Thursday, May 24, 2012

In Recognition of the 20th Anniversary of The May 12th International CFIDS Awareness Day- "My Life With CFIDS And Fibromyalgia."

In Recognition of the 20th Anniversary of the
May 12th International CFIDS Awareness Day-

"My Life With CFIDS and Fibromyalgia"
by Anne LiConti R.N.






My name is Anne. I am a native NY'er. I presently live on the East Coast of Central Florida. I have 3 children and I am divorced. I live with the devastating disease's called "Chronic Fatigue and Immune Dysfunction Syndrome" and "Fibromyalgia". 

I have had this since I was 11 months old after a bout with the measles. I wake up everyday not feeling well. I don't think I ever had a day in my life that felt 100% healthy.

This illness has been a slow progression over the course of my life. I was fortunate to finish school. I was also fortunate enough to finish college. I am a registered nurse.

I was able to work for 10 years. Because of the disease I had to stop. I haven't worked since October of 1994.  

I am mostly homebound, but try to get out when my kids are with me. My children live primarily with their dad because of this disease. This was a heartbreaking decision for me to make. But Sometimes you have to make sacrifices for the best of your children.

This disease affects each person different. In my case I can no longer work. Spend many days housebound and in bed. It feels like the flu that never goes away. All the pain and aches go along with it.

It also causes immune system problems. I have suffered from many sinus,respiratory, and urinary tract infections. Neurological problems arent excluded either. I have problems with my memory and feel like I live in a fog. We with the disease call that brainfog. 

There is no cure. We only have symptomatic treatment with prescribed and naturopathic treatment. And sometimes that don't even help some people. I myself take many of both. Some days these treatments allow me to get out of bed. If I am lucky to even get out of the house. Sometimes it doesn't even do any of that.

This disease drastically changes your life! Things may never be the same again. It causes many limitations. Limitations are hard to accept. A previously active person can no longer do what they were able to do the way they want to do it. It's hard for affected persons to accept these limitations. You can compare it to a marathon runner who used to run 26 miles in less than 3 hours. With this disease they may not even be able to no longer walk a block, let alone even jog. 

This devastating disease has caused sadness in many lives. Families no longer together. Unable to get out and have a social life. Losing non understanding friends. No longer being able to work. Divorce. I went through a divorce myself. Depression and even suicide. This list can go on and on.

Being unable to be there for your children is very hard. It gives you the feeling of being inadequate, useless,etc... There are some people who don't and will not understand. P eople have said, "how can you leave your children". I never left!! I just live in another house.

I as an R.N. and a mom know that I could no longer do it 24/7. And it was best for my children to live primarily with their dad. 
This illness hurts my children very much. This is heartbreaking to me to say the least. I love my children more than life itself. And only a good mom would make a sacrifice like I have. It would be selfish for me to have had them with me full time. Some days I wasn't even able to get them up and dressed for school. I know in my heart I did the right thing. And my fellow pwc's(person's with cfids) and friends who know me, know that also. 


When my children come to stay with me they understand more than some adults , my limitations. They are the best thing that ever happened to me. 
Being fortunate enough to have a computer, through the years I have made many friends on the net who are fellow sufferers. They have become like family. Unless someone lives with you to see what you go through on a day to day basis, they really don't understand what it feels like to live like this everyday. Friends who are fellow sufferers do.

Alot of us with this disease are too sick to even get to an outside support group. This give those of us a chance to get the support we need.

I also chat with my friends on the instant messenger programs and now Facebook

My friends there have become like my family. We all are there for each other when the going is rough!! 

I try to keep a positive outlook on life. Dwelling gets you no where except depression, which I try to avoid!! My faith is the main thing that gives me strength. Jesus has made this illness tolerable. The Bible says that "We can do all things through Christ who strengthens us!" ~Philippians 4:13 

This disease can be a very a very lonely disease, it would be alot more lonely if it weren't for the internet where you can fellowship with fellow believers and also talk with fellow sufferers. 

I hope I have given you some understanding to what a person with this disease goes through every day of their life. We with this disease are trying to educate more people about it because there are many who think it is all in our heads. I was and still am a medical professional. I can tell you that it isn't. -Anne LiConti R.N. 1998 

 

 lost dreams and forgotten pleasures,  sold like a soul to a gluttonous world 
feeding on my frenzy and anxious activity.
but just when the old heap of bones seems most dry and deserted,
a strong Breath of Life stirs among my dead.
Someone named God comes to my fragments and asks, 
with twinkling eye: ‘May I have this dance?’
the Voice stretches into me, 
a stirring leaps in my heart, 
lifting up the bones of death."       
Joyce Rupp


Are you feeling like a heap of dry, deserted bones?

Are you disappointed in life? In yourself? In others?

Are you hurt, discouraged, depressed, or simply tired?

Do you need a Breath of Life today?


“I have come in order that you might have life—life in all its fullness”
(John 10:10).

Whatever in you feels dead, there is One who longs to breathe new life into each step of your day. Will you take His hand and dance?

See Ezekiel 37:5


Excerpted from May I Have This Dance? (Notre Dame, Ind.:Ave Maria Press, 1992), pp.11-12


     
I originally wrote "My Life With CFIDS And Fibromyalgia" in 1998 14 years ago on my old website of the same name.  You are probably wondering what has happened since then.........

A few things........not much.......

It wasn't until this past October of 2012 that all of us with the illness got news of some hope from Norway, news which finally and officially classified the illness as an auto-immune disease.

"Norwegian breakthrough in ME-Research [TV2 Nyhetene with English sub]"


To view this video with English translation, you must click the little "cc" on the bottom of the you tube video. 


To be continued....

Thankyou for stopping by an reading "My Life With CFIDS and Fibromyalgia."

5 comments:

  1. Hey Gorgeous! WONDERFULLY accurate, descriptive and cogent description of our lives! Can you PLEASE forward this to Dr. Sanjay GUPTA, head doctor at CNN. I believe his email is SanjayGuptaMD@CNN.com. he is a practicing neurosurgeon, who looks at MRIs and CAT SCANS for a living! and he has three small children who could contract this crappy disease! and he works right down the street from the CDC! we need to get the TRUTH out! ox TMH

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  2. Thank you for sharing. My husband is disabled due to an injury so he feels many of the same things that you do. It's not easy to keep a positive attitude but it looks like you are doing wonderfully!

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  3. Thank you so much for sharing. I have family members that have fibromyalgia, so I know how painful and difficult it can be to live a full life.

    ReplyDelete
  4. Big hugs...I wish things were easier for you.

    ReplyDelete
  5. **HUGS** I hope things get better for you..sounds like your staying strong though!

    ReplyDelete

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