Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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Nicollynne 01/21/2009

My husband doesn't seem to understand why I am so tired all the time. He get so upset when I doze off at the computer or something and I was supposed to be doing something important like paying bills or making an important phone call. I have 2 children at home to take care of, but I cannot stay awake. My mind is foggy all the time and I forget everything. How can I get through this and help my husband understand what I am going through? How can I make sure I actually get up in the mornings? I have 7 (yes, SEVEN) alarms set every morning and I will sleep through all of them. My son has missed school so many times because I sleep through the alarm and can't get him to the bus stop in time. I feel like I am neglecting my kids, house, and husband.

deleted_user 01/21/2009

I'm sorry you're experiencing that. It's very important that our partners understand our illness - we need their support very much.

I suggest that you get your hands on some of the CFS literature out there and make him read about it. For example, one of the best books out there 'Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia' by Alison C. Bested (readily available from Amazon), explains the symptoms in great, medical detail. It explains what is happening to our bodies, and to our brains.

I've found that until people read about it for themselves, it doesn't quite click in their minds.

Also, if you have an understanding doctor, perhaps your husband could come along with you to an appointment.

The reality is that you can't now do what you used to. If you are sleeping through 7 alarms then you need to be asleep. Sleep disturbances are a common symptom of CFS. and the reality is that it sounds like your husband needs to be there for the kids in the morning, because your body and mind are incapable of doing so at this point in your illness.

It's possible you might need to get counselling. I'm not sure if your illness has been recently diagnosed, or not - but it sounds like it has changed your married life. Sometimes that can be a really hard adjustment for a partner to make. It's possible he's in denial about it. There are all kinds of possibilities, but perhaps he needs some help learning to accept it, and the new roles you both play in the family.

*hugs*

deleted_user 01/21/2009

I am sorry. I know how you feel. When I was at my worst with CFS, I had small children. It was so hard. My husband came to me and said that I was ruining his life. That hurt. Would he have said that if I was in a wheelchair? Or had cancer? It's a hidden disability.

That said, falling asleep, and not being able to get up, you really should be evaluated for Sleep Apnea. (spelling?)

My son had Sleep Apnea so bad, it interfered with his life, AND was deemed life threatening! It is another hidden illness. Consult and Ear, Nose Throat specialist. You may even have to have a diagnostic sleep study.

It could also be Narcolepsy. Run that by your MD as well.

Take care.

deleted_user 01/22/2009

I'm sooo sorry this is happening to you!! I know how you feel.

deleted_user 02/10/2009

Hi Nicollynne If you email me, I am going thru the same thing for 8 years! At wits end! I am going thorugh the same thing-relationship involved as well and i have teenagers....storm_juanita_bonita@hotmail.com

deleted_user 02/10/2009

I would suggest you take your husband, kicking and screaming, to your next doctor's appointment and have the DOCTOR explain your behavior to him. Some people do better when it comes from a "professional." (I use that term tongue in cheek.)

deleted_user 03/15/2009

I feel for you and understand as someone else who goes through this. I'm new and just joined this group out of desperation. I'm fortunate that my husband tries to be understanding. He's said "there has to be something wrong; nobody can sleep that much and be normal". He still can't really grasp how difficult it is, how hard it is for me to do simple things and how I always feel on the brink of total collapse. If only our spouses could live in our shoes for a day, as the saying goes.

Has he made any efforts to understand your illness? The other suggestions to have him read about it (books or info. online) seem good. Sometimes reading other people's stories has more impact than just reading about signs and symptoms. There was a brochure called the faces of CFIDS (or something like that)I one got off the CFIDS website. It brought tears to my eyes because I could relate so much to the stories of real people in it. Maybe something like that would make it more real and understandable for him.

Take care! (I wish I had a magic solution or at least better advice but then I'd take care of myself, too, and wouldn't need to be here.)

Oh, do you take anything to help you sleep? I went to see a specialist and one of the things he said was "No wonder you're tired all the time, you're in too much pain to sleep!" He prescribed Klonopin which does help me sleep better. I was nervous about the drowsy effect and not being able to get up when I needed to the next morning and so just took 1/2 a tablet and it still helps. If you already take something, maybe you need to take it earlier in the evening before bedtime so it's not so hard to get up in the morning or maybe you need to try something else. Just a thought.

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