Posted in Fibromyalgia, Uncategorized

F is For Fibromyalgia

Posted on by D. Parker

There is nothing in this world like someone who believes in you, who’s there for you and who understands maybe you’re not always 100%, but you’re doing you’re best. Whether it’s a family member, a friend, a co-worker, a social networking friend…hopefully you can be there for them too.

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Illness is frustrating. In the case of Fibromyalgia the symptoms are numerous and strange, but people’s reactions to it are even stranger.

1. The Doubters    They doubt you have it, many doubt it even exists. Some tell you outright, others say things like, you look good with an arched brow or you don’t look sick. Or the classics like: everyone gets tired…you are getting older…Snap out of it…and the ultimate, there are people much worse off than you. Thanks, it makes me feel so much better to know there are people suffering, cheers me right up. Huh?

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2. The ItsGoners     If you don’t look like you’re on Death’s door they decide you’re fine. If they see you and you don’t look good or are having a flare or mention you’re not feeling well, they say things like you looked good last time I saw you so I thought you were better. It’s not a cold, it doesn’t just good away (I wish).

3. The TryHarders    These folks love to fix everything by giving you a rousing lecture on what you could be doing (as if you haven’t tried everything short of a Witch Doctor or alien crystals) or explaining what you’re doing wrong. Always good to get advice from someone who has no idea what they’re talking about. Maybe if you go out more…I thought you were stronger than that…pull yourself together…fibromyalgia16

4. The Renouncers     They just completely ignore that you’re ill or even ignore you. You get no empathy or support, just stories of their busy life, or their difficult life, etc. Even when you try to do something they’re never there to support you, but they sure get upset if you’re not there to support them.

5. The Carers   A rare breed. They have empathy for your illness, not sympathy. They realize that you’re doing your best and are there for you in the way you need.

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Pick an illness, or a life challenge, hopefully you have some #5s in your life and hope you can be a #5 to someone else.

Author:

Very me

48 thoughts on “F is For Fibromyalgia”

  2. You haven’t tried ‘witch doctors and Alien crystals’? I thought they were at the top of the list? Seriously I think you nailed it… I have one carer…my hubby and without him I’d be ‘A Goner” but not in a nice way.. Thanks for sharing. Susan x

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    1. Not that I haven’t thought about trying them lol I’m glad you have at least one Carer, they’re hard to come by. I’m glad you enjoyed it Susan, it’s nice to hear from you. 🙂

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      1. It’s a hard road and I’m still ‘fighting’ accepting it – having ‘a carer’ is one of the things I find the hardest of all – and he’s my husband! I think I’m still stuck in the ‘unfairness’ – for him. I could go on but I won’t. Thanks for the comment. You’ll hear more 🙂 Susan x

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  3. Ugh, dealt with a #3 earlier this week, but I’ve encountered all these. It’s so hard to be honest sometimes because I don’t want to deal with people’s reactions. I’m lucky to have a few #5s.

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  4. This is on point with my experience over the last 5 1/2 years I have lived with this. Prior to April 2008, I was #5 but I had no idea until it became my reality. I was suddenly in pain all the time. The pain would be so severe and random in which part of my body it showed up in. I was falling down a lot as my legs would just give out on me. It would be so steady and unbearable that I spent the first 2 months in bed and needed assistance to get to the bathroom.
    I have been to doctors and pain specialists looking for help, desperate for relief. I have epilepsy, so a lot of the medications such as Lyrica and Cymbalta are contraindicated for me. I am finally on a sustained release pain medication that makes it possible for me to get through the day until about 5 pm.
    I don’t talk about my pain much but it is still there every day. You loose support and friends if you talk too much because they are uncomfortable with it, unsure or doubt your disease exists.
    I will keep fighting through the pain to live a better life. I shut down often on the days that are unbearable, so I come across as antisocial at times. My #5 friends understand.
    Thanks for expressing this sad reality of Fibromyalgia. It is good to know that others feel the same and i feel less alone in this struggle.

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  5. Pingback: F is FOR FIBROMYALGIA | Peeves and Rants

  9. Here for #1000Speaks. I deal with chronic pain & cPTSD. Some people wouldn’t know their own ignorance and lack of tact, even if it slapped them in the face. But enough about certain members of my extended family…

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    1. lol Oh no, I’m sorry to hear that. I’m so glad you dropped by so I could find your blog which gave me some giggles.
      Glad to virtually meet you, hope we can virtually visit often. 🙂

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      1. I’m glad I could add some mirth and chuckles to your day.

        Looks like you found some posts that link to my wife’s blogs, too (The Gratitude Challenge is one of hers).

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  10. Wow. I’ve said almost exactly the same things – my Flare post had a Try Harder, my Don’t Speak posts have 1s, 2s and 3s throughout. Spooky that so many of us experience chronic illness in the same way. Make that tragic.

    I’d add another category – similar to 4, but these just disappear permanently. So #6, the Disappearers/ Deserters.

    Fortunately, I have a #5. Ben. He doesn’t understand 1-4 either. My mum said to him once on a visit, when we’d been together about a year, “Doesn’t it get on your nerves, her being ill all the time?” – Not in a concerned way, more in a I Don’t Know How You Put Up With It way. Nice. Think she may well need a whole new category all to herself!

    Hope yr weekend is going well 🙂 How are you feeling?

    L. X

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    1. If you have any #5s in your life you’re ahead of the game. As for the others, they don’t know what they’re missing out on. Their loss.
      I’m sorry your Mum is like that…I suppose people get so wrapped up in their reality they can’t see how hurtful they are.
      Did you read https://yadadarcyyada.com/2013/08/31/fibromylagia-is-just-another-word-for-lazy/ It has some points you might find familiar as well.
      It’s been a lovely weekend so far, how about you? 🙂

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      1. Lol, I’m acutely aware that I am extremely, massively, hugely, monumentally lucky to have B. Took me a long time to get past the Groucho Marx thing, tho. I couldn’t believe it.

        And yeah, you’re right about my mum. Sad thing is that she always says her mother was a “cold-hearted bitch” and she swore she’d never be that way. B is under instruction to shoot me if I even start to turn into my mother.

        Of course I’ve read that!

        Glad yr weekend has been lovely 🙂 Mine’s been ok, ish, thanks for asking 🙂 Did two posts yest, working on a third about Vitamin D, so the lorries, freight trains and hammers were all over me in the night. My resident poisoner gifted me a migraine this morning, too. It’s just gone 1pm now, one of the furballs woke me up a while ago, when I was impersonating a coma after breakfast. I never ever get used to Pay Back. It’s like the way they break you in the army – dig a hole, fill it in, dig it again, fill it in again, dig it again…….I never learn. But at least I did two big posts!

        Has your list of followers disappeared from your stats? Mine’s vanished. There isn’t even a heading for it today. Xx

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      2. Sounds like weekend has been funky. 😉
        I really check my stats, I know I should but I rarely get around to it…there, I just looked, no, it’s there. My WordPress issue this week is I press Like on someone’s post, then I go back and it’s not Liked on some. Aaaarghh! Tried to ask for help, got stuff about changing my browser blah blah blah and I thought, yeah, it’s only WordPress so I’m going to guess…it’s WordPress. Hope your followers return…and my Likes. 🙂

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      3. Thanks! Me too!

        Am getting distinct impression that WP does this sort of thing on a regular basis. I’m still arguing with the editor thingy because when I’m writing, unless the toolbar is in view, trying to use it results in any highlighted text unhighlighting itself, and the cursor jumping back into another section of text. And the top and bottom bars obscure my text, so I have to insert several space lines so I can proof what I’ve written, then go back and take the spaces out at the end. It also insists there’s a more up to date version of my edited post in my browser when I’ve literally just updated and saved. Is all of that common? Xx

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      4. WordPress is constantly fixing things, especially if they work well…it seems neverending and really my only source of frustration with blogging. Nothing is surprising here, it’s like Alice in WordPressLand, I’ve seen as many as six impossible things before breakfast. 😉

        Liked by 1 person

      6. PS WP has been unfollowing blogs for me, as well as removing my likes, too. Another update, do we think? Or gremlins again? Oh, wait, WP updates seem to be carrying truck-loads of gremlins with them.

        All the New Follower notifications have disappeared off my drop-down thingy as well. I wanted to check how many of my followers I’m following, but everything Follower associated has just gone. I expect it’ll come back. It still says I HAVE followers (31 now! Lol) it just won’t tell me who they are today.

        Have a really good afternoon, I’m being bashed by the Pay Back bitch again now, so I’m going to stop for a bit. 🙂

        Nice chatting – wish there was a message-chat thing here. Xx

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  11. I’m sorry to hear you suffer from this. It’s a real ‘F’ word, huh. I have chronic pain and I get all those things you describe, but I am quite fortunate to have many #5’s in my life. But, the world needs more. The world needs empathy on a whole host fo levels. Oy. I hope today is a good one for you!

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  12. Donna, great post! I think the people who make remarks like numbers 1 to 4 are people who are judgmental in general and have similar “helpful” hints for everyone in their life about *some*thing. Better to have a painful physical condition than a miserable spirit!

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    1. Such a diverse group!!!
      Thank you for including me (I’m #13, #46, #49, #64 and #81 unless I missed any!).
      Very kind of you to spread the #bloglove.
      Hope this day is being good to you so far. 🙂

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