tag:blogger.com,1999:blog-6181780691238814823.post8493218225908702564..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Sick FatigueMichelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-6181780691238814823.post-70622106318957153642015-04-30T00:48:25.053+10:002015-04-30T00:48:25.053+10:00Tears come to my eyes as I read this. You took the...Tears come to my eyes as I read this. You took the words right out of my mouth. I'm glad you got to go to the beach. That's my 'happy place' and I wish I could go back there. I'm glad you have your husband. It's hard when we have no one. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-52831763114469347022015-03-06T14:37:46.132+11:002015-03-06T14:37:46.132+11:00I love that Mr Grumpy gets you and your needs. He ...I love that Mr Grumpy gets you and your needs. He is a special person. The beach is especially soothing to my raw nerves, and even heading "bush" to just breathe helps me. I am learning to be present as much as possible when those moments present themselves, savouring the smells, the sounds, etc. I hope your next beach trip is soon.Anonymoushttps://www.blogger.com/profile/11920864212300040383noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-16893526176015182582015-03-04T14:04:01.759+11:002015-03-04T14:04:01.759+11:00I so look forward to your posts Michelle. It is a ...I so look forward to your posts Michelle. It is a comfort to hear the words of a language I am very familiar with. I hope the knowledge that you are heard is a comfort to you.<br />After 3 decades with severe M.E (S.E.I.D) I am familiar with the split that divides the self when in a never ending pas de deux with chronic debilitating illness. I do have days though that if I just stay in bed I can be without the distress you experience. My disautonamia only occurs when I am in relapse. You have my heart felt empathy for what you endure endlessly. I live a life rich with experience as you do and know how to take pleasure in the small things. There are also times when if offered an off switch would give it very serious consideration as I feel a future based on survival and endless repetition of constraint is no future at all. So like you I take each day, each moment at a time and do my best with it. I am pleased when I have courage and have compassion for myself when I don't and some how life goes on.<br />Unlike you I have withdrawn from interaction with the medical profession. It was very difficult to accept there was no support and care to be had but only rejection and disbelief. When my system decided to close down and not even let me swallow I was dismissed through their ignorance of disphagia though I did eventually end up hospitalized.<br />Perhaps it is the view of our civilization from this perspective that causes the greatest existential suffering. I am sure our selves would heal more if we had real houses of healing to crawl to when it gets too much. As they are but a wish we must do what we do and support each other. Waving from Tasmania ღღღWillow Ravenswoodhttps://www.blogger.com/profile/10354084143098915969noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-75525529737966970372015-03-04T11:27:35.253+11:002015-03-04T11:27:35.253+11:00Thank you RubyRouxBijou I'm sorry you can rela...Thank you RubyRouxBijou I'm sorry you can relate so well but glad my words can help a little. It's a hard road to travel at times. You can be stoic to a point but sometimes it all gets too much. The beach, the bush, even just sitting out back and looking up at the sky have always been a cleanser and soother for me. It'll be okay, because none of us in this alone. There's always strength to be found in reading the words of another who simply gets it. Hoping for some relief for you too xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-84025066437153936482015-03-04T11:24:22.083+11:002015-03-04T11:24:22.083+11:00Thanks lethargicsmiles. Writing is like a pressure...Thanks lethargicsmiles. Writing is like a pressure relief valve for me. Putting the words down helps soothe the soul xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-79114214302896101812015-03-03T19:04:01.902+11:002015-03-03T19:04:01.902+11:00There is such beauty in your writing. And a sadnes...There is such beauty in your writing. And a sadness that I too am well acquainted with, that begins in pain, frustration and ends in tears. I'm glad you found some peace on the beach that day and that you can keep finding a way to find you when it gets too much. I am so grateful for your blog. Many a middle of the night, teary I can't sleep, I can't do dysautonomia/EhlerDanlosSyndrome/any of this nonsense any more has been lifted when I read your stories and it reminds me I'll be ok. I hope your symptoms stop evolving and start behaving so that you can catch a break with medication or a cure, that would be good. Wishing you all the wellness and sending bosies your way. XxxxxxRubyRouxBijouhttps://www.blogger.com/profile/14309828976957753424noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-6515672179962631092015-03-03T15:36:37.642+11:002015-03-03T15:36:37.642+11:00This post was perfect. There wasn't a line I c...This post was perfect. There wasn't a line I couldn't relate to. Thanks for siphoning off the energy to write it!Anonymousnoreply@blogger.com