tag:blogger.com,1999:blog-6181780691238814823.comments2023-08-28T23:22:07.966+10:00Living with Bob (Dysautonomia)Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger4668125tag:blogger.com,1999:blog-6181780691238814823.post-23756352567568029132019-08-29T15:17:27.240+10:002019-08-29T15:17:27.240+10:00It's a very lonely place when people don't...It's a very lonely place when people don't believe your sick because you look well. That's not the worst part tho. It's that we're feel terrible all the time and the only time people hear us complain is when it gets really bad and we stay acting what they consider strange, when all we really want to do is rest so we can catch or breath. I have started getting angry when people that know I have this ask why I'm so tired. "Because my heart is in a race all the time! I'm tired!" They just will never understand. Anonymoushttps://www.blogger.com/profile/08825741561098835302noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-2683853584960902602019-08-02T03:26:40.933+10:002019-08-02T03:26:40.933+10:00It's such a complex problem. I was first diagn...It's such a complex problem. I was first diagnosed about 20 years ago with some sort of "autonomic nervous system disorder disease" and, now all of these years later, I feel not a lot has progressed. I fit in no bucket, do not meet the criteria for any connective tissue disorders, POTS, OH neurocardiogenic syncope, etc. I am an outlier. A diagnostic dilemma. My tilt table tests revealed that my blood pressure is normal in my limbs, yet still fainting; however, when a transcranial doppler was added to a new tilt table they saw that my blood pressure drops significantly in my brain. So there's that. Treated the same way - compression socks, salt... I just wish I knew WHY. WHY is the ans not behaving properly? What happened? Whatever it was - started between ages 10-12...but what was it? Shebalicioushttps://www.blogger.com/profile/04214657647402465465noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-84342926337152885342019-03-05T12:54:29.519+11:002019-03-05T12:54:29.519+11:00I used to feel that anxiety too but over time and ...I used to feel that anxiety too but over time and with the support of friends in the disability and illness community and my family I learnt to love my aides and the freedom they provide me. Give yourself time to adjust and know that you're doing what's right for you. The walking stick was a gift from a brand in the UK https://www.neo-walk.com/ they have some fabulous options. Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-79281193776881578532019-03-05T12:51:42.932+11:002019-03-05T12:51:42.932+11:00Thanks Corrine. I feel like such a slack blogger b...Thanks Corrine. I feel like such a slack blogger but Summer and life have sucked so I have been concentrating on survival and focusing on my body's needs and finding the joy in life. I really appreciate you checking in. As you say after all this time you know how this Dysautonomia malarky goes and it's nice to have someone check in to see how you're going. Thank You. MichelleMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-62557783165960522132019-03-05T12:49:13.817+11:002019-03-05T12:49:13.817+11:00It's a real catch 22. I find I dress for mysel...It's a real catch 22. I find I dress for myself and how it makes me feel rather than anyone else but I have cultivated a small group of doctors who get me and understand that a nice dress and lippy doesn't negate my illness or pain. But it's been tough going to find them and I still encounter crappy doctors who either do the disbelief or hysterical female lines you describe. I have learnt to stand up for myself and be assertive over the years, plus my husband is a great advocate and can explain things I can't (not that it should take him confirming what I describe to my doctors for them to believe me). Medicine struggles to work with those who don't meet their expectations of illness. I do hope you can find a doctor who treats you with the respect you deserve. (and sorry for the huge delay in responding I have been away from the blog for months and only now wading back through comments)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-85768996236412357572019-03-05T12:43:03.851+11:002019-03-05T12:43:03.851+11:00I've had a close personal love affair with dry...I've had a close personal love affair with dry shampoo this past year. Washing my hair so exhausting and I can't really do it properly anymore, but at least that dry shampoo stuff takes the worst of the oil and mank out. I'm not a huge hat person so I tend to put my hair up when it's really bad or I have at times gone into my hairdresser just for a wash. I'm glad I can help make you smile we all need something that can pick us up on those dark days xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-26033409604762479482019-03-05T12:39:38.687+11:002019-03-05T12:39:38.687+11:00Thanks, Em. The light my son put in my walking sti...Thanks, Em. The light my son put in my walking stick has been fabulous.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-54027933460411374692019-03-05T12:38:55.424+11:002019-03-05T12:38:55.424+11:00Ah yes the ice vest. That has been my close friend...Ah yes the ice vest. That has been my close friend this Summer. We are currently surrounded by bushfires and in a heatwave. It feels like Summer is refusing to end.<br /><br />I've found this Summer really tough and I've been ruthless in how I spend my limited energy. I am getting better at putting my self first for a change which has been a huge leap, well plus my body just saying Hell No! <br /><br />I am hoping that when Autumn finally turns up the words will flow easier.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-66294349608258688502019-03-03T10:16:47.472+11:002019-03-03T10:16:47.472+11:00That photo is amazing. Your writing is gorgeous.
T...That photo is amazing. Your writing is gorgeous.<br />Thank you for sharing both.Emnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-31224352580988751492019-03-03T01:02:50.952+11:002019-03-03T01:02:50.952+11:00Adrenaline and insomnia - as Sinatra would croone ...Adrenaline and insomnia - as Sinatra would croone out- ain't that a kick in the head...<br /><br />What a beast dysautonomia is <br /><br />Been wondering how you have been doing during the heat wave<br /><br />It is incredible how dysautonomia doesn't let you stand up when you want to and doesn't let you sleep when you need to. Coming off a week of nothing helping low blood pressure--- usually I have 45 minutes of being upright and then the numbers crash<br /><br />Hope you cool off soon. I got a hunters vest and stick it full of ice packs. It is great ice packs room all around my torso. They had a hot pink one at bass pro- oh the things that bring joy and happiness. Ice packs and compression garments...To think there was a time when I was told to tone down the wardrobe at work. I wonder if ice packs and compression pants would cut it...<br /><br />Well great hearing from you,<br /><br />You reach around the globe- who knew eh- Canada is pretty cool<br /><br />Hope your brain lets you turn off at night<br /><br /><br />CorrineCorrinehttps://www.blogger.com/profile/17592172977909860639noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-9107392860842532502019-02-20T12:57:58.787+11:002019-02-20T12:57:58.787+11:00This comment has been removed by a blog administrator.Linda Shermanhttp://doffanddonnerdealer.comnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-56619255129278762522019-02-16T09:32:45.068+11:002019-02-16T09:32:45.068+11:00Hi there, are you able to update the link to Bauer...Hi there, are you able to update the link to Bauerfeind Australia to point to our new online store. motionislife.com.au<br /><br />We are the official Australian Bauerfeind distributors/shop.Anonymoushttps://www.blogger.com/profile/01941877706205015530noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-72301525525941209132018-12-31T12:29:48.329+11:002018-12-31T12:29:48.329+11:00A friend sent me a link to this because I feel so ...A friend sent me a link to this because I feel so strange about buying a cane. (Mine is black with a bunch of different colored dots on it, and it folds up for when I don't need it, and even though I think it's quite pretty I'm kind of anxious about using it.) Thanks for writing--I can't really hide my disability with or without a cane, so I'm trying, and not really always succeeding, to make it fashion. I love your lucite cane--where did you get it?The Student-turned-Doctorhttps://www.blogger.com/profile/08506070687255989103noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-39262435808646850922018-12-23T19:31:51.913+11:002018-12-23T19:31:51.913+11:00Thanks for your honest review. xThanks for your honest review. xAnonymoushttps://www.blogger.com/profile/03596142995497292286noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-88030301940057293722018-12-20T20:40:51.845+11:002018-12-20T20:40:51.845+11:00I feel your pain/heat. There really should be a su...I feel your pain/heat. There really should be a subsidy available for people who live with conditions like these. xAnonymoushttps://www.blogger.com/profile/03596142995497292286noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-31795507842869064212018-11-17T22:34:42.199+11:002018-11-17T22:34:42.199+11:00Hello
Just check in to see how your dysautonomia ...Hello<br /><br />Just check in to see how your dysautonomia world is going. Living with dysautonomia for 15 years has so many different seasons.<br /><br />So even when you are not posting and taking a break from your blog., I am thinking of you. Hoping that things are going well- even stable. 15 years of this teaches me to reach out encourage others- because it is a hard battle on the symptomatic days- ecstatic happiness on the functional days. Eventually you weather through so many days, so many battles.<br /> - just seeing the blue sky in the morning, having a dog at your feet just some how just keeps you waiting and hoping to feel contentment serenity and dysautonomia no matter the day<br /><br />Late night blogging when sleep is impossible <br /><br /><br />Hope you are doing good- from a big fan in Canada<br /><br /><br />CorrineCorrinehttps://www.blogger.com/profile/17592172977909860639noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-48433261923283167912018-10-25T13:11:43.546+11:002018-10-25T13:11:43.546+11:00Hi Michele
I really enjoy reading your posts. I a...Hi Michele<br /><br />I really enjoy reading your posts. I also look regularly at your instagram too. I love that you dress up so beautifully. I know it has its costs physically, but the benefits are awesome. You look fab. I’m endeavouring to dress most days. It’s a struggle to get out of my pjs. I’ve got POTS, overactive mast cells, and one month ago was diagnosed with Graves’ disease but have had to stop treatment for it as the medication has inflamed my liver. Sleepless nights are a part of Graves’ disease and I am completely sleep deprived. As a consequence of sleep deprivation my memory is shot and my conversation is mostly word salad. I’m trying to get to the point here....Anyway, does dressing up and attending your medical appointments help you to be taken seriously by doctors? I’m 62 and I find most doctors just don’t take me seriously. If I’m contained and looking in control they respond as if I’m not sick/in pain. If I’m emotional then I’m treated as though I’m over reacting etc...and hence, not sick/in pain. I’ve decided to try dressing up generally and also when going to the doctors because I need to be treated respectfully, in the surgery and in life, and I hope this will help. <br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-39802425583096680772018-09-20T10:41:46.154+10:002018-09-20T10:41:46.154+10:00Thanks so much for writing this. I can relate so m...Thanks so much for writing this. I can relate so much to the scab re-opening all over again. I'm finding it so difficult to try out different treatments, try to hold back my hope, get hopeful and excited anyway, then disappointed, hopeful, disappointed over and over. Recently I tried out a new pain medication and felt what it feels like to not be in so much pain and cried with happiness. I'm not sure if I can continue taking it because of side effects and last night I felt what it's like to not be on it, and cried so hard at feeling the pain all over again. A week on this med feels like such a tease of a life which is more free & functional and now the scabs open again. Reading this is really helpful. :) <br />xox Anonymoushttps://www.blogger.com/profile/12942825657070619064noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-89451225678383117132018-09-18T03:32:58.543+10:002018-09-18T03:32:58.543+10:00You're amazing Michelle and you look so glamor...You're amazing Michelle and you look so glamorous! I'm always hiding my unwashed hair under hats when I do get out. I love your red powerchair - I have a rollator that colour and my manual wheelchair is blue. Your blog really brings a smile to my face on the darkest days. Hugs from the UK xxxL Bryannoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-67643232705421798132018-08-28T06:37:14.583+10:002018-08-28T06:37:14.583+10:00I'm so glad to have found this blog. I was loo...I'm so glad to have found this blog. I was looking for something to help explain to friends and family why talking on the phone is so hard. Thank you a million. And thanks for 'Bob'. I've used 'Dys'. Eliskahttps://www.blogger.com/profile/01536444925492920202noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-83812260264110869962018-08-13T11:53:19.723+10:002018-08-13T11:53:19.723+10:00Thanks for your good works and sense of humor. Ne...Thanks for your good works and sense of humor. New to the world of thigh highs, and want them in tiedye cool. Very hard to figure it in brightlife. Thanks again. Anonymoushttps://www.blogger.com/profile/00950450409356066699noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-75108151144019708352018-08-02T16:33:03.047+10:002018-08-02T16:33:03.047+10:00Baffles me too. Zappos and ABL Denim do reasonable...Baffles me too. Zappos and ABL Denim do reasonable adaptive jeans (not sure if they're the ones you looked at) but again exchange rates and postage they're US based can make them way too expensive. I saw IZ Adaptive (Canadian) are reopening and doing basics. They always used to make quite nice clothes. But the lack of clothing is ridiculous. Especially in adult ranges. Target US have had adaptive clothes for quite a while, and I did see Target here has started (with kids at this point) and sensory friendly t-shirts hopefully that's and indicator that they are moving towards inclusive clothing. <br />Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-72148319665864664102018-08-02T16:27:28.353+10:002018-08-02T16:27:28.353+10:00Hi Unknown. A lot of patients with CFS also have a...Hi Unknown. A lot of patients with CFS also have autonomic components and POTS in particular is a really common comorbidity. So he may have both or some combination of factors. If you want to investigate it as a possibility it's really important to find an autonomic specialist which can be tricky depending on where you live. Unfortunately many doctors aren't overly familiar with autonomic conditions. Depending on where you live Dysautonomia International has a listing of some specialist, mostly US based. If you need Australian or NZ info, there is a FB group with a specialist listing, UK either STARS.uk.org or POTS UK are good starting points. Hope that helps and good luck with your son. Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-20523607306396848862018-07-25T14:51:13.153+10:002018-07-25T14:51:13.153+10:00Hi,
I was referred to your blog by a disability se...Hi,<br />I was referred to your blog by a disability services newsletter. I am so glad I checked it out because I am now questioning my son's diagnosis with chronic fatigue may really be 'Bob'.MandiWhttps://www.blogger.com/profile/04148063136237071855noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-89341034041187819542018-07-18T23:16:01.358+10:002018-07-18T23:16:01.358+10:00I know that this post was written quite some time ...I know that this post was written quite some time ago, but it is one that I return to time and again. It is a reminder that I don't have beat myself up for being ill. That the universe wasn't punishing me when it decided that I should carry this weight. And that all my well-meaning friends who tell me that I will be cured when I try this diet or this magic pill are telling me this because they have been taught that illness is something you have to constantly fight, that it is somehow a weakness we must avoid at all costs. As though any of us have that sort of control over our lives. I wish I didn't have dysautonomia. I think it sucks, quite frankly, but I'll be damned if that means I have to embrace the idea that my life is now less valuable, that being ill means I automatically have less to contribute to society. Like you, I call bullshit.Danielle H.noreply@blogger.com