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

a.k.a. satisficing, doing enough so that its minimally acceptable, not so its perfect.

 

You're soooo not alone in this!

And I wished I had a good answer. Mostly I just muddle through from one day to the next spending what little energy I have on whatever has floated to the top of the most urgent list. In a way decisions are easier now than when I was less severe. Fewer choices. Easier decision making paid for dearly by everything else being a whole lot harder, sadly.

With age I've learned not to put too much energy into choosing the 'best' option. For starters there's no way of knowing in advance how things will turn out. Plus I've accepted that nobody can ever do everything they'd like to do, that's just an annoying fact of life (extra annoying for us, admittedly). And I've observed that when I'm doing something that's meaningful to me I don't fret much about all the stuff that isn't happening. But when I'm spending time on things that don't align with my values, that's when frustration really sets in. In terms of deciding, mostly I go with my gut but when my gut doesn't have an opinion I sometimes resort to a coin toss. Works fine provided the options to choose from were both aligned with my values in the first place (and realistically within my energy envelope).

Intriguing!
What's most important to you, doing research yourself because you love doing research, or seeing your ideas tested even if it has to be done by somebody else?
Are there any compromise solutions like pitching your ideas to established researchers, i.e. your idea, their donkey work, both names on the paper? It's about time they took patient involvement to the next level.

 

Yep. I was always very performance and acheivement oriented, ambitious, striving, hard working etc etc, and also tried to make a difference doing voluntary work. One of the big changes with having ME was accepting that sometimes stuff just doesn't get done. And then accepting that nearly all the time nearly everything doesn't get done. For a couple of years my only goal each day was not to have a headache, if I managed that, anything else was a bonus. In that time I spent a lot of time on the forum, and also watched a lot of documentaries, and that was just about all I was capable of after work.

As I have very slowly improved in microscopic increments, I have stopped watching so much stuff and started learning things that interest me, so apart from improving my chess I've taken up maths and physics again. I use Anki, spaced repetition software, which is great for someone with ME because I can break everything down into very small chunks and learn/review something even if I only have 5 minutes to spare or run out of energy. Plus having everything on ankidroid means I can learn everything on my smartphone, so lying down rather than having to sit at a table. I wouldn't sign up to anything (like a degree course) which required me to learn to someone else's timetable. These days just about anything you want to learn seems to be available for free or cheaply, so I just get hold of what I need and put it into Anki to learn as and when I have the energy - I wouldn't learn faster any other way, not without payback anyway.

I like to feel like I'm moving forward in some area of my life, so if I'm able I'll at least try to be learning something, not with any end goal but rather because it interests me. I regard setting goals as rather dangerous these days and try to avoid it, rather making progress as and when I have the energy. And if I don't have any energy, I do bugger all, and the world will just have to manage without me changing it because I've got an illness to manage which no-one else is going to manage for me.

 

I know exactly what you mean and there is no easy answer. I found it very difficult to cope with not working and I had many dreams about work. In the end, I stumbled on a science research project that I have been working on independently for 15 years which stopped the dreams. Occasionally if I have to take a break the dreams come back. It is clear that it is important to me. I am incredibly slow and find it very difficult, have lots of ideas and knowledge that I will never be able to share, but I have to accept that I can only achieve a teeny-tiny bit of what I want to achieve (not that I don't ever get utterly frustrated!).

 

Check out Danny Gregory for good ideas for drawing. He used to do a daily thing for drawing, though I think that's over now. His books (I love Everyday Matters) are good, and he does paid for lessons online, along with other artists. Never tried the online classes as I'm not really well enough to commit to the tight times.

Aha, just checked out the EDM challenges and blog going back to 2012... I did some of the challenges... Should get back to drawing more again!



EDM favourite mug

 

I just want to apologise for using energy in my previous post - this in no way describes the real experience of ME. I just wasn't able to do the job of explaining more accurately. I know it is important to try and get the right experience across. This part of my previous post bugged me while writing and afterwards.

 

Thanks for all the thoughtful replies.

My experiences in the last few days have reminded me once again how fragile our balance of activity is once again. My last few days have been wasted because someone entered my back yard and smashed the window of my car. I wondered why they didn't actually rummage though my car (the hole in the window was not large enough to open the door). With much thought, I guess because my car is over 20 years old, they were trying their luck in stealing it, only to give up when setting off the alarm. Unfortunately, I've spent the last few days trying to track down a window, there are none locally and I've had to order one from interstate, with a week of anxiety due to the missing window and hoping the replacement doesn't arrive damaged.

Back on topic though, there were a few notable points mentioned by more than a few people. One was about the nature of motivation, effort and achievement. I can't say I was raised with a 'protestant work ethic' or similar. My parents are both extremely intelligent, but they're also quite laid back. (I actually wished they'd be more interested in supporting me in extracurricular activities between the ages of around 10-15, before my healthy life was cut short, but I digress...)
But it is also not that we (I was the youngest of four siblings) were not expected to achieve, but simply by working as hard as everyone else, we can achieve more than others, simply by virtue of greater intelligence and self awareness. So I was following the 80/20 rule, long before I became ill.
As arrogant as that sounds, that was my experience at school, getting mostly A grades while coasting and making money with internet ventures in the late 90s. Of course my lack of diligence (and unexpected windfall) meant that I didn't file a tax form with the US government, leading to thousands of dollars being withheld (that I never got back!). But then I became ill and everything turned to shit, I started to realise how hard it can be for others to concentrate and do school work!

That was over 20 years ago. I have never had a job that has lasted for more than a week. As such, my drive to do something meaningful isn't necessarily out of some desire to "achieve", but I feel like I've missed out on what most people regard as a life. I've been choosing 'lesser' tasks for years, basically what I feel like doing on the day, but I'm feeling increasingly unsatisfied with that approach.

In a sense, both. My experience of pitching ideas has been poor. There are basically two responses: being ignored, and researchers that have their curiosity piqued, but I suspect they don't have the knowledge or time to dig in, which is why they usually reply with encouragement as if is something I should be pursuing, rather than them.

I'm also not interested in writing purely hypothesis based papers, I want to see experimental research done and I want it do be done properly, which means an advisory role on a team at the very least. My motivation also stems from frustration that no one is building on what so far is the only firm foothold that has been found so far in ME/CFS research. It is building on those footholds that will end the funding catch-22 so I don't understand why no one is on board, especially the researchers who have conducted the preliminary research. I simply can't deal with the prospect of another 20 years of more of the same.

 

Going back to the original question, sorry to jump about:

I’ve thought about this sort of thing quite a bit since illness. There are all those stories about people with end stage cancer or parapegics or .... etc conquering the obstacles and climbing to the peaks of mountains (both figuratively and literally). Of course we know that they are the exceptions. But there is always the question of whether (and if not why not) we are able to be/do that ourselves.
I’ve concluded that the biggest single factor in this sort of thing is a person’s support structure. Stephen Hawking could not ever have done all he does without help. It simply would not be physically possible. In fact, all those disabled people at the tops of mountains had someone (or a team of someones) who helped with logistics, who carried the gear, who did all the thousands of little things necessary to allow the legendary person to do their excruciatingly difficult part.
This doesn’t take away from the achievement.

So, I guess the question we have to ask ourselves before choosing something epic to strive for is: what support structures do I have? Who could I enlist to help? What contacts do I have to access assistance? Do I have back up support for my support? And am I able to inspire an ongoing commitment to my goals from these people?

Because for any person in this world their achievements are not done alone. But for pwME, I think we can be sure that any lack of those support people will define the limits of what is achievable.

And planning needs to allow for the many unavoidable set backs.

I’m looking at what I’ve written here and thinking it looks a bit depressing to many of us. I really don’t mean that.

I am more thinking that if any of us are to take on an epic goal we need to plan it, build support and delegate brilliantly, much as the explorers to the poles had to do. Because what is doable on a good day isn’t the defining factor. Building a team, keeping them feeling appreciated, and good contingency planning is.

 

I'd say it doesn't even need to be an epic goal for it be worthwhile to build a team that will help you achieve it. All that I have achieved in the ME world has been either directly or indirectly enabled by having a number of people who can provide help and support of various kinds. I'm certainly not the smartest, nor the most motivated, but I've looked to build connections with like-minded people where I can, and the support from that network, and a willingness to just give it a go, has meant I've been, and become, involved in a variety of things that 10 years ago I wouldn't have dreamt were possible.

I'm also aware though that I have the huge advantage of being in an stable financial position, with a supportive wife, which is something a lot of patients don't have, so that makes a huge difference as well.

ETA: Speeling iz hard.

 

That's really putting the science into S4ME! I like it. Proper patient-driven research not just some proforma... what's the equivalent to greenwashing here, patientwashing? Hm, maybe not the best word but you get my point.