22 In all

Always On ‘De’~Fence ~ Having To Defend Yourself & Your FMS

As I go forward on my journey with FMS~ME/CFS, I learn new things all the time.  Some are fairly predictable, and some take me by surprise.  One of those things is how often it is necessary to defend having Fibromyalgia along with it’s symptoms.  Do other’s have to do this?  If someone has MS, RA, or Lupus, do they find themselves on the defense over their disease?  It’s an honest question.  I’m curious.  Let me explain why.

always on defence regarding your fibromyalgia

Last night I was with a group of people including a friend of mine in her 20’s who has been recently diagnosed with FMS.  She was sharing how her eyes have been giving her problems lately.  She was explaining her extreme dry eyes and ocular muscle spasms, and as she went on I offered her the possibility that it was her Fibromyalgia causing the problems.  She was interested that this might the case, and we set about to discuss eye issues in relation to FMS.  Immediately someone in the group said with a hint of indignation, “I have dry eyes too! I get twitches too!”  Like it was self-indulgent and absurd that I would be relating my friend’s symptoms to something so ‘minor’ as this ‘fibromyalgia thing’. (implication: this ‘make-believe’ illness)  Then others in the room began coming up with different reasons why she would be having eye problems, and I thought, “Why can’t it just be because of her FMS?”  I simply winked at her, and the subject was changed.  But I took note of this.  Why in the world are some people so offended by this condition? There are actually some fairly venomous rants on the web over this subject.  So again I ask the question, would people do this over someone with MS, or Lupus, ect.?  If they do, all my sympathy!  Whack em’ with your spoon!

This is one of the many reasons I treasure the chronically ill community I have found over the past year.  It’s important to share experience, get encouragement, and continue to educate and be educated concerning this ‘life of spoons’ we have been given.  Here’s lookin‘ at ya kids!

~

Recipe Of The Week:

~Vampire Bites~

vampfinal1

~1 Sara Lee pound cake

~seedless raspberry jam

~1 pckg of white chocolate morsels

~1 cup heavy cream

Cut pound cake in three long strips so you have three thin pound cakes.  Cut those into bite size squares.  Heat cream until hot (not boiling).  Pour hot cream over morsels in a bowl and allow to stand without stirring for 3 min.  Stir until smooth and cool to room temp.  Assemble like petite fours with jam in between layers.  Place bits on fork and spoon chocolate over top to coat.  Place in refrigerator until set, and coat again till get desired look.

adapted from Tablespoon

vampfinal2

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22 Comments

  • Reply
    Shannon
    October 2 at 5:35 pm

    I think everyone who has an invisible illness has this experience eventually. As with most things in life, it is sheer ignorance that makes a person react so negatively. If someone with a serious illness is talking about such a “minor” symptom, then a person may become indignant because they have a similar symptom or health issue yet they can function “normally” and go to work on a daily basis (Unfortunately, I’ve found most Fibro Warriors eventually find they have to resign their job and give up their career). So the ignorant person is quite outraged on their own behalf because the Fibro Warrior’s symptom is so common and mundane that “nearly everyone else” can work and function normally. We must be faking it. Anything else doesn’t make sense (to them).

    We know different though, don’t we? I’ve often said to others with chronic pain that pain is relative. It is relative because your pain is as unique to you as mine is to me. So regardless of how our pain may seem less or more to someone else with chronic pain, their experience for pain and/or their pain tolerance experience is bad for them. So too with the many “common” co-morbidities and other symptoms Fibro Warriors experience. Each individual experiences those symptoms in their own way.

    Little do the ignorant know that just one common symptom (like dry eyes or muscle twitches, spasms or pains) may seem mundane, but add the symptoms literally all together to experience *at the same time* overwhelms the body. A few angry words with family or friends may easily been blown off by the average person, but any stress (good or bad) negatively effects a Fibro Warrior. It all adds up and we physically *hurt* as a result of that stress. This is one thing my husband still doesn’t quite understand. I always pay for arguments, physically. Crying hurts! Literally.

    This is what the ignorant will never understand until and unless they personally experience what it is like to live with Fibromyalgia themselves. They can’t see what we go through (invisible illness), and worse, we look just fine to them. So how can we be so sick?

    Just because I may kind of understand how ignorance makes people say and do things unwittingly, does not make it ok either. But.. it is what it is. All we can do is keep our chins UP and a smile ON. We don’t have to deal with ignorant people all the time. We can choose to not respond to them or ignore them until they go away! lol
    Shannon recently posted…30 Things About My Invisible Illness You May Not KnowMy Profile

    • Reply
      kristine
      October 2 at 7:13 pm

      Well said Shannon! It is difficult for people to understand the concept of ‘hurting’ and ‘paying’ for certain interactions and activities. Especially when we ‘look’ healthy. Continuing to educate, it’s the only way I know for people to begin to comprehend what this is like. For most of us, it is not unbearable, but it does have a weight in our lives. And it is not like the pains and tiredness experienced by most people. Thanks again for your heartfelt response to my post. Love to you! ~Kristine ♥

  • Reply
    Lee Good
    October 4 at 9:30 pm

    So much can be said in a wink and it was so good you were there for your newly diagnosed friend. post. Thank you so much for your support at the Fibro Friday link up each week and all you do for Fibromyalgia awareness.

    • Reply
      kristine
      October 5 at 12:21 am

      Thank you Lee! I appreciate it very much! Have a wonderful week 😉

  • Reply
    Trisha @ Home Sweet Homemade
    October 6 at 5:49 am

    Those Vampire Bites look adorable and so easy! I think I will serve them at my Halloween party!
    Pinned!
    Found you at Simple Supper Tuesday blog hop!
    Trisha @ Home Sweet Homemade recently posted…Red Lobster Biscuit RecipeMy Profile

    • Reply
      kristine
      October 6 at 6:33 am

      Thanks Trisha! They’ll be perfect for a Halloween party 😉

  • Reply
    Heaven
    October 6 at 11:32 am

    What a great and simple Halloween treat with a big impact. I haven’t seen anything like it on the internet so far this year. Pinned!
    Heaven recently posted…Soft and Sweet Cornbread: the Ultimate Dinner BreadMy Profile

    • Reply
      kristine
      October 6 at 1:18 pm

      OOO! Thanks! That’s a huge compliment considering all the wonders of Pinterest! Thanks for stoppin’ 🙂

  • Reply
    Michelle
    October 7 at 4:41 am

    I think with all of our technology and medical advances, most people can’t understand why we still have so many sick people in the world. Either they are mentally ill (Bi-polar, PTSD) or they have a neurological disorder (Autism), or they have physical ailments (MS, and Fibromyalgia) and people who don’t have any of these things or know someone with any of these things, are ignorant and lash out. It’s sad to see this but until one of my old classmates got Fibromyalgia , I didn’t know what it was either. I have several friends and family members with MS, Bi-polar, PTSD (I’m in recovery), and Autism (my oldest son has Autism). I think until someone goes through it themselves, they really just don’t get it. Love the recipe and I love the name of the recipe! Vampires are my thing! Thanks for sharing! Visiting from #WAYWOW
    Michelle recently posted…Finding Healing in ForgivenessMy Profile

    • Reply
      kristine
      October 7 at 8:11 am

      Hi Michelle! HUGE vampire fan here too! 😉 I agree 100% with you, compassion seems to run short as a general rule until people get ill themselves, or have a loved one become sick. I like your blog 🙂 I have a couple friends whose children are autistic. Now there’s something that needs to be researched and hopefully cured. It can be heartbreaking. Love your advocacy. Thanks for stoppin’ Michelle, have a terrific week 🙂

  • Reply
    Jessica Powell
    October 7 at 5:08 am

    Those vampire bites look awesome!

    Totally agree re. FMS too. I was diagnosed with CFS a couple of years back and it was awful – not just how it made me feel, but the way other people reacted. If we went out I couldn’t walk far before needing to sit and regroup and even close friends and family struggled to see at something I *needed* to do, rather than just me being over dramatic or something. Thankfully it’s improved a lot since I had my daughter – which I’d read was possible but didn’t believe until it happened! 🙂
    Jessica Powell recently posted…Shape of my HeartMy Profile

    • Reply
      kristine
      October 7 at 8:35 am

      Thank you Jessica! I have heard of some research being done it the area concerning hormones produced during pregnancy and it’s affects on some invisible chronic illnesses. Interesting! And I know what you mean about people ‘not getting’ the having to sit and rest thing, especially when you’er young. Glad your doing better, have a wonderful week 😉

  • Reply
    Sherry
    October 11 at 10:48 am

    Such inspiration in your article and your comments. Thanks so much for sharing with us at Merry Monday. (I love the cake!)
    Sherry recently posted…Funtastic Friday #45My Profile

    • Reply
      kristine
      October 11 at 4:52 pm

      Thank you Sherry! Have a great week 🙂

  • Reply
    Nikki Frank-Hamilton
    October 11 at 1:30 pm

    Great article. I have APS or Hughes Syndrome, an invisible illness. At times even my husband doesn’t get it. I think it is impossible to understand as we look normal. And until you experience it, you will never get it. Losing yourself, your old life, everything you worked towards, and even your dreams is a commonality for those of us with Chronic Disease, I never “got” it until I became ill. Mourning ourselves is weird. We’re still alive, but part of us is gone, that is something that you can’t understand until you’re there. How can you even explain it? I do hate when others, those without a disease or illness, try to compare. I just smile and tell them I hope it gets better. For the most part I try to ignore their ignorance because I never understood either. The one I have the biggest issue with is; “When are you going to feel better?” LOL I don’t want to say “never” because I’m hoping that changes with time, but I guess, what part of chronic is misunderstood. I guess I need to get a thicker skin!
    Nikki Frank-Hamilton recently posted…This Week, Week #41My Profile

    • Reply
      kristine
      October 11 at 4:58 pm

      I’m with you Nikki. It is true they don’t understand. But, it would be better if they said nothing, rather than try to make us ‘feel better’ and try to understand by comparing with those of us who have a chronic illness. This is why I try to speak of it as little as possible. At least in person, that’s what I love about being able to write, I get all venting out here! Have a wonderful week Nikki, and thank you again, so much, for your sharing 🙂

  • Reply
    Miz Helen
    October 11 at 4:45 pm

    Great idea for your Vampire Bites, and so easy! Hope you are having a great weekend and thanks so much for sharing with Full Plate Thursday.
    Come Back Soon!
    Miz Helen
    Miz Helen recently posted…Whats For Dinner Next Week 10-11-15My Profile

    • Reply
      kristine
      October 11 at 5:07 pm

      Thanks Miz Helen 🙂

  • Reply
    All that's Jas
    October 12 at 2:26 pm

    Oh, what great bites! Thanks for sharing at Thursday Favorite Things!
    All that’s Jas recently posted…Italian Chicken with Artichoke SauceMy Profile

    • Reply
      kristine
      October 12 at 4:24 pm

      Enjoy! 😉

  • Reply
    Jenny
    October 13 at 6:12 am

    Oh love the vampire bites you have here, Halloween is so fun. Great recipe. Hope you are having a good week darling. Thank you so much for linking up to Share With Me. I hope to see you again tomorrow for another great round. Why not invite your friends to come share too? I would love to get to know more bloggers and widen my blogger share with me circle. All posts, old and new are welcome. #sharewithme
    Jenny recently posted…Empowerment from the inside outMy Profile

    • Reply
      kristine
      October 13 at 6:31 am

      Thank you Jenny, have great week 🙂

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