What do you do when you crash?

[andreamarie]

Forgive me if I'm in the wrong place on Forum, but I'm only a day old.

What do you do when you crash? I do take to my couch; it's very comfortable and usually look for a movie on TV. I don't consider cable a luxury although I don't have premium. I know this is hard to accept, but I don't have cognitive problems. It took six months for the first doc who treated me to believe it. I think this works against me when I crash though. E.g. right now I'm typing on laptop, which takes more energy than watching a movie.

I've learned to turn my phone off and find at night I'm better in the dark. I use battery operated candles and if I read, wear reading glasses with led lights built in.

I take a hot bath about three hours before bedtime and that helps with the aches. I wish I had something else that I could do that wouldn't tire me more.

 

[Jody]

Hi Andreamarie,

Welcome to the forums.

I get bad cognitive problems, it's probably one of the worst symptoms for me.
But if you don't get them, that is good!

What types of symptoms flare when you crash? If you can describe that a bit, it will help to make the right types of suggestions for you.

 

[andreamarie]

My worst symptom is acute fatigue. I have a small apt; I can see my dining area from my couch, but it can be an effort to get there. I know I'm going into a crash when I have a strange muscle feeling. Not as bad as FMS; I get that when I'm over the edge. And I try so hard to avoid a crash, but after fifteen years I still get them. I have severe post exertional fatigue, but the same activity doesn't always trigger the same fatigue. The worse the crash, the worse the sleep that night. I adjust my sleep meds accordingly. Thank you for your responses. Not just to me. I've noticed you are very caring to everyone.

 

[Jody]

Andreamarie,

We all just do what we can to take care of each other, eh?

I know what it's like to deal with these awful symptoms. It is very easy to care about what happens to you.

Are there any treatments or supplements that seem to help you?

Vitamin D helps me with that gotta fall down feeling.

Do you try to build rest periods into your day? Or are you laying down most of the time, and so this question doesn't apply.

Have you looked into possible dietary sensitivities?

I go to a naturopath who has been a big help to me. Have you been to one?

 

[Robin]

Hi! I'm new too! I'm in probably the worst crash I've ever had!

I cut back on everything I possibly can during crashes and focus on resting and staying calm and relaxed. I have cognitive problems but they've improved a lot over the years. So, I think I know what you mean -- it's hard to stay mentally stimulated when you can't do anything. I listen to audiobooks and NPR podcasts, and I borrowed someone's laptop and downloaded my Steam account (I love indie games) and somehow engineer myself with pillows so I can play games while lying flat. That seems to pass the time without straining my energy reserve too much.

I try to get a little fresh air and sunshine every day. I make a cup of tea and sit outside with my dog, even if it's cold. It helps my mood a lot and I really look forward to it. I miss seeing people the most but I have to limit visits and phone conversations because, for some reason, they really make me tired. I have my phone ringer turned off too! But not just at night. ;-)

I have really tender occipital lymph nodes and I bought this little horseshoe shaped pillow filled with rice. It's micro-wavable and I heat it up and wrap it around my neck and it helps a lot with the pain. I don't have a bathtub or I'd take hot soaks like you.

Well, that's all I've got (not much). I hope you feel better soon!

 

[Lucie]

For a crash..

Dear Andrea,

Sorry to hear you're in a crash. Here are a few things that have worked for me. It would make me happy if even one could help a little bit.

First of all, I have put things in my bedroom that are very soothing visually and taken out things that are not. Everything is in soft muted green and cream color (old stuff, but calming). I keep some very, very, very soft and slow music in my CD player and keep the remote by my pillow (for the times I can stand to hear music).

And then, my best coping tool is that I day dream. I was a writer (including some fiction) before I was ill, so I write stories in my head, and enjoy them. (Sadly, because my fingers get very weak I can't write them down.)

Also I will imagine pictures I would paint or gardens I would plant. I find that I can almost get myself in a trance state by imagining - and I believe it helps me recuperate faster.

At other times, because my vision is usually affected also and I can't read too much at a time, I will read a couple of paragraphs of some difficult to absorb and retain material, then try to see how much I can remember.

Eating foods that are very easy to digest also helps me. Keeping water and food on my dresser saves me trips to the kitchen.

I wear sunglasses and earplugs around the house.

Staci Stevens (The Great) advises doing any activity you must do sitting down when possible and in very short intervals.

I hope you are functioning at a higher level very soon.

~Lucie

 

[andreamarie]

All good suggestions. Jody, I haven't been to a naturopath. It is something to consider. And last night wasn't bad, the aching passed. I think I went a little crazy when I found this board and just overdid it. I do have a vit D deficiency and am now on a prescription D for two months and then will be tested again. I do try to take specific rest periods after activity; I am not bedbound. The one thing I'm not disciplined enough about is getting to bed on time. I love the night, I always did. Concerning the naturopath, what specifically did he/she do for you? I ran into serious problems with my Crohn's yrs ago with an Environmental Med doc who should have known better and have been gunshy ever since.

 

[Jody]

Andreamarie,

What did she do for me?

Long list. Let's see.

I had problems with both arms and legs, and feet and hands, muscle and joint pain that was disabling. That's not entirely gone, but mostly gone. Doesn't get in my way much at all anymore.

When I first saw her my cognitive problems were so bad, I couldn't remember anything she said (had her write down everything for me to take home). Couldn't carry on a real conversation as my brain was so slow and fogged, my thoughts would ... disappear.

Had OI real bad. Couldn't stand for very long. Lotta panting for air. Navigating across a room was exhausting, always felt like I was going to bump into things.

So exhausted after being driven to her office 20 min. from my house the first few months I would spend the next 2 days in bed.

She put me on a tincture full of natural anti-virals and adrenal supports, omega 3 oil, got me dry skin brushing with a loofah, got me on whey protein, B12, and other supplements.

Got me using Lymphogen which is an ointment that promotes lymph movement.

She had me email her weekly reports on my progress. First months were about 3 sentences that would leave me exhausted. She encouraged me to write her anything and everything (knowing I had used to write but hadn't in some years). Within 6 months I was emailing her huge emails that helped begin to open my brain again, now that my body was healing. I wouldn't be here on the net were it not for her.

Acupuncture once a month, which has I think made a big difference overall in my stability and greater stamina.

That's all I can think of for now.

A good naturopath is a beautiful thing.

 

[Jody]

Andreamarie,

How much D are you taking a day?

I assume it's D3?

 

[andreamarie]

I don't know if it's D3 because it's a scrip. I take 50,000 units twice a wk for two months and then get tested. I'm at high risk for D deficiency because of cholestyramine I take for bile salt diarrhea for Crohn's, Crohn's itself, and also because I avoid the sun. I have every risk factor for melanoma and then one (both parents had it.)

I used to see a crackerjack nutritionist who's since retired. Her husband is an immunologist. She did a lot of different diets with me for the i.c. I didn't respond to any of them. I'm going to try to find her and see if she can recommend a nutritionist and possibly a naturopath. Two alternative docs nearly did me in because they had bizarre ideas about Crohn's so I'm nervous.

Trust me, my Crohn's remission is a miracle. No one understands why it happened. That's one thing that gives me hope with CFS. I also had a Sjogren's remission, which is rare.

I wrote for a living for ten years also. Mostly medical copy for the lay person.I had to leave teaching because of the i.c. and took the professional writing program at Harvard so I could work at home.

 

[bee33]

Lucie, I wanted to chime in to say you're not a nut-case (or we both are), because when I'm too tired to focus on a book and the TV is boring me, I just make up my own stories too. I'm not in the stories myself, it's as if I was writing a screenplay. I can pick up a story at any time from where I left off.

I don't have a lot of cognitive problems either. I do get so exhausted that I can't focus at all, but if I'm in my more usual daily-fatigue sort of state, I can usually still read or do crossword puzzles. I just can't interact with other people, which I find much harder than just concentrating on one static thing. And I can't write very well, not with the finesse I would need to get my thoughts down if I were to try to write a story.

 

[Lucie]

This is a beneficial thread

I'm glad you posted Andrea, and very glad you are still able to keep up with your writing. Interesting that we ahve a cluster of writers here.

And Jody, I appreciate your info. How would one go about finding a good naturopath?

Lucie

 

[andreamarie]

I have not been able to write professionally for fifteen years. My job involved a lot more than writing. I don't ever want to write for a living again; there's a reason the word "dead" in "deadline" and I had tight deadlines. I still enjoy writing for myself.

 

[Jerry S]

Deadlines

I have not been able to write professionally for fifteen years. My job involved a lot more than writing. I don't ever want to write for a living again; there's a reason the word "dead" in "deadline" and I had tight deadlines. I still enjoy writing for myself.

Consider this: Simultaneous multiple deadlines!

Thank goodness that's behind me now. When I get nostalgic for my old job, I remind myself of this.

What did Dilbert say. "It's the goal of every engineer to get through his career without being blamed for a major disaster."

I'm happy to say I met my goal.

 

[jackie]

I'm LOST! can someone re-direct me to correct thread?

Hi guys....don't want to be a highjacker so am hoping one of my "friends" here can RE-DIRECT me, PLEASE!

I figured it was ok to start here since I recognized the word "crash"....and I've CRASHED badly (antivirals not doing their job, have shingles and shouldn't!, wrote/read too much blah blah blah! I never learn?!) and can barely understand what I'm reading etc.

Just rec'v test results in mail with no explanation. Trying to find out if my cortisol levels are LOW or OK? Simple, right? 4.9 ug/dl - one test only - probably wrong anyway (doc ordered blood draw - SHOULD have been multiple saliva tests, I think? blasted HMO!)

Will try for correct test next...but was wondering..... sorry about asking questions here - mem/cog probs!

really can't "go" anywhere on forum unless I memorize where things are....not even sure where to ask if any others have dr. chia for doc....think I posted other day in the wrong place?!

I was doing ok just yesterday......boohoo!

Oh, THIS is what I do when I crash...."I STUMBLE...THEN I FALL INTO A COMA" (feels like I'm almost there!)

formerly jackie

 

[leelaplay]

I like the thread andreamarie - thanks

What did Dilbert say. "It's the goal of every engineer to get through his career without being blamed for a major disaster."

I'm happy to say I met my goal.

ah Jerry - the little devil notices that you say 'be blamed for' rather than 'cause' ........interesting, very interesting-
(Arte Johnson if I remember correctly)

I am now about to reveal the depths to which I've sunk

I have become a bit of tv watcher! I've watched more tv in 8 years of ME/CFS than I had in my whole previous life. And no, I rarely watch edifying programs - I like mainstream adolescent pap - NCIS, Bones........and Bill Maher and Private Life of a Masterpiece when I can

I can't stand or sit up for long - I get wiped quickly. The flatter I am, the less energy used and the more my battery can charge - ergo - lots of couch time.

My visual processing seems a bit better than my audio - I can't listen to music anymore (which I love and used to have on almost all the time.....) as it's too tiring to process, and irritating as well. And audio-books are out as well.

I can't mediatate for long as it's tiring so I do little bits. Same with visualizing chi gong, exercising etc.

I can't talk on the phone for long as processing and participating in conversations ( listen, comprehend, scan brain, develop a response, open mouth to deliver it) is much more complex that I had ever realized pre-ME/CFS

I can't read complex info so no longer get the paper daily nor do the cryptic crossword to keep my twisted brain happy. Nor get good literature. Save mystery novels for bedtime when trying to read won't take the day's energy. Do look forward to them.

I can't knit anymore but have set up the wool so that it is like looking at a piece of art to me.


Okay - will stop with what I can't do; what I do do is

I do look out the window at the clouds.

I watch formulaic, predictable tv (still can't do the news or complex shows but working on it). When I'm really crashed, golf is quite lovely. (GOLF???!!!, I"M watching GOLF???!!!!)

I do 1 minute snippets of things throughout the day - meditate, chi gong, breath exercises, mini-exercise from the couch like leg lifts, crunches, raised arms....

I try to exercise my brain as well between rests - sudoku, free cell scattered throughout the day and now want to try the MS games Jerry referred to in another thread. - thanks Jerry! https://www.mymsmyway.com/mybraingames/index.php

I pat my dog and smile at her. Love helps a lot.

I tape all my TV so can skip through commercials and rewind if I want to try to get something I missed.

I think about food and spend the day getting up for a few minutes at a time to prep a lovely dinner. Somehow the act of nourishing myself and creating an ephemeral piece of art (my dinner) appeases some of my creative and healing instincts.

I phone or answer the phone every few days and talk with the people I love.

I take care of my herbs if I can or just look at them or smell them.

I find beauty healing or at least soothing, so focus on some in the house, outside, in my mind......

I love a lavender epsom salt bath so will try and see if I can do it that day (sometimes the heat intolerance is too much and can't do - but often worth a try).

I guess generally, I rest, am good to myself in whatever ways I can be, and have found the knack of generally not letting any negativity hang around.

oh - and for the last month, I check-in with the forum, try to digest the news if I can, and share community with quite an amazing bunch of people. This might not go over well with some of you Americans, depending on your politics, but I am reminded of the Bush statement

"like a thousand points of light in a broad and peaceful sky. ..." solely for the image it evokes for me. I have an image of glowing points of light dotted across the US, Canada, Australia, Tasmani, Ireland, Scotland , Britain, Germany.....


if

 

[leelaplay]

catch the life buoy

Hi guys....don't want to be a highjacker so am hoping one of my "friends" here can RE-DIRECT me, PLEASE!

really can't "go" anywhere on forum unless I memorize where things are....not even sure where to ask if any others have dr. chia for doc....think I posted other day in the wrong place?!

I was doing ok just yesterday......boohoo!

Oh, THIS is what I do when I crash...."I STUMBLE...THEN I FALL INTO A COMA" (feels like I'm almost there!)

formerly jackie

and who are you now Jackie - the artist formerly known as?????

When I get lost, I click on my profile name - it brings up my profile page. Then I click on stats; it includes posts I've made and threads I've started. I can then click on whichever I think it might be that I'm looking for. And voila -there it is.

Also, near the bottom of the page when you're writing a post, there's a box that says "thread subscription". I set mine to email me when there are new posts on a topic I'm interested in.

Hope those help! As to blood tests - I'm no good. Ours (in Canada) come with what we got, whether it's ok, high or low, what the 'normal' range is and explanatory comments.

if

 

[lostinthedesert]

Hi Jackie,

You sound like me when I crash. Both my brain and body go *Uflooey* and I can't deal with the world. I am am glad for this thread and waiting for my vitamin D3 to arrive to see if that will help.

I have at least a couple of types of crashes.

My worse crashes include bad brain, extra fatigue, light and sound sensitivity, vertigo, tremor, body temperature drop, nausea, worse MCS than usual (hard to believe but true) and more. These leave me flat out and I loose track of the days. When I can tell I have one of these coming, I muster the last of my strength to load up on provisions, medicines, ice and drinking water. Then I get to as safe a camping place as possible and shade the car the best I can because I know I'm not moving for a while. If I can drink, I take extra buffered vitamin C with calcium, magnesium and potassium. If my gut is off but I can still eat, I will eat extra yogurt or probiotics.

Lesser crashes where I am just very foggy and extra exhausted, I sit or lie down and listen to my little radio, best I can do in the car. Radio is nice because I can just lie there and even close or cover my eyes. If I am in a house, I may flail around on the internet but it is frustrating. I keep trying to tell my brain to wake up but it won't. I don't do well with television most of the time. If I am able to get up, I try to move around periodically just because I am afraid of atrophy.

Peace,
Susan

 

[jackie]

Thanks, my friend Islandfinn! Caught the life-line! I have recently learned to click on my "stats" as that is the only way I can remember what I've talked about and who I need to thank or respond to. Found the little thingy box and set it for instant email notification (started to type "GRATIFICATION" instead of NOTIFICATION! pretty funny - HA!).....but couldn't figure out how to tell it that I was interested in cortisol info! will work on that later.

I think today is maybe NOT the day to figure anything out! Do you have days when even the words/letters you see look like another language? seriously.. I keep trying to check my spelling?!....and now I'm sneezing, for God's sake!? What's THAT? I can't "catch" anything anymore....so what's this sneezing nonsense?

Going to take a break and come back another day! Thanks

Oh, Hi Lost! Glad I saw your post before I checked out! Yep...your crashes sound just like mine (WHY are "we" always surprised that "we" are all so similar in all things!)

Especially the part where you try to quickly "prepare" if you feel a crash coming on!? I used to have a horrible feeling of dread or foreboding in the hours before...it's rare now when I experience that - but with bad ones it still sometimes happen. My crashes come every few days (PEM) after I've done too much (like now!) and/or if my antiviral is not suppressing the viruses adequately and "allowing" Shingles to break through (like now!)

I have to tell you something, since you mentioned listening to the radio in your car...this past weekend I was not feeling well at all...and I began to talk about you and your situation with my husband (he concentrates on your getting into a "better place" every morning about 4:30am - it's just what he "does").

I was upset and said how I couldn't stand the idea that when you felt so bad (as bad as I was feeling - maybe worse!) and yet you had to try to get comfortable in a CAR?! I looked at him and his eyes were filling with tears! Once again...this is so wrong?!

Do you Lost, or you, Islandfinn sometimes feel better when you're laying absolutely FLAT?...not just reclining? another oddity - I simply can't listen to my once beloved music (any kind) anymore! just can't sustain listening to any? confusing.....

Happy to have my ROKU and Netflix today....since I can watch/listen very quietly.....when crashing

Thank you guys!

Emerging briefly as.....jackie

 

[lostinthedesert]

Actually I have a a station wagon so I can lie down in back. I have to lie down on a sight incline with my head up or things may start to spin. It also helps reflux.

Yeah sometimes music overloads my nervous system or just makes me sad. I either listen to talk or shut it off and listen to the birds and the wind.

At this point I am somewhat adjusted to the car except for the fumes. The problem I have been suffering with and chasing since April or May turns out to be a leaky gas tank - a new tank is on order but won't come in before I have to move back into the car. Looks like my old mechanics may have been thieves because it is a visibly obvious problem.

Lets face it, I have a tough situation but still better than the majority of people in the world. I have access to good food and water. I also have access to some medical care. Not the $$ type doctors but I can still go speak to a decent doctor, get basic tests and medicines. I also have a couple of old friends who actually believe me. They may not physically be around here to help me but at least I can phone them. Thanks for thinking of me and also thank your husband for his thoughts. I can use all the good energy I can get.

I kind of see all of this as a crash it is just that the degree varies. Living in crash...

Peace,
S