tag:blogger.com,1999:blog-6659981920998562195.post8236133927302747152..comments2024-02-19T11:57:08.864+00:00Comments on Super Pooped: Adventures for the Exhausted: What no one tells you about being HouseboundHannah Radenkovahttp://www.blogger.com/profile/17182949623983124195noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-6659981920998562195.post-51520534744279548332020-01-31T19:09:35.413+00:002020-01-31T19:09:35.413+00:00You said it, sister. I have hEDS, but that didn...You said it, sister. I have hEDS, but that didn't keep me housebound. I struggled through. Then, I was in a very serious rear-end collision, hit at 45 mph (I don't know kph without looking at my speedometer) at a dead stop. I was injured, but I'm alive thanks to my seat belt and EDS. I "bent" with the accident. Anyway, the accident's sequelae forced me to retire. When I was just recuperating, I was too busy hurting to care. Now, I feel it. I feel the lack of time placement affects me a lot. I get out at least once a week and it helps.<br />Cherylhttps://www.blogger.com/profile/04299155484748542877noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-38358590286931329912020-01-31T07:42:36.596+00:002020-01-31T07:42:36.596+00:00Great blog - thank you. It has made me feel truly ...Great blog - thank you. It has made me feel truly grateful. My ME diagnosis is very recent - 27th December. But it took 2 years to get there. I'm only housebound on really bad days, and have only been bedbound twice, for a week both times. I'm lucky, really lucky. I have been shocked how little support and advice is available from medical professionals. I quickly realised the best advice comes from people with ME. That's how I found out about pacing. This is really early days for me, but I'm already managing much better. I have had to change the way I live my life, but that's OK because it means I CAN still live it. It is heartbreaking to see how many of you are trapped in your own homes. You are all brave and magnificent. I am humbled. JPMhttps://www.blogger.com/profile/10118416183757907893noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-76760888056302854932020-01-30T08:00:33.763+00:002020-01-30T08:00:33.763+00:00Perfectly written, and a reflection of much of my ...Perfectly written, and a reflection of much of my life. Thank you for sharing, it helps to know I have kindred spirits out there!Kk6357https://www.blogger.com/profile/06539638483295139429noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-75477795155424382062020-01-29T13:00:40.938+00:002020-01-29T13:00:40.938+00:00"I wish I could stay home all the time!"..."I wish I could stay home all the time!" Really? "Could"? Or "had to"? <br />Do you wish you could stay at home instead of taking that coffee with your friend you didn't see in ages? Stay home rather than see that new favourite actor's movie in the cinema? Rather than attend your child's birthday party/graduation/wedding? Or instead of going to the parade/festival/big event that all your friends and family are going to? Or just being able to nip down to the store for toilet paper or just a chocolate?<br /><br />Do you really wish to stay home instead or having a life? Simirahttps://www.blogger.com/profile/04317823029411117564noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-1356618185435170982020-01-29T02:13:25.489+00:002020-01-29T02:13:25.489+00:00Right there with you - another of those who have n...Right there with you - another of those who have no help, either medical or social/domestic, and are doing this alone. It's an alternative reality, that's for sure. 'Normal' people have NO idea... But, astonishingly, it CAN be done; and, I am very slowly improving. Taking it easy/ being easy on yourself, not judging, listening very very carefully to one's body and brain and not trying to override them, ever, has been the key for me. Love to you and and all in the same (leaky) boat..BanksiaMarginatahttps://www.blogger.com/profile/00612252727980065753noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-61182345638439035102020-01-28T21:54:29.206+00:002020-01-28T21:54:29.206+00:00Very well put. I have been bedbound in the past an...Very well put. I have been bedbound in the past and housebound for a couple of stretches. Now I seem normal until I am confronted with something on my list of can't-do's. I have limits and things I must avoid which must look arbitrary and odd. Then I struggle with shame.<br />Amateurhttps://www.blogger.com/profile/15605981093929310557noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-42417470164307864052020-01-28T18:05:42.926+00:002020-01-28T18:05:42.926+00:00Yup Yup Ben Nevishttps://www.blogger.com/profile/17177615600047883473noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-60115560498546934452020-01-28T16:45:10.432+00:002020-01-28T16:45:10.432+00:00Very well written. I have ME but am only houseboun...Very well written. I have ME but am only housebound on bad days and rest days; I am fortunate to be able to get out for short periods, providing I rest enough before and after. I certainly appreciate the little things far more than I ever did when I was well. Life slows down, time loses meaning as you say but I'm thankful it hasn't made me completely house bound yet.<br /><br />Wishing you more of those moments with the grass under your feet. Flip Martianhttps://www.blogger.com/profile/14067481528668200752noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-86873959197790310452020-01-28T15:32:43.904+00:002020-01-28T15:32:43.904+00:00Wonderfully written! I am not housebound now but h...Wonderfully written! I am not housebound now but have been for extended periods over the last couple of decades or so. You have my sympathy and admiration. <br />JodyJodyhttps://www.blogger.com/profile/03933332320027960472noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-39139849076285176632020-01-28T14:40:04.480+00:002020-01-28T14:40:04.480+00:00I sympathise.
I sympathise. <br />Hochiwichhttps://www.blogger.com/profile/02439401945253632251noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-66574622699239961522020-01-28T14:39:37.265+00:002020-01-28T14:39:37.265+00:00You see parents? You have a helper? Support? You&#...You see parents? You have a helper? Support? You're lucky. I see my daughter 3 or 4 times a year, give or take. Apart from that I see the person who delivers my groceries roughly every ten days. That's it. But yes, if you have to, you can do it. Hochiwichhttps://www.blogger.com/profile/02439401945253632251noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-43503462462879082412020-01-27T22:09:07.420+00:002020-01-27T22:09:07.420+00:00Thank you Hannah, you always manage to nail exactl...Thank you Hannah, you always manage to nail exactly how we feel with CFS, the most misunderstood illness on the planet. To the ladies who commented above, I do hope for all of us some release from the incredible grip of CFS. I no longer look for "cures", but some degree of management that gives us some "frreedom". You mentioned time losing it's meaning, you're right. It's day/night, and sometimes forgetting what day it is. Like living in a parallel universe. Anyway muchos grasios for your terrific efforts with this blog.Clearnethttps://www.blogger.com/profile/11949822497567740461noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-57079763188614066052020-01-27T14:16:23.920+00:002020-01-27T14:16:23.920+00:00Great blog from another #housebound n almost #bedb...Great blog from another #housebound n almost #bedbound 10 yrs n counting Thank you for this xxxSuzhannah03https://www.blogger.com/profile/03229677904495837910noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-67189874353776709992020-01-27T13:44:58.814+00:002020-01-27T13:44:58.814+00:00Well said. I'm mostly housebound and I can nor...Well said. I'm mostly housebound and I can normally see people once a week or fortnight inc my therapist. It makes such a difference to see strangers on the days I go out. I miss train stations too - but only as an able bodied experience, with my sensory issues I really do not like being there now. I miss the experience of being able bodied - the freedom, the way I couldn't feel my limits. <br /><br />I'm watching a stand up comedy right now and it's making me tired seeing the comedian walking around on stage. I can't remember what it's like to not feel tired from being upright. <br /><br />I don't have a family or carers to look after me, I'm doing this on my own with occasional arranged help from friends as needed. Been trying to get a PA for a year but not well enough to organise help to get it plus conduct interviews. <br /><br />Glad you have that support network :) I wish that you were able to see friends more. pinkcoconuthttps://www.blogger.com/profile/17615909809427776676noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-69820662292130229732020-01-26T22:25:42.410+00:002020-01-26T22:25:42.410+00:00Ditto....Ditto....Anonymoushttps://www.blogger.com/profile/13605192667819027298noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-5507899526742623132020-01-26T22:04:00.296+00:002020-01-26T22:04:00.296+00:00No more words needed.....5 years hbound..No more words needed.....5 years hbound..Anonymoushttps://www.blogger.com/profile/13605192667819027298noreply@blogger.comtag:blogger.com,1999:blog-6659981920998562195.post-91336563021111881062020-01-26T17:17:41.316+00:002020-01-26T17:17:41.316+00:00Spot on! I'm sitting here laughing and crying,...Spot on! I'm sitting here laughing and crying, and reading little bits to my husband, and saying, 'Oh yes!' and 'Me too!' ~ especially the excitement of rain on my skin again! Thank you for sharing a life I recognise ~ it's good to feel seen and heard, even if it's only in reflection!Helen Oakshttps://www.blogger.com/profile/16064891978823924616noreply@blogger.com