Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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What are you able to do on a good day?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by unicorn7, Sep 18, 2017.

  1. unicorn7

    unicorn7

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    I have been reading here for a while now and I'm really wondering whether everyone has very good and very bad days, as I do. It sometimes seems like other people are more constant.

    When I have a really good day, I can do a lot (not like normal people, but still). I don't seem to have trouble actually doing something, but the pain and illness that comes afterwards is horrible. Sometimes is lasts for a day (if I did something small), sometimes it lasts for 5 days.

    In the moment that I'm actually doing something and my heart rate is up, I feel a lot better. I feel better until I sit down and my heart rate comes down and I start feeling awful in about 5 hours. This tricked me into constantly doing something, even though I had to pay the price the rest of the week.

    Does anyone else feel better when they do something active? (during, not after ;) )
    Does anyone else have such a difference between good and bay days?
     
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  2. Dechi

    Dechi Senior Member

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    Yes, I do feel better when I am more active, mainly because it lifts my depression. I feel like living again. My PEM is not acute, and I have trouble linking it to a particular activity. Probably because I never really do anything exhausting, except if I am getting tested.

    So basically I have better days, and " normal bad days " and sometimes really crappy days, but they happen slowly and without me really noticing, until one day I wake up and think : wow, I've been really bad these past few days days.

    All my life, I've never really paid attention to how I was, and I've always pushed through everything, so I suppose I am still not very good at acknowledging my physical difficulties. What is the harder for me right now is the depression.
     
  3. hellytheelephant

    hellytheelephant Senior Member

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    S W England
    I would never describe my levels as 'constant' anything! I do try to minimise what I know will cause flare-up, and I do try to pace etc....but sometimes I crash for no reason. Sometimes I wake up feeling more rubbish than usual...other times better. Overall I have found that keeping a daily record of what I do and meds I take, my mood etc, has shown me what my body will/won't cope with. Basically even if I can push myself to do more, my functionality will then drop the day after or week after so it evens out.

    I fluctuate between level 10% of normal function ( bedbound) and 20% ( able to leave house once or twice a week). With occasional days at 30%...which then crash me.

    Learning to pace is helpful if you can get your head around it.
     
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  4. Wonko

    Wonko Senior Member

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    The other side.
    Good day?

    Today has been fairly productive, I've made a bad mushroom soup, which having tasted I think the choice not to bin the mushrooms may have been an error.

    I've rung the electricians who broke my hot water during an inspection last thursday, to get them to come out and hopefully fix it.

    I've fed the cat, twice (but the last time was 2 hours late), I've eaten snack food and unfortunately, some soup. I have no idea if I have the energy to eat again today or if so, what.

    I've been on here for a few hours, with one busy period trying to catch/keep up and made a few nonsense posts, like this.

    I will have to feed the cat at least once more, check her litter tray and remember to take tablets before going to bed.

    This is a productive day for me, I wouldn't say a good day.
     
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  5. tudiemoore

    tudiemoore Senior Member

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    And that's about me too--
    Some ability now to get a bit more energy if I rest (sitting, feet up usually) which was not the case in earlier years.
    I call it re-grouping!

    tm
     
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  6. Groggy Doggy

    Groggy Doggy Building a New Home

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    On a good day, I crank up the music and dance by myself for a few songs!!! It's great stress therapy.

    Then I retreat back to my recliner and drink a tall glass of water.

    Well it's fun for a few minutes, to feel happy and free, despite any payback I may be burdened with later.

    Live in the moment I say!!
     
    JayneM, merylg, Wonko and 2 others like this.
  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Nineteen years ago on a good day I could do anything I wanted. There were probably less than ten such days over a number of years.

    Twenty odd years ago on a good day I could make dinner. Now a good day means I can get dressed and travel by car somewhere but not do too much.

    Twenty odd years ago on a bad day I could manage to stare at my computer screen, and think about going back to bed. Nineteen years ago on a bad day I still had to go lie down, even though on a good day I could do what I wanted.

    Now on a bad day I get out of bed for an hour or two a few times in the day. That is it. Healthy food, showering, watching a movie ... let me quote a line from a movie ... "A dream for some, a nightmare for others."
     
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  8. Daffodil

    Daffodil Senior Member

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    On a good day, I can walk 2 miles and still do a little housework. On bad days, I lay there the entire day. Most days are somewhere in between.

    Brain is bad everyday
     
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  9. IreneF

    IreneF Senior Member

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    On a good day I can go to the grocery store. If I go to the store and cook dinner, I usually crash the next day.

    On a bad day I get out of bed, but don't get dressed. I sit on the couch, take a nap, then sit on the couch some more.
     
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  10. arewenearlythereyet

    arewenearlythereyet

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    On a good day, I can take a shower and walk 2 miles or do some light gardening for an hour (with about 15 rest breaks), or I can cook something (with minimal standing), or I can spend around 4-6 hrs doing desk work (with breaks)

    On a bad day I can get out of bed, make myself a coffee, sit/lay on the sofa.

    its intense bursts of energy that I can't do, and this includes lifting or carrying weights over 2kg. A couple of minutes of this would definitely give me PEM for a day or two. There is also the accumulative effect of slightly overdoing it for a couple of days...that's what still trips me up.
     
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  11. erin

    erin Senior Member

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    On a bad day, I lay down all day. Cry meal times, no appetite.

    Good day? I forgot, been bad for so long.
     
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  12. bertiedog

    bertiedog Senior Member

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    Monday was a very good day and I did some cleaning, coloured my hair, then did a bit of ironing but had to sit down because the energy was running out. That was the morning. After a short sleep after lunch I was able go out for a lovely walk with my dog and was out for an hour but only about 30 minutes of that was walking.

    After a rest I was able to wash up after dinner and after another rest able to have a go at a jigsaw for about 45 minutes until I started getting symptoms that I needed to lie down and do nothing else.

    It amounted to 10,500 steps which I haven't done in ages and I realise how lucky I am to get the odd day like this and I am very grateful for it, never taking it for granted. Yesterday still good first thing and went to Pilates but made the mistake of doing too much and crashed by the end of the class (my back went and then everything else) so spent the rest of day lying down with all my ME/CFS symptoms back. I had no warning this was going to happen.

    Pam
     
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  13. Hilary

    Hilary Senior Member

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    I agree with @arewenearlythereyet , I find there is an insidious cumulative effect over a matter of days or even a week or two, which can make it hard to keep track of where I am on the slippery slope towards a crash. Sometimes cause and effect is quite clear, other times less so - and my days are definitely not consistent.

    On a good day I can do a three hour shift at my local library, do a quick visit to the supermarket and still make dinner. On a bad day (which invariably involves hideous migraines), I can (eventually) get out of bed, forage for something to eat that involves no effort, spend a little while on here but generally be sofa-bound.
     
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  14. Vickytoria1988

    Vickytoria1988

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    GREECE
    its nine months since my big crash and I am still exhausted and passing my day in bed in a status of ''nirvana''. I do not read or watch movies because it feels overwhelming for me. I try to keep my days free of many stimulus, I avoid noise and for the first time I avoid my friends a bit. I started Neurontin though (it works!!!!less pain yeah) and today I spent almost 5 hours with my cousins, drawing playing and studying. I am exhausted now. It will take me some days to recover. My head hurts still and my right leg is almost useless bcz of a quite painful lumbar puncture.

    Yeap I am like a nanny. What I hate the most is that my body is turning to a bad BAD jelly, I cant really exercise without falling apart.

    HOPE DIES LAST

    Good night to all!!!!
     
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  15. Stretched

    Stretched Senior Member

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    So much rest over the last 5-10 years my whole being, mental and physical have become acclimated to an almost deconditioned state. Nevertheless, on a good day
    I like to take a drive, shop a little, or eat out. Then, after a couple of hours it's back to the house, and on the sofa to rest up.

    A few of years ago while in an 'up' mode I tried for a week's vacation at the beach. After a 300 mile drive I ended up staying the week on the sofa - severely crashed until the last day; then (wife) drove back only for me to resume crashing at home. This ended my travel though I'm contemplating trying it again out of sheer need to get away.:nervous:
     
    Last edited: Sep 22, 2017
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  16. jpcv

    jpcv Senior Member

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    On a good day I can work all day, go to the supermarket and take care of my kid. Or just walk and be around with my son.No exercises, though.
    On a bad day , I barely can work. If it´s not a working day, i spend most of the day in bed.
     
    Stretched likes this.
  17. Mithriel

    Mithriel Senior Member

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    I found this article helped me http://www.hfme.org/adrenalinesurgetips.htm

    Whether it is accurate about adrenalin or not, it explained things that puzzled me. For instance, in the days before I was housebound, I was going shopping and missed my bus so that I would have a lie down before the next one. I actually got worse with the rest and could barely get out of bed for the next few days. My GP gave me a relaxation tape, which felt good, but after I listened to it I couldn't get up. I learned not to lie down before I had to cook tea for the family as I would be less likely to manage. It went against everything I knew about ME.

    Since I read this a few years ago I have used it as a guide to when I am doing too much. If a little lie down makes me feel worse I have overdone things. It is easier now that I am using a fitbit heart rate monitor.

    I also use this "adrenalin" boost to do things I want. I have to visit my son to see my grandchildren as we don't have room so I know I am likely to enjoy myself and pay later :) The frustrating thing is thta on the way home I start thinking of all the things I can do the next week as I feel better (relatively!)
     
    nettle_tea likes this.
  18. perchance dreamer

    perchance dreamer Senior Member

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    On a good day I can grocery shop and cook a delicious, creative dinner. DH always cleans up, so that helps. He also shops for dinner on the weekends, so that helps, too.

    Occasionally, I just can't manage it, so I'll get a gluten-free pizza from our neighborhood pizzeria. I'll also buy their kale and Brussels sprouts salad to make the meal more healthy. It's actually really good, with a punchy lemon garlic dressing. But I'd much rather cook a nice dinner.
     
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  19. nettle_tea

    nettle_tea

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    These days, a good day means I work for 7 hours, come home, cook dinner, do some chores/gardening, and spend the evening sitting upright. I might even be able to have a friend over for dinner, or walk 10 minutes to the lake and look at the ducks. I can go up one flight of stairs at a time without thinking about it, but for more than that I have to use the elevator. On a good weekend day, I can leave the house for maybe 4 hours.

    On a bad day, I don't leave the house, and spend most of the day lying down. It's hard to stand up long enough to cook. I live on the second floor, so I might only be able to get downstairs once to check on my veggie garden.

    I'm still figuring out what exercises are safe for me. I don't think it's safe for me to walk very far, at least for the moment, because my recent flare-ups primarily affected my legs. But I can ride my bike gently for 20 minutes or so at a time.
     
    Stretched likes this.
  20. AndyPandy

    AndyPandy Making the most of it

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    Australia
    :) Have a shower and wash and dry my hair, get dressed, go out for a meal, walking a few steps or using the wheelchair.
     
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