Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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How do i learn my limits

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Pinkheaven, Oct 10, 2016.

  1. Pinkheaven

    Pinkheaven

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    Hi ive had ME/cfs for years but i still cant figure out what my limits are.I do a bit of lifting such as moving my tv and my desk with wheels from my sitting room to my bedroom a couple of times a day i dont go out i stay inside and i try to stay on the couch but im so tired at the moment i find it hard to stay out of bed.I did clean out my desktop last night (the dust). Sometimes even talking is exhausting i know it sounds silly but how do i learn when is the limit to stop overdoing it?Anyone have any tips on how to make life easier as well?
     
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  2. TiredSam

    TiredSam The wise nematode hibernates

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    I found this site really useful, it's how I learnt my limits.

    http://www.cfidsselfhelp.org/library/type/articles

    Learning your limits doesn't happen overnight, it's a process that takes a long time, especially if your limits fluctuate, so don't get discouraged.
     
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  3. lnester7

    lnester7 Seven

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    For me the easier was to use Heart Rate monitor and keep hear rate under Anaerobic threshold. I got mine measured and was 115BPM at 5min upright. Being building up slowly for years.

    You will get crashed by other things like infections, a bad sleep night... But overall is a good method, and takes a bit to figure it all out.
     
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  4. alice111

    alice111 Senior Member

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    This is not a silly question at all!!!! It's frikin hard, and I'm still learning. It's a constant reassessment, as things can change from week to week. But here are a few things I have learned though that may be helpful?

    -don't underestimate anything. I mean anything. Something as simple as how many times you went from sitting to standing, how long you were on a computer, a shower, a conversation, what "shouldn't" be considered over exertion unfortunately for us can be just too much

    -payback (crash whatever you want to call it) can take way longer than a day to hit. I'm slowly learning this! For me it can take up to a week, which is crazy, a lot of things make more sense now that I have realized that!

    -energy can be "fake". Ok, this one may not apply to everyone, but for me I will get adrenaline surges. When this happens I feel like I suddenly have a lot of energy, and I will want to do things, but I have learned the hard way it is fake energy. If I use it I crash hard. It's very confusing, and I still struggle with this one, but if I am able to ride it out and keep to my pacing, things are muuuuuch better!


    I can definitely say that while pacing is not a cure, it has helped me feel more stable. the lows are not quite as low, and that can make a world of difference! I hope that's a little bit helpful? Just remember it's is haaaaaarrrd so don't be too tough on yourself! :)
     
  5. purrsian

    purrsian Senior Member

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    I've been sick for ten years now and still learning about my limitations. Because our limits are always changing, it can be hard to keep up with where they are at any given time! It's not impossible, just hard.

    This is all perfectly said! I also get the 'fake energy' and I think many of us do. It's made worse by the fact that you get excited that you finally feel ok enough to do something, so you do that something, and then another something... Learning to recognise an adrenaline surge is important. The other day, I vacuumed the bathroom, toilet and hall. I wanted so much to do more (my dog is moulting like crazy!), and I physically could of at the time, but I stopped because I knew I was in a surge and I would pay for overdoing it later. Think of it like a sportsman using his adrenaline surge to push that little harder and get that little bit faster; adrenaline helps you push through because it blocks out feeling the bad symptoms.

    I used the link @TiredSam shared years ago and I agree, it is a great resource for beginning to understand your limitations and abilities. I never stuck with it too much, as I kept forgetting to write in the logs or I couldn't be bothered, but it still helped to get my head around the issues.

    I think to some extent, it's about learning how much something will make us crash, in addition to what our limitations are. Some CFS sufferers are fine with the phone but not in person socialising - I crash BAD when I talk on the phone. Thus if I need to be on the phone, I can prepare myself to reduce the impact, eg. I usually am lying in bed while on the phone, and my family knows that if I say I have to go, I have to go.

    I look at our illness as a delicate balance. It's very easy to use up energy and difficult to create/recuperate energy, but we can look for ways to make up for our imbalances. Remember, we are sick people, and what might seem like "nothing" can have a big impact on our delicate system. When you're looking at what you can/can't do and what causes crashes, look at anything and everything. You mentioned about dust - that's a completely viable cause of problems in CFS, as it might have aggravated your immune system and an increase in immune response uses up energy. Overthinking, over-studying or doing too much mental work can be a problem - sounds ridiculous, but when you consider that our brains use energy and blood to function, it makes perfect sense. Sometimes even eating can cause a crash for me - too much blood goes to my GI system, digestion takes up so much energy, then I get super cold and tired and have to sleep. Weirdly, doesn't matter what I eat, I think it just occurs when I'm on the verge of a crash anyway.

    Basically, I look at my body as 'doing things that require energy' and 'doing things that create energy' and try to reduce the first and increase the second. It's not just physical effort that causes crashes, that took me a long time to learn and I think it's really helped me identify some problems for me.
     
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  6. -Jessie-

    -Jessie- Senior Member

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    I love everyones tips. Good stuff! I put a lot of thought and effort into learning my ever-changing limits and am constantly making tweaks to my life to try to find the balance too. I wish that I were more successful at this. It often feels like strategizing daily life with this illness, just to survive and try to not make anything worse, is a full time job.

    Unfortunately, days or weeks of my efforts can be wiped away in a split second by outside forces. No matter how hard I try for myself, I CANNOT GET OTHER PEOPLE TO LEARN OR COMPLY TO MY LIMITS. That part has been devastating, as it leads to almost complete isolation in order to save myself from the harm that they cause by their lack of understanding. Or misunderstanding... most people who know me dont understand ME/CFS and treat me like I have a mental illness instead, or like I'm just a really picky, oversensitive, moody wimp who can't handle life.

    Well, I will keep plodding along without them. Im busy with serious things. Like others have stated, finding our limits is hard and we shouldn't be too tough on ourselves about it. I wanted to add that we shouldn't let others be tough on us about it either.
     
  7. purrsian

    purrsian Senior Member

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    This is something I still struggle to come to terms with and struggle to communicate to others about what daily life involves. It's so frustrating and exhausting to feel like you're fighting just to get through daily life.

    This is important to note, as it's easy to feel bad about yourself for a crash, but sometimes it's completely out of your hands. It's taken me years and years, but I'm finally starting to realise buggar what everyone else thinks, I know what I'm doing and I'm not a crazy person. Also, learning to say no to people is important, when saying yes would push you too far. Was very hard for me to learn that one!
     
  8. TiredSam

    TiredSam The wise nematode hibernates

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    Amen to that :)

    And if people insist on telling you what they think, I recommend Graded Rudeness Therapy.
     
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  9. Monarda

    Monarda

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    I really like some of the comments on this thread, some very good information. The hardest thing I ever had to learn was to correctly understand my energy level at the start of a day. I don’t wake up very well. It might take 2 hours to get an accurate measure for what my day is going to be like.

    It took about 7 years for me to understand this… and to get good at it. I had a few good years afterward.

    When I first left work and moved back to the family farm, my dad was 66, raising beef cattle and had a 200 tree peach orchard. I helped as I could; sometimes a job requires 2 men. Since the job wasn’t a regular 9 to 5 it was very difficult to learn my illness, there wasn’t a standard day to day measuring stick. Farm life is a day or so of intense physical activity followed by weeks of peaceful quite.

    As dad got older, into his 70’s, things changed. He was no longer running a farm and me helping out occasionally. It was more of a “the two of us together made about 1 sorry farm hand”. As he got close to 80 things became even more difficult for me. The 200 tree peach orchard had to go! It was at the end of its commercial life anyway. 8 or 9 times a year I had to undertake tasks that I knew in advance would cause crashes. Things like load cattle for 2 hours then haul them 100 miles to the sale barn. I’d be a vegetable by the time I got back home. By this time I knew CFS pretty well, knew how to cope. I had a few good years because I understood my energy at the start of a day.

    In 2013 I was injured by a bull, my leg. I was getting better but on the 3rd day blood clots formed in my calf muscle (pardon the pun). I was given warfarin, a blood thinner for 6 months. It devastated me (poster child for side effects). My energy levels were precarious enough. Thinning my blood sent me into a 2 year nightmare, as bad as things were in the early days.

    It was only this spring and summer did I regain some of my energy back.

    I think one of the most important things anyone with CFS can learn is your limits. It’s not an easy thing to do. It takes years and symptoms change through the years. Our symptoms change everyday, learning to measure them is a big plus.
     
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  10. KristenSF

    KristenSF

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    I think I will go to my grave saying the hardest thing about this disease is explaining it to people. I'm just tapped out in this regard.

    I've whined recently and frequently about having to leave the house for unpleasant dental procedures, so there's that.

    A very dear friend came to town yesterday and went out to lunch with my partner, but was disappointed she couldn't see me. She was outside my house (I didn't even know this, but I could FEEL it) arguing with my partner about wanting to see me. I love her. She is a Type A.

    Ten minutes with her questioning my illness would make me crash. Expending energy on trying to imagine how to explain why I couldn't see her made me crash--I work at home and had to call in sick today because of this and who can explain this? It makes no sense!

    This Friday I have to go to the dentist and bring my laptop to work to have upgrades done that can't be pushed remotely. Ive had to explain to my boss that I can't walk into my office building with my laptop, because I can only walk a few steps and I haven't faced this fact and gotten a wheelchair yet. I will, and it will be a good and necessary thing.

    I have an appointment with my CFS doc right after Christmas which I'm cancelling for now because I just want to stay at home and be left in relative peace until the holidays are over.

    I guess this is how we learn our limits... trial and error!
     
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  11. purrsian

    purrsian Senior Member

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    Yes it can be so hard to explain to some types of people why even five minutes of socialising can be difficult. Some people will never understand as they haven't ever experienced anything remotely along those lines, but at least the quieter types tend to understand a bit more. The types that tend to want to socialise even when exhausted will never understand lol My father in law is one of those types and although he might never understand fully, he does accept.

    It would be nice if everyone would trust us and our closet loved ones when we explain our limitations. They don't need to understand, but just accept.

    And I completely get the wasting energy while imagining how to explain why you can't see her. So hard to avoid!
     
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  12. Sidney

    Sidney Senior Member

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    I am so ignorant about devices: how does the heart rate monitor know when you cross the anaerobic threshold? Does your heart rate go up when you start to faint after standing up for 10 minutes? Does it go up when you are dizzy from trying to concentrate? I would love to have a canary in the coal mine of my head/body.
    Apologies for being so stupid!
     
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  13. PennyIA

    PennyIA Senior Member

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    I'm biting my tongue a bit, but the sarcasm has to come out anyway. My answer? I learned the hard way. And keep learning the hard way.

    What I have found is that I tend to over-estimate myself quite regularly. I try to be mindful and plan lots of rest... but since I'm mild right now and still working - it just varies too much from day to day.

    I'm really lucky. My new husband is very perceptive. He tends to recognize that I'm overdoing things before I do. He says he can see it in my eyes.
     
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  14. TiredSam

    TiredSam The wise nematode hibernates

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    http://www.cfidsselfhelp.org/librar...our-heart-rate-to-stay-inside-energy-envelope

    I set my heart rate monitor to buzz if my heart rate goes over 102 beats per minute, which it does if I walk too briskly, take the stairs too fast (or at all), stand up too quickly etc. When it buzzes, I know I'd better slow down until it stops buzzing. If you wear one for 24 hours it can help you identify activities that increase your heartrate which you might previously have been unaware of.
     
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  15. Sidney

    Sidney Senior Member

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    Thank you! That sounds simple enough even for me to deal with!
     
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  16. lnester7

    lnester7 Seven

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    how does the heart rate monitor know when you cross the anaerobic threshold?
    You set up an alarm, follow your device instructions. Not all bring an alarm for max ( most brain alarm for range) but you can trick it by outing the low really low and the high at your AT.
    AT = (220-age)*55%
    You can go up or down in the porcentage based on your activity level.

    Does your heart rate go up when you start to faint after standing up for 10 minutes?

    No, the fainting is POTs, the watch will control the Cfs fatigue and PeM. I pass out when I stand independently if I am tired, overdid or not. I take desperate meds for the POTs.

    please feel free to ask. I know is confusing at first. But it will all make sense eventually. I still work my full time job and have a family. Whatever I am doing keeps me somewhat normal.
     
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  17. Sidney

    Sidney Senior Member

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    Thank you so much for all this. It is all such a learning experience, and much of what I get is from this site, or links from it.
    ( I only see a rheumatologist, or the CFS clinic, once every 3-4 months for shortish visit).

    And much admiration for dealing with your life so well!
    (Or by 'normal' do you mean 'normally exhausted '. Can be tricky, when you just mean you are coming out of a crash, and friends and family think 'much better' = 'normal' = that you feel well...)

    It seems I should look for a monitor with adjustable alarm system. But because I am old and retired, I don't go out to work, so a lot of what I do is from my daybed; I don't think my heart ever does go fast, because I don't have a normal life. But I do easily crash, just from spending an hour with friends, or using that well-named Fake Energy. (After using that for a couple of weeks, I was down the whole of last month. And while I was running on adrenaline, or whatever it is, family were very helpful, and I was resting often - by normal standards).

    I know there is a line I cross, for instance on the few days I can do a couple of miles' walk, and suddenly I don't know how to make it home - but it's not exactly aerobic excercise, is it? I used to work out in gyms, as well as doing a lot of yoga, when I was younger and normal, and they would time you as you felt your pulse; but I am not able to even approach that sort of tiredness now!
     
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  18. lnester7

    lnester7 Seven

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    Cfs plp have very low aerobic treahhold so walking is by nature aerobic let alone for us. Then you go anaerobic and the latic acid build up and muscle pain follow.

    An alternative is to buy an oximeter from pharmacy they are cheap. They measure the HR too, and you can put it on to do a few things. I use mine to meassure Resting HR.
     
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  19. taniaaust1

    taniaaust1 Senior Member

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    You probably shouldnt assume that. I was horrified to find my heart rate goes into the red aerobic exericise zone on https://en.wikipedia.org/wiki/Aerobic_exercise just putting on a pair of jeans (and they werent tight ones either)
     
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  20. Keela Too

    Keela Too Sally Burch

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