tag:blogger.com,1999:blog-6181780691238814823.post371794526644962322..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): The complexities of raising awareness for a complex chronic disorder: Dysautonomia.Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-6181780691238814823.post-34017889031038712432014-09-23T13:29:46.098+10:002014-09-23T13:29:46.098+10:00I appreciate your bringing this to light. Yes, the...I appreciate your bringing this to light. Yes, the hope aspect is important, as we definitely don't want fellow sufferers to think that they've been handed a life sentence of despair, but I think that there is a magic ratio to be reached. I don't have dysautonomia that I'm aware of at this time (though I'm still in that hazy "we're still trying to figure out what the heck is going on with your body" phase of things), but I do have a working diagnosis of fibromyalgia and slowly but surely other things as well. What has raised awareness the most in my social circles is the honesty on my part of what life is like with my symptoms. When all people see regarding fibromyalgia is a Lyrica commercial that plays sappy, uplifting music over muted, slow motion daily activities in sunshine soaked settings then they believe that it's a simple matter to overcoming an inconvenient obstacle, that's all. They don't know that those medications don't work for a majority of patients, and that when they DO work it's a fairly low increase in functioning. It's NOT a panacea, unlike the way it is presented.<br /><br />Knowing and realizing the horror of the situation is what makes people realize that this is a genuine problem. Celebrating the victories brings the hope that it's not a curse to live in misery forever, and there ARE people out there who survive, who go into remission, who maintain happy, productive, low symptom lives and it HAPPENS. It does happen. But when that is not happening, what does it look like? Why should we bother to fund research if the happy pill commercials display a reality in which you just have to take a pill to feel better? No, we NEED the raw, ugly reality of the crippling symptoms, and the grief and loss of formerly functioning lives and bodies, and the fear and frustration and utter confusion of trying to find the proper medication and treatments that might help obtain some of that happy-pill-reality. There must be a call to action, an awakening to the reality of the situation, before the hope is presented. What good are the stories of overcoming if it is unknown just how triumphant that victory is?<br /><br />When presenting on the topic of abuse, which I used to advocate for survivors of before my body broke down, we first shock people with the statistics and the horror stories. Let them realize how awful it is, let them see the contrast to their comfort and happiness and health, show them the scope of the problem. THEN the hope can be brought in to maximum effect. *Despite* the harshness of the reality, this miracle took place. That's what motivates people on a personal level, when they can put the face of their daughter or lover or best friend in the place of the sufferer and feel how much they would fight for that person's rights and a future for them.<br /><br />If we're going to make a meaningful impact on the world and really show them how badly awareness and research and progress is needed, then the ugly and painful reality *must* be unmasked first. It's the only way ti dispel complacency and claims of exaggeration and attention seeking.Cassandrahttps://www.blogger.com/profile/12407466438773284596noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-26455483456403878022014-09-19T18:38:01.514+10:002014-09-19T18:38:01.514+10:00No I actually think telling both spectrums is best...No I actually think telling both spectrums is best. I wasn't told a lot about my dysaurinomia except it is a dysfunction automic nervous system. My main body controls have no control. I learned a lot from finding and reading your blog. Without your knowledge I wouldn't know what to expect. Plus the iv therapy works. You can tell if I skip a week. No balance dizziness lethargic.. Etc..You have to point out both with this illness. People need to see the realistic aspect of what we have to deal with. Sadly whoever has it should be scared in some ways. Because our days are battles to survive our bodies not having the ability to function right on any given day. <br /><br />It isn't to scare people it is knowledge of what to expect. Christinehttp://www.clairvoyantlifeadvisorchristine.comnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-58819691353371832832014-09-19T14:43:51.703+10:002014-09-19T14:43:51.703+10:00This is a great article and puts a different kind ...This is a great article and puts a different kind of spin on the dysautonomia awareness Month. Mochajen98https://www.blogger.com/profile/09816464634834053063noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-42631819032611156852014-09-19T12:42:23.231+10:002014-09-19T12:42:23.231+10:00I do like the success stories, but I'm one of ...I do like the success stories, but I'm one of "those" people who has been dealing with this since I was at least 14 years old. I'm now 46 and I still can't get people to understand that I am in fact getting worse. The friend who drove me to another State to see the local specialist for dysautonomia was surprised to see a poster in the exam room stating that next month is Dysautonomia Awareness month. And she also commented that a lot of the symptoms Dr. Karabin was listing off are things that she had experienced. I know my friend wasn't trying to down play what I'm going through, but there is a persistent attitude from the world at large that we're making this stuff up. I wanted to tell her that it's not a contest to see who has the most symptoms, but rather a range of symptoms that those of us with autonomic dysfunction deal with on a greater scale. Yes, some of my sisters passed out when they were pregnant, usually due to anemia, but they don't pass out any more. Yes, I was able to work full time and attend college full time as a 41 year old til I graduated just before I turned 43, but for every day I pushed myself up to or beyond my limits, I paid for it for days. When I told another friend of mine last night what my BP/HR numbers were, she remarked that I "couldn't make that sh*t up" to which I responded, "Of course I can! I'm just doing it for attention" because that's what I am still accused of doing. I was told by my siblings that I have an unreasonable expectation for them to help me crisis to crisis. Well, duh! When I feel good, I can work a full time job and go to college full time. And when I feel awful, it's a crisis and that's when I need help, when I'm in crisis. My siblings have also told me that I'm not getting better because I'm either not following doctor's orders and/or not handling stress appropriately because I'd be getting better otherwise. <br /><br />And for all of that negativity going on, I am a freaking super hero. I am allowed to grieve every time something new and unpleasant relating to my condition crops us because that is a piece of me, a part of my life that is dying or dead. I don't wallow, but I do whine sometimes. And I do it all by myself because I don't have anybody else. Nobody else goes through what I go through. And frankly, it pisses me off that my mother got far more sympathy for her COPD/emphysema than I will ever get with my dysautonomia because my mother smoked like a chimney for years and I DIDN'T DO ANYTHING TO MAKE THIS HAPPEN. Yes, the diabetes is complicating it, but for 31 solid years I have been fainting or presyncopal and the neuropathy issues started long before I was diagnosed with diabetes. <br /><br />I would like to see more education of not just the medical community, but the community at large. It was eye-opening for my friend to witness first hand the chronic tachycardia I deal with. Yesterday, my first reading sitting down was 127/100 hr 114. 2 minutes later standing up was 114/87 hr 120. An hour later sitting up was 110/90 hr 110 and laying down was the winner at 133/112 hr 132. The doctor said, "You're all over the place today and tachycardic the whole time." So, like my other friend said, you can't make this sh*t up and clearly I wasn't making it up because the friend who drove me down to the appointment knew I hadn't been doing wind sprints or walking briskly (with my cane), or anything else aerobic to merit these readings. <br /><br />Suzanne Hemondhttps://www.blogger.com/profile/03323103032487137743noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-67923700640979295472014-09-18T21:36:00.415+10:002014-09-18T21:36:00.415+10:00Sorry about the spelling mistakes in last comment....Sorry about the spelling mistakes in last comment. Brain is moving faster than my fingers!The Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-44312502384392292152014-09-18T21:33:59.486+10:002014-09-18T21:33:59.486+10:00I do think a lot of the problems stem from some of...I do think a lot of the problems stem from some of the Doctors that treat us. They can and do minimalise some of the symptoms. My own gp and consultant cant seem to get their heads around the constant level of fatigue I suffer. Even though if you look up Dysautonomia and EDS without adding the spinal arthritis all the websites mention fatigue. I do feel somewhat ignored when I bring that up.<br /><br />I just wish their was a bit more honesty and the condition was better understood by doctors or who seem to think this is some fancy version of M.E or chronic fatigue syndrome. If they better understood it and it wasn't seen as such a specialist area perhaps we would be given much more honest information.<br /><br />I suppose another problem is that we don't know who will get better, who will have it mildly and who will be chronic and progressive. However patient information should cover all aspects of it so people dont becaome afraid when new symptoms crop up.<br /><br />Its a difficult balance to achieve but the key is honesty.The Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-29260676420666760812014-09-18T17:47:49.534+10:002014-09-18T17:47:49.534+10:00There has to be a middle ground somewhere as it se...There has to be a middle ground somewhere as it seems the more unwell are either not represented or under-represented. I agree you don't want to scare people, but there will be a percentage of new patients who go down the chronic or progressive road and are very much in need of support.<br /><br />I think for me there are so many important issues we face that all impact at a practical level that really need to be addressed. And a positive front can obscure those serious issues. The ones I raised are only a few of the issues that need greater awareness there are a heap more. <br /><br />It's not that we can't be positive but it has to be a balance. And when we are begging for acknowledgement we can't afford to water it down. Maybe it's also that the vast majority of people who follow the blog are my FB page have more complex issues either symptomwise or accesswise so I hear their experiences more. <br />Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-73810236332354512932014-09-18T17:27:55.006+10:002014-09-18T17:27:55.006+10:00I do have a problem with the positive stories that...I do have a problem with the positive stories that are featured in newspapers in the UK, firstly because I get a flooded timeline on social media with well meaning friends telling me about the latest cure. These stories also just show the "lighter" side of the sliding scale of how each persons Dysautonomia affects them. <br /><br />My Dysautonomia is progressing and no one can tell me where it will end up. I know many people who are much more badly affected than I am and consider myself in the middle zone. I am always happy to hear that people have recovered or have found medications that have helped them but when you have exhausted all avenues as I have I am left with a sense of failure. That somehow my own body's lack of response to the same medication is somehow my fault.<br /><br />It is a difficult line to tread on one hand those with only mild symptoms don't want to be scared witless but those of us with more severe problems don't want to feel ignored. The best way forward is to include as many people as possible when publicising Dysautonomia as for each it is an individual journey.<br /><br />As always Michelle a wonderful post thank you.The Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.com