Expert: Suzan Jackson - 7/30/2010

Question
Hi, I appreciate and advice you can give me. I have had Chronic Fatigue for so many years I think it has been about 15 years.I am 56 years young and I feel my life is over. I have about lost all hope. My fatigue is so severe I cannot do anything but sit. I also suffer from severe chronic pain. I will go and try and do a load of laundry and by the time I am done I am completely exhausted. My boyfriend who I live with comes from a medical background his father was a medical doctor and he thinks he knows and understands my illness and he does not.My self esteem has been ripped from me as no one understands how exhausted I am. I am thought of as lazy and prior to my illness I was the most get up and go person you ever saw. I was wondering if you could help me to explain to them how much I suffer that I do not want to be this way.  The smallest task does me in totally. We have allot of arguments as he said I do not try and how I should exercise which I cannot do because of the severe exhaustion and severe pain that I deal with. I am on two oxycontin a day which does not even touch the pain. I also have severe fibromyalgia. He suffers from TMJ pain and some back and joint pain and is always trying to compare my pain to his. I am not in any condition to have a pain contest. The depression I feel is terrible and I do not feel I have anyone who understands what I have to live with on a daily basis. This all came on after having 9 breast operations after contracting a severe staph infection which kept me in the hospital a year. Apparently I died twice and they brought me back. I went from being a 39ddd to a 36c they had to cut away so much breast tissue to save my life from the staph. It was attacking my whole body. I feel I am all alone with no one to understand. We do not need any help in feeling bad about ourselves as illness robs you of your dignity and self worth. I even wonder why God lets me live as I serve no purpose as I cannot do the smallest task and this makes me feel so horrible about myself. When my boyfriend reminds me that I do not do a thing around the house and how he has to do it all and help me there is no hole big enough for me to crawl in.  It creates such feelings of isolation and shame in me. I want to do so many things but I just cannot I am that terribly weak. Is there anything you can suggest to me to help me to get the support I so desperatley need and to explain to him how serious this illness is. No one seems to take it that seriously and realize how delibataing this disease can be and how it robs you of your life that you once knew. I have 9 siblings and none of them care I have really no one who really understands how tough my life is and what it does to me spiritually and emotionally. I am just at my wits end and feel that I will never be understood. I do not want sympathy I need empathy and understanding. Also I was wondering if you could lend any help in the area of anything that can help with the severe fatigue I am dealing with. I feel my life serves no purpose and I am lost in a pool of exhaustion and pain with no hope in sight. I know how important it is to have support when you have this illness but I just cannot get it and nothing hurts me more than to hear that I just do not try or comparing my pain to his pain. I really need some help in this area and do not know where to get it. I have always been a very compassionate and giving person who has taken care of allot of ill people in my day and now that I need it I cannot get it. I was praying that you may know of something I can take or do for the severe fatigue if I try and push myself I get way worse. Last night I slept 10 hours and I have been awake only 2 hours and I am so tired I could go right back to sleep. I wish I could go and lay down but I cannot or they (the family) will get mad at me. Also when i am  exhausted I get very sensitive to light and to noise it becomes hyper to me and I need to be left alone in a quiet room. When I try and do this my boyfriend says I am only depressed and I am trying to isolate myself from others he just does not get how much I am suffering. I would be eternally gratefull for any advice you could lend to me. I dont want to give up hope but I am about there. I am so tired of being so tired and weak. I have no life to speak of I do not go anywhere at all I am to tired to  and live in this house 24-7 with only a computer for a friend. That is my source of joy and it does not judge me. Can you offer me any advice or some hope. Is there anyway I can get this family I live with to understand how hard this disease is and how serious it is to have it. I just do not know what to do anymore. I thank you advance for any help you can offer me. Gods Blessings to you.

Answer
Dear Michele -

Sorry for the delay in getting back to you.  I haven't been feeling well and had a very busy weekend, so I barely looked at my computer but felt awful when I read your note and realized I'd kept you waiting!

I want you to know - first and foremost - that you are not alone and that I understand exactly how you are feeling and what you are going through.  There are millions of people all over the world affected by CFS, debilitated as you are and very often misunderstood by family and friends.

While I realize that most people with CFS don't have many options and must rely on family to take care of them, if you do have any other place to go, I would urge you to get out of this situation and away from people who treat you so poorly.  If you have a caring friend or a family member who DOES understand how ill you are or even some means of supporting yourself, then a change in your living arrangements could make a huge difference.  The stress of being treated badly only multiplies the devastating effects of CFS.

If, as is likely, you are stuck in your current situation for the time being, I have two suggestions to help you.

First, there is a vast network of support here on the internet - millions of people with CFS who understand exactly what you are going through.  You don't need to feel alone and isolated anymore.  One of the best approaches is to start reading blogs written by people with CFS.  When I did this years ago (and started my own blog), my world expanded greatly - I have "met" so many wonderful people through blogs - people who not only understand my illness and my life but who are warm, supportive, and encouraging.  If you like, you can start at my blog:

www.livewithcfs.blogspot.com

In the left-hand column, down a bit, you'll find a list of other CFS blogs that I follow.  At each of these blogs you can read about others in your same situation and how they cope.  Even better, take a moment to leave a comment whenever you enjoy or can relate to something written in a blog.  Before long, you'll find yourself a part of this wonderfully supportive group of people online.  It really helps, especially when the people you're living with don't understand.

As for your family and your boyfriend, you can try to educate them about CFS.  This doesn't work for everyone, but it's worth a try.  When I first became ill, I was stunned when my family seemed to be so unsupportive.  I went through some really rough years of feeling abandoned by them.  Eventually things got better.  In hindsight, I realize that many of my family members were acting out of love for me, even though they were unintentionally hurting me.  My mom and other close members of my family were in deep denial that I could be seriously ill simply because it was too painful for them to accept.  My mom and I really hit bottom in our relationship at one point.  I finally sent her a 6-page letter explaining what it was like living with CFS and what kind of support I needed from her.  Fortunately, she read my letter and took it very seriously because she could see our relationship deteriorating.  She sought the help of a therapist who specialized in families of chronically ill people.  Today, she is very supportive of me and we have a close relationship again.

You might start with a book that explains what it is like to live with CFS.  One of the best is Encounters with the Invisible by Dorothy Wall.  She tells her own story of living with CFS but also provides excellent information about the illness.  You can order the book from amazon.com or borrow it from your local library like I did.

Another excellent book is Katrina Berne's:

http://www.amazon.com/Chronic-Syndrome-Fibromyalgia-Invisible-Illnesses/dp/08979...

It's a little old by now and doesn't include the latest research, but it's a comprehensive book that explains medically what is going on in the body of someone with CFS and what it's like to live with CFS, as well as lots of great advice on treatment.  In that letter to my mom years ago, I copied an entire chapter out of this book and included it!

If your family and boyfriend prefer getting information from the internet, the best source is the CFIDS association:

www.cfids.org

Click on About CFIDS for some excellent information on what's behind the debilitating symptoms of CFS.  A friend of mine recently wrote an excellent article about post-exertional malaise that might help your family understand why any exercise or activity makes you sicker:

http://www.cfids.org/cfidslink/2010/060204.asp

This blog post I wrote last fall includes a few links to some great videos that can help explain CFS to your family:

http://livewithcfs.blogspot.com/2009/09/powerful-cfs-stories.html

There's also an excellent video about CFS called I Remember Me that's available on DVD, VHS, or on-demand through amazon.com:

http://www.amazon.com/I-Remember-Me-Michelle-Akers/dp/B00020X942/ref=sr_1_1?ie=U...

Maybe with all these books, videos, and websites your family will start to understand that you have a serious illness that debilitates many people.

I would also highly recommend counseling - for you and for them, if they're willing - with someone who specializes in chronic illness.  Before choosing someone, make sure they are familiar with CFS and understand its severity.  Using a referral service available through my husband's employer, I found a wonderful psychologist who not only specialized in chronic illness but has a grown son with CFS.  I saw her for 5 years, and it really helped me.

Finally, I wonder whether you have a doctor who understands CFS and knows how to treat it?  Although there is not yet a cure for CFS, there are treatments that can help.  If you don't have a CFS-knowledgeable doctor, here are two databases to help find one near you:

http://www.co-cure.org/Good-Doc.htm

http://www.chronicfatiguetreatments.com/wordpress/treatments/chronic-fatigue-doc...

A good doctor will also test you for other treatable conditions that might be making your CFS worse.

Areas of CFS that can be treated with medications include:

Sleep dysfunction:

http://livewithcfs.blogspot.com/2009/09/treating-cfs-sleep-dysfunction.html

http://www.cfids.org/archives/2001rr/2001-rr3-article01.asp

Orthostatic Intolerance:

http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html

And treating underlying infections.  Here's a good summary of CFS treatment protocols, including treating infections:

http://www.aboutmecfs.org/HeadPgs/TrtIntro.aspx

I hope some of this helps you.  Although there isn't a cure for CFS (yet!), there are many ways to improve your quality of life. I hope you'll come check out my blog and "meet" some of the other people in our blogging community - it sounds like you could use some understanding friends!  Please let me know how things go for you.

Sue Jackson

www.livewithcfs.blogspot.com