Posted in Autism, Fibromyalgia, Uncategorized

Fibromyalgia is a Four Letter Word

This isn’t a whiny post (at least I’ll try, no promises), or a ‘it can be fixed blog’, or whatever. Just a few thoughts about why people think Fibromyalgia isn’t a real syndrome, that it’s just lazy, unmotivated people and mostly, why I don’t have all the answers.

 

fibromyalgia8

Let’s begin at the end, I don’t have all the answers because I don’t sleep enough.  Also, I’m not a million years old.  In addition, I’m certainly not a super genius.  Oh, did I mention I don’t sleep enough?

People prefer to think people with disorders such as Fibromyalgia are lazy because they don’t want to accept that you could wake up one morning and have something like that or Chronic Fatigue Syndrome or Lyme Disease and so on.

Instead of doing the whole there-but-for-the-grace-of-God-go-I thing, many people just decide that people with these illnesses could do better if they just got up and did something, or they just aren’t motivated, or they’re lazy, or they’re not trying.

It’s easier to believe that than believe someone who was full of energy and often an A Type Personality can suddenly be fatigued, full of pain, insomnia, frustrated, sad, have massive struggles to function, and so on.

fhfif4Therefore, Fibro becomes a joke, a stain, a dirty word because otherwise people would have to accept the reality that people get sick.  They get chronic illnesses, they get terminal illnesses, and they live a life of agony and sometimes, they die.

It’s people saying someone with cancer should fight the cancer as though that will fix everything.  I wonder if people ever thought of how that makes people feel when you’ve lost a loved one to cancer?  Oh, so my loved one just didn’t fight hard enough, well, thanks, that makes me feel so much better.

1battle12

The same goes for those who’ve lost a loved one to suicide. I’m sure they feel horrible enough without others implying their loved ones gave up, chose to leave, or just didn’t fight hard enough.  Yes, poking a toothpick at a dragon works so well.

I don’t live in someones head so I can’t say if they tried, if they fought, or if they chose, but neither does anyone else so why are so many people qualified to make these judgmental statements?

1thera5

Instead of mocking someone with an illness, try having empathy for him or her.  I’m sure there are some pitiable individuals who would prefer to be ill than well, but come on, does anyone seriously believe that’s a majority?  Most people would choose to be well. 

Most people would choose to have a full life, a life free of pain.  Most people would choose to beat cancer. Hell, most people would choose not to get cancer at all.  Most people would choose not to have a mental illness.  If there was a choice involved.

People are finally coming around to the belief that people who lead a homosexual lifestyle didn’t chose to be that way, it’s just the way they are. It has taken a long time and there are still haters out there, but I bet so many people are happy to see a light at the end of that rainbow.

asgoodas5I wonder when that day will come for people with chronic illnesses like Fibromyalgia, or people with mental health issues, or people with Autism, etc.  I wonder if or when people will see them, really see them, for who they really are:  your Mom, your child, your sister, your friend, your co-worker, your Dad, your teacher, your brother, your minister, your neighbour – just people.

Don’t judge people.

Have a little empathy.

Those people might be interesting, or fun, or brilliant, a hope for the future, a good friend, but you’d never know because you made assumptions.

Don’t miss out.

Advertisements

Author:

Very me

199 thoughts on “Fibromyalgia is a Four Letter Word

  1. It is a sad state of affairs that so many people don’t understand these illnesses. For those suffering from them it is hard enough without having to justify their lack of energy and lack of motivation to someone who refuses to acknowledge the illness even exists.

    Like

  2. I missed this the first time round, and just got to it from doodly surfing other posts. Good one.

    I’m a massage therapist, so I know just exactly how much people with fibro are NOT farting around, and how in some ways the crappiest thing they face is people thinking they are goldbricking. One of my favorite clients does a battle with chronic fatigue and fibro every day of her life and sometimes I sense that the biggest thing she has gotten out of coming to me is that I don’t for a minute imagine it’s imaginary. Who the eff would want to be unable to walk around the hood on a spring day without spending the next two days in bed?

    “The Body Bears the Burden,” by Robert Scaer, if it hasn’t crossed your radar already. Actually everything by that author is good.

    Like

    1. Thank you for your kind words and understanding. Yes, people’s attitudes towards Fibromyalgia is an extra burden. Yes, who would want to be sick? Thank you for the book suggestion, I believe I may have read something of his but I would have remembered that title. I will look it up. Thank you so much. 🙂

      Like

  3. Great post! I live with Chronic pain. So I know all too well what it’s like to have ignorant people tell you that exercise or get out more would do you good. I usually just laugh and say yea you’re probably right. But I always wish I would say; Maybe you should look up Arachnoiditis, or Fibro, or lupus, immune disease, or Chronic spinal pain before you go saying something stupid.
    It’s not easy living with an invisible illness. But we do the best we can, I don’t get much sleep either. Soft hugs coming your way..

    Like

    1. Thank you so much for the kind words and the reblog. Yes, if people would stop judging and being so intolerant, they might know what they’re missing out on. Thank you for the soft hugs, much appreciated. Thanks for dropping by, it’s extra special because I found your blog this way. 🙂

      Like

  4. Reblogged this on Annie's Blog and commented:
    It would be great if people looked up invisible illness. Chronic pain, Fibro, Lupus, arthritis, Arachnoiditis. But they won’t. There are over a hundred million people living with Chronic pain in the U.S. alone. Just think before you tell someone to get some exercise. We all wish that was the answer.

    Like

  5. Bravo ! A voice for those who deal with various illnesses that most don’t take the time to educate themselves about . Instead they would rather make ignorant comments . Thank You for writing about something that i feel isn’t discussed enough . Great job !

    Like

    1. Thank you so much. 🙂
      The world would be a better place if more people would find out what they’re talking about before they talk about it. 🙂
      Hope each day treats you kindly. 🙂
      Thanks for dropping by. 🙂

      Like

  6. I was diagnosed with fibromyalgia many years ago….eventually found out the aches and pains were being caused by Graves (hyperthyroid) disease, which is autoimmune. So I got the radioactive iodine (RAI) to ‘nuke’ the overactive thyroid. Now I have to take thyroid medication every day to keep things steady. And I have never had ‘fibromyalgia’ again.

    Like

    1. It’s difficult to be misdiagnosed, but luckily they found out it was Graves disease (fascinating because most of the symptoms are so disimilar to Fibromyalgia) and were able to give you relief.
      All the best Mary. 🙂

      Like

  7. Just had a situation where a family member was invited to not come to any of the wedding parties because of child’s psychological issues. That is so rotten. They weren’t even discreet. Announced in front of child. That is so rotten.

    Like

    1. That is so inappropriate and unnecessary.
      I don’t know why people can’t just even attempt to see things from others’ points of view. Tolerance, acceptance, compassion and empathy can go a long, long way. 🙂

      Like

  8. Love this one . . . and it hits close to home on so many levels – I live with fibro & diabetes – compassion is hard to come by when people don’t understand what these chronic illnesses can do you, that sometimes hurts more than the physical pains of it all.

    Two of my boys are autistic, one is bipolar as well, and even the ones closest to us sometimes take on the attitude that they could be different if they tried. It’s frustrating and sad.

    Thank you for writing this 🙂

    Like

    1. My goodness, yes, it is sad that people can’t accept and enjoy people as they are. I understand sometimes it’s a lack of knowledge, but it would be better to know and not judge.
      Thank you for sharing your story. 🙂
      Hope this day is treating you and yours with care. 🙂
      Gentle hugs. 🙂

      Liked by 1 person

  9. It is a 4 letter word P-A-I-N. Some days I feel like someone beat me with a bag of rocks – others – like nothing happened. No rhyme or reason though I do notice that being exposed to toxic chemicals causes all sorts of pain and stiffness. Hang in there!

    Like

    1. Yes, pain would be one of the 4-letter words I’d use about Fibro. 😉
      There doesn’t seem to be a pattern, does there? Just enjoy the good days and get through the bad and find some good. 🙂
      Gentle Fibro hugs, Anita. 🙂

      Like

  10. Donna, I wish more people shared this mind-set.

    I hadn’t really considered the idea that our un-supporters are actually in denial for themselves. That’s very interesting. I do know that my cancer had that effect on a lot of otherwise good people. With all the insistence that I get well, it often seemed that I should do so to reassure them that it COULD be beaten, so that if they got it, they had some hope of beating it, too. I guess that’s easily transferrable to fibro.

    Mostly though, un-supporters in my life are too arrogant/ ignorant to even imagine fibro/ CFS/ ME /PTSD could happen to them. And my mum has a long history of depression and “nerves”, but never ever has she even once expressed any sympathy or empathy or understanding or even concern when I’m going through it. I had to literally beg her to ring me when I was alone and suicidal. I guess some people aren’t wired for nurture. X

    Like

    1. Yes, I think it’s the same with a lot of things. People just want to hear that things can be fixed.
      Some people can’t get past themselves long enough to be there for others, a sad truth, but one better faced, I suppose.
      Gentle Fibro hugs. 🙂

      Like

      1. Unless one of our clocks is wrong…computers and internet do funny things. My computer wasn’t even on then…hmmm, now I’m suspecting gremlins. 😉

        Like

      1. Don’t they just! They must think we’re very dense, not being able to perceive the same things they do. They must roll their eyes at the local Cat Costa, “Our 2-leggeds are SO stupid! Are yours half-blind, too, or is it just ours?” X

        Like

      2. Asthma no joke. I saw that on one of yr posts today. Went thru quite a lot 2 day, but kept falling asleep – no reflection on yr authoress-ness, just me having Pay Back for writing 2000 words yest. Pathetic. Used to be able to do that in 30 mins, now it takes all day 😦
        Technically bedtime now. Since I reduced my steroids, I can at least fall asleep more easily. No protection against hammers and trucks, sadly. When I crack the solution to that, we can all be fibro free. X

        Like

      3. Thank you for wandering through my archives, I don’t always remember how big they are until I do a Twitter hashtag day like #SundayBlogShare, #ArchiveDay, #MondayBlogs, #TuesdayShares, #wwwblogs, #BluSkyFriday, wait, that’s pretty much every day, need to check my memory, what were we talking about? 😉
        Seriously, thank you kindly for visiting, even if you fall asleep. Yes, Fibro gives you that one two punch when you try certain things, hey, it has to remind you who’s boss, then I ignore it and try to show it I’m the boss, this leads to a lengthy argument which no one wins. 😉
        Do you ever get the license of the truck/lorry in the morning? I wish I did, it’s rude to make someone wake up tired and sore.
        Hope this day treats you kindly…try for a 1000 words this time. 😉

        Liked by 1 person

      4. 🙂 I never had you down as someone who would pretend to like something out of anything other than, well….liking it, so I take your Likes as a compliment 🙂 Thankyou! X

        Like

      5. Agreed. Also, Oh no, that’s awful! For when someone posts about something heartbreaking, unfair or just plain wrong. Always find it hard to “Like” those. Eg, my dog died. Like. – how is that the appropriate response???? X

        Like

      6. No, it doesn’t 🙂

        But then imagine how pissed off/ disappointed/ upset people would feel if we kept clicking an “Ok, but not life-changing” button, or “Meh”. If there was a “Wow! Life-changing!” button, everyone would be disappointed if it wasn’t always the one that established followers clicked. I suppose. 🙂

        Like

      7. The “Ok, but not life-changing” button could really anxiety-provoking, although, it might make us rethink some of our writing, maybe they could have a critique button too. 😉

        Liked by 1 person

      8. Yikes! Perish the thought! I’m still trying to grow a thick enough skin to withstand not getting many likes, comments or followers, never mind outright criticism! :-O

        Saw a new (I think) blog earlier today with awful writing technique – she was using “d” for “the”, a bit like text-speak. Very odd. I know my writing’s far from perfect, but I do try to keep to standard English (even though I have a propensity to make up words, it’s deliberate). Xxx

        Like

      9. I like criticism, let me qualify that, if it’s productive, not just trolls or those tearing into you because their life isn’t what they wanted it to be.
        I’m not a fan of texting language and use it sparingly. 🙂

        Liked by 1 person

      10. They were 2x 1000 word pieces 🙂

        Precis is a work in progress for me, always has been. I hate sacrificing rhythm and illustration by reducing word count. X

        Like

      11. Been a busy day…I’ve been tying up some loose ends and very, very tired. Hopefully I’ll be more…words fail me…something tomorrow. Oh wait, tomorrow is the dentist and you know how fun that is for the Fibros. 😉

        Like

      12. Pacing, schmacing……doesn’t work for me. Any energy that graces me with its presence bogs off in disgust if I don’t use it immediately, and gets used up if I do.

        The arguments I’ve had with counsellors about this……Xxx

        Like

      13. Good luck with that! 🙂 If you find a way of making it work for you, please please let me know! It doesn’t seem to matter if I wait til I’ve hit the wall and crashed hard, or if I decelerate and gently stop before I reach the wall, I still get big time pay back for days/weeks after :-(. I’d love to find a solution to that. X

        Like

      14. I took a long day program years ago and they were really good at showing us how pacing works and I’ve read a lot on it since. I’ve gotten fairly good at pacing, well, there are varying degrees of success, but I keep trying…let’s just say I’m pacing my learning of pacing. 😉

        Like

      15. As long as you’re (mostly) Ok…..good luck for tomorrow. Always a barrel of laughs.

        Hey, I just got nominated for an award, but don’t know how to put the nomination links in to my editor (cursor jumps to random position and my cut/copy-paste doesn’t work if I do that to try to move it where I want it to be, so Add Media or insert link don’t work) Is it enough to type the full url in, only they aren’t coming up like links should do …….any pointers, please? And is there a list of criteria for the different awards?

        Thanks, and good luck again for tomorrow. May your gnashers need no remedial work!

        L. X

        Like

      16. No offense to my dentist, she’s great, but it means days of agony…

        You can just type in the url if copy/paste isn’t working, as long it’s the right address it was show up as a link on here – in your tool bar thingie there is a button that looks like a paperclip and one that looks like a broken paperclip – type in your url on your post (usually you then copy/paste once you’ve clicked on that paperclip and I also check ‘Open to new link’, but you can just as easily clink the paperclip and type in the url). You can edit your post and try that. 🙂 Might be different on an iPad, that’s above my pay grade. 😉
        Wait, you’re not using the Beep Beep Bop version of editing, are you, because it sucks (aaargggh WordPress!). I start with that (if anyone knows how to avoid it completely, please let me know), then save and go in to blog posts, find my edit and use the classic version, few if any glitches. 🙂
        Hope that helps, I know, I use a lot of technical terms, like ‘thingie’ and ‘paperclip looking thingie’, don’t be intimidated by my knowledge. 😉

        Thanks, my gnashers just need cleaning – I’m a flossing and brushing fanatic. 🙂

        Take care. Hope this day is good to you. 🙂

        Like

      17. Congrats on your award, well-deserved!!! 🙂
        Thank you kindly for nomination, I really appreciate the thought. I don’t accept awards anymore – this is going to sound totally snotty, but I was being nominated so often (yes, I’m that fabulous snort!) that it was taking a lot of time so I decided instead to take that time and put it into comments, liking, sharing, writing, etc. But again, thank you for thinking of me. 🙂

        Liked by 1 person

      18. You’re welcome 🙂

        Can’t say I blame you, after last night’s experience. I’ve been asleep all day (stopped at 5am, slept/died, breakfast at 7.45am, another bash at web addresses til 11am, sleep, just woke up, now 16.00, knackered, I loathe unproductive days) but for the record, you don’t need the snort 🙂 You ARE that
        fabulous! X

        Like

      19. lol Thank you.
        I’m just waiting for the pain meds to kick in after the torture session, oops, I mean dentist appt. (had to drive and never take meds then). So I’m off to try not to moan too much. 😉

        Liked by 1 person

      20. Aww….that sounds like something you could do without :–/

        Hope the pks kick in in very soon. Pain sucks.

        Have you ever tried an amino acid called DLPA? (DL-Phenylalanine). Binds to opiate receptors in brain, i.e., acts like morphine. No drugged-up feeling, but does give you a sense of well-being to boot. Excellent stuff, and I swear by it.

        Comes in fluffy powder form, or capsules. 500mg-1g three times a day. Really keeps a lid on things, and helps with mood. Not expensive, best (cheapest) bought from sports nutrition sites. X

        Like

      21. Oh, bummer. Like so much with fibro, response seems erratic. I keep going back to it, and it does work most times for me. And does improve mood, but not if I’m stuck in the abyss. Then it’s cottage cheese, B3, B6. And valium helps me, depression-wise.

        What are your go-to’s for pain and the abyss? X

        Like

      22. -“Exactly” was in reply to whatever works and doesn’t make it worse, yes? Which was in answer to DLPA not working for you…..was wondering if a higher dose would have been more effective – you know fibro digestive abilities v erratic, so sometimes we need way, way more than the recommended dose just to get even close to the right amount into our systems. Worth another go, at 1g three times a day, or higher if that was what you were on before? Safe supplement, you aren’t going to turn into a junkie if you take more! 🙂

        Like

      23. Just a thought. I know I have to more than double up, sometimes. Other times, standard dosing is enough. Such is the variabilty of the fibro digestive system’s efficiency. X

        Like

      24. Ok, no idea what I’m doing wrong – clearly the URL I entered for your site is wrong, but I don’t know how to find it except by copying it from the address bar. It isn’t working. Does it need to be https, or have a / at the end? What have I missed?

        L. X

        Like

      25. Have totally lost the threads of our different conversations, and one of them is pages long. Need somewhere else to have banter-chats!
        Even this silly little reply to comments thingy keeps sticking, unless I do ipad equiv of Refresh, which is opening and closing an reopening on-screen keypad. Sigh.

        DID manage to find “old” editor. Yay.

        Still produces epileptic kangaroo cursor. Meh.

        But DOES get rid of top and bottom bars that obscure my text. Yay.

        Still can’t access other commands due to epileptic roo. Sigh. X

        Like

      26. Yep, that’s what I’ve got on my post. Clicks me through to a page claiming that web address is a figment of my imagination 😦

        What am I doing wrong? Nothing, clearly. Ok, then, what is GOING wrong? I don’t geddit. Even more frustrating than fibro.

        Like

      27. I believe you 🙂 I want to change my theme to one that uses always visible sidebar widgets, narrowed it down to 2010 or Plane – terrified now of trying either, in case my iPad implodes.

        Like

      28. Oh pants, are there times when they don’t? Any particular themes to avoid? I know not to use Harmonic, because I have huge trouble leaving comments on that one….

        Like

      29. It insists that I use the Beep Beep Blooper Blooper version. It offers me a newer version, which I always gracefully decline.

        Can’t use any of the interesting hieroglyphics in the toolbar, cursor leaps all over the place like some sort of epileptic kangaroo.

        Did the manual typing thing. None of them appeared as clickable links, just plain text. Eventually found could use Add Media button to make link-looking…..links (ahem….I’m so knackered!) as long as I put them at the very top of the edit page. Then huge argument with editor over repositioning the text above the links so that the post made some kind of logical sense. And the links still don’t work!

        Please would you have a shufty at the post, check the address I’ve used for directing people to your site, and see if I’m just being Fibro Fog Fanny? Please?

        Ipad a guilt present from my brother. Out of my league, too. But bloody handy, so much less hassle than having to scrape self out of bed to “office” (my turn to snort) or lug laptop into bed and be squashed by it. Just really doesn’t seem to like WP interface v much.

        Good for writing blogs on at night whilst B sleeping next to me, too. Laptop makes noise which wakes him up, poor chap. He’s even more knackered than me, lately.

        Definite Love-Hate relationship with technology. I love it when it works, hate it when it sticks two fingers up at me. Makes me feel more stupid than even doctors can make me feel.

        Saw something in this message about switching from Beep Beep Blooper to somewhere else….where, now? How? Even my Quick Edit in Dashboard doesn’t have any formatting tools AT ALL. None! I have explored every avenue, and I’m sick of the sight of trees!

        But thanks anyway, for trying to shed some light. WP + iPad apparently = Black Hole. Ain’t no torch bright enough. I officially give up. X

        Like

      30. Top Left where it says ‘My Site’, scroll over it then a list thingie comes up and under ‘Publish’ it says ‘Blog Posts’ if you go in there, your saved post from the crazed ‘Beep Beep Bop’ should be there and you can use the ‘real’ edit. It’s easy to use.
        Don’t give up, I bet it works with the real edit not the BBB (it’s stupid).
        Hope this helps, again, sorry for being so technicalishy. 😉

        Liked by 1 person

      31. I’m baffled then because it takes me to the old edit. I just realized, are you saying you’re doing links with ‘Add Media’? Never tried that, as far as I know that’s for adding pictures, gifs, youtube videos, etc. The Link button works best for links.

        Like

      32. Yeah, but I can’t use any of the toolbar commands because of the jumping cursor. I can only use toolbar commands IF I want the coomanded bit at top of my post, because that’s the only position the cursor won’t jump out of.

        I DID manage to find the old editor, just spent 40 mins testing out, but not much improvement. Still with the epileptic kangaroo! Enough already. Really.

        The Add Media link defaults to an option to type in a URL, it defaults to an http:// address to fill in, then hit Insert, and it sticks a link into the text. Just it won’t insert where I want it, because of that damned kangaroo. Think “media” applies to pics or links in this case, kr it wouldn’t give the URL box, would it? Maybe it would. I don’t know! I came here to write, not learn to build bloody websites! X

        Like

      33. Sorry to hear that, I don’t think Apple is going to hire you to do endorsements or their new tagline. iPad – We only work sometimes! 😉
        Sadly, you have to do both for blogs. 🙂

        Liked by 1 person

      34. Have to? Why?
        I don’t like the format restrictions, but if I have to live with block paragraphs and only bold, underline or Italics for emphasis (I CAN do that with iPad select text) then I’ll have to live with that. Are you saying readers won’t?
        And links – well, aside from awards, and pointing out articles, why else must they be used? I know now how to html code a web address to make a link, because B looked it up for me today, so next time if I’m having linkage lunacy, I’ll try that.

        But I”m still curious as to why both are necessary for blogging. Lots of people just do journal blogs, don’t they? I thought I was doing ok……am I not, then? X

        Like

      35. I think you took my have to to mean about links, I thought you meant learning to blog, as in, if we don’t learn the format it makes it difficult to get our message, aka the writing out there. If you’re just interested in a journal blog, go for it. We all have to do what makes us comfortable.

        Liked by 1 person

      36. 🙂 Yes, indeed I did. I thought that was what you meant when you said Unfortunately we have to do both (or something like that). I think as long as it’s original work, it’s valid. As I said, I can live with restricted formatting, if I must…..but I may have to test things out on the laptop and see if I am allowed to use the editor toolbar on Windows. If I can do a better job on a pc, then I’ll have to put up with squashed legs, lugging the thing up and downstairs and getting annoyed when the mouse repeatedly slides off my (very handy but prefers a solid flat surface) mouse pad/board 🙂
        Re posting links – I understand the importance of linking back to someone else’s blog or posts (and aside from re-blogs, I’m still not sure how to do that), but I’m never going to be a blogger who posts links pulled off the web with no discussion, comment or analysis. I’m blogging because I love writing, because I’ve got stories to tell, information to share, support to offer. I’m not here to act solely as a service that points people out to articles about positive thinking or the latest breakthrough without actually writing my own post about it. Like you, I put a lot of effort and thought and creativity into my posts; I write them. I don’t just copy a link to increase post numbers – am I being unfair here, to think that’s what some people do? Yay me! I’ve done 3,000 posts! ……No, you’ve clicked on 3,000 pieces of work that other writers have produced and put them on your blog! If I see something that I think is particularly pertinent to my area, I’ll put it up (I did so with a new blood test recently because I want to know when it’s going to be available here and I think it’s something that will be useful for everyone suffering from
        chronic illnesses) but the blanket link-posting I see on some sites isn’t what I want my blog to do. I want to write! (she says, clutching her heart, Lol) To create, to entertain, to educate. Anyway, if I feel the need to Insert Link Here, I’m sure I’ll find a way to do it, eventually. I know how to html a URL into a link now, so unless WP chucks another spanner in the works and somehow ignores the rules of html code, I should be able to do that. I expect, at some point, I might even work out how to add pictures and videos and the like. At the moment, I would like to add witty postcard type pictures to illustrate a point, but get very frustrated trying to find them – where DO they hide them? I see them all over the place, but despite trawling through WP’s Where To Get Free Images section, I still haven’t found what I’m looking for (sorry Bono!)
        The formatting issues – I HOPE I will find a way round it, it’s not like I used to be a secretary or anything……I looked at writing with the “full page” screen yesterday, but although I got semi-hopeful because the reader bar stayed put and didn’t move down to cover my text mid-flow (very off-putting) the bottom bar stayed totally static and swallowed everything I wrote once it hit that bar. I had to switch back to Small Screen to see what I’d written! But I’m new, I’m still learning, and I hope it will all come in time. It might be that most of the issues I’m finding are at least part iPad-WP interface issues, but then I see you and others being just as frustrated by WP on other platforms, too, so who knows? -Not one of the help articles I read about blogging sites mentioned WP in anything less than glowing terms of features, ease of use, etc, so I feel a bit misled!
        Right, FAR too long for.a comment – and the dialogue box thingy I’m doing this one in stops me from easily flicking back to edit it down, so it’ll have to do………
        Hope you’re back on top of your pain meds again now – pain management is SO important. Breakthrough pain puts you back to square one. I expect you know that pain actively prevents a body from healing; it’s THE worst stress a body can be subjected to, or so I was told after my mastectomy, about five minutes before they tried to remove my morphine pump!
        Have a good day – is 9.30am here, so it must be 4.30am with you and you SHOULD be asleep….I hope you wake up sans nocturnal truck and hammer visits! I’ve got to drag myself to collect my monthly script meds this morning. Should have collected them last week and now running out of criticals, so have to have to have to drag self through sludge and wet concrete to get them. Joy. And Father’s Day this weekend means I have to go into different town to find cards (B not good at cards) and I really, really don’t feel up to it today. C’est la vie.
        Onwards! X

        Like

      37. Links are also used in posts to link back to your older posts – it’s a good reference and a great way to get some people to explore your archives. 🙂
        A lot of it is learning – I knew nothing, sorry, less than nothing when I started, oh gosh, August 2013 and not only was a lot trial and error (emphasis on the ‘error’ part), but asking questions, taking time and then of course, I realized that no matter what I learned, WordPress would change it all anyway. 😉
        My back and I are having a disagreement about who’s a bigger pain, it’s winning, hah ha, so there, actually, turns out, not a good thing to win in this case. 😉
        I hope you got your meds and cards and are having a good day (all things considered). 🙂

        Like

      38. If it’s not supposed to be used for links, maybe that’s why it hasn’t consistently worked….do you think the http box is for putting only non wordpress site addresses in, then? My link to your blog still says you don’t exist, and I’m pretty sure you do,….unless I’ve developed schizophrenia without realising it! :-O

        Like

  11. Hey, you can avoid Beep Beep Blooper by doing what you’re doing now with the Publish thingy…you don’t have to have a draft pre-saved, it will let me in the back door if I go that way, so if it works on my ‘pad, it’s bound to work on your pc 🙂

    Can I get my prize, now? Lol X

    Like

      1. Yay! Lol.
        Maybe it won’t work consistently on my ‘pad, either. Oh well. I tried! Is it consistent on your pc/ non-Apple device if you start in BBB first? Or is that moody, too?

        Like

  12. The hidden illnesses are the worse in my opinion. I’ve suffered with Labryinthitis/Meniere’s disease for years. I must write about this one day on my blog. In it’s worse form this makes you lose your balance, (to the point of ending up in a wheelchair,) leads to deafness etc. I’ve had the balance problems in the past and it ain’t fun. Looking at me nobody would know that I have this weird thing going on in my ears, a little private swimming pool of fluid floating around in there to put me off balance. So I feel for you, I kind of know where you’re coming from.

    Like

    1. There is less compassion for those who do not ‘look’ ill, as though if you ‘look’ ill, somehow then you actually are ill. It’s strange, people would be a lot happier if they’d just have more compassion. 🙂

      Liked by 1 person

  13. New thread. Really can’t keep scrolling back to try and find the source and hit the right Reply button….and direct reply is stalling, and doesn’t let me scroll back through a comment to edit (thanks, WP! You really know how to make this experience easy!)

    Meds and cards duly got, but monthly bloods today meant I had to get up out of bed again, when cards and meds yesterday had already brought on Pay Back today. Was in tears by the time I staggered out of the house, in tears at doctor’s, in tears on the way out at the where lovely kind receptionist intervened with The Tissues……back home, B had to haul me upstairs and put me to bed. I usually enjoy being dragged to bed by B, never mind being stripped by him, but turns out that being stripped back down to my nightclothes (because I was too knackered to change my top before dragging jeans and a sweatshirt jacket on over my pj’s today) isn’t very sexy.

    Tried to fight sleep off. Did a couple of comments, fell asleep, B woke me with dinner (we eat early, 4.30pm ish most days, not my choice, fits in with his work and he’s the chef), I’ve slept something like 3 hours on top of 8 last night and I feel utterly wiped out. I feel ill-ill, not just normal fibro-ill, like something seriously-wrong-not-in-the-normal-chronic-illness-type-way. What am I trying to say? Acutely ill, maybe? Brain waddling through treacle.

    Hope your back is feeling better. Hope your day improves, x

    Like

    1. Hope you’re able to get some rest, without the trucks and hammers attacking (doubt that possible, but sometimes they’re a bit lighter than other times). 🙂
      Are you on Twitter, am I following you, do you do hashtag days? Lot of questions, but all kind of related. 😉
      Take care.

      Like

      1. Too bad, Twitter is great for traffic and finding other bloggers, Facebook is just a bunch of ads now.
        Back is bad, trying to pretend it doesn’t exist, not entirely successful.
        Hope you feel better very soon. 🙂

        Like

      2. Hmmm…..last time I was on Twitter, I got email from some company on there that I’ve never had any interaction with. Freaked me out, closed my account. Private email address not attached to my Twit account.
        What do you do, post the link to your posts? X

        Like

      3. I’ve got it set up that WordPress autoposts to Twitter, Facebook, Google+, etc. then I use hashtags and hashtag days (Friday is #BluSkyFriday and #LinkYourLife, Saturday is #ArchiveDay, Sunday is #SundayBlogShare, all weekend is #WeekendBlogHop, Monday is #MondayBlogs, Tuesday is #TuesdayShares, Wednesday is #BeWoW and #wwwblogs and there are quite a few others plus blog parties, linkys, linkshares, etc.).
        I’ve never had a problem on Twitter. If you ever decide to go on I’m @yadadarcyyada 🙂

        Liked by 1 person

      4. Thanks, D.

        I’m sadly lacking in social networking savvy……have no idea how any of what you’ve just said works…..is like trying to translate Martian! (Also sounds like a huge committment and a ton of endless work…..how the hell do you cope with all that???? ) You’re awesome, and I feel pathetically apathetic in comparison! X

        Like

      5. Chin up, little camper, it’s always darkest before the dawn, oh no, I’ve run out of cliches. You’ll be swell, you’ll be great, gonna have the whole world on a plate… 😉

        Liked by 1 person

      6. On those days of the week you tweet your posts, depending on the day, new, old, relevant, etc. and also find and Retweet other people’s posts with same hashtag. Great way to connect and find other bloggers and have people find you. 🙂

        Like

      7. Mostly people decide on their own or commonly used ones, but those I mentioned where ‘made’ or started by people, for example an amazing blogger, Suzie @suzie81blog (http://suzie81speaks.com/) started #SundayBlogShare and hosts the hashtag day every week. It’s easy to understand on Twitter. 🙂

        Like

  14. Thanks for addressing a topic like this. I work as a paramedic, and fibromyalgia (and Autism and mental disorders) are things we aren’t taught much about in school. Once we make it out into the field, trying to keep up with all the “shades” of illnesses is a huge order. A post like this does a nice job of highlighting that each person’s battle is their own (to get out of bed, to smile, to interact with people or even to move without pain)… and that all we can do is accept them where they are. Thanks again.

    Like

    1. I think if people understand more they can care and accept more. Yes, and as a Mom of a child with Autism it concerns me how much professionals know, or in many cases, don;t know about some illnesses. It is comforting that people like you understand. Hope this week treats you well. 🙂

      Like

  15. Thank you for this. If I had a dime for every time someone told me to exercise, I could afford a full-time massage therapist for my fibro. How can I exercise when it takes every ounce of willpower I have to stand up some days? And I don’t even want to count the years and the doctors who told me my migraines “were all in my head”. Yes, that’s exactly what they said. My response: where else would a migraine be?? These invisible illnesses are real, many are untreatable, and most of us suffer in silence because literally, no one wants to hear it.

    Thanks again, and many good wishes coming your way. Have a lovely day!

    Like

    1. I suppose to some degree people have felt they had all the answers to other people’s issues, but really, if you have no idea how someone feels, why act like you do and give them magical solutions. I guess it’s easier for them to believe we just haven’t tried or found the right answer than believing they can’t ‘help’.
      Yes, exactly where else would a migraine be, I doubt you need a medical degree for that! Sigh.
      If only people shared more tolerance and empathy.
      Hope this week is treating you kindly. Gentle fibro hugs. 🙂

      Liked by 1 person

  16. People can be so judgemental and cruel. Sometimes it is unintentional, but most of the time I think the world would be a better place if we all just stopped to think the other person might be having a really bad day and could use a smile instead of a snub.

    Thanks for sharing on #FridayFrivolity

    Like

    1. I like to imagine a world where all people are kind, compassionate, and show empathy, but then I remember, thank goodness, so many people are and I focus on them. Hope this weekend is treating you kind;y. 🙂

      Like

      1. I suffer from chronic nerve pain, and because often times I can put on a happy face, people don’t understand. Sharing other points of view on similar topics is important. We need a more empathic world all around. Thank you for sharing this too! 😘✨ #fridayfrivolity

        Like

      2. Lisa, I’m sorry to hear about your nerve pain, if only people would not judge, but instead, give compassion, have empathy, and be kind to each other, seeing shouldn’t always be believing. 🙂
        Hope this weekend is being good to you. 🙂

        Liked by 1 person

  17. People suck Fibro is a real thing. My sister had chronic fatigue syndrome, it was brutal and not even as bad as fibro. You have to be strong to function with this!

    Have you linked up at #bloggerspotlight yet? It’s open until Tuesday night!

    Like

  18. I understand very well how those who suffer from these ‘invisible diseases’ are thought to be lazy, or making it up to get attention, or to get out of doing things. I live with an invisible mental illness, as well as an invisible Multiple Sclerosis. For years people around me have thought I was just making things up, or trying to get out of things due to my symptoms. I still remember the day when my Primary Care doctor told me that “now it all made sense,” after being diagnosed with the MS.

    Like

    1. If only people substituted compassion and empathy for their intolerance and being judgemental, Karen, wouldn’t the world be a better place for everyone? Thank you for stopping by and commenting.
      Hope this weekend is treating you kindly.

      Like

    1. Thanks so much for the reblog, Ian, a bunch of my stuff got lost in spam, I’d blame WordPress but I should be checking the spam folder more often. Thank you so much for sharing this, hope the week is being good to you so far. 🙂 xox

      Like

  19. I can’t love this post enough! I suffer from Fibromyalgia and I can’t tell you a number of times I’ve even had family members roll their eyes when I say I don’t feel good today. Some days it takes every ounce of energy I have to even get out of bed.

    My husband is a cancer survivor. The many rounds of chemo he had has left him with a compromised immune system. His bones also hurt literally the bones themselves. People tell him all the time “but you beat Cancer you should be living life” the simplest things wear him out. He has no energy.

    Like

    1. It never ceases to amaze me how some people can be so lacking in understanding, compassion, empathy, especially about illnesses, pain, etc. they can’t see. I’m so sorry to hear you and your husband are suffering. I wish people could just judge less and care more.

      Like

Please follow, like, leave comments. Thanks.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s