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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when people wont help

gabriel2012
gabriel2012
What do you do when you are feeling really sick? Do you turn to other people or do you deal with it yourself alone? I feel the first option almost never works. Healthy people just dont understand what cfs feels like no matter how hard I try. If I tell my mother I feel really sick she tells me that cfs wont kill me. I think this is the general feeling other people have of cfs. They dont think its that bad. So they give you advice like get out and meet people, socialize, etc. In the meantime they are traveling, going out, working, enjoying all kinds of things most of us cannot do. They live in a different planet and they cannot relate to cfs. So if I cannot communicate what it is like to have cfs and I cant get any words of encouragement or empathy, I guess the only way out is to develop strategies to cope alone. Meditation has been very useful to me but I cannot meditate all day long. Currently I cant read or watch tv. Cultivating peace and silence help. I tell myself that these are things I can do better than healthy people. I cant travel or socialize but I can spend quality time in peace and silence. But again, I get tired of doing this all day. I guess what I am saying is what to do when things get really rough and all you want is a few words of support and you cant get them. Develoiping strategies to dealing with rought times alone would be really useful. I am starting to believe this is the only way. You cannot rely on other people in my experience. The more I expect from other people the more I suffer. If I don't expect anything from friends and relatives I suffer less but I feel lonely. I guess I have to get used to being alone with my cfs. That might be the best way out of this. Accepting that cfs is a lonely business.
isabelle1954
isabelle1954
I can really relate to you, countr, I had 2 kids in diapers when I first got the CFS. I am so grateful for not having that responsibility now, and that I didn't do permanent damage to their growing up. Now I can just push myself to do what I have to do and then FLOP. We have each other, now, and can fully relate, you have all my sympathy. Nobody can be truly understanding unless they've been through it themselves. I'm so grateful for daily strength. isabelle1954
BehcetsinWA
BehcetsinWA
When I feel sick, I just want to be alone in my own bed, with no "gotta do's" that I have to struggle through feeling ill. I watch DVR recorded shows, and it is wonderful. I am not depressed or lonely. It is just nice not to have to pretend to feel good, do more than I feel like I can physically bear because I have to or feel like I should, move when every movement or just standing hurts, etc. I feel pretty yucky almost all the time lately and I can't do the above as often as I feel sick, but if I can get 1-2 full days of this kind of letting go of pushing through pain and fatigue day after day till I feel like I am going to drop, I feel like I have touched a little bit of heaven on earth that's available for me, and I can bear my life and my conditions.
gabriel2012
gabriel2012
I am really moved by all the responses and the conversation that got started. Tonight I am having another bad night wanting someone to comfort me. Im feeling really sick. I don't know what to do. During the previous nights I felt good enough to meditate and I found peace. But tonight its one of those nights nothing helps. I went through several bad nights like tonight in June and part of July when my problem with insomnia started. It was hell. I hope I am not going back to that period again. Im really scared. I thought I was getting better. If only I could feel better to find peace again. Last night I had a peaceful night and I really enjoyed it. I thought I was going to be able to have peace in spite of my insomnia not getting better. I called a few people but all I get is I hope you feel better soon. I want to feel better to have peace. I feel so lonely when I feel this bad.
deleted_user
deleted_user
I really appreciate this thread.
I believe it is important for me to try to move or function, even in some small way, and not just give in to this condition as before this began I already suffer with depression and this sure does add to it.
But to feel all the honesty and candid conversation in these posts is a gift.
Thank you Gabriel2012 for starting this thread and thank you to all of you who were so candid.
It is truly a conversation I can connect with. Actually for a small time I didn't feel so lonely...
Hope everyone is as well as possible tonight.
Cndy
deleted_user
deleted_user
Hi Gabriel2012,
I have been through depression and anxiety before and I learned that it is indeed a lonely road. I gained strength from going it alone.

Now I have CFS I'm using the same techniques I used to cope with depression (Cognitive Behavioural Therapy) and having faith in yourself. There is a certain stoicism in suffering, and every now and then I like to feed a little tid-bit of my suffering to a friend or relative (just for the shock value!) this helps too! Haha

No one can help you in the mental sense because it is just you bouncing around in that mind of yours! If people around you don't understand, try providing them with some information about CFS, or write them a letter outlining your situation/feeling and what they can do to continue to be a friend (invite me round to dinner or a movie, telephone me etc). In my more nasty moods I secretly hope that my friends who aren't being supportive suddenly come down with CFS! "That'll teach 'em!" I think.

A big thing is ACCEPTANCE. Your life has changed, accept it because there is no alternative, that's just a fact. Be kind to yourself, do something you enjoy, treat yourself.

Lastly, stay positive! When I'm feeling sorry for myself I think about people whose lives are much much worse than mine, (I've worked with children with disabilities in the past and some of those kids struggle and suffer so unfairly). Things will get better! Talk to your doctor about how you're feeling. You are not alone!!! I understand how you are feeling!!

P.S. I think I'll give meditation a try on your advice!
deleted_user
deleted_user
I have learned to cope better with this illness now that I have 10 years under my belt :( I have taken up bird watching in our backyard and flower watching ;) We have lots of bird feeders and squirrel feeders. I was so excited today I had my first humming bird come to our feeder! I also joined several ladies groups. My joke is, I have my friends join these groups with me so that I am guaranteed a ride to the meetings and someone to push my wheel chair. The women in these groups have seen my good days and bad days. If I can't make the meeting, they understand. When one of our members is going thru cancer treatments or a birth or a funeral, I will call the member and see if they need meals or just to check in on them. As CFS sufferers we know what it is like to be alone or over whelmed. Reaching out to others gives me a sense of purpose and a great joy! When setting up meals for those friends in need, I use mealtrain.com. This allows others to pitch in and help make the meals. God knows I don't have the energy to make these meals!!!! :) Also, Netflix is such a blessing! I watch a lot of British "who done it" series. The scenery, the buildings, and the British accents and their terminology are so different than here in the states :) Take care, I hope you can find some relief for your loneliness.
isabelle1954
isabelle1954
When you say you feel sick, do you mean nauseated? isabelle1954
deleted_user
deleted_user
I feel alone and isolated much of the time. I don't typically drive in the evenings, and try to ask for rides places, but people don't understand. I had one person tell me once, "Well you have a car, right? Why don't you just drive there?". I told him that I am too tired, and he asked if I fall asleep at the wheel. I told him that I don't but that I don't feel well enough to pay attention to the road. He totally didn't understand. I get all kinds of responses like that when I ask for rides. There are a few people who understand and give me rides, but only a few, and I am part of a large fellowship with hundreds of people in it in my community. I have asked for help in front of 300 people and everyone thinks that I should be fine and should be able to fend for myself because I am not visibly sick. My twin sister used to come to my house once a week but then stopped when she got a boyfriend.
deleted_user
deleted_user
Just to say something positive, I have found that spirituality helps a lot, but that is just me. I don't want to push that on anyone. I also like to watch Netflix when I don't feel well. I am also blessed to have cats that will cuddle with me when I am not feeling well.
deleted_user
deleted_user
I never turn to healthy people, they are predictably disappointing.
So I spare myself the heartache instead.
FightingFibro
FightingFibro
I have found that only people who really know because of a relative, boyfriend with chronic pain, cfs understand. If they don't know anyone else who personally has it they can't understand. They pretend to understand but get this glazed look and nod but can't understand how someone could be sick, in pain etc., for a straight year ...that we must be lazy because how could someove EVER be in pain so long????