Last night as I was getting ready for my much anticipated bath (since for the Dermatologist “patch tests” I could not shower or bathe Tuesday through Friday of last week,) I took my shirt off and just began to sob in a very manic way. Ever since I’ve been sick, on top of that I have to like fucking take my clothes off for doctors to examine this or that…blah, blah. It’s a very violating feeling, even though I understand it and know it’s in my best interest. But everything with the doctors, the drives downtown, the needing my mom and Pedro so much and being so sick and hurting…I just was looking at myself in the mirror and balling my eyes out.
I came back to my room to shut off my laptop, and FaceBook was still on the screen…and I had a message from a friend I went to Grade School with back in the mid-to-late 80’s. It was a guy that I wasn’t really friends with per say, but ya know…we knew each other to some degree. He wanted to apologize for “teasing me” back in my awkward years when I was developing my vitiligo skin disorder and severe depression. I told him that it meant a lot to me….and I meant it in the biggest way.
We chatted for hours about his life now, my life now…and it was so sweet. I didn’t feel ashamed to be me. And I was so happy to hear about his romantic life with another classmate I went to school with. How cute that they hooked up after all this time, and now they are having a baby.
He kept asking me for specific things he said or did that might have hurt me. And I told him it was so long ago, it’s OK. We were kids then, too honest for our own good. Now we’re grown up and more sensitive and mature, and that everything was cool between us. But the way he kept asking, really touched me. Like he really wanted me to know that I was an OK person…and that it hurt him to know that maybe he hurt me.
He is the ONLY person from my past to ever of apologized for teasing me during my awkward ugo pre-teen era. I told him the worst of the teasing was from High School…but the girls I talk with now from on there just accept me and like me….and it’s like…so refreshing to feel…accepted and understood.
I can’t quite say my life is peachy-fucking-keen because of any of this…but it probably helped heal a very aged self-esteem wound that I’ve carried around with me for 20 some odd years. I doubt he would ever read this, but in case he does…THANK YOU!!! It’s wonderful to finally become friends. (((HUGS to you and your lovely lady)))
Whoever says you can’t do Egoscue while on vacation is just wrong. If you don’t do it during vacation you are just hurting yourself. It only took me a half hour to make sure I got an Egoscue work-out in. My girlfriend were either watching the news or jumping in the shower and I was getting ready for the day. So I didn’t hold anyone up on our busy time schedule. And I felt amazing during my vacation.
I can only think of one thing different that I did this time before flying. You guessed it my Egoscue menu. I think it made my four hour and forty-five minute flight so much better. I am that person that usually just can’t sit still, I move or cross my legs then un-cross them, then move again. This flight I was so comfortable the whole time. Never got fidgety or felt any discomfort in my shoulders or lower back.
New menu today and I just can’t wait to see what is next.
Since I have been doing some simple yoga poses, I have become increasingly aware that my posture is poor. I used to stand tall keeping my shoulders upright but I have allowed my body to reflect the pain I feel. And today, feeling a little more discouraged by my symptoms I notice my poor posture is reflecting my poor mood. When I googled “good posture”, I came across the web-site http://www.sixwise.com. It mentions some of the benefits of good posture:
Be able to use your muscles more efficiently because your bones and joints will be in the correct alignment. This will result in less fatigue, as your body will require less energy to move around.
Prevent your spine from becoming fixed in an abnormal position. This can lead to constricted blood vessels and nerve, and problems with muscles discs and joints, which can lead to headaches, fatigue and even problems with organs and breathing.
Experience fewer strains and pains because you won’t be overusing certain muscles and joints, nor putting unnecessary pressure on bones, joints and organs.
Put less stress on the ligaments holding the spine’s joints together.
Most web-sites regarding posture said similar such things such as sit up, stand straight, do stomach exercises to strengthen back muscles. However, one web-site promoting the Alexander Method suggests that “Just building more muscle (so that it can stand more strain) may relieve the pain short-term, but it will also give you the strength to tighten yourself up even more.” http://www.smilingbackmethod.com/articles/posture-p2.htm
Well, this is certainly a dilemma! I certainly don’t need to increase any fatigue and pain and decreased energy by having poor posture, nor do I want to increase those symptoms by improving my posture the wrong way!! Just for fun, I typed in “Stand tall” on youtube.com and of course there was Burton Cumming’s song “Stand Tall” However, I then clicked on Dirty Head’s “Stand Tall.” The lyrics are about a relationship and yet I related to the chorus, “Stand tall/ Stand strong/ It gets a little better now”. I believe that just standing tall – through mountain pose, or just simply pulling my shoulders back and stretching my back ligaments up long – is my body’s way of communicating to my brain that “It gets a little better now.”
Every-time I get a massage on my back it is always so painful. It feels like all my muscles are so tight that when the massage starts I might even start to cry.
So I’m off to talk with my Egoscue therapist – the discussing touched how my upper body muscles are being overworked.
When I bend over to touch my toes I bend from the middle of my back instead of my hips (to get back up I have to use my upper body and mid back). When I sit I slouch right in that mid back area (Rounding my shoulders and my upper back is hard at work to hold me there). Driving in my car I lean my seat back because I thought it was more comfortable (my shoulders and upper back do so much work while I drive). I am starting to get the picture – for me to enjoy a massage I need to stop overworking muscles and start getting my hip-flexors to fire. Ok hips its time for some work.
Like many people I do my whole menu but during the day I am looking for just a little boost to get me working the right muscles. My boost is Supine Foot/Circles and Point Flex and of course the lovely Airbench. These two e-cise seem to stabilize my pelvis and I feel great after doing them!
Watch out massage therapists I am going to be ready to enjoy my massage very soon!
Standing Quad Stretch
1. Stand in front of and with your back to a block or chair; your feet should be pointing straight ahead and hip width apart
* If needed, stand facing a chair or doorjamb which you can hold onto for support and balance
2. Lift one foot and bend that leg back, placing the top of the foot on the chair/block
* The height of the foot placement dictates the amount of stretch in the thigh muscles
3. Keep your hips and shoulders square to the wall
4. Look down and be sure that your knees remain pointed straight ahead and in line with each other
5. The key is to make sure that the hip of your down leg is not jutting out to the side. You must keep your hips level
6. Now, try to tilt your butt under
7. Hold 1 Minute
8. Switch legs and repeat
Purpose: This exercise stretches the muscles of the hip and repositions the pelvis
1. The illness I live with is:
Arthritis, chronic tendinitis caused by hypermobility, and fibromyalgia
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since:
2001
4. The biggest adjustment I’ve had to make is: Asking for help.
5. Most people assume: I wouldn’t presume to know what others assume.
6. The hardest part about mornings are: Waking up and getting out of bed.
7. My favorite medical TV show is: House, not that it’s accurate, but it’s amusing.
8. A gadget I couldn’t live without is: My laptop.
9. The hardest part about nights are: The insomnia… The lying awake begging to fall asleep.
10. Each day I take __ pills & vitamins. Somewhere between 1 and 12 or so.
11. Regarding alternative treatments I: Love my chiropractor, but wish he was covered by my insurance.
12. If I had to choose between an invisible illness or visible I would choose: I don’t have to choose. Some days I am visible (crutches/rollator) and some days I am invisible.
13. Regarding working and career: I’m a full time and then some student also doing part-time student teaching and have recently been offered two student research assistant positions! I’m accepting both and will make it through because school is a physically passive venture, as is being a research assistant. The student teaching is hard, though, and I wonder how I’ll ever manage to become a full time teacher.
14. People would be surprised to know: How little I can actually do for myself and my home.
15. The hardest thing to accept about my new reality has been: All of the changes that I have to make in my life. That this me is not the same me I was.
16. Something I never thought I could do with my illness that I did was: Fly to Florida over the summer for a conference.
17. The commercials about my illness: Are dumb. A person with true fibromyalgia, even on meds, could not stand all day at a bakery. Meds do not suddenly make you a typical person. They just help you (hopefully) manage most of the symptoms most of the time.
18. Something I really miss doing since I was diagnosed is: Going to any social event, really. And ballroom dancing… and sleeping. I miss sleeping…
19. It was really hard to have to give up: My hobbies of dancing and playing the piano, as well as cross-stitch…
20. A hobby I have taken up since my diagnosis is: Knitting. It keeps my hands busy, and is easier on them than cross-stitch.
21. If I could have one day of feeling normal again I would: I don’t know, and I don’t really want to think about it, because it would just remind me more of how much I’ve lost.
22. My illness has taught me: How to ask for help. that I’m not perfect and don’t have to be.
23. Want to know a secret? One thing people say that gets under my skin is: When they compare what I’m going through to their badly sprained ankle, etc. Please don’t think you know what I’m going through. You don’t.
24. But I love it when people: Offer to help and do simple things like hold open a door.
25. My favorite motto, scripture, quote that gets me through tough times is: “The Son of God suffered unto death, not that men might not suffer, but that their sufferings might be like His.” –George MacDonald.
“And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infimities.” Alma 7:12 (from the Book of Mormon)
Christ has felt my pain and my sorrow and knows what I am going through, and he is there for me, to comfort me and lift me up.
26. When someone is diagnosed I’d like to tell them: You’re not alone. There is a whole community of individuals with invisible illnesses out there, as well as people who truly love you and care for you. Even on the days when you feel alone, you’re not, because Christ is still there for you.
27. Something that has surprised me about living with an illness is: How many other people live with chronic illnesses. It wasn’t something I was really aware of until I became a person with a chronic illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: I am so thankful for the women from my church who have brought in meals and cleaned my house for me.
29. I’m involved with Invisible Illness Week because: The world needs to be aware of how many people suffer in silence. They need help and understanding.
30. The fact that you read this list makes me feel: Thankful. Because maybe now you’re a little more aware, and can be more understanding of others you meet with invisible illnesses.
In the following article, Dr. Peta Cohen uses a combination of Enzymes (nattokinase and lumbrokinase); EDTA; antimicrobials (i.e. grapefruit seed extract, or GSE; echinacea, goldenseal, gentian, tea tree oil, oregano oil, neem); binders (citrus pectin, aluminum free sodium bicarbonate); and buffering agents (i.e. Vitamin C) to successfully treat autism. He believes this therapy can be used successfully to treat lyme disease, lupus and multiple sclerosis.
DISSOLVE BIOFILMS WITH FIBRINOLYTIC ENZYMES:
A NOVEL APPROACH TO CHRONIC INFECTION IN AUTISM SPECTRUM DISORDERS
2009 Allergy Research Group
An Interview with Peta Cohen, M.S., R.D., founder of Total Life Center in Northern New Jersey. Cohen specializes in treating children with autism using a biomedical / nutritional model. Cohen received her Masters in Clinical Nutrition from New York University and has been a Defeat Autism Now! practitioner for the past ten years.
Focus: You have evolved a highly successful strategy to treating chronic bacterial infections and biofilms that involves some new insights and relies in part on fibrinolytic enzymes like nattokinase and lumbrokinase. I understand you are working with autism experts like Anjum Usman, M.D. and functional medicine pioneers to get the word out on your new insights.
Cohen: Bacteria build biofilms by first aggregating together, and then rapidly weaving this protective web or matrix around them. They build a polymeric matrix … They’re very protected. They’re very crafty in creating a way to survive and procreate and hide from the immune system.
Focus: Why are they protected, and how does that impact our health?
Cohen: They’re protected because they’ve built this matrix but are still alive, still fermenting and metabolizing and leaching toxins into the bloodstream …Because of the biofilm they can no longer be reached by an anti-infectious agent or even the immune system. And because of the biofilm you may not find evidence of the infection in the fecal matter when you do stool cultures. For years, I knew from organic acid testing, from the short-chain fatty acids and metabolites the children were excreting, that they carried these infections. Yet when I did a stool culture I did not find the bugs.
Focus: When you began to work at dissolving the biofilms, did you find the bugs?
Cohen: Oh yes! But I found something else that was just as fascinating, something nobody was thinking about … It’s standard knowledge that biofilm bacteria sequester calcium, magnesium and iron to help build that matrix. Minerals give the biofilm integrity—as if you’re building a wall … To address this, first you use fibrinolytics to help dissolve the fibrin, then you use EDTA to chelate out the minerals. And guess what? We started getting huge dumps of toxic metal. Now why is that? I think the answer points to something so huge, whether we’re dealing with autism or lyme disease or multiple sclerosis or lupus or even cancer.
Focus: Why were the kids dumping toxic metals when you began to degrade the biofilms?
Cohen: EDTA is able to chelate them well. Mercury, and copper, and other heavy metals are positively charged. Why would the bug preferentially insert calcium or magnesium? It could use any positively charged metal. As we degraded this biofilm matrix and liberated these bugs, not only did the organic acid levels get higher … but the kids started to dump metals into the bowel. I felt like I’d exposed these little terrorists in a cell.
Focus: So the metals and the bugs are both in the gut?
Cohen: Right. At an Autism One Conference in Chicago last May, one researcher presented his proton analysis of brain tissue, attempting to verify the presence of mercury in the brains of autistic children, and he couldn’t find it. Yet he still found evidence of activation of the microglia (a type of glial cell that acts as the first and main form of active immune defense in the central nervous system) as a consequence of toxic metals. So where are these metals? I’m suggesting they are in the biofilm, along with the bugs, in the gut. If the biofilm wasn’t using toxic metals, along with common minerals, to build the biofilm, then why all of a sudden do I get these huge dumps of metals on stool tests?
Focus: What exactly is your therapy and what sequence do you use?
Cohen: I start with enzymes like nattokinase and lumbrokinase, as well as other mucolytic enzymes, to get the best, broad fibrinolytic effect. Dr. Usman feels nattokinase is particularly good at degrading strep biofilms and I think that strep is a very big player in these childrens’ health. I will run strep titers and they will be extraordinarily high. And these children—and certainly some adults as well—will manifest strep as a comorbid infection that has significant implications for neurological function. They will have very OCD type tendencies, and sometimes almost psychotic outbursts.
Focus: How much do you recommend?
Cohen: Remember, these patients are very young; some are just a few years old. So I will recommend half a capsule of each, two times a day. That would be a 50 milligram capsule of nattokinase, and a 20 milligram capsule of lumbrokinase. First do the enzymes along with EDTA, then thirty minutes later, add in an arsenal of antimicrobials. I use formulations containing berberine, artemisinin, citrus seed extract, black walnut hulls, artemisia herb, echinacea, goldenseal, gentian, tea tree oil, fumitory, gentian, galbanum oil, oregano oil, neem, and pharmaceuticals as well when necessary, such as Vancomycin, Diflucan, Gentamycin. I use a different one every day. Then an hour later you come in with the binders to help mop up the debris. I use chitosan, citrus pectin, a special bicarbonate formula, organic germanium, chlorella and others. I also use buffering agents, such as buffered vitamin C, since when the body is destroying bacteria it becomes acidic. Minerals must be assessed, and repleted when necessary. I test bloodwork and “pees and poos” (urine and stool) every two months to monitor the process.
Focus: Enzymes, EDTA, antimicrobials, binders, and buffering agents. What are the clinical results?
Cohen: They’re fantastic. It’s like the missing piece. I had one little autistic boy who lives in the city who is loaded with viruses and infections and is now almost fully recovered. His mother used to complain about the terribly high levels of copper in his bloodstream and that his hair was like a copper mattress. We measured the hair but there was a marginal amount of copper in it. He was not eliminating. As we got into the thick of the biofilms his copper blew out of his body in his stool, for months and months. He’d been loaded with copper. I’ve had other children struggling for ages to get mercury out, and out it came.
Focus: It sounds like this approach would work for any chronic illness in which chronic infection plays a role.
Cohen: Yes, I think biofilms are a huge missing piece in Lupus, Lyme Disease, Multiple Sclerosis and any autoimmune-type chronic infection. You have to ask, what compels the immune system to maintain this state of dysfunction? Ask yourself, how could an organism perceived by the immune system as foreign survive its presence? Either something has corrupted the immune system, or the organism has transformed itself in a way that the immune system can’t find it. That’s what the biofilm does. I believe it’s one of the biggest medical issues we’re dealing with today.
—— Abstracts ——
J Dermatol Sci. 1997 Nov;16(1):2-10 Biofilm formation of Staphylococcus aureus strains isolated from impetigo and furuncle: role of fibrinogen and fibrin. Akiyama H, Ueda M, Kanzaki H, Tada J, Arata J.
Appl Environ Microbiol. 2008 Aug;74 Fibrinogen induces biofilm formation by Streptococcus suis and enhances its antibiotic resistance. Grignon L, Grenier D.
With only six days to go until my trip, I have been contemplating strategies for remaining healthy while I’m traveling. Of course, “healthy” is a relative term when you live with fibromyalgia. Obviously, with concerns in the media about a resurgence of swine flu this fall, my goal is to remain virus-free. But I am also aiming to maintain my basic health, such as my energy level , so that I avoid a severe fibro flare.
For basic health, I am carrying a 3-oz bottle of hand sanitizer for those situations in which I find myself far from soap and water. Especially handy while flying across the Atlantic or zipping around Europe on trains. I have also packed travel-size Kleenex for a variety of sanitary uses (hand-washing, sneezing, even toilet paper in a pinch). I will also be vigilant about washing my hands before every meal and snack.
I plan to carry a stainless steel water bottle in my day pack to keep myself hydrated and avoid unnecessary waste of plastic bottles. (At two bottles a day, think of how many bottles I will be saving over the course of five weeks!) I will also carry small snacks such as nuts and dried fruit to keep my blood sugar steady between meals.
Diet is a very important concern when traveling and the key to staying healthy, especially with fibromyalgia. I have worked so hard this past year to change my daily diet so that I can manage my fibro and have more energy, and traveling could easily wipe out all my progress. My first major test will be when I set foot in Chicago O’Hare airport and realize I need lunch before my long-haul flight to Germany. When I’m on vacation, I often adopt a very typical mindset that, well, I’m on vacation! I then proceed to eat whatever I want, no matter how greasy or sugary. This is a surefire way to land myself in bed with a very bad flare of symptoms and depressed that I’m missing out on my European experience.
My food strategy? The same common-sense advice we read and hear about constantly – eat rich foods like sweets and red meat in moderation, and load up on whole grains, fruits, and vegetables. Avoid anything greasy and deep-fried. In order to maintain as much control over the ingredients and preparation as possible, I plan to picnic for two meals a day. At breakfast and lunch or dinner I will assemble a picnic of healthy food purchased from the local store or from the outdoor markets so common all over Europe. By preparing my own meals, I control what I eat, how it is prepared, and get to experience a slice of local life, browsing their markets and interacting with the people. I will also save money in the process – no 20% Value Added Tax (VAT) or gratuity! I will still indulge in the local restaurant scene, just only once a day.
Indulgences will still be allowed in small doses. I will be in regions of the world where some fantastic wine is produced, so a glass of red wine with dinner will be mandatory! While caffeine and coffee can aggravate some of my symptoms, Eastern Europe hosts some of the best coffeehouses in the world, so I will still allow myself to sip some marvelous cups of espresso. Again, moderation is key. And of course, I absolutely MUST sample the gelato in Venice. It would be a crime not to!
To maintain my health and keep my fibromyalgia manageable, I plan to maintain a regular sleep and eating schedule, with a very forgivable exception for the opera in Vienna and Budapest. (Seriously, as an employee of the local performing arts center, NOT to partake in the amazing theater and opera scene in Eastern Europe would be blasphemous!)
Armed with these strategies, I hope to make the most of Eastern Europe, even with the daily physical trials of fibromyalgia.
Turkey Vulture photo by Lila
Well I told myself that I would not use photos on this blog, but this is such a weird and funny thing how could I pass it up? Look I know that I have been feeling really bad but come on now….. what’s up with the vulture showing up on my patio…. just a few feet away from my bed next to the glass patio doors? Then up on the roof too? Does it know something I don’t? THIS is a “Hell if I know day” if there ever was one. I have all kinds of critters but never a vulture……lol….no I’d be ROTFLMAO only I would need help getting up and I’m afraid if I stayed on the floor too long and didn’t more that crazy vulture might try to find a way in and try a bite or two of this bird…..it’s times like these that a little ground fog cover could come in handy…. ya know what I mean? I’m gonna have to sleep with one eye open till that vulture gets lost in the fog too! Beware if you have FMS and wander in the fog also…. never know when one of these vultures might show up at your place too….. stranger things have happened……walk quietly and in peace until our paths may cross again…… Lila
Hang with me peope, it’s Invisible Illness Week starting September 14th and I am GEARING UP! Finally! Find out more about Invisible Illness Week at www.invisibleillness.com
But read this first, okay?
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: fibromyalgia
2. I was diagnosed with it in the year: 2006
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: my reality needed a complete makeover.
5. Most people assume: that I couldn’t hack working or am really, really lazy
6. The hardest part about mornings are: the first breath in as you wake up, you just know it’s going to be a bad day when you wake up and every single pain alarm in your body is going off. Days like that, throwing in the towel now, thanks!
7. My favorite medical TV show is: well, if you count Bones as a medical show. Just started watching it about five days ago. I only watch TV when I flare and it seems like TNT was having a Bones marathon…
8. A gadget I couldn’t live without is: oh, I probably could live without it but I really like it; my iPhone. It’s nice that it has a GPS system that can actually help me find my way out of a paper bag. I know that “total loss of direction” is NOT a listed fibromyalgia symptom but in my book it should be!
9. The hardest part about nights are: it’s a toss up between really trying hard to relax enough to go to sleep (who knew it’d be so hard to relax!) and waking up at 1am and knowing you are done sleeping for the night.
10. Each day I take 12 pills & vitamins.
11. Regarding alternative treatments I: have tried a whole lot of them…but am willing to try some more if they look promising. Whatever works!
12. If I had to choose between an invisible illness or visible I would choose: neither. Yes, my reality is taking it’s own sweet time adjusting…
13. Regarding working and career: an accountant with short-term memory loss working thirty cases in rotation…nope don’t see that happening. Blogging seems to be more my style at this moment. I can usually remember what I’m thinking in one sentence or paragraph. Any more than that…it can get interesting.
14. People would be surprised to know: I can smile. Few have seen it. I even show teeth occasionally.
15. The hardest thing to accept about my new reality has been: accepting my new reality! I notice that the longer this goes on, the fewer “good days” I have. That is chilling.
16. Something I never thought I could do with my illness that I did was: I found that I can travel with my husband. He travels lots! I pay for it, but it is so worth it because we have a lot of fun together.
17. The commercials about my illness: are incredibly stupid. How many people are actually helped by Lyrica? And how many are lugging around an extra 40 pounds because of it? The actresses are incredibly helped and incredibly thin. Oh please.
18. Something I really miss doing since I was diagnosed is: I miss not worrying about if I am going to be able to keep scheduled appointments. It really sucks when I have to be a flake and bail because I can’t get the brain in gear.
19. It was really hard to have to give up: working; at the end I really hated the job, but it was something that I’d worked hard for and it really hurt to give it up.
20. A new hobby I have taken up since my diagnosis is: blogging. kind of a silly answer because if you’re reading this, you already know. When I find a new hobby I’ll tell you about it.
21. If I could have one day of feeling normal again I would: well…okay, how do I say this? How about…That would be between my husband and me and yes, it would take the entire day.
22. My illness has taught me: to know that the world isn’t going to end today just because my body is overwhelmed with pain and my brain refuses to work. Eventually I’ll get some kind of equilibrium…just give it some time.
23. Want to know a secret? One thing people say that gets under my skin is: Oh my sister said this and it made me want to stick a bunch of clothespins on her (with super glue) and say it right back to her “Can’t you just shake it off?” My sister, of all people! Sorry, haven’t found peace on that one.
24. But I love it when people: I love the way my MommaJan (my husband’s mom; she’s my favorite mom-in-law ever! Let me rephrase that…I love and admire her. We’ll leave it at that.) just finds a way to say something positive…and I’m pretty sure she’s never wanted to stick clothes pins on her sister.
25. My favorite motto, scripture, quote that gets me through tough times is: “When all you can do is all you can do, then all you can do is enough.” I heard that phrase while I was in college (working full-time, going to school full-time and lots of kids at home) and it has stuck with me. It really works for me now!
26. When someone is diagnosed I’d like to tell them: DON’T BUY SNAKE OIL! And just because a doctor prescribes it doesn’t mean it isn’t snake oil. Investigate everything…the Internet is a beautiful thing; a very useful research tool–use it! And get on the chronic pain and fibromyalgia forums…talk to people. You aren’t alone.
27. Something that has surprised me about living with an illness is: I have to walk with a hitch in my giddy-up when I use my blue handicapped placard even if I’m not feeling a hitch in my giddy-up because I’m tired of mean ol’ in-you-business people telling me off about I’m using that placard illegally.
Of course those “saints” don’t stick around for me to pull my “got a right to it” card or my explanation. Using a limp is a chicken’s way out. Yep, that’s me. Don’t have the energy to waste on that stuff. Get a life people!
28. The nicest thing someone did for me when I wasn’t feeling well was: the last five days I have felt like absolute pond scum…no, worse than pond scum. Algae? And my husband happily sat down and watched TV with me while I was pretty much confined to the couch. He loves to get out and about, but he’s lots like his Mom…he’s just so beautifully positive. Wish it would rub off!
29. I’m involved with Invisible Illness Week because: Wouldn’t it be a wonderful thing if I didn’t have to fake a limp when I use my handicap placard? Not all handicaps are visible…right up to the point I collapse and then it gets real visible.
30. The fact that you read this list makes me feel: Well, if you’re my sister, I’m scared. Anybody else, thank you so much, I appreciate your interest.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Collected here are the top 10 most frequently provided answers to question number 22, “What is the one thing you’d like your family/friends to really understand about CFS?” Responses were limited to 100 characters, and some were stated using different words, but I’ve tried to capture the “essence” of the most consistent responses with a few direct quotes as well.
CFS is real. “I’m not making this up.”
“My symptoms are very real even though you can’t see them.”
“I am sick with a real disease and I’m doing the best I can.”
It is very debilitating and disabling. “CFS is as disabling as HIV, cancer and MS.”
“Staying at home is not a ‘fun vacation from reality.’”
“CFS is absolutely life-altering.”
The fatigue is very intense. “It’s more than being tired.”
“My energy is very limited.”
“I understand you’re tired, but it’s not the same as CFS.”
Looks can be deceiving. “I don’t look as bad as I feel inside.”
“Even when I look good, I feel awful.”
“Just because I look okay now, know that I’ll pay for it later.”
CFS is unpredictable. “I don’t know from one day to the next how I’ll feel.”
“I have no control over how I feel.”
“I need to be flexible in planning things.”
It has nothing to do with being lazy. “I wish I could accomplish more each day than I can.”
“Even simple things are often beyond my ability.”
“I’m not trying to get out of doing something when I say I can’t.”
Words don’t do CFS justice. “There’s no way to accurately describe how bad I feel.”
“I still hurt as badly 20 years later as I did the first day I got sick.”
“Even when I don’t talk about it, I still feel sick.”
CFS is very isolating. “I am often lonely and alone.”
“Life moves on without me.”
“Nobody understands what I’m going through.”
Your understanding is important. “I am so grateful for my family’s support.”
“I am very lucky to have their understanding. It makes life bearable.”
“I still need quality life experiences and to be involved.”
CFS is not a choice. “I don’t want to be this sick.”
“I miss the person I used to be.”
“It’s so sad to miss out on so many things in life.”
Consider sharing this list with the people in your life whose support is important to your well-being. Maybe it will start a dialogue that helps deepen their understanding of what it’s like to have CFS.
