Studying would be nice

[Hell...Hath...No...Fury..]

That's what happened me. I can't remember any of it. It's embarrassing! People ask me questions related to my degree occasionally and I'm like:

*deafening silence, mouth open, letting the flies in, eyes glazed over*

:thumbdown:

I dont regret it as it was the most independent, normal experience of my life with M.E. so far, but it made me so much worse that by the end of it I was bed bound. In that respect it was bittersweet.

I have done two short courses since - distance/online learning. I found them cognitively challenging but definitely easier from a physical perspective.

Haha i know its completely humiliating, so much so that i don't tell people what i've studied now to save having to answer questions on things i should know lol

 

[JAM]

I would not have been able to finish my MA if I didn't love the coursework.
That was a definite prerequisite for me.

So... there you go... there's no one way to go about this.

That is how I feel about the program I'm in now. The other one I went into with the goal of getting a piece of paper that says I know what I already knew. Enjoying it definitely makes it easier!

 

[JAM]

That is so cool! I will have to look for that in my area.

If there isn't a program in your area, there are students in this program from several other countries. You don't have to be a resident of Arizona.

 

[CantThink]

I am only trying to identify effective ways for me to succeed with studying a single subject at a time consistently without huge gaps in the project.

I think it depends what you want to study as to how best to approach it.

I've done a language class, art class, silversmith class, continuing development classes; each where I attended a local adult education college once a week. I've also done two online/distance learning courses.

The in person attendance gives a routine, social interaction with others, and yet is hard on the body (had to give it up after a year). I enjoyed it, but I prefer self study as I can do it when I feel best able and in bed if needs be.

Some things suit in person classes - practical things are better done in class rather than distance. I think if you can set a reminder on your phone to attend class that helps. Or ask someone else to remind you. With homework/studying, I'd make a chart with tasks to be done and tick them off - you could stick it to a kitchen cupboard or the refrigerator or somewhere you'd see it.

There are free apps if you are studying - flashcard ones are good as you can build up a collection and go through them to learn or jog your memory. Again you'd probably need to set yourself a reminder.

 

[brenda]

For me, it is vital that it is a subject that l am absolutely passionate about. There are many things that l am hugely interested in, like learning new languages (l have studied German, French, Greek and Latin - the second and last at school) theology, energy medicine and of late, molecular biology, but they wear my brain out. Recently however, l started an online course lasting a nice 6 months about St Teresa of Avila, a 16th century Spanish mystic, and because it is concerning one area in theology that l absolutely love, and feel that l have special insight in, it is giving me a boost instead and is not tiring my brain at all, so l would say to choose the subject carefully. If l do well l will be able to move up to degree level all online with excellent structure and support from the Carmelite Institute.

 

[justy]

For me, routine is the most important thing - I always study in the morning between 10 and 12 (roughly) and then have lunch and then rest in the afternoon, at the moment usually in bed - checking up on PR, watching a movie or meditating. then in the evening I catch up on reading (im doing a literature degree with the Open University so I have to read a lof of fiction books)

@Hell...Hath...No...Fury.. I know what you went through with the OU - last year was my third year (6 years to complete a degree) and I felt like it killed me - I had an exam as well at the end of the year and even though I was allowed to take it at home, a 3 hour exam over three days rather than in one go, I thing it permanently set my health back. This year I was going to have a year off - but the fee structure is changing and so far I have not paid a penny for my degree due to grants etc - if I took a year off then I would have to pay maximum amount for next three years.

In the end I realised that without the study I start to feel depressed and aimless - like there is no purpose to life. I also start treatment with KDM this year and thought that if I am stuck in Belgium without my family, then it will keep me distracted.

I have had to decide to not try so hard this year though. The pressure last year broke me apart and this year I am going to attempt to be more relaxed, ask for more extensions on my essay and TRY and be happy with just a pass grade for essays and assignments.

 

[Hell...Hath...No...Fury..]

@justy wow i didn't realise this about the grants I think i'll have to just round up my points and make a uni diploma out of them instead to add to all the other diplomas i've got lol.

Routine is the one thing i absolutely can't do, because of at least 4-5 days of severe migraine a week i literally can't plan anything around the ME as i don't know which days/times i'll be living in pitch black or projectile vomitting for hours.

I know exactly what you mean about getting depressed when stopping though as it happened to me too, and i really missed the distraction it gave me, but that was preferable to putting my body through torture, and as a result of stopping i managed to have a boyfriend for a while instead which i couldn't have done while studying.

These days i subscribe to the school of youtube hahaha and have reignited my artistic side and dropped the scientific side and having a great time! I've forgot about outwardly achieving things with a certificate attached and swapped it for a more private inward learning of fun that i can stop and start whenever i want.

In the last couple of years i've learned how to leatherwork and silversmith all thanks to youtube. I'm going to start glass fusing next I like it because its arty but at the same time there's a great deal to learn to keep me interested and my time feels worthwhile again. I love going to bed knowing i've created something new and when i'm too ill to do anything i can lie still and watch a short video clip and learn another technique to try out for when i can move again so it gives me something to look forward to through the paralysis.

I hate wasting time without learning 'something' and this illness is all about the wasting time. Because i don't retain any information from studying so it can't be used for anything useful, at least these hands-on skills are remembered and built upon and gives the same sense of achievement but in a different way.

I really, really admire you for sticking with the OU justy I know exactly how hard you must have worked to achieve that. Its an amazing achievement and something you can always be really proud of

 

[CantThink]

@justy

I really empathise with what you said. The whole permanently setting you back, wanting the best grades you know a healthy you would easily achieve and the blank nothingness of no studying.

I think one of my biggest challenges with M.E. and my other health problems is the latter. I struggle to find meaning and purpose. A lot of the past few years I've felt so: 'what's the point of my existence here on earth' because I cannot fulfil any of my dreams to be married, have a family or run my own business or to be frank even earn money... It's so hard and studying does help to alleviate that as you are a student not just a sick person.

I even started thinking about doing a part time masters if I can get better with my other health issues. They're making everything 10 times worse.

 

[CantThink]

@Hell...Hath...No...Fury..

I'm a no routine person too. It's all so unpredictable. I find it annoying as I know I'd get so much more done if I could commit to regular short sessions.

I also have swapped academia for practical skills. I've always been a mix of both but these days I'm focused on practical. I think I see more or quicker gains and satisfaction from creating something so it almost motivates me a bit more.

At the moment I'm learning to use some marker pens I got half price in Hobby craft. They are totally new to me as usually I draw in graphite and last year I started trying coloured pencils. For the coloured pencils and markers I've also been using the School of YouTube.

 

[Valentijn]

My passion currently is bioinformatics. I started an introductory course about 6 weeks ago, which was very fun once I learned to ignore the overly-complicated formulas being presented to do very simple calculations I've also learned about some amazing resources from the class ... sites where I can paste in the known sequence of a protein created by a gene, and the resulting protein change from a missense mutation and they calculate the probability that the mutation is disease-causing. Finding out about that was like Christmas morning

I also started a bioinformatics algorithms class about 3-4 weeks ago. But that one is very heavy on writing programs to solve problems, and doesn't give enough instruction on how to do it. So I'm following along on the reading still, and taking quizzes, but giving up on doing the programming problems or getting points for those. Luckily my fiance took an interest when I started the course, and he's still kicking butt with it. There's also a class coming up for using algorithms (programs) versus creating them from scratch, so that should be a lot more manageable for me.

So basically I'm not worrying about perfection or even passing the hard class. I'm just learning what I'm currently capable of learning from it, and revising my plans a bit as things progress. Even the hard one has had very cool stuff, so I'm not regretting signing up for it, despite the angst caused when the "basic" programming skills recommended for the course were woefully insufficient!

 

[Hell...Hath...No...Fury..]

I'm a no routine person too. It's all so unpredictable. I find it annoying as I know I'd get so much more done if I could commit to regular short sessions.

You never know, maybe you wouldn't get more done. I know whenever i've tried my best to commit to something regular to achieve more it means doing things when i should be resting and the set back from that detracts from any forward progress made even if its only doing short bursts of something.

I think i get more done by having the freedom to be sporadic and sometimes doing nothing makes me achieve more by not having a set back for days or weeks.

If i can, i do, if i can't, i youtube, till i can the school of youtube is a lifesaver sometimes

 

[GracieJ]

Thanks so much for all the posts. It is a rich experience reading all the stories, and captures well the drive we all have to keep on with life.

I am learning a great deal from this, and have set up a few new hacks to accomplish some things. If the material I want to learn were needlework kits the stack would be sky high! Not realistic really fast, and of course the part of me that remembers normal is protesting that it cannot be a half dozen at a time.

So I chose ONE to start with, a book series about Abraham Lincoln that has sat for years since I first picked it up. NOT casual reading.

Wednesday night for two hours is my study time. It is on my iPad calendar now with an alarm the day before. I miss half the alarms I set, so catch as I can.

It sounds silly, but I am using an old teaching tool from homeschooling my kids to do this. I made a notebook with a printed sheet on the front with the project, start date, time block, etc. printed. Inside, I listed my goals. (Tiny ones.) Additional paper is there for reading notes, referencing good quotes, etc. This idea is known in homeschooling circles as a Great Brain project. You write down everything you know about the topic. I won't be doing that as it would just be too much, but a little of it is good.

The binder is front and center on my piano. When my eye starts blending it in, I will put it on my desk, or right where I sit down the most.

So, new plan, hopefully new habits for once.

I learn and absorb like crazy constantly, but seldom with a system and follow-through. My mind goes a million miles an hour on dozens of ideas all day long. Hard to say if it's overdrive from who knows what, or trying to make up for lost time. Hard to shut it down lately. Part of the wired side, I think. All my reading, especially the science side, makes great conversations with my clients. Half the time I could not tell you the source material for that fascinating idea of why and how dopamine works... it got lost in the other fifteen related pages, and I even forgot I read it until someone asks a question. Nilly-willy and interesting and scattered.

My lab scientist daughter had suggested making a PowerPoint presentation as if teaching the material. That is too much for me right now, but I do love the idea, having done PowerPoint presentations in the past. I used to have another life, teaching and presenting to groups for various things. What one forgets.

I am really excited about and looking forward to a new list of completed things as time goes by. Getting from point a to point b with a plan is a nice change.

 

[Dreambirdie]

For me, routine is the most important thing - I always study in the morning between 10 and 12 (roughly) and then have lunch and then rest in the afternoon, at the moment usually in bed - checking up on PR, watching a movie or meditating. then in the evening I catch up on reading (im doing a literature degree with the Open University so I have to read a lof of fiction books)

In the end I realised that without the study I start to feel depressed and aimless - like there is no purpose to life. I also start treatment with KDM this year and thought that if I am stuck in Belgium without my family, then it will keep me distracted.

I have had to decide to not try so hard this year though. The pressure last year broke me apart and this year I am going to attempt to be more relaxed, ask for more extensions on my essay and TRY and be happy with just a pass grade for essays and assignments.

Justy, I am like you in that routine is really important to me. My body likes the rhythm of predictability. My formal schooling is over. (Two degrees is enough for me!) So my focus now is on creative projects (primarily music and painting). I find that afternoons (after lunch) are the best time for me to work. Then a nap afterwards.

It's definitely personally rewarding to have a focus beyond taking care of one's health. Some of my creative projects require more money than I can dish out at once, so I have to accept that it will take me up to five times longer than it would someone who is healthy and has a healthy person's income. But that's okay. I can live with that. I enjoy not having the pressure of living up to someone else's timeline, and I have the self-discipline to chug along at my own pace and get to the finish line when I choose to do so.

 

[GracieJ]

It has been several weeks since I posted my frustrations about studying.

Thank you, thank you, thank you!! for all the tips and stories.

Getting some new habits in place has been a challenge and struggle. I honestly can go days just surviving but losing track of a desired goal. New systems, new habits - I can check in and see where I was and pick it back up now. This has relieved a lot of frustration and duplicated effort. The "pile" of unfinished reading and/or projects doesn't feel quite so daunting, as it is now broken down into tiny pieces that fit into ten-minute windows. It is still a lot of hit-and-miss with more miss than I like, but moving forward. So much nicer than only going to work or resting. I am happy I could add another dimension to life! And... it happened on top of a crash, so even better.

As to the "why" of doing this... These past few weeks have shown me again why. It truly is a lifeline to normalcy and a sense of self-worth and accomplishment to pursue and complete goals. I guess I did not really fully realize how much starting and stopping was going on.

This feels much better.

 

[paolo]

I was a very good student of engineering. After the illness onset for most of the time I have been unable to read. So it has been impossible -in my own case- to continue my studies. I had a sudden transition from a brilliant student -with ferocious concentration- to mental disability. All in a few days.

When I heard stories of people with CFS who are able to continue their studies I always wonder if we have the same disease. Maybe these differencies in cognitive disfunction are due to the fact that I have lyme disease?

The loss of my mental abilities has been the worst part of my illness.

 

[Valentijn]

I was a very good student of engineering. After the illness onset for most of the time I have been unable to read. So it has been impossible -in my own case- to continue my studies. I had a sudden transiton from a brilliant student -with ferocious concentration- to mental disability. All in a few days.

Most courses on Coursera don't have much reading. They also all have video lectures, usually with subtitles, which might be easier for some people.

At any rate, I struggle to read novels, but can handle articles and shorter papers, especially if I have unlimited time to try to process them. It's much slower for me now, but still possible, especially if OI is under control and I'm avoiding PEM.

 

[paolo]

Most courses on Coursera don't have much reading. They also all have video lectures, usually with subtitles, which might be easier for some people.

At any rate, I struggle to read novels, but can handle articles and shorter papers, especially if I have unlimited time to try to process them. It's much slower for me now, but still possible, especially if OI is under control and I'm avoiding PEM.

The problem in my own case is not only reading, but also following a video, thinking or memorizing. Sometimes I regain part of my abilities, but only for short periods of time.

 

[paolo]

Is there any symptomatic treatment which is effective in order to improve cognition? I've already used Provigil, and I'm now trying Selegiline. I've heard about Pregnenolone and DHEA. Are they useful and safe?