How do you explain how easy it is to overdo things when suffering with fybro

Posted , 7 users are following.

I visited my son, his partner and my little granddaughter who lives a long way away so I had 5 nights away from home plus 2 long journeys of over 5 hours.  This always wears me out and I accept I will need to recover when I return.  I came home on the Monday and by the Friday I was beginning to improve but not back to normal.  My partner who is usually very understanding decided to secretly invite another 2 grandchildren ages 12 and 4 to stay over for 2 nights.  I found it hard to act excited when my daughter arrived and told me the news.  My partner is very good with the children and does try to keep them busy but I still found it too soon after my other visit and am now suffering again. I’m in lots of pain and exhausted.  I thought he got it but when I try to explain it was too soon he doesn’t get it.  He got up with the youngest in a morning but I couldn’t sleep properly because of the noise and this just still makes me feel rough. How do I explain to everyone without sounding mean and ungrateful how it is for me?

kathleen 

0 likes, 6 replies

Report / Delete

6 Replies

  • Posted

    Hi Kathleen, you don't have to tell me about overdoing it with our condition. Trying to get family to understand was the hardest. I left literature I was given or researched myself around the house. It helped a bit, introduce them to this site, as they can read about some of the things we go through. These are just subtle ways. It sounds like you have a good understanding family, but when we show signs of seeming ok they think it's fine, so be honest and tell them. It's not being mean.

    Report / Delete Reply
    • Posted

      Thanks normally he seems to understand and try’s to explain to others how I get but for some reason this weekend he just seemed to forget.  His heart was in the right place the grandchildren that stayed over are my daughters so he def goes out of his way to be god to them and they love him to bits.  But it has left me struggling to get back to normal.
      Report / Delete Reply
  • Posted

    Hi Kathleen,

    Well, what I have learnt over my long journey with Fibromyalgia, is that most of us or perhaps all of us sufferers, are usually caring, empathetic and sensitive people. So physical exertion can definitely drain our energy, but what I have found much more debilitating is the exertion to our emotional energy. We would probably never treat others the way we allow ourselves to be treated. So we endure a great deal of disrespect, rudeness, and often a trampling of our own basic human rights. We can be an easy target for those who are thoughtless and even a bit self centred. The emotional pain we experience as a result can be more taxing on our physical and mental energy than we give credit to. So often, even dealing with family on a daily basis can be very exhausting. Even a more pleasant visit with our loved ones, can also take its toll on our energies. But the negative sort of emotions are the most damaging. So I have leant to stop explaining, defending etc, myself and my condition. The more you respect your own needs Kathleen, the more your family will learn to respect your limitations and your right to be treated with more empathy and regard. We do often teach people how to treat us. So learning to say a very simple word can make a big difference. No, interestingly, often leads to respect. We as women, think that our family will not love us or value us if we don’t give in to all their needs, whims or demands. Ironically, the opposite usually is the outcome. We can sacrifice our needs for just so long without our bodies beginning to protest. And we can unknowingly become enablers to others. So learning to take better and more loving care of ourselves, is crucial to maintaining a balance to our precious energy. Stress to us is like a slow poison. Self respect and self care is a must my dear girl! You needn’t make excuses or the habit of trying to explain yourself to those who are supposed to have love for you. Love yourself first and respect your needs and limitations, and the rest will come sweetie. Sending you a warm gentle hug! Maggie

    Report / Delete Reply
  • Posted

    I suggest you download all about Fibromyalgia-from a proven website and print it out, .and give it to them or anyone else who just doesn’t understand, we go through enough without having to explain what it is that is hurting us to others. It informs them and quite frankly if they don’t understand I would put some healthy boundaries up with people.  I had to, it meant some family members were cut off fo a while, I hated it too and missed them, but when they cared enough to understand and get it, they were back in my life. You must take care of you, no-one else will, and that goes for your doctors too. I had to take my health into my own hands, once I was informed enough I could hold my own with a local GP, how all goes well for you Kathleen, really feeling for you, gentle hugs from over the seas..be blessed and have a lovely day..😍😍😍👍💐

    Report / Delete Reply
  • Posted

    Have you ever heard of the spoon theory? It's a great way to help others understand.

    The fibromyalgia spoon theory goes something like this: A person starts the day with a certain number of spoons. Each spoon represents a burst of energy. Showering in the morning might require a spoon. Getting dressed is another spoon.

    Miserandino wrote about this theory, recalling her meeting with a friend in a diner. The friend wondered what living with lupus was like—not from a physical perspective, but from a psychological one. What does it feel like on the inside, the friend wondered.

    Miserandino serendipitously thought of the spoon theory, which has since spawned the term “spoonie” to describe fibromyalgia warriors, while trying to help her friend understand the rigors of living with a chronic illness.

    On a whim, Miserandino grabbed a dozen spoons in sight and handed them to her friend. “Here, you have lupus,” she told the friend. The friend counted the spoons, realized she had 12, and jokingly asked if she could have extra.

    “No,” Miserandino told her, suddenly realizing that she has hit upon a good way of explaining the unexplainable—what it’s like on a psychological level to evaluate your day, every day, and know that you do not have the energy for everything.

    Miserandino and her friend went through the day. Showering? That’s a spoon. But wait, Miserandino says, the implications of chronic illness begin even before you rise. She describes:

    “You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine, you might as well give up all your spoons for today and tomorrow too.”

    Getting dressed cost another spoon, but Miserandino tells her friend about the decisions that go into getting dressed. If a particular part of the body hurts, or is bruised from the disease, that influences the day’s outfit choice.

    Already down multiple spoons and not even out of the house yet, the friend began to understand that not all the day’s desired activities would be completed. Miserandino writes:

    “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

    The fibromyalgia spoon theory continues to dinner. While a healthy person has an array of choices for dinner, a person experiencing pain, fatigue, or nausea from a chronic condition must approach mealtimes a little differently. With one spoon left, Miserandino explains:

    “If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then, I also explained that I didn’t even bother to add into this game that she was so nauseous that cooking was probably out of the question.”

    Life at a slower pace is a key for living with chronic illness

    Learning to slow down is the hardest thing Miserandino says she’s had to learn. Learning to feel left out, be okay with saying no, and prioritizing so the most important activities get done early enough in the day when there’s still spoons available—these are the things people without chronic illnesses can’t understand but the fibromyalgia spoon theory helps explain.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up