I am tired of reading about isolated CFS'ers who have fallen through the net of family and friends. I am among them. WHEN will people stop with their incredulous looks of "What is wrong with you?" My sophomore roommate lives in Santa Cruz. A 20 year friendship has dwindled away. I cannot drive down there anymore. I am now on disability-I was actually able to hold a part-time job when I had reliable emotional support. When I told this friend I was on disability, she said that she had known someone with CFS, but they "had" to work.
So I am wondering if their are others who would be interested in forming a CFS co-housing community. There are others for normal people. There must be a way of pooling our resources so that we can purchase services that would be exorbitant for someone to pay individually. Like physical therapy, a healthy food cook,etc. and no 'blank stares" from your neighbor.
response 1:
Hi Everyone,
I think that would be a good idea if everyone had their own space and could retreat from the group when necessary. It would be helpful to have company but only when you are up to it. I have often thought that I would like a place to go at my low periods to be taken care of where there are other people like me, even for a week or two. I don't need a co-housing situation at this point in my life, but it is something worth considering.
Rachel, you might want to pick up that recent book How To Be Sick. It addresses the lost family and friends that we all experience. It helps to know that you are not alone in this.
Why was the subject the Montoya Template? If anyone has something new from Dr. Montoya, I'd appreciate having it forwarded to me and everyone.
For some good news, after a relapse of 7 months of being bedridden and then housebound and then able to do a little bit more slowly, I finally feel I've recovered to my base-line illness level. This means I can do some stuff and go out maybe a few times a week. It feels so good to be back to my normal abnormal. And I've learned something from this.
For years my husband has told me that he couldn't be sick with me and I agreed. He's a doer and he couldn't sit around with me all of the time. But only with this relapse, did it occur to me that I can't be well with him either.
So I've stopped trying to be able to go places with him when I don't want to use my energy for that event and/or I don't have the energy. I skipped the awards dinner Saturday night that he had to go to since he's a city council member because I didn't want to use my energy for that. And then on Sunday we were able to do things together that I wanted to do. It was a lovely productive day and we saw 2 rainbows after the rain stopped.
This change really started when I stopped trying to control him to meet my needs for attention and company. I told him he could do whatever he wanted to do and I would stop trying to control him. He didn't believe me, of course. When he decided he wanted to run for council, we discussed it and I said I didn't want him to but that I wouldn't veto it. So he ran and won with my help. He's a lot more busy but is happier now. And now it's up to me to take responsibility for creating my own life whatever I can make of it. And we are better together and happier in our marriage as well. He's there for me in a way I have never felt before.
I've been sick with CFS for 25 years this coming summer. I'm a slow learner. But I'm learning to put myself first now to create my best life. I know I'll still make mistakes in deciding what I can and cannot do but now it will be based more on what I want to do than on what others want me to do or what I would do if I were well. I feel pretty good about this...and myself.
Thanks for listening, Esther
response 2:
I know there was a project in North Carolina at one point regarding co-housing for people with ME/CFS and Patrick H. (who was on this list but appears to have fallen off during its many reitrations) actually started a co-housing community in Texas with his mom's help for young adults with ME/CFS and disabilities. I haven't looked it co-housing opps as it doesn't fit my situation but some co-housing groups are less judgemental -- maybe you can find one for people with disabilities of different types if not ME/CFS?
For everyone else, Esther's points are well taken. As someone who has worked with caregivers in the past, I know how stressful that it can be so one of the things I try to do for my family is to encourage them to keep pursuing their interests as much as possible and not to worry/ feel guilty/ etc. if I can't participate. They know I will try to participate when I can or we'll find activities that I can do. Fortunately, there is little pressure from them or my healthy friends to participate in things that I can't.
On a related topic, ME/CFS or not, I've found knowing about my own and family/ friends' personality types helps with communication. For example, extroverts or introverts have different requirements for good relationship. The other link talks about "The 5 Love Languages," which is how differnet people give or receive love. Although it is geared towards married couples, I find the ideas interesting in general. There's an old saying about how just because someone doesn't love you in the way you want doesn't mean they aren't loving you as much as they can.
http://fpd.gsfc.nasa.gov/diversity/CommStylesIntroExtro.pdf
http://www.5lovelanguages.com/learn-the-languages/the-five-love-languages/
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