Remember on Awareness Day: CFS & FM Are Family Diseases

In honor of CFS & Fibromyalgia Awareness Day tomorrow, I wanted to focus on how ME/CFS & Fibromyalgia are family diseases.  I know that as a patient myself, I have often got in the mode of thinking how ME/CFS affects ME, how Fibromyalgia affects ME…but it’s not just me that the disease affects.  These illnesses affect our entire families. 

CFS & Fibromyalgia affect our spouses, children, grandchildren, stepchildren, parents, siblings, in-laws, nieces, nephews, aunts, uncles, friends, employers…everyone we have contact with regularly is affected somehow by our illness.  I know for myself I often miss family birthday parties, holiday celebrations, family members sporting activities, and many, many more that I can’t even begin to count.  I have missed out on a lot over the past 20 years but so has my family because my illness has had a direct affect on their lives. 

After a while, people just stop asking how we are doing and just assume that we feel like crap and that we won’t make it to events.  We can’t be depended on for helping most of the time so if we do offer, they know that it’s never a definite yes but a “maybe”.  No one can depend on us anymore and we can’t even depend on ourselves. 

The hardest part for me being sick is how it affects the children in my life.  My son has to live on a daily basis with my illness and my step-grandchildren have been affected by it as well.  I can’t really make any advance plans to do anything with any of them and if I do, I usually end up having flares on those days.  So if I am able to attend, I’m not fully there because I am so miserable.  It’s hard for adults to grasp these illnesses and then we have to try and explain to young children how sick we are.  It’s a no-win situation for everyone involved. 

So on May 12th, when we are busy trying to raise awareness, keep in mind all of those people in your lives who are also touched by CFS and/or Fibromyalgia.  They all need to be recognized also.

Virtual Lobby Day for ME/CFS Awareness Begins May 10th

I truly believe that as ME/CFS patients it is our responsibility to get the word out and raise as much awareness for this disease as possible.  The CFIDS Association has made it easy for us to do so with their Virtual Lobby Day.  The purpose of the Virtual Lobby Day is to promote letter writing to pertinent elected officials and representatives to help raise awareness for ME/CFS.  The CFIDS Association says that this year their campaign will target Secretary of Health Kathleen Sebelius, members of the U.S. Senate and House, President Obama and Vice President Biden, and local media.

You can use the pre-addressed letter templates already created by the CFIDS Association through the Grassroots Action Center.  Let’s all do our part and please use the link below to send a letter to the above listed officials.  Let’s make this year the best year for awareness ever!

CFIDS Association Grassroots Action Site

Press Release: Local Woman Fights Fatigue – One Post At A Time

I am sending out press releases to the local newspapers to help raise awareness for ME/CFS Awareness Day on May 12th.  I wanted to post a copy on here so that others can see how to write a press release so you too can help raise awareness in your city.  

PRESS RELEASE – LOCAL WOMAN FIGHTS FATIGUE – ONE POST AT A TIME

Chambersburg, PA – A local Chambersburg woman dedicates what little bit of energy she has each year to help raise awareness for ME/CFS – Chronic Fatigue Syndrome.  May 12^th is CFS Awareness Day and Sandy Robinson, 40, has been living with this debilitating condition since the age of 21. 

CFS affects more than a million American adults and teens, yet too few people understand its serious and long-lasting effects. It is characterized by severe exhaustion, disabling problems with memory and concentration, widespread muscle and joint pain and persistent flu-like symptoms. Research has documented defects in the brain and many body systems and new studies from CDC and other scientists show abnormal gene activity in several key regulatory systems throughout the body, but we still don’t know what causes it or how to effectively treat it. The CDC has compared the level of disability caused by CFS to multiple sclerosis, end-stage renal failure and chronic obstructive pulmonary disease (COPD). There is no diagnostic test and treatment of the symptoms has limited effectiveness.

Sandy, like many CFS patients, can look back and determine when the illness first began.  At the age of 20, Sandy was diagnosed with mononucleosis, which is typically more severe in adults than it is in teens.  Sandy never fully recovered from the mono and after that her health continued to deteriorate.  Over the years Sandy has experienced many setbacks with her health and has been bedridden many times due to the severe symptoms and exhaustion caused by CFS. 

Like many CFS patients, Sandy had to continue to try and work regardless of how sick she would become.  Over the years, Sandy would work herself up to management positions only to have a major flare from her illness and then she would have to take time off, sometimes months, and had to slowly build back up her schedule to full-time. 

Sandy says she completely ruined her health when she became self-employed for a popular direct sales company.  While self-employed, Sandy had worked herself to the top 2% of the company and had earned a company car by her 2^nd anniversary with the company.  But shortly after her promotion, Sandy had a major setback and was once again bedridden for months.  “I pushed myself hard to get to the top because that is what I have always done.  My body was constantly shutting down while I was working my way up but I would ignore it, push through, and would tell myself that I could rest once I reached the top.  But that never happened.  Once I was at the top, the hours became longer and I was back to working more hours than I ever worked when employed by someone else.  My body finally shut down completely and I had to go on disability.  That was the darkest time of my life.  I lost everything I had worked so hard for:  the car, the position, and the income.  The medical bills were piling up faster than we could keep up with and I couldn’t work at all.  I was severely depressed for a long time because I had always worked hard and enjoyed it.  I felt like I lost my identity when I couldn’t work anymore.”

Then when Sandy didn’t think things could get any worse, she developed two more chronic illnesses that are common in CFS patients:  Interstitial Cystitis and Fibromyalgia.  Robinson states, “Interstitial Cystitis is a severe bladder disease that causes excruciating pain in the lower abdomen and pelvic region and bladder hemorrhages.  It also causes pressure in the abdomen and vaginal area and it feels like being nine months pregnant all of the time. I was lying on the bed in the fetal position most of the time because the pain was so severe.  IC also causes frequent urination and I was going to the bathroom up to 60 times a day.  My mom had to come and stay with us for a while because I couldn’t take care of my son while my husband was working.  I couldn’t do anything. Between the exhaustion from CFS and the pain I was in, I felt like my life was over.”

Sandy says that her family has been a great support system and that if it weren’t for the love and support of her parents, husband and son, she would probably not be here today.  “I have always been a strong person but having a chronic illness as devastating as CFS has been extremely hard for me emotionially.  I try everyday to be thankful for what I can do and I try not to focus on what I can’t.  I also never give up hope for a cure.” 

In 2006, Sandy started a blog on CFS, Fibromyalgia and IC Disease to help deal with her depression and to cope with her feelings of not being able to work.  According to Sandy, “Fighting Fatigue (http://www.fightingfatigue.org) has become bigger than I ever thought it would.  It has not only helped me but I get several emails from readers who say that my website has saved them.  They say that they finally have someone they can relate to and who understands what they are going through.  They also discover that a lot of the symptoms that doctors tell them are in their heads are really real…because I have the same symptoms.”   

CFS is a complex illness that has to be diagnosed through exclusion of other illnesses.  Because there is not a test that can definitively diagnose CFS, there is a stigma surrounding CFS that the patients are just lazy or have emotional problems.  “But I know that is not true.  Over the years through my website I have talked to many CFS patients and most of us have one thing in common:  we are Type-A personalities; hard working and ambitious.  There have also been many studies that support that CFS is a physical disease and not a psychological one.” 

Sandy also faithfully donates money to the CFIDS Association of America, the largest and most active charitable organization dedicated to Chronic Fatigue Syndrome. 

In 2008, after Sandy’s son started school, she decided to try and go out and see if she could work again a few hours a week.  “My health started improving some in 2006 and by the time my son started school, I was pretty sure I could work a very restricted schedule.  I work about 8 – 12 hours a week at Giant Foods in Chambersburg and getting back out in the workforce has been good for me in many ways.  I don’t know how long I will be able to keep it up but I am going to work as long as I can.  I have a lot of setbacks with my health but I have learned how to listen to my body and I don’t push myself anymore.  If I feel a flare coming on, I rest.” 

“Every May I try to do something to help raise awareness for CFS and I try to educate people on the severity of the illness through my website.  All I can do is continue to fight – fight for myself, and fight for a cure.”

If you would like to make a donation to the CFIDS Association, please check out their website at http://www.cfids.org.  To visit Sandy’s blog, go to http://www.fightingfatigue.org.

May Is ME/CFS Awareness & Fibromyalgia Awareness Day

It’s almost that time of year again already!  Wednesday, May 12, 2010, is ME/CFS Awareness Day and May 15th is Fibromyalgia Awareness Day.  Every year, I try to do something to help raise awareness for CFS & Fibromyalgia.  In the past I have done fundraisers, written press releases for the newspapers, contacted government officials, and donated money to organizations to help support CFS & Fibromyalgia research.  This year I am going to once again send out letters to all of the local newspapers and I am planning to contact the local radio station to see if I can be on their morning show to talk about CFS & Fibromyalgia on Awareness Day.  

The CFIDS Association has an annual Lobby Day on Capitol Hill where CFS patients get to talk to officials about CFS research.  The National Fibromyalgia Association has a page on their website full of ways to help raise awareness for Fibromyalgia.  Click HERE to check it out! 

As CFS & FM patients, it is our responsibility to help raise awareness for these devestating illnesses.  Most of us are physically unable to do a lot of things to help, but it takes only a minute to click a link and to send an email to your local government officials.  We need to be heard loud and clear!  We deserve better treatments, better physicians, and better care.  If we want change, then we have to do something about it.

Day of Invisibility – Please Watch Video & Spread the Word!

June 6th is the Day of Visiblity for invisible chronic illnesses. Please watch the video, visit the Invisible Diseases website, make or download cards, and do your part to help! If everyone of us suffering from chronic illness would commit to sending just 5 postcards to people they know, sharing their story, imagine all of the awareness we could raise! 

Here’s what you need to do – it’s simple!

• Go to the Invisible Diseases website
• Click on Advocate (top right of home page)
• Select any of the three postcards to download, print out, and send to people you want to share your story with. 

I will be doing my part.  Please join us in our efforts to raise awareness and visibility for the many invisible chronic illnesses out there!

Discover Magazine Lists XMRV in ME/CFS In Top 100 Stories of 2009

This is one way for ME/CFS to get some awareness that we desperately need!  The Discover Magazine has listed the XMRV findings in ME/CFS as #55 in their Top 100 Stories of 2009.  To read the whole article, please click here: Top 100 Stories of 2009 #55: Virus Invades Human Genome and Causes… Chronic Fatigue?

I am hoping that this new virus information leads to a cure for ME/CFS.  Wouldn’t it be so amazing to be completely well?  I would love to know what that feels like!  Here’s to hoping 2010 brings even greater research and findings for us!

Woman’s Day Covers ME/CFS

Ever since news of the XMRV research was made public, all of a sudden Chronic Fatigue Syndrome is big news.  Here is another article on ME/CFS by Woman’s Day.  I’ve included an excerpt and the link for your viewing pleasure.

You’re always exhausted and sometimes need to spend days in bed. You feel achy, constantly have a headache, and can’t concentrate. Your doctor has tested you for mono, thyroid problems and a slew of other health conditions, but nothing seems to be wrong. So are you just depressed? A complainer? Or are you physically ill?

Understanding Chronic Fatigue

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