How can I deal witha sympathetic spouse?

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New Member

Date Joined Feb 2011
Total Posts : 1
   Posted 2/27/2011 11:38 AM (GMT -6)   
How does one explain to one's sympatheitic and loving spouse exactly how one feels with CFS? She wnats me to do "little"things to ease my and her boredom, but when I ache all over, my eyes and body cry out for sleep, and I am totally "malaised" it's so difdficult to explain. I am fortunate enough to have amssed enough savings to do what most retired people my age want to do, travel etc, but I if I travel I'm comotsoe for 2/3 days...I'm 71 my wife is libido, nowhere to turn....I even went to the Mayo do I cope withouut hurting my wife who I love and who loves me???

panther fern
Regular Member

Date Joined Feb 2011
Total Posts : 163
   Posted 2/28/2011 5:53 AM (GMT -6)   
just a question for CFS do they ever try patients on provigil. i was on it when i first got ill... i was so tired and my husband was deployed ( i have persian gulf illness which includes lupus and CFS and other stuff. it is a drug used for narcolepsy. it actually worked, not inexpensive but some insurances cover it. it wont make you like all spry again but it can get you out of bed. i am overweight due to long term use of steriods which help my pain, steriods on a low dose can give you some energy as well and if you are overweight there is a weight loss pill that is perscribed that acts as a stimulant... i am on that and i have never had a big appetite but my dr kept me on it because i feel like i have a bit more energy on it.

As far as your wife. Its so wonderful she is supportive. She is probably more afraid of losing you, not physically but emotionally. Words can be reassuring but leave her little notes. She may need some education on your illness but as a woman, i am on the flip side i have been married 19 years and my husband is a good care taker but i feel more now like a project or obligation than a wife just this past three months. (I have had a bit of a bad spell)

I know for him he can't fix me. and for me i don't want to be fixed i just want to know that he can still put his arm on my shoulder, leave me a note on the counter, write her a remember when note. those things will let her know that you are still loving her the same as you always have.

have you had a sleep study done.

with best wishes.

New Member

Date Joined Apr 2011
Total Posts : 13
   Posted 4/27/2011 9:07 PM (GMT -6)   
You are very lucky to have a spouse, especially one that is supportive. I was unlucky enough to be single when I got ill, and have never had the energy to maintain my regular friendships, much less date.

Just an idea, but perhaps have your disease write your wife a letter. I know that sounds crazy, but I also know that trying to explain exactly how hideous it is to be sick is a hideous task, and most of us begin to feel whiny or pathetic after half a sentence.

Having your disease "explain things" not only emphasizes the fact that it has its own mind, so to speak, and exists headstrong and unapologetic, but it also helps to show her how and that it exists absolutely without your consent or approval and does things TO you whenever it wants, how it wants. The disease in its own voice can reveal how much it is a greedy and jealous companion. It does not want to share you with anyone. It has no respect for plans, pre-arranged events or outings with loved ones. Well, you get the idea.

What you are going through shouldn't "hurt" anyone much less your wife, save for in empathy. It is the nature of the illness that there is no such thing as doing something "little" or small whether to relieve boredom or to salvage friendships that may be disappearing before your very eyes. The disease won't allow what it won't allow. It isn't your fault, of course, and she will understand that.

Let us know how you get on. I hope things get better for you.

Have Fibromyalgia, Polyneuropathy, Hep. C, rheumatoid arthritis
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