August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Do you ever feel overwhelmed?

Discussion in 'General ME/CFS Discussion' started by Sarahloudobby, Sep 1, 2018.

  1. Sarahloudobby


    hey everyone
    I just wanted to share where people will understand. I am 39, diagnosed with ME at the age of 23 after about six months of tests and various doctors appointments. I have a huge spectrum of symptoms that seem to come in cycles, I will have months of bad stomach problems, then breathing issues and all the time anxiety. I am a mum of two (married for two years but together eight) and somtimes I just feel like I don’t have enough time in the day to do everything. I also work relief shifts in a care home. I feel like a juggler with so much in the air. I’m scared that if I go to bed for too long I could just stay there for weeks. Somedays I don’t feel too bad and others I ache from head to toe. I love my life and my job but do you ever want just a whole day to rest? I feel guilty if I lay in as my husband works all week and needs rest too. Anyway I just wanted to have a vent of things I keep inside. Many thanks
    Sar x
  2. Lisa108

    Lisa108 Senior Member

    Hey Sarah, your husband seems to be a great guy who loves you despite your illness. Have you told him that you might need to quit working?

    I think if he's informed on the latest scientific findings, he will want you to rest more, so that you can stabilize your health (for the good of your children, too).

    I know the guilty feeling, though. But we aren't lazy. We are sick! Our 'batteries' cannot be charged fully, so it's futile to compare ourselves to people with fully loadable batteries (or to our former selves...)


    If you don't have already, I'd recommend informing yourself on heart rate monitoring. Since I wear a wrist worn HRM (Garmin Vivosmart HR), I notice when I'm about to overdo. Also it is something objective that my family totally convices that I need to rest then&there.

    This page has some useful links.
    Best wishes!
    Peter Trewhitt, Joh, Plum and 3 others like this.
  3. Wolfcub

    Wolfcub Senior Member

    SW UK
    Vent all you need to, @Sarahloudobby. You have a hard working schedule and are dealing with it like a soldier.
    I wish I could give you a week off work. Even one day of lazy Sunday would be nice -hey?
    How old are your children? Even if they are seven or eight (?) they might be able to help you sometimes...bring you a drink, read you a story, paint your portrait while you lie still.....something similar? Especially if they know their Mama is feeling a bit under the weather.
    Sarahloudobby and Lisa108 like this.
  4. Sarahloudobby


    Thankyou everyone. My children are 4 and 6 but they are usually good when I say mummy needs a rest. They both start back at school weds (my little girl for the first time) giving me more time in the day. I’m in work today actually but it’s a 50/50 type of day health wise. It’s great to know people are there to listen x
    Lisa108 likes this.
  5. Wishful

    Wishful Senior Member

    There's no reason to feel guilty. Getting ME/CFS is no different than getting any other unexpected disorder. If you'd contracted malaria instead, and the doctor ordered you to rest in bed, would you feel guilty, or would you just accept it and do your part in getting healthy again? If your body tells you you need rest, rest. If you ignore the warnings and push yourself into a long-term crash, then you'd have something to feel guilty about.
    Sarahloudobby, and Lisa108 like this.
  6. place

    place Be Strong!

    I was just thinking this. Your diagnosis and situation very similar to mine. It’s to a point, that I get really angry if people careless add to my workload. I have started to look for ways to simply and delegate my energy to all my life's areas. I think as women we take on too much .

    Statistically, women do twice the amount of house work. I refuse to do more than my share and everyone else need to pull their weight. That includes the children. I only do my laundry and alternate with my husband fo the kids laundry.

    At work I try to be efficient in what I do. I send emails instead of lengthy conversations. I get time and energy suckers out of my office by telling them I need to use the restroom! I often complain loudly about being stressed out and needed to get to work, even though it’s not true. I practice deep breaths throughout the day. And it really helps.

    One thing my husband and I do is get one weekend day to ourselves, while the other handles the kids and what not. It gives us both a day to get stuff done or relax if needed.
    Judee, Sarahloudobby and Lisa108 like this.
  7. Judee

    Judee Senior Member

    I love how you worded this. It's a perfect picture of what has happened.

    I too feel guilty and lazy though I push myself sometimes to get things done because it drives me buggy not to be able to...but then, of course...CRASH. :bang-head:
    Mel9, Sarahloudobby and Lisa108 like this.
  8. Sarahloudobby


    I feel so supported on here ❤️
    Lisa108 likes this.
  9. valentinelynx

    valentinelynx Senior Member

    I work, but those who know how sick I am don't know how I do it. Neither do I, except that if I didn't, we wouldn't have a place to live or food to eat... After working a few days, I spend several in bed. So far, I've been able to carry on like this, which has been fortunate. I imagine, however, if I didn't need to work, my health would have a chance to improve. So, no you shouldn't feel guilty for wanting rest. You need rest, and should have rest. Whether you can get it is another question. I wish you the best of luck, and hope you can find a way to get what you need!
    Sarahloudobby and CreativeB like this.

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