Just need words of encouragement , to know that it can get better, need somone who understands lack of spousal support,spousal burnout ? Need prayers and any great resources.
Hopeful is feeling hopeless,2 year into CFS with no improvement,bedbound most days except for being up for maybe 2 times a day for maybe 15 mins at a time.My husband feels hopeless, feels like none of the medicine is helping,he is overwhelmhed with the care of kids,work ,etc.We depended on both incomes, waiting on our court date re:disability,down 70,000 a yr that I contributed as a nurse.Very optimistic to start with to be content with limitations and find my path to recovery through getting back to the basics of life eating whole foods,setting my expectations appropriately,live simplier with less stress,trust God to meet my needs,etc.Believe I am a simple woman who just wants to live with simple dignity, I have expressed this to my husband.He feels he can't offer me every am to get into the chair ,help with meds and breakfast and lay out clean clothes and help with a bath.He can help only as time and work schedule permits.He wants to help along the way as he can.I need routine and a cheerleader in him to help me strive to be the best I can.I have shared with my friends,family,church and I have asked him could we pay someone for just a couple hours in the am.Replied "we just don't have the money."I am thankful for the prayers and financial support from family at times to make ends meet so we don't lose our home.I had rather live in smaller home to decrease financial strain but we are on "sacred family land."Our priorities are not the same,or maybe he thinks I am "lazy" and am choosing to not help myself.I was inspired by the book "Fatigued to Fantastic" written by a nurse with CFS but without help can not put her process to recovery in place without a helpmate.I have lots of goodwishers but no helpmate.Am I expecting to much?How do I get him to understand or cope.He is a good man at heart.He takes me and goes in every doctors visit.The doctors assure me the symptoms are not in my head in front of him.I have beared my heart,concerns and asked him to devise a schedule that meets his needs and I will adjust to it. He will not give on anything except he loves me and he will help me when he can but that means I can not have a routine but just as it works out that he can do for me.Someone please share they have been there and how to stay hopeful?I would give anything to be back at work and active in church and in my childrens lives.If I was able I would go to counseling for help but first I've got to be able to get up ,get dressed and drive!!!!!!
God never gives you more than you can bear. He might test you and push you to what you believe are your limits but he will always be there for you. The big problem is that oftentimes, what we want isn't what he plans for us.
You mention that you've seen your physicians who I assume are family physicians like myself. But have you seen a CFS specialist? Not someone in a private for-profit center that advertises that they treat CFS & fibromyalgia but in an academic setting, eg teaching facility. That way you can be sure you're getting cutting edge care for something that we still don't understand and therefore can't treat really well.
You've covered the basics: good nutrition, regular exercise, adequate sleep. I'm sure you've also gone online and found lists like . I would also ask you to re-evaluate your lab tests, especially the hormones. Are your numbers truly optimized or just good enough? Think in terms of grade school. You can get a passing grade that ranges anywhere from the lowest D to the highest A. If you're trying to become your classes valedictorian, wouldn't you be disappointed with your first B, much less a C or D? Unfortunately, too often, my colleagues will look over your tests and declare the results "good enough" b/c there's nothing abnormal. That's like looking at a report card and saying it's good enough b/c you didn't get any F's.
I'm not claiming that playing around w/your hormones is a miraculous cure but it might help boost you a bit as long as you don't take too much and end up w/side effects. Remember, all medicines are a double-edged sword. Sorry, I forgot, you're a nurse. You know that. Good luck!
PS depending upon where you live, you might be able to find a licensed therapist/counselor who is willing to make housecalls . . .
Thank You so much for replying ,I have not been on the website in some time .I appreciate you taking time out for encouragement.I am close to wake Forest University Medical Center in NC.Used to work there but don't remember anyone specializing in CFS.I in 25 yrs of nursing have never meet anyone with CFS but lots of Fibromyalgia pts,I have been so blessed up until about a yr ago I rarely had any pain.I have mod- severe impaired cognitive and fatigue as the 2 biggest problems.The most helpful wa the infectious disease specialist for 2 visits and now back in the care of family MD who is treating me with Aricept @age 44 in case it is early Alzhiemers(really don't believe he is that knowledgable about CFS(couldn't answer when I asked him for resources to learn about CFS that followed his beliefs).What specialty usually manage CFS ?Thanks for your time.
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