tag:blogger.com,1999:blog-253128480522720290.post7674781933533737033..comments2019-09-20T00:30:10.218+01:00Comments on Cheering From The Sidelines: Is it bravery if you don't have a choice? (Or: Kudos to carers)Rachelhttp://www.blogger.com/profile/04378736569212376728noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-253128480522720290.post-157093611123052702014-08-19T00:12:12.346+01:002014-08-19T00:12:12.346+01:00Thank you all for your comments and I'm REALLY...Thank you all for your comments and I'm REALLY sorry about the length of time it's taken me to reply. I haven't been functioning too well lately!<br /><br />Tink: I'm sorry about the effect things are having on your husband. Please don't feel guilty over the virus transmission or over the impact of your situation on his health. None of this is your fault or your choice. If your roles were reversed, how would you feel about him feeling guilty about the impact of you being his carer? Be kind to yourself! Be as kind to yourself as you would be to him if he was the one with severe ME and you were his carer.<br /><br />I'm so glad your husband got such good advice from his therapist. It sounds like he has a good plan in place.<br /><br />A few weeks ago I came across this closed Facebook group for partners, parents and carers of people with ME, and I've been saving the details until I could manage to post it here for you: https://www.facebook.com/groups/154794557914131 - I don't know what the group is like as I am not a member, but it may be of interest to your husband. Also most online support groups for people with ME are also open to carers, so one or both of you may find help, comfort and support there. I am a member of several such groups and they have really helped me.<br /><br />A word of warning about any support groups, especially online ones: it's easy to fall into a trap of feeling too safe. Not everyone in these groups is who they claim to be, and there are sadly people who deliberately set out to exploit the vulnerabilities of people in those groups, including carers. Don't let that put you off joining! Like I said, I have found these groups extremely helpful, however just be a bit cautious and don't share too much personal info such as contact details etc.<br /><br />I really hope things start to improve for you both in some way soon. Best wishes :-) <br /><br /><br />Val and Anon: thank you both for commenting and especially for offering suggestions to Tink; I can't express how much it blessed me to see your comments, especially as I was unable to reply myself for so long. I'm so glad, Val, that you found online patient support groups so helpful to you as a carer. Best wishes to you both :-) Rachelhttps://www.blogger.com/profile/04378736569212376728noreply@blogger.comtag:blogger.com,1999:blog-253128480522720290.post-59681948384089009052014-07-12T02:04:52.687+01:002014-07-12T02:04:52.687+01:00There is a Facebook support group:
Spouses, Family...There is a Facebook support group:<br />Spouses, Family and Friends of Lyme Patients.<br />Perhaps there is a support group related to ME caregivers.<br /><br />I wish I had found a local group - not just a support group on Facebook, but perhaps your husband can where you live. Probably a support group is valuable in person as long as it is related to care-giving for chronic diseases. It probably doesn't matter too much what the illness is.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-253128480522720290.post-63327533133966647762014-07-08T01:44:56.695+01:002014-07-08T01:44:56.695+01:00This is a lovely post! Thank you so much!
Tink, ...This is a lovely post! Thank you so much!<br /><br />Tink, during the years I was caring for my daughter, I didn't find a carer support group, but "talking" with patients online was really, really, really helpful to me. So many people took time to encourage me, answer questions and teach me about the disease, give me the patients' perspective, keep me company, and otherwise just "be there" for me - I couldn't have gotten through it without them. And, of course, it was so wonderful that I didn't have to explain anything, didn't have to deal with misconceptions or "helpful" "have you tried..." suggestions and so on. Perhaps your dear hubby might similarly benefit?<br /><br />ValAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-253128480522720290.post-102550326254058512014-07-07T08:59:32.754+01:002014-07-07T08:59:32.754+01:00My husband is my caregiver. I have severe ME. Like...My husband is my caregiver. I have severe ME. Like you I told him to leave and make a life for himself. He flat out refused and takes his wedding vows very serious. He asked me if it was the other way around, would I leave? No of course not! Still it is not how we envisioned our life together.<br /><br />He is so lucky that he can work from him or go to the office if he wants to get away for a while. His job caused him some stress lately, he moved into a new position that did not feel good. On top of that he started to feel lousy. My doctor ran the most important me/CFS lab test and it showed I infected him with some of my viral infections. Dr deMeirleir did some research about this subject and his conclusion was that yes it is transmit table between family members.<br />We alway knew that was a risk.<br /><br />Than a few weeks ago he started to have chest pains, not good! I was worried sick. I already fell guilty over the transmission. All cardiac test showed his heart and arteries are perfectly fine but he was diagnosed with a burnout. He saw a therapist to get some insight on how better handle these life work situations. One thing she suggested was taking up his sabbatical of 8 weeks and another thing is finding a support group for caregivers.<br />We are immigrants, here since 2006 and because me being housebound we do not have a large social group that we hang out with or who are friends.<br /><br />He is going to join some sports groups and do some volunteer work for humanitas to get to know some people but he would really like an online group for caregivers where he could find support and recognition.<br /><br />Does anyone knows of such group?Tinkhttps://www.blogger.com/profile/16951231576228161688noreply@blogger.comtag:blogger.com,1999:blog-253128480522720290.post-36389188016524610522014-06-21T23:22:36.692+01:002014-06-21T23:22:36.692+01:00Thank you for your comment :-) I just wish there ...Thank you for your comment :-) I just wish there was a way of properly giving them the recognition they deserve! xxRachelhttps://www.blogger.com/profile/04378736569212376728noreply@blogger.comtag:blogger.com,1999:blog-253128480522720290.post-38766651878449190372014-06-11T02:52:21.781+01:002014-06-11T02:52:21.781+01:00What a great post! And so true. Thank you for givi...What a great post! And so true. Thank you for giving some well deserved recognition to the hard working carers out there!Brookehttps://www.blogger.com/profile/12563910719573496568noreply@blogger.com