How do you cope with spreading yourself thin? :-(

Snow Leopard

Snow Leopard

Senior Member (Voting Rights)
For a long time, I've felt quite frustrated with competing interests, the many things that I'd like to do, but lack of physical capacity and concentration to do them.

Now I generally consider myself a good problem solver, and hence doubly frustrated as to why I still don't have a solution to this after so many years. I also figure I'm not the only one.

We all know about pacing, which is not just a binary choice of do/stop doing, but allocation based on how demanding a particular task is, with important tasks being allocated the highest priority for our limited periods of mental lucidity or physical capability, and followed by progressively less demanding tasks that may be less important, but are (hopefully) things we enjoy nonetheless.

Many years ago, I asked on an (able-bodied) forum, the question "if you were awake for just one hour a day, how would you spend your time". I have also asked other able bodied people the same question in the subsequent years. Most people answer along the lines of self-care and doing things that one enjoys the most. Rather than say, arguing with idiots on the internet or working in a shitty job. But most seemed to not consider personal values (perhaps someone wants to have a societal impact) and whether one could spend that time to solve one's own predicament.
There is also the question of keeping up social contact/social graces and the demands of parenthood. Many of us sacrifice friends and social graces, not because we dislike those people, but because it is so hard to keep up with all the social graces, given how thin we are spreading ourselves. Parenthood seems like a double-edged sword, placing demands on time/energy to the exclusion of most other activities, yet the unique reward of raising children. I can barely handle the attention of my nieces and nephews (albeit they are all extremely bright and demanding of attention), so I can rationalise about not having children, yet feel bitter about it at the same time.

Like most of us, I have a small amount of "useful" time where my mind kind of works, but how am I supposed to figure out how to use it? There are so many things I want to do, from a social life, exploring the city on my electric bike, to gardening, to composing music, to the wide range of volunteer work in the ME/CFS field, to pursuing postgraduate studies doing the research that I believe is fundamental to the field moving forward, that other researchers are not doing (and I have lots of actionable ideas). Yet I still recall how I felt during my undergraduate degree, which was basically study to the eclipsing of all else since I had almost no other energy to do anything else - and it took 10 years on and off, to complete a 3 year science degree.

For those of you who maintain employment in a job that you don't particularly enjoy, well, I cannot even fathom what that is like!

How can you choose what to do when there are so many valuable things to do and it takes you so much longer to complete those things than everyone else?
 
There are simply no good answers are there!!

And what works for one of us doesn’t work for all. I get frustrated watching my parents in their 80’s dash about jamming so much into each day - yet I am also pleased for them.

And I count myself lucky that I was almost 50 before this hit, and that I didn’t hold back on doing things while I was well. To get ME when young, is such a cruel blow.
 
Well, assuming that there is any time and/or energy left after dealing with the basic necessities of life then I'd suggest trying to figure out what is the thing that would make the biggest positive difference to you. Once you have decided on that, do that to the best of your ability and then see if you have any resources (energy, time, money) left for anything else. If you have, then do the next thing on your list.

My opinion is that we don't have the ability to attempt the 101 things that healthy people seem to, so better we focus our efforts on a few things and do them to a higher standard than if we attempt all the things and overstretch ourselves. Hopefully that helps somewhat?
 
The one thing i’d consider is how much free time you have every day, whether your energy fluctuates, What you really want to do (make a priority list) and test your response to the activity, whether it makes you crash or not. Monitoring would be important to ensure you are not ever exerting in the long run. It is a game of trial and error, moving forward and backing off.

Some activities are more demanding than others and it will vary from person to person. For instance, for me, talking is a highly demanding activity. I need to be careful with cognitively demanding activities perhaps a bit more so than physical activities but even then i am restricted)

Choosing what you want to do is entirely up to you. Enjoy your time and see how it goes, you may need to adapt to your capacity. It’s good to remain flexible and line-up a plan B that does not require as much energy just in case. Make sure you are kind to yourself if you miscalculated how much energy the activity requires.
 
Last edited:
Keela Too said:
There are simply no good answers are there!!
Click to expand...

Right, it's difficult to choose between so many good options.

And what works for one of us doesn’t work for all. I get frustrated watching my parents in their 80’s dash about jamming so much into each day - yet I am also pleased for them.
Click to expand...

Yes, I bet my father will still be running marathons in his 80s, meanwhile I can barely think straight for an hour a day.

Andy said:
Well, assuming that there is any time and/or energy left after dealing with the basic necessities of life then I'd suggest trying to figure out what is the thing that would make the biggest positive difference to you. Once you have decided on that, do that to the best of your ability and then see if you have any resources (energy, time, money) left for anything else. If you have, then do the next thing on your list.

My opinion is that we don't have the ability to attempt the 101 things that healthy people seem to, so better we focus our efforts on a few things and do them to a higher standard than if we attempt all the things and overstretch ourselves. Hopefully that helps somewhat?
Click to expand...

You have more or less re-phrased my conundrum. By spreading ourselves thin, I mean we have to choose, because we can only pick one thing at a time - and that choice is really hard. I really don't know how to value what would make the most positive difference, as the outcomes are complex. Any sort of calculus seems superficial and artificial.

Subtropical Island said:
Choose one for each year? Reinvent priorities each year.
Click to expand...

I did do that a bit (a few years back when I focused on music for example), but some commitments are more than that - part time research masters degree is still 4 years! (plus I'd have to do preliminary work to prove I'm worthy of a scholarship)
 
Snow Leopard said:
I really don't know how to value what would make the most positive difference, as the outcomes are complex. Any sort of calculus seems superficial and artificial.
Click to expand...
Sometimes it comes down to 'going with your gut'. What feels the best way to go, rather than trying to calculate it.

Either that or basing it on what can be achieved using the least amount of resources? Sometimes the value of achieving a simple and small task more immediately can be lost when looking at larger, more complicated tasks that won't reach a conclusion for some time that are of a perceived 'higher value'.
 
Andy said:
Either that or basing it on what can be achieved using the least amount of resources? Sometimes the value of achieving a simple and small task more immediately can be lost when looking at larger, more complicated tasks that won't reach a conclusion for some time that are of a perceived 'higher value'.
Click to expand...
This.

When unable to even start on an important task, due to its difficulty or complexity being overwhelming relative to not just my 'free' resources but my total resources, it seems common for me to do something which is achievable.

This frequently has the effect of reducing resources further, but at least I've achieved something vs wrecking myself, and achieving nothing.

Not a good strategy, but the evidence would suggest it is one I employ.
 
It probably doesn't help, but a very large percentage of the people in the world don't achieve anything very much of great importance (aside from bringing up children, but then if those children don't achieve anything very much of importance then perhaps all that has really been achieved is to add to the problem of over-population). Lots of people work very hard and then they die, leaving behind very little.

Scroll through the Psychosocial subforum here and think of all those researchers toiling away producing rubbish that actively harms. At least when we and much of the rest of the world's population just gets through our day, with no energy left over for making an enduring contribution, we haven't caused such harm.

And, even if we didn't have ME/CFS and we were one of the lucky ones to have a brain that works well and be living in a country where we get enough to eat and a good education and don't die of childhood diseases, and our caste or our class or our sex doesn't severely constrain what we might achieve, there are still a whole lot of other things, many random things that have nothing to do with talent or personal determination, that might cause us to never actually achieve anything much.

I'm for recognising the low bar on average personal achievement, so even a small achievement is a win.

I guess, in answer to your question Snow Leopard of how to make a small amount of energy go a long way, delegating or sharing the load with others (or machines) means that we can potentially get more of what we want done.

So, maybe there are ways to convince others to do what we need or want to do. Maybe it is worth using energy trying to find someone who can share the load of domestic tasks. Maybe there's a way to help research teams and patient advocacy organisations to do the research and advocacy we would like to see done without actually doing it ourselves.

Wonko said:
When unable to even start on an important task, due to its difficulty or complexity being overwhelming relative to not just my 'free' resources but my total resources, it seems common for me to do something which is achievable.
Click to expand...
Me too. Sadly, all too often at this time of year that is picking dog hair off socks.
 
I was brought up with the 'protestant work ethic'. My father's mantra was 'making your contribution', my school motto was 'I grow by service'. So it was drummed into me that I only mattered, and my life was only worthwhile, if I did something valuable and important that 'contributed' positively to the lives of others in a significant way.

Add to that having parents who both achieved high levels in academic and education fields, the pressure all my life to 'be' something has been enormous. I was 'destined' to achieve at least professorial status in a scientific field. That was the future mapped out for me throughout my childhood by school and parents.

It has taken me decades to realise how harmful that can be psychologically when one is struck down by illness that scuppers that possibililty, along with various life circumstances that took me out of the academic route.

Being a lowly part time college lecturer was not the destiny I was intended for, and when I ended up with a failed marriage, a part time teaching post that I had to give up because of ME, and a sick daughter with ME I couldn't cure, I felt a huge failure. CBT made it worse, as I wasn't allowed to feel what I felt, I had to try to think positive thoughts instead. I needed time to grieve for the life I didn't have.

Decades on, and at the grand old age of 70, I am really only now taking on board the wisdom of others. Life isn't just about achievement, it's about living each day with what we have. My daughter is, by the way she copes each day, a great lesson to me. She copes by living as well as she can within the great constraints put on her by ME. She finds something creative to do, and ways to pass the time, even if it's just lying in bed listening again to an old comedy or a familiar audiobook, and seems to have reached some measure of acceptance that this is what her life is.

As to giving advice to others, I don't feel I have any wisdom to offer. At first when I 'retired' I had great ideas of doing a masters and PhD in statistics and research methods and using that to expose the awfulness of the BPS 'research', but I've had to accept I have to leave that to others.

I cope with it at the moment by focusing on the necessities of daily life, and doing what I can within this forum, with occasional ventures outside it by writing letters. I have to hold myself back from getting involved in other ME organisations and campaigns because I know I would just end up letting others down.

It's frustrating not being able to do more. I hope, @Snow Leopard you can find a way to use your intellect and knowledge to push forward research, whether done by yourself or by prompting others to do it. I find your posts on the science threads here really interesting and helpful, and hope that there are researchers reading them too. Your involvement in the forum is a great asset to the ME community.

I wonder whether there are ways to link yourself to a research team as a sort of expert patient participant, inputting ideas and suggestions to help forward good research projects.
 
I feel for you, @Snow Leopard – it can be enormously frustrating, if not downright depressing if you think too much about it.

I guess I'm lucky in having very little concentration to start with, so doing something requiring a lot of it is out of the question! It does solve a lot of problems.

I don't have any qualifications, and years ago I'd like to have tried a degree course just to see if I could manage it. But now it feels as if it'd be a huge hassle, as I bunked off secondary school whenever I could (hideous experience from start to finish), and I'd have to learn about learning from scratch.

So each day, I do what I most feel like doing. Sometimes it's an activity I really enjoy, like birdwatching or gardening. Sometimes it's doing some cleaning, because the mucky floor is bugging me and I'm happier when I'm not being bugged. Sometimes it's just resting or watching TV. It means I feel content for enough of the time.

Of course I'm aware that my life has been hugely limited due to getting ME at 17, and that's not fair. But I also know that, had I not got ME, my life wouldn't have been completely different. I never wanted children or a live-in partner; I'd probably never have got around to doing a degree; and I'd still have chosen an enjoyable and fulfilling career in the same industry, albeit one where I might have earned a lot more and been able to work right through to retirement.

Age comes into it, of course. I'm turned 60, so I'm less prone to feeling frustrated than someone younger, and it's easier to know what I really need. I can take huge joy in looking at and experiencing things in a deep way, such as spending hours watching how a red mason bee uses its environment and its body, and how it makes provision for the next generation. I'd never have had time even to notice there was a bee there 20 years ago, let alone find out what sort of bee and what it was doing.
 
I have been forced into dealing with this for the last 8 years in particular. I find I have prioritized things, and priorities happen first. If I have energy and capacity left, fine. Otherwise, it doesn't happen.

Most things I used to think important now don't happen at all.

Things that are important, and should be priorities, but are beyond my capacity, are put off to the nebulous future. In most cases way, way, way off. I don't like this solution, but currently have no alternative that seems feasible.
 
I have no answers for you @Snow Leopard. Sorry. I do know exactly what you mean though.

It really makes me laugh in an ironic sort of way when I read the latest BPS "offerings" which increasingly tend to be a poorly understood rip off of a simple concept that forms part of a more complex whole from Eastern philosophies.

If any group of people has to learn to cope with learning patience, accepting limitations and adjusting value systems, it's us.
 
Snow Leopard said:
Yes, I bet my father will still be running marathons in his 80s, meanwhile I can barely think straight for an hour a day.
Click to expand...
Yeah, I spoke with my dad a couple of weeks ago. He lives further down country. He is turning 80 this year. He told me he was out playing bowls. It's really hard accepting the life of ME when you know your own life should have had the same energy as your parents and wider family.

I had very frightening head symptoms at my very severe ME onset, painful skull, it felt bruised, it hurt to think, etc. So I don't bother in trying to achieve any kind of intense learning. My brain needs to rest and I allow it to do that without feeling the need that I have to accomplish anything. Just surviving this illness and the grit it takes to cope with it is a major accomplishment for me.
 
I accept that I can only dabble a few minutes here and there in my varied interests. But over time, they add up to a lot. Besides, good things take time to ponder, germinate, sleep on it. There is no hurry. I do what I feel like doing in the moment.

I need to be creative occasionally;I abhor routine. Today I sprayed bleach on a T-shirt Ii hate to see some random changes. Was grey; now it's pink and gray, like a smoky sunset. Cool. Now I'll wear it, and proudly.

I've saved leaves, flattened them and will press them between waxed paper and make a border out of brown paper sacks, in order to fit a window giving me privacy. Mind you, the project has sat there for weeks. Soon the time will be right.

The leaves came from a woods/historic cemetery. I am able to drive there and walk slowly once or twice a week.
I've learned so much about the trees there, the butterflies and some birds. Just by observing and asking myself questions. Looking on the internet for answers. My high school biology teacher had us map out a 12 x 12 ft area in the woods and we reported everything that went on there. This feels the same, though a much larger area.

Today i picked up some litter (brought gloves!) for the first time (though it isn't crowded which is why I go there). I have started to protect exposed tree roots on paths with bundles of twigs. I'm not going to wait to go through the bureaucratic channels and egos. Following a local naturalist's advice on the internet, I've relocated acorns off paths to more open areas that need trees.

I am not a person who is patient about meetings. I don't do zoom. I have a few friends. They are kind people and uplifting. The kind I need.

If I get out of balance with simplifying tasks, ambitions and desires every day, of if after a particularly humiliating bout of pain/PEM spur me into over activity-ambition, I try to remember to back down, slow down, pick three things to do (today or this month).

Three is a number that a lot of animals understand, so even I in my frazzled mental state can remember the number three.

I hate when I volunteer myself for something approaching 'normal' and find myself up against the wall of frustration at having fibro/ME and not feeling in control.

I want my abnormal life to be normal for me and only I can fashion that. I need to feel in control of my life. For that I have to maintain a huge vat of self-awareness, despite my mind going frazzle-dazzle frequently.

Great question @Snow Leopard.

Will the activity give you a sense that you are in control, that you will gain something. What were your interests in childhood and before you got sick?

What are your values now?

Rehearse how you would cope with the activity you are thinking of pursuing. Is it realistic for your functionality? Can you have absolute flexibility? That's why I like self-directed actions. A blog, for instance.


Just being kind to another person daily is a great gift to the world. So is a smile.
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom