...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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SEID/CFS Loneliness – Don’t Get Left Out

7/7/2015

5 Comments

 
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I recently missed out on a family gathering due to miscommunication and was feeling left out.  It brought back some of the loneliness I used to feel due to isolation and incapacity when I was struggling with SEID/CFS.  My energy levels then were severely limited and I had to be so careful about what I could handle without a setback.  In the beginning, it really ate at me.  It only served to put an exclamation point on all that I had to give up due to SEID/CFS.

I allowed it to bother me for an unhealthy period of time.  And loneliness can beget more loneliness and feeling sorry for yourself.  It can turn into a dark hole.  Admittedly, I did some time there.  It did not serve me well.

Eventually I realized that I had not been communicating clearly about how much I wanted to participate and how much I could handle.  I was making a lot of assumptions about what others meant when they said something and about what they were thinking.  A critical mistake that healthy people make every day.  So I started to let my family and friends know that I missed spending time with them.  And when there was a gathering I was careful to communicate how or if I could participate.  Escorted cameo appearances started to become the norm.  Sometimes I would save up my energy for a few days just to be there.  The smiles, hugs and well wishes were uplifting and a balm to my isolation.

So if you’re feeling left out, up your communication game.  How are you managing your ability to visit with family and friends?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha


5 Comments
Andrea link
7/7/2015 10:33:56 am

This is such a painful part of CFS, thanks for addressing it Martha. There are times that I decide to risk some payback for the sake of spending time with friends rather than sitting at home trying to get better, but not nurturing my human need for social interaction. Last weekend I made a trip out of my town to see a long time friend. I am still suffering a bit of payback but am so glad I went. I had decided to rest the day before, but another friend asked me to go out with her shopping and so I did because the fun we had was so needed for my mental and emotional well-being. Before entering into this current relapse, I was a walker....two hours a day. Two of my close friends have just started a walking group with around 10 others and have invited me to join. However, I am devastated to think I am not quite up to it even though I used to be able to walk all the time and was always enjoying the sense of freedom and fresh air and endorphins released through exercise. I have explained to them my health isn't up to it yet but please can they keep me in the know. I am battling feelings of huge frustration that this would be such a needed way for me to connect with others and something I love to do and yet I am unable to join them. I also have found it hard that my husband sees my disappointment, and suggests I should just 'go along anyway' and 'you'll probably be fine'. I find that quite insulting as once again, It's someone else not believing I know and am fully aware of my limitations and know that this is something I simply cannot do for now. I find some of my friends very understanding about my limitations, whilst others do not understand and I end up making excuses to them why I can't do things which I really don't like to do! It would be nice to be able to be fully honest, but some people just don't make that possible.

Reply
Martha
7/7/2015 01:31:55 pm

Andrea, your frustration level comes through loud and painful. We've all experienced the sometimes heart breaking requirement to balance energy with activity. And having some people around you who don't get it, can be disappointing as well as insulting. SEID/CFS is a cruel disease. One suggestion for the walking group - you might consider asking some of them to meet you for coffee or lunch after the walk. That way you get some social time without the energy draining physical activity. Hang in there. Everyone here is battling the same frustrations with isolation. Thanks Andrea!

Reply
Andrea link
7/7/2015 02:17:12 pm

Martha, thank you so much for your input. Your suggestion of possible coffee/lunch after the walk is such a good one that I am going to contact those friends now and ask. Thanks so much for helping me think outside the square....I feel better already!

Julie
7/7/2015 07:22:50 pm

SO true! I was such a social butterfly and walked and attended gym on a regular basis.l am now able to walk and socialise more and appreciate these occasions so much! Hang in there,patience is the key😛

Reply
Martha
7/8/2015 01:52:40 am

Yes, patience. I think it tests us to our inner core. If we can recover with restraint, the rewards are great. Thanks Julie!

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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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