OnGoing Pain
Posted by Kelli on March 2nd, 2010
. Let me know if this is just incoherent babbling.
Wishing you a happy and pain-free/symptom-free day!!
K
Archive for the ‘Chronic Fatigue Syndrome/ME’ Category
They just don’t get it – How to explain FMS/CFS
Posted by Kelli on January 21st, 2010
They just don’t get it
How to explain chronic fatigue syndrome & Fibromyalgia to friends and family
By Kelli Ellis
Not having support from your family and friends will put a strain on these relationships impacting your stress level which can affect greatly both negative and positive on your health. Explanations need to be simple and straightforward. Tell someone about fibro without all the jargon so that healthy peoples eyes don’t glaze over two minutes into a conversation. You do not have to explain in extreme detail to produce an accurate picture or evoke an appropriate response.
Without a good explanation many people perceive persons with Fibro & CFS as not being sick but to be thought of as “lazy,” “a hypochondriac” or a “whiner.” We are none of these.
Here are several descriptions:
- “You know, when you work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even get up? Well that’s how I feel. Only it does not go away.”
- “It is similar to working in the garden for two days all day as well as the flu, except that it does not go away.”
- “Fibromyalgia is like arthritis in the muscles.”
- To my 10 year old niece I said, “It’s like when you’ve played all day and you play so much that the next day you are tired and your muscles are so sore they hurt and it’s kind hard to get out of bed – it’s like that, but it’s every day, not just one day.” This, a child, understood, but her mother couldn’t.
What healthy people need to realize is that, we don’t want to be this way and if we could change it, we could. Would I trade living day after day in pain & exhaustion, taking seemingly limitless amount of medications for a healthy body but a 10 work day, 6 days a week with no meds?? God! Yes!
While we may “look” healthy, that does not mean we are feeling healthy. For women, makeup can hide a multitude of sins, including pale skin, tainted skin colour, bags under the eyes, and a general lackluster. Clothing choices and the way one presents oneself may no be for show, but for need. I may not use my cane cut it would be too painful in my shoulders to use it, but it does not necessarily mean I feel well.
Well meaning friends and support people have said “I’ve had that too!” And they may have, for a few hours, waking up improved the next day and well the day after. But it truth, No, she or she has not. They have bouts of being tired or sore from whatever over exertion they experience. They do not deal with the chronic day after day extreme fatigue, pain and many other accompanying symptoms and syndromes. They think think they know because of one day’s experience – they don’t.
There are some who believe that because we with FM do not follow their well meaning advice, that it is our own fault we are sick. Horse-pucky! Don’t put that BS guilt trip on anyone, let alone a fibromite. The last thing a person with FM needs is to feel blamed for being ill. It is not our fault.
Some tips when discussing fibro and what it is: Be honest. Beware of your audience – what a 10 year old understands, an adult may dismiss. Do not use excessive jargon – the biggest word should be fibromyalgia not neurotransmitters. Know what symptoms you what to emphasize. Recognize how much, if anything, they want to learn.
For those who would be interested in further explanations, there are many resources around. To start, I recommend the “Spoon Theory”.The author has lupus, a sibling condition with many overlapping symptoms.
Another resource is “the Letter to Normals”.
If you have any other suggestions, please feel free to post them here or email me.
“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”
– Dr. Marc Loveless
(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)
Coping With The Holidays
Posted by Kelli on December 21st, 2009
Coping With The Holidays
By Kelli Ellis
I am my own worst enemy. Like many others with Fibromyalgia and Chronic Fatigue, I find the holidays a highly stressful and painful time of year instead of the joyful and happy time it should be. I am too focused on the perceived expectations of others instead of the reality of my limitation and restrictions.. I know many of us want to accomplish what our bodies are simply not capable of, so we have to adjust our outlook and re-evaluate our priorities. The holidays are all about spending time with those we love most – keeping time and energy for what we hold most precious and dear. Doing so will help reduce the stress and thus the pain and emotional issues that crop up at Christmas.
Pace Yourself..
When you think “I’ll just visit 1or 2 more shops, go up 1 or 2 more aisles, wrap 1 or 2 more presents, bake 1 or 2 more trays of cookies or do that 1 or 2 more things.” – Don’t! Stop before you get to that tired or hurt point. Don’t deal with a fibro or cfs flare, prevent one.
Decorate, but not too much..
Have a smaller tree with few decorations. I have invited over the nieces in past and we made an afternoon of putting up the tree. Have someone put up the outdoor lights. Get a nativity scene that is pre-made as one unit and/or lightweight, so you don’t have to lug many pieces. I have a smaller plastic Precious Memories one (which the kids love to play with) and a small water fountain of Joseph, Mary & baby Jesus.
Celebrate
Choose carefully to go only to 1 or 2 holiday parties, don’t accept every invite. If you can, spend time with those you hold dear, not those who will cause stress. Plan ahead how long you plan to stay and stick to it. Always keep a supply of regular meds on hand, in case.
Delegate
Pass on some of the holiday chores to others so that while everyone shares the joy, they also share responsibility.
Cooking
Share these responsibilities or making an easier selection. Do a pot luck dinner. Choose a one dish dinner to limit the number of dishes. Choose easier recipies. Prep or make whatever can be done beforehand and refridgerate or freeze. Keep to your normal eating habits as much as possible & do not overdo it on sweets and other foods.
Baking
Do a holiday cookie/snack exchange. Bake cookies in stages – many recipes require overnight in the fridge. Cheat – buy your cookies.. I know, not the same, but nothing’s the same anymore, is it?
Shopping
Online/catalogs/mail order gifts. Gift cards & gift certificates. Plan ahead, make a list & write it down. Organize your trips into several short shopping trips. Shop in the morning, or later in the evening when the crowds are thinner. Start early – once I started on Dec 26th. Take regular breaks to rest. if you use a mobility device (cane, crutches, walker), take it with you even if you don’t need it yet Use a shopping cart for stability, to carry parcals & outterwear. Use a coat check if your mall has one so you don’t have to worry about your jacket. Get salespeople for help if you can find them. Always keep a supply of regular meds on hand, in case.
Wrapping Presents
Wrap using gift bags & tissue paper. Take advantage of on-site wrapping services – many are for charity.
Holiday Cards
Do them well ahead of time like October or November, Make labels so you’re not writing address after address, if even it’s ony the return address.
Above all – KISS! Keep It Sweet and Simple!
to acknowledge my first massive cfs flare..
Posted by Kelli on November 7th, 2009
New CFS Blog…
http://standup2me.blogspot.com/
XMRV linked to CFS
Posted by Kelli on October 18th, 2009
Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
By Katherine Harmon
October 8, 2009
Recently implicated in some severe prostate cancer patients, the retrovirus XMRV has now been found in many with chronic fatigue – - changing the landscape for diagnosis and possible treatment
 |
| OVERTAKING CHRONIC FATIGUE: An electron micrograph shows the XMRV retrovrius in the blood of a patient with cfs. Source: WHITTENMORE PETERSON INSTITUTE |
More so than many illnesses, chronic fatigue syndrome (CFS) frustrates those who suffer from it and those close to them, due to its nebulous assembly of symptoms, along with continued controversies over its etiology, diagnosis, treatment and even its nomenclature. Now, the discovery of a familiar retrovirus in many CFS patients could bring new energy to the field—and fresh hope for more specific medical care.
Chronic fatigue is in part a misnomer. The syndrome often has more to do with immune system abnormalities than pervasive tiredness—although the two can go hand in hand. The symptoms range from exhaustion to muscle pain, giving CFS a reputation among some as a “wastebasket diagnosis”. The slipperiness of the syndrome is in part because “it’s diagnosed based on exclusion,” says Judy Mikovits, director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., and co-author of research on the retrovirus findings published online today in Science. Doctors often apply the label if no other explanation can be found for a patient’s symptoms, which may be part of the reason it seems to pop up in everyone from overworked career women to continually sick children.
Roughly 17 million people worldwide are thought to have CFS, but given current diagnosis methods, the true number could be much higher or lower. Having a specific virus to look for would make for much more robust tests and possibly even be a step toward treatment. Mikovits’s team thinks they have found just such a candidate.
The xenotropic murine leukemia virus–related virus (XMRV) has recently been linked to strong cases of prostate cancer. Like CFS, this cancer involves changes in an antiviral enzyme (RNase L). The prostate cancer discovery got Mikovits and her team thinking: Would they find the same retrovirus in people with CFS?
After analyzing biological samples from more than 100 CFS patients for the retrovirus, two thirds of them were found to test positive for the virus—compared with 3.7 percent of 218 healthy volunteers who were screened.
Precisely how this virus is related to chronic fatigue, however, remains a mystery. One of the problems with tracking down CFS is that it may not be a single ailment. “We think that the problem is that CFS is a collection of many, many different diseases even though it has similar symptoms,” says Brigitte Huber, a professor of pathology at Tufts University’s Sackler School of Graduate Biomedical Sciences in Boston. She and others suspect that the retrovirus may be unleashing other underlying conditions and viruses in the body.
“This new retrovirus may be able, through infecting human cells, [to] induce a transcription of an endogenous virus,” says Huber, who has been studying the presence of an ancient retrovirus (HERV-K18) dormant in most people but active in patients with CFS and multiple sclerosis. “We’ve already shown that Epstein-Barr virus can do exactly this.”
Even in their testing for the XMRV retrovirus, Mikovits says, “We could see a human endogenous virus at the same time” as XMRV. “There are a number of old diseases that seem to be rising at an infectious rate,” she says. Although this background noise of various viruses may be difficult to sort though, it brings clues to help researchers find the root cause of CFS. “It’s possible, downstream, that this will all feed into the same mechanism,” Huber says.
*** Note: This post has been modified from the original for space & the excessive unnecessary extra scientific jargon included that was not necessary the express my point in this blog. The original in it’s entirety can be found here: http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus ***
This is what happens with CFS.. and FMS as well for that matter.. so tired, & nackered out from either the disease or the meds or the one activity you were able to do that most of your time, in the worst case, is resting and trying to recuperate, which rarely happens.
What would you do?
Posted by Kelli on October 12th, 2009
What would you do if you were completely well tomorrow?
30 Things by Others (invisible Illness)
Posted by Kelli on September 17th, 2009
You have seen *my* post of the 30 Things You May Not Know about my invisible illness(es).. here are others, and I made sure to the best of my abilities that there are no duplicate blog entries.. duplicate names mean different people.. Note that this is by no means a complete list.. please feel free to sign in & add more!
Jenni – http://www.chronicbabe.com/articles/820/
Diana – http://somebodyhealme.dianalee.net/2009/09/invisible-illness-week-30-things-you.html
Amanda – http://www.crazymiracle.com/read/30_things_you_may_not_know/
Heidi – http://livewithdesire.com/home/2009/9/11/30-things-about-my-invisible-illness-you-may-not-know.html
Connie – http://mychroniclife.com/2009/09/07/30-things-about-my-invisible-illness/
Betsy – http://wordmetropress.com/migrainejourney/?p=315
Heather – http://aloofelf.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Selena – http://ohmyachesandpains.blogspot.com/2009/08/30-things-about-my-invisible-illness.html
Elise – http://ebbtideds.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Ashley – http://youngwifestale.com/blog/?p=911
Crystal – http://gpadvocate.wordpress.com/2009/09/02/hello-world/
Landileigh – http://www.landileigh.com/1/post/2009/09/you-may-not-know.html
Petula – http://www.petulaw.com/2009/09/30-things.html
Rachel – http://cranberryteatime.blogspot.com/2009/08/30-things-about-my-invisible-illness.html
Breecy – http://www.icarecafe.com/index.php?page_id=1000&site_page_id=301&sblog_id=312&post_id=378
Antti-Juhani – http://antti-juhani.kaijanaho.fi/newblog/archives/576
TurtleMom3 – http://morningsidedrive.wordpress.com/2009/09/15/30-things-about-my-fibromyalgia/
Elizabeth – http://www.melizabethwilliams.com/journal/?p=33
Tricia – http://www.fibromyalgiaisnotmylife.com/2009/09/30-things-about-my-invisible-illness.html
Teri – http://www.teriskeyboard.com/2009/09/30-things-meme.html
Teresa – http://toomanyheartbeats.blogspot.com/2009/09/30-things-about-my-illness-you-may-not.html
Lauren – http://novelpatient.com/2009/08/31/30-things-about-my-invisible-illness-you-may-not-know/
Mary – http://cushingshelp.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Natalie – http://www.definatalie.com/archives/259-30-Things-About-My-Invisible-Illness-You-May-Not-Know.html
Kim – http://cupcakesandmace.com/2009/09/18/30-things-about-my-invisible-illness-you-may-not-know/
Gina – http://diabetestalkfest.com/blog/?p=254.
Ruth – http://desertlibrarian.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Jaimie – http://www.multitaskingmama.com/2009/09/youmaynotknow/
DimpleGirl 78 – http://dimplegirl78.com/post/188817660/30-things-about-my-invisible-illness-you-may-not-know
Stacey – http://fibroandi.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Simla – http://www.facebook.com/note.php?note_id=149265322989
Eva – http://nofun-eva.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Sara – http://silence-is-betrayal.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Elizabeth – http://eawake.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Aliza – http://www.alizahausman.net/2009/09/30-things-about-my-invisible-illness.html
Michele – http://ramblingsofinsanemind.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Jasmine – http://jasminepw.blogspot.com/2009/09/30-things-about-jasmines-invisible.html
Helen – http://pensandneedlesblog.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Deborah – http://phoenixpdx.livejournal.com/29215.html
Eynn – http://erynn999.livejournal.com/479258.html
Melanie – http://melanie-journey.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Nickie – http://puppybraille.livejournal.com/620071.html
Kristen – http://www.atasteoflyme.com/2009/08/30-things-about-my-invisible-illness.html
Beth – http://bethmorrissey.wordpress.com/2009/09/16/invisible-illness-week-2009/
lovies – http://www.dailystrength.org/people/165804/journal/1686760
Ricky – http://rb.dreamwidth.org/257961.html
Synclair – http://synclair42.livejournal.com/200745.html
Stephanie – http://stefparkspeaks.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Clayton – http://claytonbye.blogspot.com/2009/08/30-things-about-my-invisible-illness.html
Etana – http://etana.livejournal.com/637613.html
Deborah – http://www.greebledok.com/?p=596
Amiee – http://health.families.com/blog/national-invisible-illness-awareness-week-september-14-20-2009
Spencer – http://www.thesassylime.com/?p=684
Del – http://wylddelirium.livejournal.com/964430.html
Joanna – http://joanna-herlifeinanutshell.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
CableFlame – http://c4bl3fl4m3.livejournal.com/609044.html
Rachel – http://talesofmy30s.wordpress.com/2009/09/01/30-things-in-advance-of-invisible-illness-week/
Eileen – http://fireinmybrain.blogspot.com/2009/09/30-things-about-my-invisible-illness.html
Teri – http://www.healthcentral.com/migraine/c/123/85922/invisible-migraine
Hellish Fairy – http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=32674210&blogId=509432155
Kimberly – http://www.fibroandfabulous.com/2009/09/30-things-about-my-invisible-illness.html
Deb – http://debshealth.com/4966/30-things-about-my-invisible-illness-you-may-not-know/
Burnt Sienna - http://burntsienna.wibsite.com/2009/09/01/30-things-about-my-invisible-illness-you-may-not-know/
Posted via email from Kelli’s Posterous
30 Things You May Not Know (Invisible Illness)
Posted by Kelli on September 14th, 2009
Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a “meme,” 30 Things About My Invisible Illness You May Not Know. So, here it goes:
30 Things About My Invisible Illness You May Not Know (modified)
1. The illnesses (the big 3 at least) I live with are: Endometriosis, Fibromyalgia, Chronic Fatigue Syndrome
2. I was diagnosed with it in the year: Endo 1999, Fibro 2006, CFS 2008
3. But I had symptoms since: Endo – Highschool (late 80’s), Fibro – potentially all my life, but significantly since my riding accident in 2003, CFS – again, potentially all my life, cuz I’ve always been tired
4. The biggest adjustment I’ve had to make is: Learning limitations
5. Most people assume: That cuz I am dressed, and moving that I am having a good day & expect me to go do ’stuff’, whatever ’stuff’ may be
6. The hardest part about mornings are: going to bed. Seriously! my sleep hours are midnight to noon.
6a. The hardest part about getting up after sleep: is the cramped & stiff muscles from not moving..
7. My favorite medical TV shows are: Grey’s Anatomy, House, & I loved ER from Day 1.
8. A gadget I couldn’t live without is: My PC.. it keeps me in touch with people, and lets me research and express myself.. (not quite what I think the question was asking for but there it is)
9. The hardest part about nights are: slowing down, physically, emotionally, mentally.. night time is my best time, typically my most functional time
10. Each day I take too many pills & vitamins. 2 in the wee hours, 5 at noon, up to 20 at midnight. and others as needed
11. Regarding alternative treatments I: am on the fence.. I can’t be bothered with acupuncture, but Osteopathy works awesome!
12. If I had to choose between an invisible illness or visible I would choose: neither.. I am sick of being tired, & tired of being sick!
13. Regarding working and career: I would so love to return to work! but I can’t it takes too much a tole out of me
14. People would be surprised to know: that I once considered modeling as a career choice.. plus-size modeling, but modeling nonetheless.
15. The hardest thing to accept about my new reality has been: the loss of so many people in my life, friends and family.
16. Something I never thought I could do with my illness that I did was: meet someone who would understand and accept me for me & all the health issues I have
17. The commercials about my illness: suck. they are all older ladies who come across as complaining
18. Something I really miss doing since I was diagnosed is: Camping, hiking.. Amusement Parks..
19. It was really hard to have to give up: Friendships & the socialization that went with it..
20. A new hobby I have taken up since my diagnosis is: colouring.. I’ve done several pieces of work for family & my medical team.. I have also got several miscellaneous craft projects on the go..
21. If I could have one day of feeling normal again I would: bask in the glory! If I didn’t have to pay for it later?? Grab all my friends (past & present) and go camping.. out under the stars, in the fresh clear air, the trees providing shelter & protection.. sitting in front of a campfire, roasting marshmallows and making s’mores.. cooking dinner outside! Chicken, Veg & potatoes straight from the coals! Yum!
22. My illness has taught me: that I can’t have whatever I want
23. Want to know a secret? One thing people say that gets under my skin is: that I should be working, not on Gov’t subsidy.. I even lost a friend with that comment. He said “Are you working or are you still milking the system!? Stop using your medical shit for an an excuse to live!” We’d been friends since grade 9, so it still hurts. :`(
24. But I love it when people: Offer to help.
25. My favorite motto, scripture, quote that gets me through tough times is: “How am I supposed to recover when I don’t even understand my disease?” ~ Girl Interrupted. White not necessarily all that positive, or in reference to a physical disease (was a mental health patient), it does show the need for more research to even understand what is wrong with Fibromites, or what causes Endo, or what CFS really is..
26. When someone is diagnosed I’d like to tell them: learn to read your body and pace yourself & do everything to keep otherwise healthy.
27. Something that has surprised me about living with an illness is: the communities of support that exist are phenomenal!
28. The nicest thing someone did for me when I wasn’t feeling well was: Opened the door for me. something so simple, but thoughtful.
29. I’m involved with Invisible Illness Week because: I have invisible illnesses and I think everyone should be aware.. awareness bring knowledge.. & that can lead to treatments, even cures, and maybe, just maybe, eradication of some of these conditions so that we don’t suffer invisibly.
30. The fact that you read this list makes me feel: Special. Thank you. & pls, let me know you were here..