Myalgic Encephalomyelitis Community
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Social life = zero

Does anybody with chronic condition feel lonely? I found myself literally not going out anywhere. My work exhausts me to the point that I am spending my days at home in front of TV. It's bad I know. Currently signed off for a month and feeling so much better. But my point was though, I have basically lost most of my friends due to feeling this way. I never can meet them like they want for drinking or even there are days where putting make up and spending half hour on the bus will be the end of me for that day or even two , so it seems like a waste of my rest day.

I could not believe how cruel some people can be as well. One of my 'friends' told me she doesn't want to keep in touch with me anymore cause I burden her with my problems and never have time for her.

Just cannot comprehend how people do not understand how it it to feel so tired all the time and in pain because you don't look like you are on the outside.

It really puts me off meeting new people nowadays. Cause I know this is going to cause me unnecessary stress and the story will finish the same way.

Anyone has any thoughts on this? Not asking for any particular advice, just wondering if you had similar experiences.

Thanks

Kami

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Hi,

I can completely relate to that! I've recently just been diagnosed but last year I had an awful bacterial infection and had serve sepsis. I have never been me since, with constant infections tiredness etc. I have no social life at all and can really say hardly any friends no one was there for me part from my family.

I struggle going out even if it for a meal and currently can't balance my days with my energy stores! It's so hard for people to really understand how you feel. I've completely lost parts of my memory and find it hard taking in I formation or even at times forgetting my keys! Thought at times I'm just mentally thinking of these symptoms I guess first step is the acceptance, and not letting it define me and catch me down. I'm working at trying to understand more finding the right balance and hoping to find little things to please me.

My work hours have currently been reduced but will try find some me time on my days off for exercises but as I said findings the right balance. I'm new on this but talking to people in a community where you can relate to one another helps so much! It's open and friendly and this has really helped me get through my bad days.

I hope you can find it useful too x

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It sucks. I have spent weeks in bed at a time. Cannot make any plans because I dont know how im going to feel. Always canceling plans. Im si lonely. If i didnt have my dog i dont know what i would do. Then when i emerge after a flare every one wantx to know how i am. Basically my life sucks most of the time, but you cant tell people that now can you?

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I was having a similar conversation today about being lonely. I can't work & my son is at school all day, he's a teenager so pretty much goes out most evenings & weekends too. I feel like I hardly ever see another human. I hardly ever go out in the daylight which isn't good for you either. Having a shower each day is a major achievement :(

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If you aren't getting much day light you could be lacking in Vit D and that could be making things worse.

When I was diagnosed with ME the Dr advised for a loading dose of Vit D followed by regular supplementation.

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I definitely have. I've had ME 9 years and all my friends dwindled away. I had one left & thought she was a true friend but I couldn't walk down the aisle as her bridesmaid (am bedbound) and she showed her true beliefs in her reaction. I try to make new friends but they get sick of it too. It is a very lonely condition but I have a dog & just try to enjoy my own company

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Thank you all for your posts. I am sorry you have to go through similar situation. I do not understand how cruel people can be :( I enjoy my animals company as well. I hope you are keeping warm today and feeling well. Lots of hugs

Kami

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