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Warning Signs: When to STOP

Discussion in 'Lifestyle Management' started by Sushi, Jan 16, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    I'm starting this thread at someone's request cause I mentioned learning to hear, feel, and read your early warning signs--signs that you are about to exceed your limits. Maybe anyone who has figured theirs out, could post them here and we could learn from each other.

    I thinking of warning signs for all sorts of activity--exercise, daily routines, mental exertion--you name it--anything that could tip you into payback.

    For me, I get a certain feeling in my chest--a pressure, slight pain, a feeling that my energy is draining downwards. It means, "Don't even think of doing that next errand, washing the dishes, whatever." Stop and lie down.

    I also get a constricted feeling in my head, that is hard to describe, when I have done too much mentally, had too much social interaction etc. For me it means that if I use my brain any more without resting, I'll have less of a brain the next day.

    Then there is OI--orthostatic intolerance. On a good and rested day I don't even notice it. If I have done too much, my legs tell me to sit down, walk at a snail's pace, etc.

    How about others?
    Sushi
     
  2. SOC

    SOC Senior Member

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    The only thing that worked reliably for me was continuous heart-rate monitoring with an alarm set at a heart rate below my measured AT (not that bogus number the exercise physiologist will give you based on your age). But then, I'm a data-driven person and have always been very poor at hearing my body's messages.

    After years and years I'm getting better at acknowledging a very faint, very tiny "I don't really think that's a good idea" voice that is probably recognizing subtle symptoms. Not very helpful, I know.

    The first thing I notice when I go over the limit is an increase in cognitive problems, so if I quit right then I can usually recover pretty quickly.
     
  3. anne_likes_red

    anne_likes_red Senior Member

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    I get fairly reliable signs that for the rest of the day I either need to rest fully (not usually an option with kids!) or keep activity minimal with as much rest as possible for the rest of the day. This can happen anytime between 2pm and 8pm.
    My signs to stop and rest are: a sudden disinclination to bend to retrieve anything, or to climb to get anything, struggling to find words, any kind of chest discomfort or breathlessness, signs of dehydration (thirst not relieved by drinking water, tension headache).
    HTH
    Anne.
     
  4. mon me

    mon me

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    For me it's the lose of equilbrium, I start feeling this side to side movement in my head and need to lie down. Also can no longer process information and need to shut everything out.
     
  5. Dreambirdie

    Dreambirdie work in progress

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    My first sign of mental fatigue (like in too much computer time and forum activity:rolleyes:) is irritability and hyperactivity... like my body is a cranky baby, whining at me to stop and take a break.

    My first sign of physical fatigue is heaviness in my limbs and shortness of breath... and also a hyperactive feeling, like my body is trying to kick in the adrenals to give me more energy, when really it has no more to give.

    The sooner I stop and take a break, the quicker I recover. I have gotten much better at this, due to hard lessons learned from not hearing those first signs of diminishing energy in the past. I was so used to pushing myself, because I was raised and deeply programmed to believe that I must finish whatever I start, AND do an excellent A+ job at it, no matter what it may be... even if it's just cleaning my bathroom or writing an email to someone. This kind of perfectionism is the kiss of death for this illness, and it has been one of my biggest challenges to overcome. Though have to say, I am getting better and better at it all the time. AT this point I have no problem dropping whatever I am doing, walking away from it and putting it off as long as I need to. When I notice myself pushing myself to "get something done," I ask myself "IS THIS ____________ really worth a crash? And now I know the right answer.
     
  6. L'engle

    L'engle moderate ME

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    This is what I get, I think. Sort of like my head has metal bars running up the back of my neck, or suffocated, strangled brain. It's not exactly a 'headache' but i actually find it more unpleasant than a standard headache, and much harder to get rid of. My adult life has been a long sequence of doing activity until my head feels this way (and long after, until recently) and then recovering until it didn't, then as soon as my head is comfortable doing activity until the constricted feeling came back. Not what I would recommend, by the way. :p
     
  7. Sing

    Sing Senior Member

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    Well it is good to read this thread. In times gone by I used to rest when I needed to. Now, as if I don't know better, I push myself to continue. I am willing myself to be more functional, like a normal person. I do get something out of this, plus the escapism of activity and accomplishing something, but I am also watching my body and brain grind slowly to a halt. Then, of course, I am worse the next day. I am just so damn fed up with this condition and want to defy it, these days. Of course I am having a tough time this winter. Will need a new way to make peace with my body's needs, meaning a new way of dealing with it imaginatively. That is right--imagination or openness of a new kind--so I can do all the lying down and quitting activities, "doing nothing" in a way which is more emotionally, even spiritually, satisfying.
     
  8. Machair

    Machair

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    Mine is always the same.

    1. I crave fluids and carbohydrates. I don't eat carbs in response to this any more as gives me artificial energy.
    2. If I take my blood sugar it will be low- 3 or 4 in the UK which I believe is 54-72 in The US.
    3. My digestion starts to fail and IBS sets in
    4. Temperature problems occur- night sweats.
    5. Restless legs and headache or migraine.
    6. Feeling wired which I know know is artificial energy.
    7 BP lowers to less than 90/60 and falls when I stand.
    8. Poor sleep either awake all night breathless, or crash out with adrenaline filled nightmares and wake up dizzy.

    If I ignore all these warnings I will get palpitations and vertigo.
     
  9. xchocoholic

    xchocoholic Senior Member

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    My signal is mostly in my head too. I feel pressure and can't think anymore if I'm supine but on the computer too long.

    But, If I didn't push myself, I wouldn't eat, bath or get out of the house. My bp drops quickly after sitting or standing so avoiding over exerting myself is impossible. Not getting out is bad for my mental health. I don't faint tho, I just have petite mals
    and muscle weakness.

    I try to limit my time standing still .. I feel better if I'm moving. Tc .. X
     
  10. Nielk

    Nielk

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    My signal is also an increase of severity of my constant headache and definitely cognitive worsening symptoms.

    I think that we have to listen to our gut instincts more. Our subconscious really knows what we can or can't do. When Iignore this signal , I pay a heavy price.
     
  11. Dainty

    Dainty Senior Member

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    This is one of mine. I don't always recognize it as artificial, though, because in the moment I'm basically "running" from the fatigue. I sure way to check with myself is to stop everything and focus on relaxing for a minute or so, and if it wipes me out that means I need to make myself stop and go rest.

    Another is right as I set about to do something I want to do, suddenly the thought of doing it makes me feel exhausted. Pushing through this one always results in consequences for me.

    If I'm rubbing my eyes and forehead a lot that's generally a sign that I'm overstimulated. I can't rely on feeling overstimulated because in the moment I want to keep doing more, but I'm learning to take notice and of an heed this indication.

    When I'm speaking with someone in person, I can tell the moment I begin overdoing it because my eyes lose the ability to focus.

    For all of these I actually feel that by the time they happen I've already done too much, and it's just damage control at that point.
     
  12. JoC

    JoC

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    Well, one of my first signs is getting this terrible cold on my back and muscle pain. When my head comes in, it is usual to late and I missed the signs...resulting in a relapse. However due to the medicines I take and strict diet I follow they will not take week to recover: 48 hours and I can function again.

    In the beginning I didn't listen to my body and didn't accept that I had a new body, which was not functioning as I wanted and was expected to be doing in order to cope with our hectic society. I felt trapped in a stranger's body, and on top of this in a body which seemed from a guy who was at least 100 years old. Once I accepted this, found some kind of peace and worried less about what other might think a huge weight felt from my shoulders. The only thing which nerfs me still, is my low ability to concentrate and loss of short memory. This is worsening very fast...I hope i will forget that i forget at a certain moment....:D
     
  13. Dreambirdie

    Dreambirdie work in progress

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    I think it's much easier for me to STOP what I'm doing when I am alone. When I am with other people it can get problematic, especially if they are not hip to the illness. I find that in those cases it's much better for me to make something up, rather than to try to explain myself.

    I often feel so mentally disconnected from my fatigue, that I have a hard time finding words to say what I need. That's when I excuse myself and disappear into the bathroom, where I can think without being influenced so much by other peoples needs and agendas. As soon as I have a moment of space to myself, I find the words I need to say. Very simple ones like: I need to go now. Amazing how hard that seems when you're overly exhausted.
     
  14. Valentijn

    Valentijn Activity Level: 3

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    My biggest problem is OI (NMH), and I end up suffering if I ignore feeling light-headed. If I ignore it too long, it turns into a stabbing pain in my brain, and then I'm really screwed and end up crashing :p
     
  15. hurtingallthetimet

    hurtingallthetimet Senior Member

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    anythying makes it worse

    im always in pain and fatigue...thankfully the doctor prescribed a pain medication that takes edge off but im left loopy and in fog....i never feel like doing anything really...im housebound, stay on couch most of time or bed..do things a little at a time lay down in between...

    the worse for me is things that i have to do that i cant take any pain or anxiety medications and its when i need them the most...when i have to drive somewhere...when i have to get grocerys for family...or prescriptions...i try to not let how miserable i am show...i alwyays tell myself im not going to overdo it..but i always panic and try to get as much as i can so i dont have to make another trip...i wish the gorocerys stores like walmart would put thinigs in buggy at checkout and take to car and unload into car like a long time ago when grocery stores did that..that would help alot..

    i always have a flare...and its always worse after doing anytihng...its like no matter what i do im in pain and exhuasted...i usally break down and cry everyday but when i overdo it im hurting so bad that not even pain medications help and i just get hysterical crying...

    i think wehn peopole are as ill as we are that it is very hard to do anythign and very easy to over do it...i dont live near family or friends i grew up with...im very isolated due to social phobias among other thngs so i dont have anyone to help and i cant afford a taxi or pay anytone to do the grocerys etc...these illness are horrible
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Some grocery stores will still do this--don't know where you are but Albertsons and Publix will, as well as more expensive places like Whole Foods. I always ask them to load my car for me.

    Best wishes,
    Sushi

    P.S. LDN helps quite a few with pain, but doesn't mix with morphine
     
  17. Sing

    Sing Senior Member

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    Social interactions are tricky for me too. By the time I know that my energy is up, I also am so slow witted that I can't seem to come up with a polite, effective boundary. Usually the other person is deep into some very important personal story at that point and I never want to leave them high and dry then. So I may say, "I need to leave soon, in a few minutes or 10 minutes, so it would be good to wrap up our conversation now." But the other person often barrels on and when I absolutely must leave, then they come up with the real purpose of their call, or what they really wanted to say! Some peopl talk extremely fast, loudly or with loads of details too, which I try to gently explain that I can't take in. Well, the upshot is that I usually avoid such people, but think that if I do converse I ought to set the time limit at the outset, like 10 mins or 20, and stick to it. A lot of my social isolation comes from not feeling okay about handling these boundaries without having the other person feel rejected or dismissed. Very few understand or seem to try to. If I do allow the conversation to go on too long, I feel absolutely drained, sometimes for days, and it isn't worth it. Many people can get the idea that a person has weakness or limited mobility but they just can't get the idea that talking can be exhausting. A lot of people don't want to recognize this because it is the way they get social support.
     
  18. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    After 13 years I'm still rubbish, its hard to know sometimes because the migraines complicate symptoms sometimes, so i'm on the look out for early signs of both and both can be similar.

    Too much mental and I trance out, if an hour slips by without me realising it, i may have left it too late. But sometimes i don't 'seem' to get a warning. I'll be reading and then in approximately a few minutes, i'm knocked out asleep for hours.

    My mood will start to fluctuate, irritable if its a migraine or i'll have a flash of anger if its the ME, not realising i'm slipping into anger mode as anger gives me false energy to keep going, longer even from a completely empty battery when required. Sometimes i notice and can stop, sometimes i don't; and if i'm pushed to the brink by others i will start crying uncontrollably (and i'm not a cryer) and then i know i'm fully deflated and will severely pay the price. I think i cry when i'm pushed into a corner to keep going by others and know i need to stop but for whatever reason am not allowed and i temporarily mentally crack up and unravel.

    Physically: depends on the action but finding the strength to speak a sentence, going quiet, mixed up words, saying 'what?' a lot, heart fluttering, difficulty breathing, inner tremors, limbs getting heavier then when at the brink, the plugs are pulled out of the soles of my feet where it all falls down and out very rapidly.

    Because I'm so rubbish at taking heed of subtle signs i tend to set a timer for everything I do, to remind me when 15 minutes have passed so that even if i'm feeling okay, or haven't noticed that i'm not, it reminds me to check. It does help because time can be slippery, 15 minutes can feel like 15 years or one second, depending on symptoms so i'm not a good judge.
     
  19. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Totally sympathise with this. Talking has always seemed like the most difficult thing for people to understand with me. They don't seem to be able to comprehend that talking requires an immense amount of energy. Its probably the biggest energy drain out of everything for me and can cause bigger damage than phyical activity. People think resting is sitting or lying still while still having a full blown conversation (or listening to them have one!) i'm exhausted just thinking about trying to escape a conversation that won't stop.
     
  20. Dreambirdie

    Dreambirdie work in progress

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    Hey Sing, I hear you. I have also struggled with "what to say" when confronted with a situation that I have no more energy for. I think my close friends (all 6 of them) now get it, that when my energy is taking a dive, I need to go RIGHT NOW, and they will not take that personally. It's the acquaintances and neighbors, and people that I collaborate with on creative projects, that I have more of a problem with. Most of them are just too damn healthy and energetic to "get it" what this illness is like, and it just doesn't make any sense at all to attempt to explain any of it. So I don't.

    However, because I know that I can't afford to take risks with my health, by over-doing it, I have accepted that some people are going to be offended by me, no matter what I tell them, and that is just going to have to be par for the course. In time, they usually forget about it, and if they don't then.... whatever.

    A couple weeks ago I went down to the ocean to sit on a bench and meditate. This one (rather annoying) neighbor, who likes to latch onto me and torture me with long boring trivial conversation, came riding up on her bike and stopped right in front of my bench. As soon as I saw her, I took a deep breath, said a quick hello and told her "I came down here to meditate, and that's what I am going to do now. Have a good day." Then I closed my eyes and went into my self. No guilt, no head trips, no second thoughts. I knew I did the right thing. The next time I saw her, she rode right past and didn't even look at me. It was actually a relief.
     

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