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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gabriel2012 10/09/2013

Afriend of mine has invited me to spend the weekend at a beach hotel with her adorable daughter. I know if I go I would have a great time I like being with them a lot. But I am scared. I have not done anything like this in years. I have been going out on dates but that just takes a few hours. What worried me most is my insomnia. I am going to sleep after 3 am and waking up at noon feeling really tired. I cant get out of that routine. I am afraid that if I push myself to wake up earlier I will feel bad all day or perhaps it will take me a week or more to recover from this weekend. I talked about this with my mother and she thinks I should stop being afraid of my cfs and just go. Nothing serious is going to happen to me. I will not die. She seems to think I can push myselft. But from what I know about cfs I dont think its a good idea to push myself. I might be able to make it because I am feeling better. But this summer I was unable to do anything because my insomnia was so bad. Even now without going to the beach hotel I feel tired everyday because I go to bed so late. I really want to go and perhaps my mother is right but I ask you since you have more experience with cfs. Is she ritght in saying I should lose my fear of cfs and start doing things like this?

gabriel2012 10/09/2013

Today wed I am suffering trom lack of sleep. I was hoping to rest during the weekend. I work part time. But on the other hand I really want to go to this thing. This is the dilemma with cfs. We want to do things that our bodies may not allow. I am not sure if I can do this. I really dont know. I have not done anything like this in years. I just recently started dating. And that has been great. But the insomnia limits what I can do even with that.

gabriel2012 10/09/2013

I talked to my friend. Told her what my problem was and my dilemma. She got upset. She said it is always the same story with me. I have tried to go on other trips with her but had to cancel. But we have done other things like spent a day at the beach or at the pool which to me is a lot. The difference here is that I have to sleep over in a hotel and follow a different schedule. I dont know if I can handle that. But I am dying to go. I love being with them. And she likes me. I like her. I love her kid. If I could just go and be sure that I will be ok. I am really sad she got upset. But I am always afraid of these longer trips. Maybe I should go and the hell with it. I am confused.

gabriel2012 10/09/2013

I told her I could stay over one night. She doesnt want that. She wants me to stay both nights. Or nothing.

gabriel2012 10/09/2013

I called her to tell her I wanted to go and she told me she had already cancelled my part of the trip. She sounded upset that I took so long to decide and that I was so undecided because of my insomnia and cfs. She told me I always did the same thing. Something always happened that I could not go to her invitations. I will try calling her again to see if I can convince her to let me go on the trip. I feel very sad. I really enjoy being with her and we are almost a couple but she is getting tired of my limitations due to cfs.

gabriel2012 10/09/2013

I need help with two things. One, the fact that she got upset at me for having problems with insomnia and cfs. Two, the fact that I really feel too tired to go on a trip this weekend because of my insomnia. I feel bad that cfs is limiting me this way. I know many of you have more severe limitations and this may seem trivial. I have been there. I was bedridden for two years until March 2012. But now I want to live and I feel sad I cannot go to the beach with someone I really like. I hope she does not drop me. I hope to be her couple.

gabriel2012 10/09/2013

Sorry to keep posting. I convinced her to reconsider and she will try to undo the cancellation tomorrow. Now that we might go I am scared. I feel so tired because of my insomnia. I am really scared.

gabriel2012 10/10/2013

My main problem is that I dont know how much I can do. I am feeling better and I have new limits and I dont know what they are. My mother says I am missing out on things because of fear of cfs and not because of limited energy. She might be right. But I am so scared of going over my limit and going into a relapse. Today I feel full of energy which makes me feel I could have gone to the beach and have a wonderful time with my friend and her daughter. i needed that because I have been somewhat depressed precisely because I do so little. I stay at home alone most of the time doing nothing. A weekend at the beach with two people I like a lot would have been paradise. And I think I missed out simply because of fear. That makes me very sad.

aussiedi 10/10/2013

Oh dear Gabriel, don't be too hard on yourself.CFS is unpredictable, one day we're up and starting to plan something and then bang down we go again.Your fear is understandable and has increased due to your frightening past experience of being bedridden and having no control over your energy.I can see how that fear is bringing you a lot of suffering.I too suffer with many fears based on the fact that I have so little stamina in my body.In the past I endeavored to do things despite my fatigue and fear of achieving them.I was on a plane once and fainted in the aisle knocking over 6 boarding passengers all in a row what a scene.Another time I fainted while driving and went sailing through a red light and crashed.Many years ago I attempted to go to a popular blues festival and spent the day in the back seat of our car, both crying and bobbing my head up and down at the same time, with the window down.My body just wouldn't hold up.There are numerous other stories.My point is I am fearful of commiting to outings also.Goodness I hope I haven't freaked you out more Gabriel. I was just relating to your fear.If you have enough energy and someone to get you back home safely then maybe just go for it.The worst thing that can happen is an energy crash and if your friend doesn't handle it well TOUGH TITTIES, its not your fault.So give it a try hey.

Ali5tair 10/11/2013

Really good insight Aussiedi,

Gabriel its not easy, there have been dozens of times I have had to bail from even family functions.
The sun will rise in the morning if you do go, it will rise if you are unable to make it.
Id go just to see how I respond in that situation, her daughter and your friend will learn more about you if you can go especially if they see you having to hold back when they know you want to be able to let your hair down but they see your not the same as them. This could be really important for their learning curve. I don't think there is any merit in fearing CFS its like a waste of very precious energy but I do think there is MASSIVE value in respecting your limits and PACING yourself through unchartered waters. People gain heaps of respect when they see others navigate tricky waters with courage governed by carefulness. All the very best with whatever you decide is right for you. No one in the 7 billion of us on this World knows you better than you do. You will do the right thing for you. Courage and careful pacing.

gabriel2012 10/13/2013

Well I didn't go on the trip but I got to spend two afternoons with the girl and her mom which were wonderful. That little girl makes me soooo happy. I play with her and we have fun. I dont have kids of my own. I never liked kids before cfs. But cfs has changed me. Now I appreciate different things in life. Before cfs I was too busy to care for kids. Now I see that having a kid is one of the most wonderful things one can do in this life. I love to play with that little girl. Pure joy!!

ladybugdreams 10/13/2013

Gabriel, How wonderful that you got to, not only spend time with these two, but found a new appreciation & love in your life. We never know what is going to come out of the changes in our lives but just like everyone else around, we keep living & going on. I do things alot different then I used to but still try to find the joy in my life. I am happy for you. Take care, hugs, Denise

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