Today my therapist suggested I do something indulgent since I’m such a hardass on myself and an obsessive weirdo about reading every article/blog/Facebook post in the world that might have ANYTHING to do with getting me better. This sucks up the majority of my time and energy every day, causes my phone to be continually on the edge of dead, my eyesight to be blurry, my hands to lose all blood (holding my phone up because my circulation is shite) and a WiFi source to be permanently sitting next to my heart, which just can’t be good.
79 open tabs on my phone. I want to read *ALL* the things!
I said, when I was a workaholic, I always wanted to indulge in a day of sitting around, reading a good book. Never once in almost two years of being housebound, have I just relaxed with a good book. I actually can’t believe that. I’ve never once sat on the couch and watched a Star Wars marathon (or Alien/Bourne/Godfather/Terminator or other fun movie marathon). I’m regimented about my schedule and have a scary addiction to the internet and research.
So, baby steps: for the next week, I am going to check Facebook once a day. I will still read my articles and texts and emails, but Facebook only once a day. If I’m really brave, I’ll try to relax on the articles, too. And then maybe try going a whole day without Facebook. I might even pick up a good book. DUH duh duuuuhhhh ….
Wish me luck.
Rag and Bone Shop of the Heart 
LUCKILY. I WAS NEVER A WORKAHOLIC! I’M AN AVID REDER & A NIGHT PERSON WHICH IS WHEN THE GOOD BOOK COMES OUT–I CONCENTRATE SO MUCH BETTER IN THE WEE HOURS!! I DON’T KNOW WHAT I’D DO IF I COULDN’T READ! BUT FB & EMAIL DO TAKE UP WAY TOO MUCH OF MY TIME & SURE CAUSE BRAINOG TO SET IN–MOST DAYS THERE’S NO WAY I CAN KEEP UP WITH ALL THE INFO OVERLOAD–CAN’T CONCENTRATE OR RETAIN! SO YES, GOOD LUCK! I’M JUST READING THE 8TH BOOK IN THE ”OUTLANDER” SERIES. LOVE IT.
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BJ, don’t get me started on a book serious unless you REALLY love it… Is Outlander worth it? It’s now popped up in my life three times since you wrote this comment, so I feel like the universe is telling me to read it, but I own hundreds (literally) of unread books… I shouldn’t buy another! 🙂
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E.M.–THIS IS THE ONLY BOOK SERIES I’VE ”REALLY LOVED” & CERTAINLY ENUF TO READ 6000 PGS A 2ND TIME! HISTORY IN THE 1700’S STARTING IN SCOTLAND, NOW IN THE U.S. DURING THE FIGHT FOR INDEPENDENCE, A BIG, TALL, RED HEADED SCOT MEETS AN ENG LADY DOCTOR FROM THE TIME AFTER THE 2ND WORLD WAR, WHO SOMEHOW ENDS UP GOING THRU THE ”STANDING STONES” IN SCOTLAND & FINDS HERSELF IN THE 18TH CENTURY AMONGST ROUGH FIGHTING MEN IN KILTS, LAIRDS IN CASTLES, ETC! HERE SHE MEETS THE TRUE LOVE OF HER LIFE! SHE HAS TO ADJUST HER DOCTORING SKILLS TO THAT BACKWARD TIME & USES ALL SORTS OF PLANTS & UNIQUE WAYS SO SHE CAN STILL BE A HEALER & ESP AS SHE FOLLOWS JAMIE DURING WAR TIME. IF U LIKE PASSION ,A GREAT LOVE STORY (OR 2,) HISTORY, FACINATING CHARACTERS, WITH A LITTLE TIME TRAVEL THROWN IN FOR GOOD MEASURE, I ASSURE U, U WILL ALSO BECOME A FAN OF THESE BOOKS. THERE R MANY AROUND THE WORLD WHO LOVE ”JAMIE & CLAIRE FRASER” . DIANA GABALDON STARTED OUT JUST TO SEE IF SHE COULD WRITE A NOVEL, WHICH BECAME A BEST SELLER & PEOPLE KEEP CLAMMORING FOR MORE, TO THE POINT THEY R NOW DOING A TV SERIES CALLED, ”THE OUTLANDER”. SHE DOES A TREMENDOUS AMOUNT OF RESEARCH FOR EACH BOOK BUT THE WAYS SHE WEAVES THE STORY LINES THROUGH HISTORY IS UTTERLY FACINATING! GET YOUR INTRO TO JAMIE & CLAIRE AT THE LIBRARY, PERHAPS & I’M SURE U WILL BE HOOKED! I’M FINDING HER NEWEST BOOK REALLY EXCITING & ENTERTAINING–DID I SAY SHE ALSO THROWS IN LOTS OF HUMOR?? A BOOK CLUB? GOOD IDEA!! THESE BOOKS WILL DEFINITELY KEEP YOUR ATTENTION, EVEN IF ONLY FOR SHORT SPELLS OF TIME. THEY CAN BE PICKED UP AT ANY ONE, BUT I HIGHLY RECOMMEND BUYING OUTLANDER 1ST TO WHET YOUR APPETITE–SHE CERTAINLY NEVER STARTED OUT TO WRITE THIS VERY LONG SERIES & EACH ONE LEAVES U WANTING MORE–& SO U WAIT 4 YRS FOR THE NEXT ONE TO COME OUT!! LOL. BUT IT WILL KEEP U GOING FOR MANY MONTHS TO READ THE 1ST 8!!! YES, THE UNIVERSE MAY WELL BE TELLING U TO READ IT! FRIENDS INTRODUCED ME TO THE 1T ONE & THEN WHEN I MET LARRY, HE HAD BEEN COLLECTING THE WHOLE SERIES, SO I CARRIED ON FROM THERE. AS I SAID, WE DECIDED TO RE-READ THEM THIS YEAR TO READY OURSELVES FOR HER LATEST THIS JUNE. IT’S BEEN A GREAT EXPERIENCE. THEY R HARD TO PUT DOWN!! BJ. TALK ABOUT LONG POSTS!
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Wow, you should copy and paste this and put it on Amazon add a review! Such a glowing review! Ok, ok, you’ve convinced me. I’m a sucker for Scotland. If only we could hear their accents… hmmm…. maybe they have a recorded version. 😉
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ELIZ–WHEN I READ THOSE BOOKS, I FIND MYSELF THINKING IN A SCOTS ACCENT! I’VE LEARNED SO MUCH ABOUT THE HIGHLANDER’S WAY OF LIFE, ALL THEIR TRADITIONS, ETC. BEEN VERY ENLIGHTENING. I HAVE SCOTTISH IN MY GENES & WHEN I HEAR THOSE PIPES, IT’S SWEET MUSIC TO MY EARS–STIRS MY BLOOD! HAVE ALWAYS WANTED TO VISIT–BUT SEEMS EVERYONE IN MY FAMILY MAKES IT THERE BUT ME! COULDN’T CLIMB UP TO THOSE CASTLES NOW.
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BJ, I love Scotland, but the worst bloodless, freezing Raynaud’s feet I have ever experienced was walking around the castle in Edinburgh. My husband couldn’t believe what happened to my feet. We kept having to sit down and take off my boots and hold my feet under his shirt, against his belly so I could get some blood back and keep on walking. It was wonderful, but, you know, there’s something to be said for being home, warm and cozy. 😉
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LIZ–CAN U IMAGINE LIVING IN THOSE CASTLES? A LOT ABOUT THAT IN THE 1ST BOOK. AT LEAST U GOT TO SEE IT. MY DAUGHTERS R GOING THERE IN AUG FOR THE FRINGE–THEY R BOTH VERY INTO THAT, ESP MY ELDEST–SHE’S BEEN IN & GONE TO MANY PLAYS AT THE FRINGE IN EDMONTON–WHCH IS THE 2ND LARGEST, BTW.
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Oh, how funny! I just realized that I haven’t read a great book since I got sick! A huge part of that is massive brain fuzz from my meds, but part of it is like you, Liz, feeling the need, that if I’m reading, I should be reading great big tomes like “dealing with Food allergies.” So, instead, I play video games (to procrastinate and when my brain us too fried to do anything else). Just the other day though, I realized that I AM allowed to enjoy myself, that being sick needn’t be a full time job. I’ve been thinking a lot, and while I still need a diagnosis, and I still need to go to all those doctor’s appointments, I’m going to try a bit more ‘living’ as a part time job. And wouldn’t you know it, Bonnie- I bought ‘Outlander’- the REAL book, not even an e-book. I need something real to sit in the shade and read on a nice summer’s day.
Karen
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YOU WILL LOVE IT, KAREN. WARNING: THEY R ADDICTING. WE HAVE ALL OF THEM & JUST FINISHED READING THE 1ST 7 FOR THE 2ND TIME. I WILL DEFINITELY HAVE WITHDRAWL WHEN I FINISH THIS NEW ONE, THEY TAKE HER 4 YRS TO WRITE–SO LONG & SO FULL OF INFO. ENJOY–LET US KNOW IF U LIKED IT.
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I love these sort of worlds that you have withdrawal from!
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Karen, exactly! Being sick and trying to find a way out of sickness is my full-time job. I better take a vacation now so that when I’m well enough to work, I have some rest time under my belt. 😉
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Karen, it’s true! Being ill, researching illness, managing insurance, going to doctors, trying to keep your head above water at home and with family…. it is all a full-time job! I sometimes wonder how I worked up to 60 hours a week. When did I do anything else? Well, I didn’t. That’s part of the problem. So, let’s read some books. How is Outlander going? 😉
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I’ve gotten caught up reading “Full Catastrophe Living” by Jon Kabat-Zinn. I was told that if you read one book on meditation for pain relief, this is the one to read. So far, I’m finding it an easy read, and very, very informative. Not exactly relaxing though, nor taking time away from ‘being sick’. On the other hand, it is a step towards ‘living well’., so that’s good!
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LIZ, I’M STILL MOURNING THE LOSS OF MY ”OUTLANDER” FAMILY NOW THAT I FINISHED THE LAST BOOK & HAVE TO WAIT ANOTHER 4 YRS! BUT THE T.V. SERIES IS STARTING ON STARZ & ALSO SHOWCASE. AUG 24! THE STARS R YUMMY & I CAN’T WAIT. LOOKS AWESOME; NOT ONLY THE ACTING BUT SCOTLAND’S SCENERY IN THE HIGHLANDS. WOW!! CHECK OUT ”OUTLANDER” ON FACEBOOK OR JUST GOOGLE IT. BJ.
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I think your therapist is a very wise person! 🙂 There are several things I credit for my partial recovery from ME, but 2 of the biggest are eating well and Pacing activities. Pacing sounds dead easy but is the hardest thing I’ve ever done in my life.
Like you I like to be orderly and ontop of things. So I decided what my activities were for the week and made up a schedule. I was allowed a certain amount of time online each day and I set a timer – when the timer went off I HAD to get off the internet whatever I was doing and switch to another type of activity (or rest).
By having a schedule I made sure I had room for all the things I had to do (cooking, bathing etc.), health-related stuff like research, social activities (Facebook or phoning friends etc), hobbies, and rest/meditation.
I kept my schedule up religiously every day for a whole year before I started to have more energy but it worked for me 🙂 Before that I could spend 5 hours a day online then wondered why my brain was fried, I felt sick, my throat was sore and I couldn’t sleep
Before getting ME I read a LOT of books, but now never read at home. It seems a waste of my energy for some reason! So my hobbies have to include a goal – I crochet for charity which helps AIDS orphans and I enter photography competitions (which I never win lol!) which is my goal when taking pictures. I go to a cafe once a week for 90 minutes and that’s when I do my reading now – I just can’t seem to do it at home.
Sorry for long post!!!
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READING FOR ME DOES HAVE A GOAL–.TO GET TO SLEEP. I HAVE READ BEFORE I TURN THE LIGHTS OFF FOR AS LONG AS I CAN REMEMBER–IT RELAXES ME, BUT ALSO GIVES ME GREAT ENJOYMENT. OF CORSE I ALSO READ WITH THE GOAL OF FINISHING YET ANOTHER BOOK!
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Pre-illness I used to be like you Bonnie and read every night before going to sleep. But reading is so difficult now with my poor brain function it’s lost most of its relaxing properties for me 😦 I listen to a talking book on my ipod now before sleep and it’s great 🙂
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AFTER MIDNIGHT IS THE TIME OF DAY I’M THE MOST ALERT, SO LIKE TO TAKE ADVANTAGE OF IT. AS FOR NOT PACING; SO MUCH OF MY DAY IS SPENT IN A FOG THAT WHEN I DO GET OUT DOING SOMETHING, I HATE TO STOP IN CASE I NEVER GET BACK TO IT AGAIN! LOL. IT’S ALSO HARDER FOR ME TO READ TEACHING MATERIALS–A GOOD STORY IS SO MUCH EASIER & I DON’T HAVE TO REMEMBER THAT. AS FOR TAPES–ATTENTION SPAN IS TOO SHORT OR I’D JUST DRIFT OFF & END UP FALLING ASLEEP!
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JUST THINKING; IT’S INTERESTING THAT READING IS THE ONE THING THAT HAS REMAINED CONSTANT FOR ME, ALTHO EDUCATIONAL THINGS R HARDER & I DEFINITELY BOG DOWN ON THE COMPUTER! BUT WHEN I 1ST GOT SICK, I WAS READING EVERYTHING ON CFS I COULD GET MY HANDS ON PLUS DOING THE SAME WHEN I FOUND OUT ABOUT ESSENTIAL OILS! THE BIGGEST FRUSTRATION IS BEING ABLE TO RETAIN SO LITTLE OF THE AMAZING AMOUNT I READ!!!
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That’s the frustrating part for me, too, BJ. I’ve started taking notes, like I’m back in college, but what’s the point? I’m never going to read my notes! It’s all a bit much.
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I downloaded a few books a few years ago and still haven’t listened to them!! My husband and Mum keep gently encouraging me to close my eyes and listen to the stories, but I still rabidly read (picture bulging eyes and foaming mouth and skull cracking open as I troll through millions of open tabs with bloodless fingers… 😀 ).
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First, please don’t apologize for your “long post”. I learn so much from the comments of others, and this is an understatement with yours! I too was a workaholic and health nut. Thankfully, I have learned to eat even healthier now, but my real issue is this whole pacing thing. Yeah, I haven’t master that yet – not even close. That’s where my perfectionistic workaholic tendencies are really hurting me. I constantly ignore my body’s needs, pushing myself to finish what I’m doing. Part of it is out of sick, twisted defiance, but it’s mainly because I feel like I HAVE TO finish what I’m doing! What I am finally learning is that pushing myself beyond what I can do is making me MUCH worse. In fact, I have been getting steadily worse every year for 6 years. Each decline can be traced back to a time of extended pushing past my healthy boundaries. Thank you for explaining the art of pacing in a way that I finally understand ❤
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Kristina, I am exactly the same- MUST FINISH…. and I, too, have steadily gotten worse. Let’s rein ourselves in this summer. We should all start a book club. 😉
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I’ve thought a lot about you saying you only started to improve with forced rest every hour or two… I do love a schedule, so this is what I should do.
Part of my problem is I don’t have hobbies anymore and my voice is so weak I find talking on the phone/skyping hard and that would be my first choice of alternative activity.
But you’re exactly right- brain fried, sore throat, insomnia, headaches, blurry vision… it’s not worth it. Where has it gotten me so far? An encyclopedic knowledge of illnesses, great. I will try to build some down time into my down time. It’s actually so important! X
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I struggled with the ‘rest’ part of the schedule I must admit – I still can’t meditate, it bores the arse off me although in my initial recovery year I did it 3 times a day every day 😉
Crocheting gives my hands something to do and helps with my ‘wired’ energy feelings, plus I can watch the Soaps on the tv at the same time – it’s actually very relaxing. I find with my talking books I have to wear personal headphones and have the volume up quite high so that it drowns out my thoughts and eventually my brain will switch off – couldn’t sleep without my talking book! It also has to be a very light story – nothing too dramatic or with too many characters (currently listening to a book about near death experiences which is fascinating).
How about taking up knitting or embroidery (I went through a phase of doing tapestry and made a lovely cushion cover lol!). Plus, we need to get you some boxed sets to watch on the telly – Buffy the Vampire Slayer got me through some horrendous months, and now Teen Mom and The Real Housewives are the highlight of my day 😉
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I’ve thought a lot about you saying you only started to improve with forced rest every hour or two… I do love a schedule, so this is what I should do.
Part of my problem is I don’t have hobbies anymore and my voice is so weak I find talking on the phone/skyping hard and that would be my first choice of alternative activity.
But you’re exactly right- brain fried, sore throat, insomnia, headaches, blurry vision… it’s not worth it. Where has it gotten me so far? An encyclopedic knowledge of illnesses, great. I will try to build some down time into my down time. It’s actually so important! X
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Go for it! 🙂
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It’s hard! 😉
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Ah, that’s the truth. Mind you, there’s something they say about that too! I hope it’s going well. 🙂
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Enjoy it, really really enjoy it. I’ve had to be a stickler and limit my internet usage so as to be able to work on this poetry book and I’ve also had to be regimented about allowing myself watch crap TV and relaxing in that way along with meditation. As for all the articles re getting better, don’t worry, if something big happens we will all know about it…. now go read, enjoy, and be over-indulgent! xx
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Ok, I needed to re-read your comment to strengthen my resolve. I was good for a few days and then fell back into my old ways yesterday. So, back to trying to unplug a bit. Imagine, I might even write poetry again if I just relaxed the analytical side of my brain! Hope the book is going well! X
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Sending you lots of great wishes.. It’s not the falling down that matters, its the getting back up, again, and again, and again.. together we stand! xx
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Mná na hÉireann !! 🙂
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Sin é!! xx
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Good luck! I think we all have an internet addiction these days, I went internet free for 3 days earlier this year and it felt great! It only happened because I was too ill to even look at my screen but every cloud has a silver lining and all that!
Xx Hayley-Eszti
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Oh H-E, I’m sorry you were so ill you couldn’t look at a screen, but thank god it only lasted three days at that severity. I’d love to unplug completely for a week. Are you old enough to remember days without computers and phones? What did we do? 😉
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I really relate to this, and all the comments! It’s all about balance, but that’s so hard to achieve! I always end up spending so long reading blog posts, researching ‘cures’ and writing my own blog articles. It takes me forever because I work so slowly, and I never feel ‘finished’ – I always want to keep going, keep doing more. But I need to remember that:
*Connecting with other ‘spoonies’ is important. Spending most of your day doing so is not.
*Expressing yourself through a blog is helpful, stressing about it and spending hours writing when your brain is fried is not. (It’s also useless as I usually have to scrap anything I’ve written when under the brain-fog.)
*Researching and taking control of your medical treatment is vital. Single-handedly finding the cure for CFS is unrealistic. (and there are other – more qualified – people out there doing just that)
And so, I am going to finish this comment, then go eat a snack, do some light housework then a meditation!!!
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Great pointers! I couldn’t agree more. I am terrible about pushing through- mostly reading articles and blogs etc.- and it dies backfire because I don’t remember anything I read! Let’s dedicate the rest of the summer to relaxing and healing. 🙂
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I saw that you said you had Raynaud’s! I do too- but other than the doctor who pointed it out, nobody seems to think it’s significant- it’s a bit of a ‘who cares’. Yet, I’ve noticed others with mast cell and immune problems often have it. There must be a connection… Other than being painful and irritating, have you ever had a doctor tell you anything important about it?
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Gosh! I’ve been online for 2 hours trying to catch up. Same issue. When I first got ill I asked friends to bring me funny books and tell me their fav funny movies to watch. I actually remember just two days out of the last 3 years of being more or less housebound where I just watched a movie during the day or read. I spent so much time dealing with insurance company battles, forms, ordering and researching supplements and docs etc . I felt like I never had a day switched off for just myself. With kids I have to constantly plan their activities or do something with them when I can. September is like New Years resolution time for me as kids go back to school , so just like last year I resolve to pace and enforce rests and stop activities when not finished and use the timer when online and pick days where I do nothing and be happy if I just get one task done a day (that helped a few months ago).
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NOT GOOD–GIVES YOU TOTAL BRAIN DRAIN! NOTHING GETS ME MORE UPSET THAN TRYING TO DEAL WITH RED TAPE, ETC. I HAVE NO TROIUBLE PACING EXCEPT ON GOOD DAYS WHEN I TRY & DO AS MUCH AS I CAN BEFORE THE ENERGY LEAVES AGAIN–SCREECH!! FOR ME, IT’S CHECK MY EMAILS, SOME T.V.. THEN MORE COMPUTER–I CAN GET SWAMPED BY EMAIL & FACEBOOK. THEN I WATCH MY FAVE TV SHOWS & THEN GET INTO A GOOD BOOK UNTIL 3 A.M. WHEN MY BRAIN IS SO MUCH MORE ALERT THAN THAT TIME DURING THE DAY!! GOOD LUCK, GIRL; AFTER 12 YRS, I HAVE MY ROUTINE DOWN. THEN I HAVE THE ODD DAYS WHERE I GET TO GO OUT OR ACTUALLY HAVE SOME VISITORS!! LOVE, BJ.
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My recent energy surge. I don’t know where else to post so thought I’d share here. This year vs last year it seems I have double the energy though it’s all happened in the last 6 months Ie I can socialize 5 times a week for up to 3 hours vs twice week for 1-2 hours. I can stand on my feet for maybe 10 mins though haven’t timed it, vs maybe 3 last year, but don’t feel as dependant on my shower stool or rolling tractor stool to get around the kitchen. I recover from setbacks within a day instead of a week. I am happier, less moody. I can walk 2000 steps if I haven’t overdone it mentally or been on the computer, though still use a scooter outdoors. I got up early (brought my daughter to first day of school for first time ever (huge emotional day) AND went for coffee AND went to the park after school in one day without a setback. Can’t do every day but one day a week doesn’t kill me if I get up early where it used to. All good news, so what’s helping? Not sure which exactly which the most but the last 4 months when the noticeable energy surge came I’ve been doing b12 shots methyl cobalamin at home (not cyanobalimin as I have MTHFR) 1 and 1/2 cc every other day as prescribed by old doc. I also have been treating what my new doc believes Is the root cause – the pituitary and adrenals – via plant based medicine – endobiogeny – google it. I see him via skype. Google full spectrum health centre for him. He is the master trainer of people in this evolving field.
I had experienced a surge in energy BEFORE either of the above treatments in Feb but had a minor setback, and I believe it was the osteopathic treatment – the Perrin technique that was kicking in and helping. I think it’s the expensive combo of all 3 treatments . See theperrinclinic.com. I am the first US patient. I set up a workshop for dr perrin in NYC after seeing and hearing about fully recovered patients in UK and meeting one in Ireland who had been paralyzed and is now back working part time , so now there are now a bunch of trained physicians in NYC.
Marie, if you can make it to Dublin the Perrin practitioner there Andy smith is amazing and cured his son of ME who now has 2 jobs and a family.
Hope you can share this message on as I am not very social media savvy and have so little computer time in my daily budget.
If anyone knows a mom with young kids who is recovering or where to find one, PLEASE advise, as this is the biggest challenge for me- how to pace and deal with the emotions having young kids
Xo to all.
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