discover I already "liked it", days or weeks ago. But it's like I've never read it before!! Really freaky. Especially since I used to have a very good memory not only for content but for where on the page I'd actually seen something.

@Rosie* - my brain worked the same way once upon a time! Racking and stacking lists in my head, able to efficiently organize "to do's" into the least steps/stops, easily remembering groceries etc. , and always having a mental videotape of where I had put things or even where I'd been.

Not that it was perfect by any means - but there is no comparison now. I only see glimpses of my old self on a "good day".

 

[madie]

My ability to plan is not the issue. The problem is my limited physical health and uncertainty.

This is me also. Everybody I keep in my life understands that all socializing "plans" are hopeful tentatives. And by socializing, I mean going next door to hang out with my neighbor, or someone coming over for a maximum of 2 hours.

I've completely simplified my home life, so the only list in the house is groceries. I shop and cook when I feel like it; otherwise I eat out of the cupboard and freezer. Somebody cleans the parts of the house I use, once a month, and somebody else mows the lawn. The furniture is worn, the floor is scuffed, my mattress has a dent in the middle, my winter clothes are stored under my bed. It's fine.

When I get a few days in a row of higher energy, I do start to plan. I've learned to take on a small task that gives me pleasure, like preparing this patch of dirt and transplanting these clumps of periwinkle.

My planning head muscle still works fine. I just have little use for it.

 

[Rosie26]

@Rosie* - my brain worked the same way once upon a time! Racking and stacking lists in my head, able to efficiently organize "to do's" into the least steps/stops, easily remembering groceries etc. , and always having a mental videotape of where I had put things or even where I'd been.

Not that it was perfect by any means - but there is no comparison now. I only see glimpses of my old self on a "good day".

My brother reminded me a few years ago of how I once were. He had tons of things to do and was telling me them all. I told him to make a list and he said no I don't need a list. They are all in my head, he said. I was like that twenty years ago as well.

I have a suspicious thing on top of my shoulder which I think might be a nasty skin cancer. I've had it for a year and it hasn't gone away. I decided a couple of weeks ago that I better make an appointment and get it removed. Nearly everyday since I think "Gosh, I better make that appointment today" and then I forget. So, I think now that I am writing about this I might make the appointment right now before I finish this post. lol. I have now made the appointment!

 

[Tony L]

Reassuring to know that I'm not the only one! A year ago I was still able to plan my life reasonably well. Then it all fell apart with family pressures and continues to deteriorate. Find lists virtually useless as I have no working memory most days. Get's increasingly difficult to do basic self care at times. Kids say I look like a tramp some days.

So what I do for now is set myself one job for the day and see how things go from there. So I can achieve one thing and more is a bonus, depending on the ebb and flow of cognition on any particular day.

Just remembered (4.34) that my son asked me to check his food in the oven at 5.00, what are the odds of me actually remembering at the right time?

I find that things to remember can come to mind very clearly and then they are gone. A couple of weeks ago my youngest son had to take his bike to school for the last part of his cycling proficiency course. Immediately on waking this came to mind. The next time it came back to mind was when I answered the front door to let him in after school. I had forgotten and he had too. Thankfully they passed him.

 

[Cort]

Confession: you would be amazed at how many blogs I've written that I hardly recognize anymore. One day I read a blog someone had posted on their site and I thought hey - that's pretty well done! Then I looked up and saw my name ....

Confessional: I can't count the number of times I've read posts, then went to hit "like" only to discover I already "liked it", days or weeks ago. But it's like I've never read it before!! Really freaky. Especially since I used to have a very good memory not only for content but for where on the page I'd actually seen something.

@Rosie* - my brain worked the same way once upon a time! Racking and stacking lists in my head, able to efficiently organize "to do's" into the least steps/stops, easily remembering groceries etc. , and always having a mental videotape of where I had put things or even where I'd been.

Not that it was perfect by any means - but there is no comparison now. I only see glimpses of my old self on a "good day".

 

[Cort]

Reassuring to know that I'm not the only one! A year ago I was still able to plan my life reasonably well. Then it all fell apart with family pressures and continues to deteriorate. Find lists virtually useless as I have no working memory most days. Get's increasingly difficult to do basic self care at times. Kids say I look like a tramp some days.

So what I do for now is set myself one job for the day and see how things go from there. So I can achieve one thing and more is a bonus, depending on the ebb and flow of cognition on any particular day.

Just remembered (4.34) that my son asked me to check his food in the oven at 5.00, what are the odds of me actually remembering at the right time?

I find that things to remember can come to mind very clearly and then they are gone. A couple of weeks ago my youngest son had to take his bike to school for the last part of his cycling proficiency course. Immediately on waking this came to mind. The next time it came back to mind was when I answered the front door to let him in after school. I had forgotten and he had too. Thankfully they passed him.

Working memory is like a black hole for me.....I was not allowed to cook anymore at my fathers and my uncles house unsupervised because I kept burning things. Talk about embarrassing.

When my energy goes up, though, it's like clear sailing...

I think problems with pain and fatigue draw resources from the thinking areas in the brain. That's what I read.

 

[Lissa]

Confession: you would be amazed at how many blogs I've written that I hardly recognize anymore. One day I read a blog someone had posted on their site and I thought hey - that's pretty well done! Then I looked up and saw my name ....

LOL..... isn't it disturbing and funny all at once? Right there with you!!!

 

[Cort]

Glad I am not alone (lol)

 

[SueS]

Thanks @Lissa and @Cort for the laughs ☺

I'm a writer, and I really want to continue because I love it and the world makes sense and becomes joyful when I do so. But editing is so hard! I actually find that once I start writing the thoughts start gushing. Which is probably why it's so pleasurable - we CFSers do not often gush (unless it's tears) and it makes me feel so alive.

But very quickly I get overwhelmed and the energy feels adrenalinic and crappy. When I come back to read what I've written later on it's going off on so many tangents that it's overwhelming.

I feel I could be so much more productive and I want to be but I can't and it enrages me.

On the other hand, my memory is so bad that I only need a week to completely forget I've written it at all and come back to it with totally fresh eyes :/

 

[Lissa]

Yes @Sue Stevenson !! I also love to write, but it has become so difficult! As you said -- I can gush on so happily, and when I come back to it later, what had initially seemed fluid and coherent is actually scattered and not really a good read without some serious editing. Waaaay more effort than pre-illness days!

I often discover that I have multiple documents started -- all trying to say the same thing. But none of them say it all like I had intended, and it would take hours to cob together the good stuff to make one pure document. Reallllllly frustrating! And then sometimes I think its easier to try from scratch yet again -- creating yet another document.... adding to the mess!

Also I can spend HOURS (not all at once of course) crafting an email, or a letter, or some other writing project --- and the reality is that these are things I could have done in minutes before this blasted illness!

So happy to hear that I'm not alone in this!!! Thanks for sharing you guys!

 

[SueS]

I wonder - maybe it would be better to start a new document sometimes. I freak badly at that idea, though ☺

 

[Farmgirl]

[fright]View attachment 1429 [/fright]Some years ago I had a temporary breakthrough using transfer factor; it was like my brain was released. I immediately started planning for the future. I thought I would do "X" first, then I would do "Y" then in a couple of months I would do "Z". It was a completely natural process and as the treatment faded it all went dark again.

I have a terrible time with planning or thinking ahead. I have a hard time even thinking of planning. I'm not talking about a week in advance, I'm talking about the day ahead of me. I think it's partly the idea of "ahead". I'm usually so overwhelmed by the here and now that I have trouble thinking of "ahead".

This really struck me today because I knew I had a lot of things to do but I just couldn't think of them. It was like a black hole.

When I make plans - phone calls, things to do, people to meet - I have to be real careful not to forget them. I forget dates to do things all the time.

I do know of people with ME/CFS who do fine at planning ahead but not me. It's like that muscle was lost.

This must have to do with problems with executive functioning....

What are your experiences?

I have very specific processing problems in relationship to time, abstract ideas, ...which "planning ahead" may be considered, math must be clear and concise such as budgeting is fine if everything is cut and dry, but if there is a missing deposit, or a numbers don't add up correctly, I start feeling like there isn't a place for my brain to grasp the idea and then do something with it. Overload sets in.

I always think I have more time than I actually do, even if I plan ahead.

Also, I have learned to TRY to plan ahead, but now, each day, I give myself small, measurable goals that I truly CAN do ahead of time, whereas before, it all seemed to pile up like 30 cars on a ice covered highway. I used to be a lot more unrealistic about what I thought I could accomplish in a certain time period.

Family is good about helping me with being realstic and I do plan ahead things they can do and write a list down for each person before an upcoming event. I am always surprised at how fast others can get things done!

For me, also, i think I have the hope (subconsciously) that ....tomorrow will be better.

If I DO plan ahead it seems I usually "forget" I am sick and plan way more than I can do....hence, my new idea of "small, measurable" (my own new personal "rule") goals for one day at a time. That is why planning ahead can feel discouraging for me, oh, I forgot...I am ill!

I have to write everything down. I notice that my mind seems to avoid anything it perceives to be "too overwhelming"...such as cleaning a basement that has needed attention for years, or a pile of papers that seems unmanageable. I have to ask for help from family members now in do insurance claims, complicated paperwork, etc .

So good to hear other's opinions in this area.