Push crash cycle, how to stop?

[taniaaust1]

There are posts in the lifestyle category of these forums that have many ideas on strategies, aids and pacing to make those necessary daily tasks a bit easier. I used to think I shouldn't use those kinds of things because I need to keep as active as possible to prevent decline, but after getting a shower stool, I realised that by making a task like showering easier, I then have more energy to put into other things and thus I can do more (and most importantly, I do actually do more, thus preventing the feared decline).

The quickest and most likely way anyone is going to decline is to make themselves actually sicker with the ME.

It's interesting how often people miss this concept. Yes you may become less fit by doing less but that being less fit is unlikely itself to make you ME sicker just as will being less fit likely to bring on cancer faster if a person has cancer? Nope . Does being less fit bring on MS faster if the person has MS? Nope. ME isnt about fitness and fitness doesnt heal ME.

 

[Strawberry]

Also a heart rate monitor may be a good idea to avoid getting your heart rate too high. And by high I mean over 100

Thanks for the reminder! I keep forgetting to get one. I keep saying I will go to an athletic store when I have a few minutes worth of energy (I have tiny arms and want to make sure one fits) and then I forget to go.

@@purrsian and @@TiredSam have some good suggestions. I'm less convinced than @@MikeJackmin about the value of psychological help. Its so hard to find someone who actually understands that they can't make us better by "changing our cognitions".

But for instance someone that lost a leg or arms in the gulf war, they can learn how to cope with the disability. If a counselor told me to exercise I'd walk. But I could cope better. Still, I hope it doesn't come to counseling.

Resting doesn't have to mean doing nothing, unless you're already in a crash and can't even think. Between physical activities, I watch TV or movies, play simple computer games, do Sudoku puzzles, etc. As long as I'm not crashed, I don't find it at all unpleasant to rest.

Maybe I am constantly in more of a crash than I thought. I rest on the couch lots, with only music to listen to. Maybe sort mail, or my facebook MCAS group or look at pictures of rocks. (yeah, I love rocks) But it no longer maintains me, I am way too exhausted during the week. So I need to figure out how to save energy and lay down more.

@taniaaust1 So many good points to quote! And no time, so another summary. Cat doesn't get to go outside much, we live near a green belt with coyote. She won't even pee outside anymore. I've thought about potty training, but I've heard you need a dedicated toilet while training. I have only one... Besides, litter is the easiest weekly chore I have.

Here is a summary since everyone gave me so many good ideas:
I have groceries delivered, I only put fridge and freezer away upon delivery, the rest sits on the floor for a few days or weeks. Takes 5 minutes.

I only do two small loads of laundry per week. I tried doing one, but all my whites are now gray. Back to 2. Clothes are folded while I sit on the couch, and sometimes they are on the couch for several days before I put them away. One to two days with many rest breaks. Biggest chore.

I do dishes (while sitting on a bar stool) for about 5 minutes most mornings, so break up over the week.

Cat box when I can, hopefully 2 times a week. Takes 2 or 3 minutes.

I have a locking mailbox, so I get the mail once per week. Sort as I feel ok. Take the bills out immediately and pay online. I don't file, they are thrown in a box once paid. Takes one minute of energy.

Cook meat for dinner and freeze. (I either have a box of salad or frozen veggies at work). Usually very simple prep, sit on bar stool while doing any prep. Usually slow cooked beef or quick (stove top) cook fish or chicken breast. Putting food in containers is the hardest part, but usually only 5 minutes of sitting on barstool.

I sit in the shower, and sit on the sink counter while drying hair and putting on makeup. Minimal arm lifting. Sit on the bed while getting dressed.

I hate to admit this, but breakfast is chips and nuts in the car. I get home at 6:30 and am usually in bed between 7 and 8. Dinner is milk and pills. I basically only eat at work.

I water plants when they are wilting, takes 3 minutes about every 10 days.

Take the garbage can out once a week to curb, takes 2 minutes.

I can't think of any more chores at the moment, and I have to leave work. What can I change? More later!

 

[taniaaust1]

Your chore list is very similar to my own and seeing that is a worry as it means you dont have any real leyway with things (what you are doing there and mention is a good indication of just how badly ill you are) and cant cut back much at all with the daily household stuff unless you get help. (i notice it looks like you leave the floors like I do and you probably too only change your bed sheets and stuff when they look dirty as those things didnt get mentioned).

All you can do is space out things differently. Its important not to be doing all you are currently doing with the chores on a weekend as you mentioned in your other post. (or maybe doing them with watching and responding to a heart rate monitor would be enough to help)

I do suggest you get yourself a shower chair so you arent having to get up and down off shower floor and do also consider if you do better with legs up when sitting then with legs down when you are doing your chores, how you sit may be making a bigger impact on you then you are currently aware (this would all depend on if you have OI).

I really think you need to change your work situation a bit. Its time for you to seriously be considering this.

...

"Long term", one good meal per day only "may" start impacting you.. nuts though are healthy but your breakfast sounds more of what I'd consider a snack. When we are unwell or when we are experiencing extra stress,our bodies use more nutritionally.

Maybe you could consider something like a healthy meal replacement shake with your nuts for your breakfast (just have to put it into container/cup and water or milk and shake then drink out of same cup, you can still have that while driving to work).

A meal replacement which can be helpful for ME is undenatured whey meal replacements. My CFS specialist put me on one called Phamafood Complete Isowhey due to me missing so many meals (it had all the essential things in it and is used in some hospitals. It actually was helpful to my ME, I was gaining stamina and overall health with using this till I developed an intollerance to it).

ME specialist Dr Cheney used to put his patients onto certain brands of undenatured whey products to help treat the ME (he found not all brands were equal) http://www.betterhealthinternational.com/Cheney_whey.asp) .

The whey meal replacement my specialist was using for his patients which was helpful to me was this one though I wasnt buying it from there (this is just an example of it from a website and not a place I recommend to buy it from) https://www.fourbody.com.au/pharma-foods-isowhey-complete-optimum-nutrition.html

anyway, you could have a healthy breakfast to make sure you dont end up with malnutrition issues and maybe have something which could be helpful to the ME at the same time

 

[Woolie]

Great ideas, @Stawberry. Not wanting to hijack your thread, but this is turning into a really good resource for all of us.

I wanted to add another food suggestion:

For really bad days, shredded or sliced roast chicken or beef from the supermarket deli does the job of a wholesome meat meal (for those wanting protein, but no rubbish), with no prep at all. Add to that a bag of salad greens, and hey presto, healthy meal. All bought online of course.

Actually, just shoving a chicken in a oven to roast is pretty easy too. The work is in all the seasoning, veggies, etc. But for desperate times, I forget all that, and just rub some olive and salt on it and shove it in. Several meals there if you live alone. Would rather preserve my health than experience a taste sensation every night.

Baked potatoes are easy too (if you eat them). Wash, slit on top and shove in oven, straight onto the oven shelf.

I have also found that if I anticipate the heavy workload days, and save easy meals for those days, I can prevent overdoing it. So that shredded chicken thing on days I have to go out, for example.

 

[taniaaust1]

Actually, just shoving a chicken in a oven to roast is pretty easy too.

An easier way to do chicken if say you want to cook a chicken breast piece,is to cook it in a water in the microwave (note that wont brown it but is great for chicken breasts) . It will come out very tender and moist from there if not overcooked and cooks very very fast (I cant remember how long it takes to cook now but maybe only a couple of minutes). You dont then have a roasting pan to scrub up as the microwave container washes up far easier.

You can also get roasting bags to use in microwave for things like chicken and the chicken will even brown in those and then no pan washing up.

 

[Woolie]

You can also get roasting bags to use in microwave for things like chicken and the chicken will even brown in those and then no pan washing up.

Nice idea, @taniaaust1. Might give that a go. Sometimes the greenie in me protests to stuff like oven bags. But I think we all need to get over things like that, when it risks compromising our health.

I've never tried microwave for chicken breasts, but it sounds easier than pan frying (and the oven is crap for chicken breasts on their own, they just go dry). Probably not a taste sensation right, but we're talking survival cooking here!

I have a tub of pesto in my fridge, which I just smear over this sort of stuff. Makes most things taste pretty good!

 

[taniaaust1]

Nice idea, @taniaaust1. Might give that a go. Sometimes the greenie in me protests to stuff like oven bags. But I think we all need to get over things like that, when it risks compromising our health.

I've never tried microwave for chicken breasts, but it sounds easier than pan frying (and the oven is crap for chicken breasts on their own, they just go dry).

added bonus of when you do chicken breasts in microwave, you can also then use the cooking water to make chicken soup. Pour it into a cup and try it.

 

[Woolie]

look at pictures of rocks. (yeah, I love rocks)

For you, @Strawberry. Maybe not quite as intellectual as your usual ones, but definitely cuter!

Edit: I just realised the earlier photo I posted was of FAKE rocks - what a faux pas!

 

[purrsian]

@Strawberry it sounds like you've already made some good alterations to your chores. I second @taniaaust1 that a shower stool is a good option to prevent having to get up and down, plus my mum always told me I shouldn't sit on the floor of the shower as germies might hurt my hoo hah lol I got a cheap plastic garden stool, which was cheaper than an actual shower stool. Works fine, just find something waterproof and non-slip.

There are websites out there that are for "task sharing" - I can't remember any of the names, but basically someone offers a job they can do and you just pick them to come do the job you need done. They have all sorts of things - yard work, cleaning, basic chores, plus all kinds of other random stuff like maintenance, office work etc. It might be a cheap way to find someone to do odd jobs for you, either regularly or during crashes.

I have started using a basic rule that if I do a harder task, then I should rest for half an hour after (meaning just relax on computer in bed or something like that, not sleep). I was finding that I kept doing extra, because I was up and I may as well, then I pushed too hard. So now, I'll hang the washing out, rest, next time I'm up I'll stack the dishwasher, rest, etc. I do the same thing to get ready to go out. I'm going out to dinner at 6.30, so I showered at 4.30, rest, hair at 5, rest, make up at 5.30, rest, now I just have to get changed. Prevents me from being all sweaty and exhausted as I leave and I get to enjoy my outing much more. I got a bit down for a while because I felt like my entire Wednesday and Thursday was dedicated to college (which was actually only 3 hr class each day, but took me all morning to slowly get ready then I crashed when I came home). But then I realised I could enjoy my rest times in between getting ready instead of stressing about "will I be ready in time or will I feel too bad". Sometimes my brain just needs to stop overthinking it all and just chill lol

 

[Woolie]

Good advice, @purrsian. If I have a challenging day the next day (which is basically anything that involves leaving the house), I now shower the evening before, and just tidy up in the morning. For the same reason.

 

[hellytheelephant]

So much good advice on this thread, a good resource for us all.

I think food is one of the areas where we can learn which foods our bodies respond to- both in positive and negative. We are all different, but if you are running your engine all day on just one meal( and adrenaline), that is really not going to help your body long or short term. I speak as someone who survived for years on caffeine,sugar and bread based foods.....and I am now much sicker.


I

 

[Strawberry]

I agree @hellytheelephant its a good thread and there is too much to quote! And I am a little short on time anyway, so I will once again just talk in general to things people have said.

First off, to @taniaaust1 you are so right on. You made me almost cry, I do need to talk to my boss and figure out how to lessen my schedule. I know this last week was very unusual, but I can't do that again without taking time off. I feel it in my bones that I am very close to a hard crash, and I don't want to risk that. I need to maintain where I am at. I may be able to get better with ART, but I know I will never be able to add more chores back in. I would like to make dinner again though!

And on to that subject, my mom said a month ago she would give me her old upright freezer. YAY! But now I have to wait for my two brothers to be able to get together and deliver it. But after I get it, I want to stuff it with organic whole chickens and individually frozen and sealed grass fed Australian beef. Although the beef means I have to have the energy to cook it, so that will be lower on my list. Then I can use the bones to make bone broth. mmmmm....

Hey, speaking of bone broth, have any of you done broth for meal replacement? When I hit not being able to cook, (about a year ago) I got into heating a can of chicken broth flavored with garlic and ginger. But now opening a can and slicing some ginger is too much work...

And shower stools. My daughter almost bought me one a while back, and I told her I was glad that she didn't as sitting on a stool will make me exhausted with my legs hanging. I think I actually prefer sitting on the floor. My legs are up, and it isn't tiring that way. I might try a foot stool though.

@Woolie Thanks for the rocks! They are so cute! When I was little and picked up a rock that wasn't near gem quality, my dad would say it was a "leaverite", because you are best to leave her rite there. I always told myself when the kids were grown, I would get back into rocks, and teach my dad (in heaven, but he can watch) that leaverites can be nice too. The picture you posted is one of the ways I thought of doing. And now I sit here wondering if I ever will do that, as I have been in a bad downward spiral for a year and a half. this is not the middle age life I had imagined.

Just a quick update on how bad I did a doozie, last night I thought I was feeling better so I didn't take a gabapentin. Well, at 9:30 I had to get up because my legs were buzzing so bad I couldn't fall asleep. So once again I am short on sleep. Tonight I will take 2 gabapentin whether or not I need them, and SLEEEEEP! And I think it will be easier to stay in bed this weekend. Maybe I will even break my own rules and take my ipad into the bedroom and check on this thread, and forum.

Ugh, back to work. my legs burn even sitting.

 

[taniaaust1]

ugh I hate that leg thing, it can stop me from sleeping too. I dont get it much though as Im careful not to over do as much as I can be (I was kept awake one night last week due to that thou)

And shower stools. My daughter almost bought me one a while back, and I told her I was glad that she didn't as sitting on a stool will make me exhausted with my legs hanging. I think I actually prefer sitting on the floor. My legs are up, and it isn't tiring that way. I might try a foot stool though.

I actually use both a shower chair in the shower with a second chair (a stool) just outside the shower to keep my legs up when I shower

 

[purrsian]

Since my shower stool is actually a garden stool, it's shorter than a usual shower stool and my feet are flat on the ground. I thought it might be too short at first, but it's perfect. Although you don't want anything too short if you're worried about falling down as you sit down. It seems everything is a fine line between too much and too little for us lol

I don't know if it would work in the same way @Strawberry , but I always used minced garlic and minced ginger when I cooked so I didn't need to chop anything up. They come in a jar that you keep in the fridge and just spoon out however much you need.

 

[Strawberry]

Oh my gosh, my prayers have been answered! A close family friend needs a room! And my cat loves her!

Wow, I just don't know what more to say. I feel blessed!

 

[purrsian]

That sounds wonderful @Strawberry ! Depending on how well they know your situation, it may be pertinent to have a chat with them about how much you can do, your limitations, your requirements for an adequate rest etc to ensure there is a clear line of communication and that you both know each others expectations. Things like the fact that you can't clean as much, or that you might need quiet during a crash, or if you have any chemical sensitivities etc.

Cats are such good judges of character - my cat was scared of all males till she met my fiance and she loved him and I said to my mum "well that's it, Dru approves, I guess I'm marrying him" If your cat loves them, they must be pretty cool

 

[Strawberry]

@purrsian I forgot to mention that I use puppy pads also! Not the absorbent ones, but the plastic holder that goes under the pee pad. It definitely is better for catching scattered litter and the errant misses. Also my furr ball was a rescue, and she had been abused by a male. She isn't very fond of men in general, but is so in love with my daughters boyfriend it is crazy!

Yes, my friend definitely understands what I am going through. She also has her issues. Her feet and knees are very messed up so we will be two peas in a pod. She hobbles like a drunk, and I shuffle like a drunk or an old man. And I have known her literally all my life! Our entire families are very close, and they will help her move in. This should be good. Actually, I might be able to get my mom and brother to help empty the room. Big family party!

Although I still have to learn how to lay DOWN, and not push myself so hard on weekends. Last week was unusual, yes. I am quite sick still. But I can't afford going any further down. I risk too much.

 

[purrsian]

That sounds wonderful @Strawberry , glad to hear. It sounds like you also have a supportive family, which definitely is a bonus. Just make sure you don't overdo it in emptying out the room - I always find I'm my own worst enemy as I try to get things like that done all in one go. Luckily, fiance tends to tell me to go have a break and reminds me not to feel bad about it (because I usually get sad and frustrated if I can't do what I planned).

It's good that you'll be living with someone who understands; I think all chronic illnesses and injuries carry similar overarching emotional impact and have found the most understanding people often have dealt with something along those lines. And maybe you'll be able to remind each other if you worry the other is overdoing it

 

[BeBe]

heyyy, me too and I've been icky crashy sick all day. I totally overdid it and am so broke I havent much to eat so things get creative at mealtime. also a busy holiday and weekend trying to have a semi normal situation. lol

-was told tonight by a friend on the phone the classic line "gee you look fine". rrrrr yup fabulous
meanwhile I've been sick all day with chills and flu-y crash on the couch under blankets and heating pad feeling frustrated and scared. I so wish there was some actual treatment. My body is def trying to fight off something and its been years. im tired of being sick. Been cfs up and downnnn sick for so long it's just another passing episode, sadly. since 2001. winter makes it harder, the cold is a challenge for sure. Brief Hot shower before bed does help me relax and also warm up. when I'm crashing i just feel so ummm yaknow. crappy.

my kitchen is a mess right now and I don't ( I do- but I can't! ) care, hopefully i will feel somewhat better tomorrow and can do some of that cleaning up then. I love it all clean and organized etc- so do def understand the urge to get it all done and when I give in and try to do that woah-i pay. then others around me pay with my possible grumpy attitude because they dont get it. My boyfriend was here for the weekend and makes a mess which is of course more work for me. so frustrating since I've developed systems and strategies to cope with this "invisible Illness". When I dont adhere to the yellow zone warning, I drop quickly into the red zone and I'm very sick. I hate it but I have to take breaks, drink copious amounts of water and give myself a few days, weeks, months or years depending on the task at hand.... to finish or just dream of finishing it.
since my cats are fed and safe i will go to bed soon.
hang in there. best to you all.