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30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Fibromyalgia and CFS
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: loss of friendships and working
5. Most people assume: I feel good if I look good
6. The hardest part about mornings are: fixing makeup and hair
7. My favorite medical TV show is: House, Discovery Health
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: falling asleep and staying asleep
10. Each day I take __ pills & vitamins. (No comments, please) 15
11. Regarding alternative treatments I: believe they help but take a long time.
12. If I had to choose between an invisible illness or visible I would choose: invisible so I can hide it from people when I need to.
13. Regarding working and career: I miss it a lot
14. People would be surprised to know: I always feel like I'm coming down with the flu
15. The hardest thing to accept about my new reality has been: losing friends I thought were true friends, losing my job
16. Something I never thought I could do with my illness that I did was: take online college classes
17. The commercials about my illness: don't show what it's really like and not all meds work for everyone.
18. Something I really miss doing since I was diagnosed is: going shopping for fun, going out with my friends.
19. It was really hard to have to give up: my job
20. A new hobby I have taken up since my diagnosis is: jewelry making
21. If I could have one day of feeling normal again I would:have a huge party and invite all my friends.
22. My illness has taught me: get joy out of small things.
23. Want to know a secret? One thing people say that gets under my skin is: "You look like you are feeling better." and "You just have to push through it"
24. But I love it when people: offer to help me
25. My favorite motto, scripture, quote that gets me through tough times is: "Don't give up if you still have something to give, nothing is really over until the moment you stop trying".
26. When someone is diagnosed I’d like to tell them: Feel free to ask me anything.
27. Something that has surprised me about living with an illness is: how life just goes on for everyone and I feel a little forgotten.
28. The nicest thing someone did for me when I wasn’t feeling well was: go grocery shopping for me and clean the kitchen.
29. I’m involved with Invisible Illness Week because: I have an invisible illness.
30. The fact that you read this list makes me feel: cared for
It seems that more and more often I have to step outside of myself and re-evaluate my situations and circumstances. If I don't catch myself I find that I start to fall into the "*Poor Me" category and that is a category I must avoid at all costs.
Of course it is realistic for those who suffer with Chronic Health issues to feel slighted, angry and depressed. It's gonna happen no matter what is done to protect yourself from it. The key though is to recognize when you are being taken over by it and change your thoughts and behaviors ASAP. Wait too long and before you know it you are right back in the "*Poor Me" category and have run the risk of making your physical and mental health worse, become obsessed with self diagnosis and surrender the strength that you have to work through your obstacles.
When I have come off of a flare up is when I must know to stay positive and focused on what is best for myself and those I love. Let's face it, having Chronic Illness is a downer for everyone around us as well as for ourselves. We are not the happy go lucky partner, parent or friend that we used to be. We cannot always have dinner on the table or go outside and practice pitching the softball. We can't just decide to call our friend and go shopping at the spur of the moment anymore, if we can do it at all it takes planning and even then the plans have a 50/50 chance of falling through depending on what our body wants. Our mates become our caretakers instead of our equal and in a lot of cases are very overwhelmed and even disappointed in the role. Then there is the biggy...Intimacy...enough said.
We didn't sign up for this and are powerless over the fact that we have been stricken, but we tend to forget that our friends and family are striken as well and although they want to do everything they can it can be more overwhelming for them than it is for us because they have no idea of what we are experiencing both physically and mentally. There is not a good way I can think of to explain what it is like to be me.
Sure, we can list the symptoms, but can we describe the way it feels when we have several of the symptoms working against us at the same time? I can't. Along with not being able to explain the physical symptoms I find that I feel so much guilt for not being able to maintain my roll as a Mom, Wife or Friend that it makes me very defensive and that isn't very pleasant to be exposed to for them I'm sure.
So what can I do?
I haven't been able to pull it off all of the time, but I try my hardest to stay positive myself. Although I want to scream that I am in pain or this or that hurts, I don't dwell on it,j ust keep it to myself. I try to make the most of my good days and I think that it shows them that I am willing when I am able and I know it is great for me. I don't allow myself to play the victim, I think that is the first thing that turns people off and they feel the sense of duty is constant.
The bottom line is Stay Positive!! I know it hurts, I've probably had Fibro since I was 17. I was diagnosed with it at 22 right after my son was born and had a toddler as well. I know it is always in the back of my mind because something always hurts at least a little bit.
But I swear there is something to be said for "pushing through the pain". Just taking a step past the one you don't want to take can lead to a whole change in attitude for everyone. On the days that I don't want to get out of my pajamas and just sit around, I try to come to a compromise with myself...At least get up and shower, even if I just put fresh pajamas back on, I still always feel just a bit better. Sometimes it's a jumpstart to a good day that I definetly would not have had if I would have given into my inital desire. And some days I lay back down on the sofa with a book all day, but at least I didn't just surrender and I don't. It helps my loved ones not feel the strain if I don't "look sick". It's like the difference in a gloomy, rainy day and a sunny day. Everyone feels better when it's sunny.
Something else that can grab ahold is the dreaded Triangle of Self Obsession. It stands right along with Self Pity.
If you have sat down with your loved ones and gone over exactly what all your disease does to you and described the symptoms, you've explained what you can and cannot do anymore. You've asked for their patience and their assistance.....that's all you can do. If you are not getting the support that you need from them then reach out to those who understand, look for examples in them that you would like to apply, learn from their mistakes and count on them for the understanding that only they can give. Don't blame those who don't know- just telling someone something doesn't mean they get it. More don't than do, believe me! I know now that to keep the ones I love I must not drag them into my burden or they will run.
We don't have the same things to offer ourselves or our loved ones anymore, so we really are better off if we take the best care of our health that we can, meaning exercise, diet, self esteem, and staying positive. And even though we feel like we should be recieving more compassion than we do, never, never lose your compassion for what they are going through as well. I can't say it enough...Our loved ones know that we are sick, they don't need to be reminded of it everyday. Doing so keeps everyone "sick". Force yourself to live until you can't, don't surrender so easily to your pain, Keep your eye on the Prize.......Living the Best Life that you can with what you have to work with!! It's the only thing to do!!
i've been online (myspace vs. facebook experiment) since march 2nd; that's 18 days. and i've made more than 60 friends, more than half of whom have chronic pain of one sort or another.
and i feel really fortunate to be able to draw from such a depth of experience and compassion. truly, you don' t know what it's like until you've lived it. it's not the pain that hurts so much; it's knowing you're going to wake up with it for the next 40 years or so that gets to you.
and one thing i keep wanting to say to my new friends but haven't been brave enough yet...
YOU ARE SO MUCH MORE THAN YOUR FIBRO!!
so many beautiful, smart, funny people identify themselve so inextricably with their pain syndrome that they include it in their profile names! and i just want to ask them, 'yes, but what makes you, YOU?' because while the pain is constant, insistent, and distracting, it is only your defining characteristic if you let it be.
i've been there; i've lost jobs i loved (2 of them) because i went through downswings that made it impossible to get up, shower, and look presentable enough to show up for a job i obviously couldn't possibly perform well that day, though i was overqualified for it on my good days. omg i know it hurts. not just physically, but emotionally and mentally and even spiritually. knowing there's a good chance it's not going to go away and you'll always be in pain and surrounded by people who will never know what it's like to be you, and to hurt like you hurt, every second of every day.
but i believe, and have for the past six or seven years, that being in pain doesn't mean you have to be miserable. being in pain is a fact of life.
chronic diarrhea, or sleep disorders, or whatever, is a fact of life.
being miserable is a choice. so...you're in pain 24/7 and nobody knows what it's like to be you. you can't change that.
and...as i heard a very wise woman say once, life is like a roller coaster. there will be ups and downs, big and small, along the way, with sudden loopdeloops that really truly feel, in the very middle, like you're going to die right then and everything is over forever. and once you're on the ride, you can't much affect the track. it's left up to fate.
what YOU get to choose is whether you go through it with your eyes squeezed shut tight, gripping the bar with both hands, chanting to yourself, 'i'm going to die imgoingtodieomgomgomg' OR you choose to ride the ride with your hands thrown in the air, screaming at the top of your lungs in excitement, anticipating the next twist in the road with joy.
in the words of a beautiful song, 'i hope you dance'. learn to enjoy each moment despite the pain...because this is the life you've got, whether it's fair or you deserve it or not. you have people who love you, and you're obviously smart and talented.
don't let the pain keep you from sharing yourself with the world! you are a treasure.
I have had CFS and Fibro for 18 years. the cold has always been my worst problem. the Pain. I read Dr Sarah Myhills book. I put myself on CO enzime Q 10... I have been taking 75 mg.. 3 times a day for 5 weeks now.
my body temp has returned to normal. the cold no longer hurts...I am in shock. Hugs Hazel
Contributed by Dawn who has FMS and written by another friend of hers also dealing with FMS
Body: FOR ANYONE WHO SUFFERS OR KNOW SOMEONE WHO SUFFERS FROM FIBROMYALGIA.
1. MY PAIN---MY PAIN IS NOT YOUR PAIN. IT IS NOT CAUSED BY INFLAMMATION...TAKING ARTHRITIS MEDICATION WILL NOT HELP ME. I CANNOT WORK MY PAIN OUT OR SHAKE IT OFF. IT IS NOT EVEN A PAIN THAT STAYS PUT. TODAY IT IS MY SHOULDER, BUT TOMORROW IT MAY BE IN MY FOOT OR GONE. MY PAIN IS BELIEVED TO BE CAUSED BY IMPROPER SIGNALS SENT TO THE BRAIN. IT IS NOT WELL UNDERSTOOD BUT IT IS REAL...
2. MY FATIGUE---I AM NOT MERELY TIRED. I AM OFTEN IN A SEVERE STATE OF EXHAUSTION. I MAY WANT TO PARTICIPATE IN PHYSICAL ACTIVITIES BUT I CANT. PLEASE DO NOT TAKE THIS PERSONALLY. IF YOU SAW ME SHOPPING AT THE MALL YESTERDAY BUT I CANT HELP YOU WITH THE YARD WORK TODAY, ITS NOT CAUSE I DON'T WANT TO. I AM NOW PAYING THE PRICE FOR STRESSING MY MUSCLES BEYOND THEIR CAPABILITY.
3. MY FORGETFULNESS-..--THOSE OF US WHO SUFFER CALL IF "FIBRO FOG". I MAY NOT REMEMBER YOUR NAME, BUT I DO REMEMBER YOU. I MAY NOT REMEMBER WHAT I PROMISED TO DO FOR YOU, EVEN THOUGH YOU JUST TOLD ME SECONDS AGO. MY PROBLEM HAS NOTHING TO DO WITH MY AGE BUT MAY BE RELATED TO SLEEP DEPPRIVATION. I DO NOT HAVE SELECTIVE MEMORY. ON SOME DAYS I JUST DONT HAVE ANY SHORT TERM MEMORY AT ALL...
4. MY CLUMSINESS-..--IF I STEP ON YOUR TOES OR RUN INTO YOU FIVE TIMES IN A CROWD, I AM NOT PURPOSEFULLY TARGETING YOU. I DO NOT HAVE ENOUGH MUSCLE CONTROL FOR THAT. IF YOU ARE BEHIND ME ON THE STAIRS, PLEASE BE PATIENT. THESE DAYS I TAKE LIFE AND STAIRWELLS ON STEP AT A TIME...
5. MY SENSITIVITIES-..--I JUST CANT STAND IT. IT COULD BE ANY NUMBER OF THINGS; BRIGHT LIGHT, LOUD OR HIGH PITCHED NOISES, ODORS. SO DONT MAKE ME OPEN THE DRAPES OR LISTEN TO YOUR CHILD CRY. I REALLY CANT STAND IT.
6..MY INTOLERANCE-..--I CANT STAND HEAT OR HUMIDITY. IF I AM A MAN, I SWEAT PROFUSELY. IF I AM A WOMAN, I SWEAT PROFUSELY. BOTH ARE EQUALLY EMBARRASSING, SO PLEASE DONT FEEL COMPELLED TO POINT THIS SHORTCOMING OUT TO ME. I KNOW. DONT BE SURPRISED IF I SHAKE UNCONTROLLABLY WHEN IT IS COLD. I DONT TOLERATE COLD EITHER. MY INTERNAL THERMOSTAT IS BROKEN AND NO ONE KNOWS HOW TO FIX IT...
7. MY DEPRESSION-..--YES, THERE ARE DAYS WHEN I WOULD RATHER STAY IN BED OR IN THE HOUSE AND DIE. SEVERE, UNRELENTING PAIN CAN CAUSE DEPRESSION. YOUR SINCERE CONCERN AND UNDERSTANDING CAN PULL ME BACK FROM THE BRINK. YOUR SNIDE REMARKS CAN TIP ME OVER THE EDGE...
8. MY STRESS---MY BODY DOES NOT HANDLE STRESS WELL. IF I HAVE TO GIVE UP MY JOB, WORK PART TIME OR HANDLE RESPONSIBILITIES FROM HOME, I'M NOT LAZY. EVERYDAY STRESSES MAKE MY SYMPTOMS WORSE AND CAN INCAPACITATE ME COMPLETELY...
9. MY WEIGHT---I MAY BE FAT OR I MAY BE SKINNY. EITHER WAY, IT IS NOT BY CHOICE. MY BODY IS NOT YOUR BODY. MY APPETITE IS BROKEN AND NOBODY CAN TELL ME HOW TO FIX IT...
10. MY NEED FOR THERAPY---IF I GET A MASSAGE EVERY WEEK, DONT ENVY ME. MY MASSAGE IS NOT YOUR MASSAGE...CONSIDER HOW A MASSAGE WOULD FEEL IF THAT CHARLEY HORSE YOU HAD IN YOUR LEG LAST WEEK WAS ALL OVER YOUR BODY. MASSAGING IT OUT WAS VERY PAINFUL, BUT IT HAD TO BE DONE. MY BODY IS KNOT FILLED. IF I CAN STAND THE PAIN --REGULAR MASSAGE CAN HELP -AT LEAST TEMPORARILY.
11. MY GOOD DAYS---IF YOU SEE ME SMILING OR FUNCTIONING NORMALLY, DONT ASSUME THAT I HAVE BEEN CURED. I SUFFER FROM A CHRONIC PAIN AND FATIGUE ILLNESS WITH NO CURE. I CAN HAVE GOOD DAYS, WEEKS OR EVEN MONTHS. IN FACT, THE GOOD DAYS ARE WHAT KEEPS ME GOING...
I HOPE THIS HELPS YOU TO UNDERSTAND ME, BUT IF YOU STILL DOUBT MY PAIN, YOU LOCAL BOOK STORE , LIBRARY AND THE INTERNET WILL HAVE ARTICLES ON " FIBROMYALGIA".
THIS IS BASED ON COMMUNICATIONS WITH PEOPLE THROUGHOUT THE WORLD WHO SUFFER FROM FIBROMYALGIA IT IS ESTIMATED THAT OVER 10,000,000 PEOLE SUFFER FROM THIS DISEASE.
PLEASE DO NOT TAKE THESE PEOPLE AND THEIR PAIN LIGHTLY. YOU WOULDNT WANT TO SEPEND A DAY IN THEIR SHOES OR THEIR BODIES.
I SUFFER FROM FIBROMYALGIA.....SO PLEASE, SHARE THIS INFORMATION WITH FRIENDS AND LOVED ONES AND SPREAD THE AWARENESS ON "FIBROMYALGIA".
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