Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Push crash cycle, how to stop?

Discussion in 'Lifestyle Management' started by Strawberry, Nov 9, 2016.

  1. Strawberry

    Strawberry Senior Member

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    Is it possible to stop the push crash cycle? Or the personality behind it? I crash every week because on weekends I have to cook and freeze meat for the next week, laundry, cat litter box..... I'm quite ill and feverish today, and hardly slept for the burning and jumping muscles.

    This week is worse due to an unfortunate blow up of my clothes washer. I guess the water valve broke, and I couldn't get the water to stop at all. I flooded my laundry room, and had to clean it on my own. And to salt my wound, the new washer is delivered tomorrow morning, which will crash me further.

    I get as much help as I can, and I just am not able mentally to lay in bed on the weekend. I just can't make myself do it. I know I am making myself crash by doing my chores and not resting, but I don't know how to stop cleaning and ask for more help from more people so I can rest.

    I'm pretty sure this is a personality thing. The "I feel okay now so I must do it, someone has to do it!" type A syndrome. I have to change the core of who I am. And the inner me is kicking and screaming and pitching a fit that she can't do what she wants. Not even what she needs for basic survival, and to keep the cat from going on the floor because her litter box is beyond full.

    HELP....... I know others have gone through this. Is it stoppable?
     
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  2. MikeJackmin

    MikeJackmin Senior Member

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    Well, you can't stop the crash, so stopping the push is pretty much all you have to work with here.

    Part of it is a psychological battle; boredom plus discontent plus anxiety creates a toxic mess that is very hard to contain. Part of it is a matter of technique; there's a big differences between tackling a chore in ten minutes, or in three, three minute efforts.

    The psychological battle is best won with effective psychological help. People face unwelcome, life changing losses all the time, and there are some ways of dealing with that which work better than others. None of us are born knowing all of these things.

    As for technique, I've found that stopping and sitting down for a while while I still feel good is always a wise decision. I've learned to distrust the false sense of well-being, preferring to do chores when I _don't_ feel good, as a means of limiting my activity. I believe that regular habits at regular times of the day are better tolerated and I try to work as much routine into my day and my week as I can. I am an expert in one-pot meals, often served in the pot, and usually made large enough for at least two servings.

    Continued crashing might well make you worse over time, and lower your baseline even further. It will, at a minimum, prevent whatever healing and improvement you might otherwise enjoy. The crashing has to stop, one way to another.
     
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  3. TiredSam

    TiredSam The wise nematode hibernates

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    I appear to have made significant improvements to the push-crash cycle, by reducing my activity to a level where I can be fairly symptom-free as long as I behave myself. This includes making myself lie down three times a day, even when I don't feel like it.

    I have found it helpful to tackle one activity/habit at a time. So I started off by reducing my free-time activities (voluntary work, playing music, socialising) to virtually zero. Then making sure I chill on the sofa every evening. Then making rules for work, ie I teach for 6 hours on a Monday, so that means doing nothing on Sunday evening, taking it easy on Monday morning including lying down, going to teach but finding somewhere to lie down in the breaks, then I ban myself from doing anything on Monday evening or Tuesday morning, next time I allow myself to work is Tuesday afternoon.

    As I recognise each new situation that is causing difficulties, I make up some rule about it so I don't have to think about it every time, usually including time limits about how long I can do it before having a break, rest I should take before and after etc.

    As for "stuff that simply has to be done", well it just doesn't get done by me these days. This has been a major attitude shift to how I was before I had ME, but even if it really needs doing, if it's probably going to make me ill then I just won't do it anyway. I would find it very easy to put cleaning and tidying in this category. Saying no to people, asking for help and delegating stuff hasn't been the disaster I thought it might have been.

    I would much rather be inactive without feeling ill than doing things but always having a headache and feeling exhausted for weeks on end. The more I behave like this, the easier it gets, because going without crashes for longer periods is really motivating. And of course on many occasions I have felt a bit better and taken it as a chance to do more, which usually ends in disaster, and after enough of those experiences I think I've got the message.

    I don't find thinking about it in terms of personality is helpful, I just work on identifying crash risks and changing my habits or establishing new rules one thing at a time.

    I consider myself extremely lucky to have been able to make some improvement, I definitely feel like I have "gone up a level" in the last couple of months, which could just be a random fluctuation but of course I like to give myself some credit for it.

    Another thing that helped was that when I consigned myself to the sofa, instead of dwelling on the things I wanted to be doing or otherwise would have been doing, I found things I could do on the sofa that were useful or that I enjoyed. These just about all involve my laptop, but I've rearranged my work so I can prepare a lot of lessons without having to get up and go into my office, started improving my German again, got back into computer programming etc, if you can find things that you're into and arrange a way to do them on a sofa, in bed, lying down etc it'll stop you dwelling on what you used to do when you were up and about.

    Hope this helps, although I know everyone's circumstances are different.
     
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  4. Strawberry

    Strawberry Senior Member

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    @MikeJackmin
    I think you are right on this. I probably should seek out counseling, it might teach me how to accept this illness better.

    I like your idea of doing chores when you don't feel as well so that you aren't so likely to over do. I used to do the one pot meal, but sadly I crash if I have more than a glass of milk and pills for dinner. I don't cook during the week anymore.
    YEP.

    @TiredSam
    What about things like food and laundry? I don't clean, and do little tidying any more. Do you get help for food and laundry?


    I am thinking about a lobotomy. A full one. That should work!

    Kidding aside, as long as I can get through the holidays, I have decided I am using my vacation time next year for going somewhere near home that I don't have to do anything at all for a couple of days per month. Maybe a local hotel room or something. And when I get some energy I want to go buy some more socks, then maybe I can do laundry every other week instead of weekly. Its ingrained in me to do it weekly, but tough noogies. I have to figure out how to get some true down time, not couch time as it doesn't work. And I want to clean my house so bad, I can't take a day of down time without tons of guilt.
     
  5. Kati

    Kati Patient in training

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    Hi @Strawberry please consider there might be long term consequences for the constant push-crash, and at least some of us pay the price by being sicker, on disability, unable to work.

    You need to establish your priorities. Perhaps house chores could be dealt with by hiring someone on a weekly basis while you rest.

    The key to avoiding push and crash is pacing. It means if you have cooking and food prep to do, you do them in small period of time, like 10 minutes at a time, and you go lay down. The lasagna I made from scratch the other day, it was a 3 day project. One day cutting all the veggies. The second day making the sauce. The last day cooking the pasta and making the lasagna. (I had 12 servings in the freezer, and a few more for the following days). Otherwise, you can plan ahead and cut veggies in the morning, do the following step after lunch, and finish off in the evening.

    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 :bang-head:

    Lastly, if you can perform a task sitting instead of standing, it will save you energy. And if you can do something horizontal instead of vertical, again, you will save spoons.

    Sorry for your washing maching mess. Sounds horrible. :(
     
    Last edited: Nov 10, 2016
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  6. purrsian

    purrsian Senior Member

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    This is really important to take note of. Small chunks of activity spread out over the day (or over the week if required) is much better then going nuts for one day of the week then spending the rest of the week paying for it. I sometimes even use timers to encourage me to do an activity without overdoing it - if I say I'll do a 2 minute quick tidy up, then I only do 2 minutes regardless of what else is still a mess.

    For laundry, I do one load probably 5 times a week (that's for two people). I also struggle to hold my arms up, so a normal washing line wouldn't work. I have an indoor metal collapsible stand which is great - no lifting clothes/towels up, don't have to go far as it's also in the laundry (not much space mind you lol). I also use the backs of the dining room chairs if I run out of room or for things like jackets. I still ask my partner for help with hanging out sheets sometimes, but it's not too hard to do myself as I hang them out over 3-4 chairs, so you just throw it over the back of one chair then spread the corners out. I couldn't do sheets and towels if I had to hang them up on a line. As I'm in a bit of a lengthy crash lately, the folding rarely gets done, but we don't mind. I'd prefer if it was, but whatever lol

    For food, we use lots of easy to prepare meals. Frozen pizza, frozen chicken tenders, frozen fish...lots of frozen stuff lol We also get fresh ravioli and pre-made sauces. If you can afford it, an air fryer is truly amazing for ease of use. We put off getting one due to the price, but got one for Christmas last year and now 90% of our meals are made in it. My mother-in-law even does her roast in hers. Since most of our meals are pre-made frozen things, we just need to throw it in the air fryer, put the timer on and then in 10-15 mins we have dinner. I know it's not as healthy as fresh made stuff, but it saves so much precious energy. Having even just a frozen meal or two on hand is a great option for those particularly bad days - you don't want to not eat just because you don't have the energy to prepare a meal.

    Also, try to think up ways to do the chores you are doing in more effective ways for your current needs. I do whatever I can sitting, as I have POTS so standing is hard. As @TiredSam does, I set myself up in my recliner or bed so that I can do productive stuff while still physically resting. I have all the things I need within reach - water, fan or air con remote, laptop with charger, phone, the tablets I take throughout the day, study books, tissues, a blanket... then throughout the day, I can stop and start my study/work, sleep when I need, muck around on the computer when I'm bored but can't concentrate, play video games. It can be very easy to get "stuck in your mind" when you don't feel able to do anything, where you just keep thinking about things and overthinking and worrying. Having easy chill-out things to do on hand when you feel bad can be a good distraction.

    I agree that counselling can be beneficial if you are having a hard time coping emotionally or finding ways to change to fit your current limits. But it's also important to remember that it's not your fault and there's nothing wrong with your personality! It's merely beliefs that need to be changed to fit your needs, not your core personality. And it's not just you, I'm sure everyone here has had to challenge and change some of their long-held beliefs to learn to cope with this illness. We build up our set of beliefs based on our lives as healthy people, then of course struggle to change them to fit our new lives as sick (but awesome) people. But learning to challenge our beliefs and change ourselves is actually a great thing and it makes spoonies into some really amazing people. It would be nice if we could become so awesome without the symptoms though!
     
  7. Woolie

    Woolie Senior Member

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    @Strawberry, I know so well that burning and jumping muscles feeling when lying in bed after overdoing it. You lie there in a pool of regret for what brought it on, and somehow wish you could be a better person or something.

    But I don't think we should see ourselves as somehow dysfunctional because we use our good periods to do stuff we need or want to do. That's normal. Its all about arriving at a formula that gives the best overall quality of life. And realising that even with the best plan in the world, we'll sometimes get it wrong.

    @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".

    I've decided that if I ever do seek the help of a psychologist or such like, I will either: a) find someone who's already proven to be ME-friendly; or b) give my disease another name, just so as to keep the conversation focused on the limitations and not the cause.

    I agree with the others that part of it is learning not to worry about what other people think. And accepting help where we can. And learning to tolerate a different state of household cleanliness!

    As for the rebellion inside, I just try to channel that into new activities that can be done sitting down. Real acceptance probably needs time. I'm definitely cooler about this now than I was in the first few years, where I just railed against it.

    Maybe the status of our illness is also to blame. Maybe if we had MS or Lupus or whatever, we would respect more the seriousness of our condition. I wonder if we partly absorb the general messages we hear from others, that we should just ignore our illness and it will go away? Imagine you had Lupus. Would you be kinder on yourself? More ready to accept doing less for the sake of your future health? I think I might be.
     
  8. TiredSam

    TiredSam The wise nematode hibernates

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    Some really good ideas from the posters above. I don't have to do the food and laundry for myself, I'm lucky to have a wife who has taken over all that. I used to do my own ironing and sometimes cook, but it was using up all my energy so I'd crash more often. Even if I have the energy for those things and I wouldn't crash after doing them, they use up valuable spoons so I've got less energy for the important stuff like going to work and I'm more likely to crash then. Thinking in terms of the bigger picture ("this week" instead of "today") helps me say no today if I know I've got a lot to do later in the week, so I need to save my spoons.

    For laundry etc there maybe someone you can ask for help from, or it can be paid for if you can afford it.

    As far as cooking is concerned, I'm also excused from that, but can just about survive on my own if I have to. My breakfast preparation just involves putting musli ingredients in a bowl, and in the evening I just eat bread with stuff on it, so I can always do that myself. We eat a warm meal at lunchtime, if one isn't put under my nose because my wife's away or can't then I eat something I can just throw into the oven or microwave. I don't like eating unhealthy ready meals, but it's one of those choices I've had to make, preparing food for longer than 20 minutes makes me crash so I just throw a pizza in instead. If I ever did prepare and cook a meal I'd make about 10 portions and freeze it all for later.

    I tried that - cured my headaches but didn't help with the brain fog :)
     
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  9. hellytheelephant

    hellytheelephant Senior Member

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    I agree with practically everything everyone else has said. You are doing your best under challenging circumstances and deserve your own compassion.


    I find a good strategy when I am pushing myself is to think how I would treat a a donkey (!) Would I force a donkey to work until it fell over? NO! It is a good image to remind yourself to treat yourself with care and kindness.

    Pacing does really work- ie. doing things in small chunks rather than continuing until you are finished...BUT the unexpected can always turn up and you have no choice but to overdo it. I love listening to audio books as I rest, and I find it is important to occupy your mind with something healthy otherwise your brain can go over the negative stuff....and you can get exhausted from just worrying.

    I don't think it is about what type of personality you have- all aspects of this illness are hard. I personally have found counselling to be really beneficial, but you have to allow time to adapt.


    Be kind to yourself AND respect that this is a serious illness.
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    Just in case we misunderstood each other - my couch time is not down time - it is my version of being up and about and active and doing things. My down time is lying in bed, in the dark, silent, eyes closed, which I do 3x a day for 25 minutes each. That will vary from person to person, of course.
     
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  11. justy

    justy Donate Advocate Demonstrate

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    sometimes we don't have a choice do we? we cant let the act litter tray get full if there is no one else to do it. If there is, then get them to do it.

    I live in a family with a husband and kids, but I still do as much as I can because I am their mum and because I feel I should pull my weight a little. If my husband is out at work late, then someone HAS to cook the food. when you have kids you cant cook in little chunks of time - you have to just stay on your feet and get it done NOW.

    sometimes I break chores up over a day though - that can help. But honestly, if you have a lot you have to do then you cant always go and lay down if you start to feel crook. My daughter has just been ill with a virus - high temperature, aching pains etc etc. who else was there to get her water, take her temperature, give her cold towels, make up a bed on the sofa for her, sit with her and make her lunch?

    Not all people on this forum can just stop everything whenever they want and go rest or lay down. sometimes we have no choice but to keep pushing. And when I feel better enough to go out, walk, do more in the house I bloody well do it because im not prepared to spend the rest of my life doing literally nothing. This is my decision, and it is not necessarily a bad one.
     
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  12. Skippa

    Skippa Anti-BS

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    This is why we can't pace, people!

    Bah.

    If I rest as I should I get depressed and even more lethargic.

    If I carry on I crash.

    Rock and a hard place.

    Pah grumble grumble
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    Hi strawberry. I didn't clearly understand your situation properly by your post on the reasons why you are doing all that on weekends, whether its cause you work some during the week or if it cause you spend all week recovering from what you did on the weekends.

    If its cause of what you did on the weekends and then in crash mode rest of time, you need to space all those weekend activities instead right over your week and not do them all at once on weekend.

    I'm type A personality too but I'm coping as tiredsam is in his post, ME has taught me to do this as I know if I don't I will be horribly suffering the consequences to the point that I'm feeling so ill at times that I just want to die and I know I risk making myself long term bedbound again. That certainly gives me motivation to try not to do too much.

    things like food and laundry, well I often go without. Last two nights I was too unwell to even eat dinner let alone get any. I've been without any clean pants so been going half naked (pantless) most of this week due to that till today when my elderly friend came for a short time and helped me to do 1 load of washing,

    I'd rather be home without wearing clothes then knowing I'm pushing myself too much doing washing and then be very ill the next day (and no I'm not a nudist so I hate doing that but sometimes things like this I find are necessary if I have nothing not smelly to wear. I even had a meeting the other day while having no knickers on under my skirt due to no clean pants.. hopefully they didn't notice) .

    Sometimes I wear same clothes all week to save washing (and to save the energy of dressing)

    You really need to do whatever you can do to cut back if in push crash cycle as sooner or later you may find you have worsened your whole ME due tot his. and then be in a worst situation and regreting that you didn't change things. Maybe try the heart rate monitor thing and see if that helps as I know it helps many to rest as sooon as it hits a certain rate.

    Ready made meals may be good, my supermarket has started selling a cooked chcken piece with cooked roast veg packs, so I'm now getting 2-3 of those per week if I can get to the shops. along with my other premade meals

    or u could do what I used to do and use a timer to make sure I kept my activities short before resting.

    Like some of the others are doing, I rest a lot in bed too and have my bed set up so I can do a lot of activities from there while resting so I don't get bored. I do any activities which possibly can be done in bed, in bed. (even folding my washing is done when I'm in bed except someone else has to fold my bigger items).
     
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  14. TiredSam

    TiredSam The wise nematode hibernates

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    @taniaaust1 I find if I wear my underpants on the outside of my trousers they last longer ;)
     
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  15. Skippa

    Skippa Anti-BS

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    Avatar checks out!
     
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  16. Valentijn

    Valentijn Senior Member

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    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.
     
    Last edited: Nov 10, 2016
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  17. Strawberry

    Strawberry Senior Member

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    I don't have the time to address all the points I want to so I will just make a brief blanket statement.

    Someone asked about why weekends, I work during the week. Its just sitting all day and my feet are elevated, so it isn't bad. Driving home for an hour is far worse than working for 8.

    Justy sounds just like me. Thankfully my child is nearly 22, but if she got sick and asked me to take care of her, I would. I guess that is what I mean by personality. "Someone has to do it!"

    I do normally rest reclined on the couch, with everything within arms reach. It isn't enough any more. I have a tough time mentally laying in bed because my brain screams I'm being lazy and need to get up and do things, but that needs to change. I find if I lay down at least 2 hours per day, I at least maintain. But mentally that is so hard. I'm getting worse, and I do... not... want to quit working. Or push/crash to the point where I must quit and then not be able to take care of myself physically AND financially.

    I will try to touch on points later, some stuff was said that I want to delve into.

    @TiredSam you made me laugh out loud!
     
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  18. taniaaust1

    taniaaust1 Senior Member

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    thanks for that comment, I actually laughed.
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    i would of done that too if I could of done, , if one gets too sick the "someone has to do it" thing, stops applying as things become impossible to do and sustain no matter how much you want to do something.

    Unfortunately my child at the age of 9-10 years ended up having to become a child carer (and also look after the house and a younger disabled child) as this illness actually bedbound me. I was left not being able to walk for most of the time (couldnt even walk to a toilet) for almost 9mths, my daughter had to be even doing things like emptying my potty for me as I couldnt carry it to toilet or even push it there.

    If your child become sick with ME (hopefully that will never occur but each of our children have a 25% chance of that happening) and IF you could take care of her you would, just like the rest of us would do IF we could do it. (at this point it sounds like your ME still allows you to do things you really want to do and that is something you need to try to hold onto, so you need to TAKE CARE not to make it worst.

    NO-ONE (well most of us) didnt want to quit working. I know I wasnt the only one here who loved my job.

    Unfortunately with this illness we need to put our common sense before our own wants or if we dont this illness will end up giving us a lesson on it. It's starting to give you a lesson as you know you are getting worst, its telling you to slow down. You know you need to change something (that's a good start :) ) and you sound lucky if its as simple as just laying down for at least 2 hours a day to maintain and not crash.

    This may seem like a big thing, big change but this illness can force changes with are HUGE (its not forcing you to completely leave your job and go on to disability at this point) and that is a small change it sounds as if its forcing you to make. (yes its a hard change to make with certain personalities but its a small one)

    Can you talk to your boss and arrange a 2 hr lunch break every day in which you can lay down? (you could eat lunch while laying down while there). I had to buy myself a van and deck it out with a mattress and pillow etc so I could lay down when out. This allowed me to do far more for far longer then I would of been able to otherwise. This was just one management thing I had to do to be able to part time work longer. (I used to have to lay down and even sleep in the van before I could drive home from work).

    Also if you maintain if you lay down for 2hrs a day, it makes me wonder how much of your problems are being caused by orthostatic intollerance. Do you know if you have that? Have you had it rule out? if you have it is it being treated well?

    I think you also should see if you can get a day off mid week every week so you can split up your weekend chores (either that or pay someone to come in to do them if you have no one to ask for help).

    Doing too much on weekends will not give your body a chance to potentionally recover from the ME and is likely over time to slowly make you worst (the slow worsening thing which can be harmful as many can more easily deny this is happening and by the time they are ready to accept they are being forced to change, its too late and their base line is lower). If you dont change now, you will be forced to cut even more then if you acted on this earlier.

    Study severe ME and ask yourself "do i want to risk ending up like that?" Never think you couldnt get that bad. Get real with this illness and start taking care of yourself. People with it including yourself are not lazy, its a mind set you need to change. You are not lazy if you need to lay down for 2hrs every day to maintain or even improve your health. Keep reminding yourself the whys you are resting if you have to eg because this is a serious disease and I do not want to get worst....

    every time you think you are being lazy cause you are needing to rest due to the ME.. work to change that wrong programming you have by reinforcing the reality of things.

    I wish there was good CBT out there as I think if there was it would benefit you to slow down.

    Can your kitty become an indoor/outdoor cat so it wont need a litter box and will meow to go outside when it needs to go instead?

    Here's a good exercise a good social worker or counsellor would probably have you do. Have you ever wrote down the things you need to do in a column and then wrote down in a second column of changes which could be possibly done, whether you are willing to do them or not at this time as sometimes we change with time and go making changes we wouldnt have ever considered before. This can give awareness of chores which could be made to away or made easier in some way or sometimes another can add to your list of solutions.

    Many of the things around my home, Ive had to come up with strange solutions for, really thinking outside of the box trying to make my life easier and more managable

    eg a brought some wallabies to keep the grass down in my backyard and trained the cat to use the human toilet so I didnt have cat litter to worry about cleaning (I dont recommend that's hard), my latest is going to using recycle toilet paper ie family clothes (to save money and save time and energy during shopping as its one less regular item I'll need to buy there. The smaller my shopping lists the better and less likely I'll end up collapsed while out (getting my shopping list smaller was one of my solutions on "how to make shopping easier" list).

    Anyway, if you havent done so try doing yourself lists of your current chores with possible solutions to see if you can think of new ways of making things easier.

    cat litter solutions - get rid of cat (and get easier to look after pet?)
    - train cat to use human toilet (that's what i did though dont recommend)
    - automatic cleaning litter tray
    - allocate the job to another member of household
    - make cat an outdoor/indoor cat instead of just indoor
     
    Last edited: Nov 10, 2016
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  20. purrsian

    purrsian Senior Member

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    @justy reminded me I was going to give a tip about cat litter! I have two indoor babies and Dru (in my pic) has always had issues with the litter box since she kept standing in poop as a kitten and then hating cleaning it off. Even if her box is clean, she has a tendency to miss, and my other kitty loves to kick litter everywhere. I scoop it out and replace the puppy pad (for catching her misses) on most days. It's not too hard because I just sit down beside it and I have my freezer bags and puppy pads stashed nearby. If you do it every day, it doesn't take too long. If I'm too tired to take it straight outside to the bins, I chuck it in the garage to take out later. A partly done job is better than a not done at all job. And when I'm struggling to do it, I remind myself it's important for my kitty's health and happiness, so I have to do it for their sakes. Even before getting sick, I knew my tortie could never be an indoor/outdoor cat because...well...she isn't smart lol

    I think this is definitely part of it - I have come a long way in my acceptance of my illness, but I still struggle to keep in mind the seriousness of it. I've definitely absorbed a lot of the messages over the years and even though, surprisingly, I'm finding those I meet are now very understanding, I still find myself listening to the damaging messages that I'm used to.

    I've learned this is very important! Our symptoms are based on both our short term and long term activities, so it's important to plan with regards to both.

    I'm not prepared to spend the rest of my life doing nothing either, but I'm not stopping everything whenever I want for a rest because I want to. I'm doing it because if I don't, I suffer terrible crashes. I get way more done in a day with adequate rests and I'm less symptomatic than if I made myself crash by not resting when needed. I did the "just push through it", "these things need to be done now" kind of thing and it made me so sick for a long time :(

    My dad has a heart problem that causes fatigue due to not enough blood pumping around. When he was working, he would have an hour long nap in the lunch room every day. He was lucky in that he worked for his father, but if you communicate well and your boss is understanding of disability needs, then you could perhaps organise something along these lines. Explain that you will complete more work in 7 hours plus 1 hour sleep than you would with 8 hours straight work. If that doesn't work, explain that you need somewhere to lay down during your lunch break at least.

    I do agree with @taniaaust1 that it's important to tackle these kinds of issues now, before you push yourself into a long-term crash like I did when I was still working. Creating new management strategies before things get really bad is much more effective than if you just keep going until things are really bad, and may actually prevent you from getting to that really bad stage at all. 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).
     
    justy, TiredSam, Woolie and 1 other person like this.

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