Discussion in 'General ME/CFS Discussion' started by RedLineBoy, Aug 28, 2013.
So what do you do all day? Watch TV...It seems like that is the only thing we are good at.
Play solitaire on the pc. It doesn't use up any "cognitive" energy, just simple recognition stuff stuff in short term.
I can read simple teen fantasy novels - if they've got nice big print and double spacing. Thankfully, teen fantasy novels are my sort of genre anyway.
It's the loss of my intelligence that I mourn the most. I'm sure it's still locked away somewhere, but I can't access it.
I often find TV programs to be too complicated to keep up with, unless it's something I've seen before.
Me too. I can't cope with anything over an hour long; I can't handle audience noise in quiz shows; I miss important points in detectivey programmes; (which my OH likes).
I can't watch TV at all. The noise and the flickering drive me crazy. Not to mention people acting stupid and I just want to yell at them.
I play spider solitaire, do jigsaw puzzles and sudoku, and cook for myself. When the weather is cool enough and I have the energy, I do sit-down gardening - trowel-sized, rather than shovel-sized projects. I meditate twice a day, and one of those is with a brainwave entrainment cd, my newest experiment.
I'm amazed by those of you who can read, digest, and share scientific information here. I lost that brain long ago. My masters was in psychology, and while I can't follow the research, I've never lost my interest in how we tell ourselves stories, make things up, fool ourselves, etc. I spend time with Buddhist psychology. Sometimes I sit in a bookstore and people-watch.
Teen and adult fantasy novels work for me too.
I can't do jig-saws any more, my eyes just give up on me;
My mental arithmetic isn't up to Suduko.
We all just have to find something we can do a little bit!
I find that I still enjoy tv shows that have a good plot and interesting characters, but I can't even be in the same room if my kids are watching cartoons or any of their ADD shows that involve random clips of things. They make my head hurt. I even have trouble with my husband watching sports because there are so many commercials. I usually watch shows only on the dvr at this point because I can't stand the manic nature of advertising.
I like recorded things too (well, downloaded and stored). Then if I zone out and miss something, I can go back.
I can't watch TV at all during the day. A little in the evening or at night but a very limited range of programs only.
Funny you should say you can't cope with cartoons, Vamah - sometimes I find cartoons are the easiest thing to watch - the images are simple and unfussy.
The joy of pre-recorded stuff is not only being able to go back and check - but that you can fast-forward through the ads.
When you watch enough episodes of cheers i automatically yell out 'Norm!' whenever Norm comes into the bar. Lucky this happens every episode so i dont forget.
Unfortunately I've been waking up with that question in mind very often in recent times. It's a bit depressing, and I have to put it off my mind, otherwise it would ruin my day. Why me? Why us? When would this end? Will I ever be this limited? Is this it for me?... I don't know, but I'm having a hard time with those questions lately, specially when I think of all my career achievements stopped short on their prime.
I really, really, really hope not. I truly hope something happens soon. I hope research continues in the right direction. Otherwise, what's the point? Sorry, I'm having a bit of a depressing day, after coping with another work-related shortcoming driven by my cognitive ME/CFS.
I'm having a crappy day also, my body is humming and I can't get out of bed for long. Doggy is looking at me saying "not again" I keep calling people who are too busy to talk to me just so I can get some interaction and maybe some energy. KDM thinks a cure or treatment is within 5 years that will change a lot of our lives, hang on but just for today look for something to get you through, Antares.
Sorry about the crappiness of today for some here.
I do agree though, that on our "better days" we can evaluate the research going on and see the hope. There are treatments now that help many, it is just that any one treatment doesn't help the majority. Back to subset research!
I needed to scan something this morning. I stared at my computer for over 10 minutes trying to remember the name of the program. I couldn't find it in applications. I was a total blank. I don't know how I remembered it but finally got it.
This affects me severely and has been the most distressing of my many symptoms for the past 18 years. It's soul-destroying to have all this time which I could use to learn and grow or just become absorbed in something enjoyable instead wasted just staring into space or aimlessly browsing the internet to kill the hours. Just doing the washing up or tidying my table seems to be at the outer limit of my cognitive powers most of the time. It's cruel that this illness requires us to become experts in our condition to find treatments that can help us, but for many like me, it denies us the mental tools to do so.
That is so true Barrie. I have to rely on others to translate things for me (although I forget almost immediately) and to guide me if I want to try a new treatment.
Without the help of people on the forum I'm sure I would be in much worse shape than I am.
I was in the middle of doing a 4 year diploma when I got this illness, it affected my brain so much that when the end of the year came (I struggled at collage for a year with this, so spent 3 years there), I didnt remember anything I'd learnt all year (it was all just haze) and there was no way I was going to be able to pass my exams. I tried and tried to study but couldnt get the info stuck in my head and then ended up crashed due to that and completely bedridden... so there went my diploma. I had big plans for myself but there went all of them.
Ive had both my short term AND long term memory affected by this illness. eg the other day when it was fathers day, I found I couldnt remember my nieces names (one of those neices is 13 years old), I had to keep asking my own family members for their names. I hardly ever remember my grandsons name either thou he's now a year old. My memory is declining bad again (I picked it up some in the past with some supplements/vitamins.. B12 injections and also molybdenum helped improve my memory and got me able to function again with it)..
At one stage I was loosing memory on how to work simple every day things eg toaster (one day I couldnt cook toast as I couldnt remember how to, couldnt remember what thing one cooks it in), I forgot how to put petrol in a car, I even forgot what a stop sign was for and hence was driving throu those. I now dont drive due to that). My worst memory incident was getting stuck in a room as I forgot that rooms have doors (and was looking for a way out throu the ceiling).
I are not capable of even watching TV all day as its too hard on my head. I prefer to watch short episodes of things on DVD which were in the past on TV eg an episode of The Adventures of superman (something easy and short to watch). Movies take a lot of concentration and focus and I cant always watch them.
What I usually do all day is Im up and down.. up doing sitting activites eg online then back to bed (brain resting, often doing not a thing at all) then up again to do something then back to bed.. I do that all day going between sitting activities and being in bed resting. Im about to go back to bed now and watch a short episode of something. (My average movie watch is 1 per day thou some days cant even do that).
Gee...I really thought my brain fog was sever than most you, boy am I wrong. I have brain fog but not bad enough were I can not function. I mean I can manage a restaurant and I am very sharp compare to my coworkers. I manage my coworkers, I tell them what to do so cognitive I think I am okay. Then again this is something I have been doing for a while so its second nature.
The only draw back to my brain fog is I can not learn fast enough. I must comprehend information provided on my own. I can not have someone teach or be spoken to of info. I can read a book and try to memorize. Like I said earlier in the post my short term memory just plain old stinks. However, my long term memory rocks. Only good if I constantly rehearse what I need to to know or else I forget.
What really holds me back is my lack of communication skills. While you were reading my post how many grammar error do you find?
Simple stuff I can not do like have a sharp intellectual conversation or write like a pro. If I can do that then I am gold.
I do have Parvovirus, CMV, EBV, HHV6 all IGG. I do have CFS that is for sure. Today I worked 12 hour shift. God dammm......all day on my feet. I am beat.
What do you all recommend? I can not watch tv all day, I need to support my family.
RedLineBoy how do you manage learning new skills? Or learning in general?
On my last foray into employment - working in the office at a special needs school - I had my lists of things I needed to do: my aide memiors if you will.
Each and every day I would need to consult them and each and every time I had to embark on new learning: more checklists would result.
Frequency of tasks - familiarity - barely made a difference when it came to filing, computer work, or telephone enquiries and dealing with the public.
There was a lot of learning by rote but it never really sunk in.
At University and before that at college it was similar in terms of learning new things but a little easier perhaps because it was something I was really interested in and I had specific help - as a disabled student.
But regurgitating knowledge and transfering from brain to essay was bloody hard. So I had the Uni employ effectively a 'study-buddy' in my case a Phd student who would listen to what I was trying to impart and help me get it down in some sensible order so that others might also understand.
I think familiarity maintains cognition to an extent. Before I left my career role in Private Banking, but when I had a diagnosis of ME, I was better able to manage cognitively. Being forced to leave those surroundings, that environment, has had an effect.
Then again, things got so bad - as a result of the condition itself and/or the stress of having the condition and it not being treated as effectively as I had hoped and/or my lack of coping ability - that I could no longer perform to an accepted standard: despite downgrading my responsibilities and moving roles.
When you start forgetting things it is scary: for you and for your employer. When you start making mistakes and lose your ability to be reliable and responsible: your employer tends to become alarmed.
My directors were really very good but then I consider myself fortunate compared to other patients I know. They could see me falling about, not being able to speak clearly, making errors that I had little or no control over and that were very unusual for me to be making: in short they knew something was amiss. Hence the pension I guess - though I'd like to think I was also a rather good employee for 14 years.
Cognitive issues are well recognised as part of ME - presuming you meet the other criteria of course and other explanations (as much as possible) have been considered and excluded). What we don't yet know is if the cognitive deterioration is a result of 'fatigue' or something more specific.
I have adjusted my lifestyle markedly in the last decade. Made some drastic but necessary changes. I am able to manage periods of difficulty - I can do other things and then return to the task at a later date. But that isn't/wasn't possible in any job I have had before or since my diagnosis.
Re: Television and Films.
I tend not to watch TV - can't stand all the breaks as it interrupts my ability to follow plots etc. and I don't now have a TV licence or TV come to that. I watch films and DVDs only now through my PC and monitor.
I know with modern things like SKY you can pause and reply and all that nonsense; but I like being able to choose what I want to watch, how I want to watch it and when I want to watch.
I find watching a film of my choice enables me to relax in a way that some find a relaxation tape can. I effectively 'switch off' from my cares and worries.
Doesn't have to be for the duration of a film that I watch; I often only view for 20-30 minutes and have a break: unless it is a special event of the day and I'm watching something new for me, like:
That my very kind little brother has just 'burned' for me
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