tag:blogger.com,1999:blog-6181780691238814823.post5129758740430914159..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Am I sick enough for you?Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger75125tag:blogger.com,1999:blog-6181780691238814823.post-46053259282189861282014-05-07T14:17:59.177+10:002014-05-07T14:17:59.177+10:00Bloody right to the point and I love it, I have RA...Bloody right to the point and I love it, I have RA, OA and fibromyalgia as well as a vascular issue that at 46 caused me to have a colonic stroke, which has left me with severe bowel probs. and numerous other medical issues. Yes I look ok on the outside, till you see the slight limpy gait, the pained look on my face 5-6 out of 7 days. I have a family and grandchildren, a mortgage to pay, a car to pay off and am still working. Even though I struggle everyday to work. I'm lucky ATM I can still do it, abet not to my full capacity, maybe not even half way lol. But I'm lucky to have a fairly cruisy job and I love what I do, it's my passion. I know at some stage probably in the very near future that will be changing and I'm actually looking forward to being able to be at home again and craft and read and do the things I'm missing out on as work drains all my energy, so when at home I'm normally flat on the lounge asleep or unable to move. <br />I love your blog and Facebook page, gives me inspiration. I love your black humour and the way you can just take the piss. Keep it up Michelle. Between you and my sis who has just survived her second bout of breast cancer, you are my inspiration to get up and just bloody carry on. <br />Thumbs up chook and one day I hope you get that farm and chook house. ( we need the tree change 7 years ago, never regretted it)<br />Shazzy xxxAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-39007199162674247822014-04-03T22:18:49.717+11:002014-04-03T22:18:49.717+11:00Have read through all these comments and am contem...Have read through all these comments and am contemplating printing the whole lot and sticking them together- one in a book for all the ignoramouses in this world and one as a coat so those ignoramouseses can have a quick read of me when they are making their assumptions. I am alway baffled by what sick is supposesd to look like, peeves me when consultants put on my letters that I look well and then follows the spew of problems, the only thing that others then read is that I look well therefore must be well. I visit hospital many a day, the only folk who dont 'look well' are those who pass by tethered to a bed by a million tubes in every orofice. The other people there must be sick or they wouldnt be there would they...........mind boggling. People should try living with POTS, EDS, Fibro and all the other crappy things for just one day and then see how they feel. Great post, helps to confirm that I am not mad and I am not the only one who suffers this discrimination cos that is what it is.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-81848324221514746932014-03-15T19:01:44.144+11:002014-03-15T19:01:44.144+11:00Just…reading through many of your posts and I'...Just…reading through many of your posts and I'm kind of crying on this one. You really DO feel like you can't win, seriously. <br /><br />Went through a lot of this over the last couple years just before I got diagnosed. If I didn't feel well enough to go out, I was being anti-social or moody. If I gave in and went out but felt awful the whole time, then I was just stubbornly refusing to have a good time. Being honest about how I felt was being whiny and seeking attention, and down-playing how bad I felt meant that I wasn't REALLY sick enough to need any help.<br /><br />You can't be strong nor weak nor have good days nor bad ones. There seems to be this mold of the 'perfect sick person' that society expects to see and is willing to help, and everything else is unacceptable. <br /><br />Thanks for this post - reminding me to stand up for myself and to judge myself by my standards and not those around me. It helps a lot today.Shaunahttps://www.blogger.com/profile/04750760694847313212noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-49326899458411238382013-12-31T17:06:48.349+11:002013-12-31T17:06:48.349+11:00Here, here!! Thankfully I have a friendship commun...Here, here!! Thankfully I have a friendship community that is really good, understanding and supportive, but when I am getting to know new people or in a new study, work or social environment it can be really challenging. I live with a list of invisible illness/disability/whatever. It's part of my daily life, impacting more on some days than on others. But it's always there. Mostly I don't bother trying to justify my lifestyle (arranged around my limitations and capabilities, likes and interests) that doesn't fit the conventional work picture for someone of my age or education... but some times it's hard to remember that I don't have to justify or explain it. Thank-you for your rant - it adds to the list of things that help me keep the courage going to say "I am who I am and I do what I do, and if you don't like it then you don't have to be a part of it"... Xajohansenhttps://www.blogger.com/profile/18304482013488827052noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-29659779107491849872013-11-05T23:48:26.120+11:002013-11-05T23:48:26.120+11:00Hi. I have read This post before. But needed to re...Hi. I have read This post before. But needed to read it again. Yesterday day i was at a demdoc for skin problem( nothing to do about my pots at all). She Asked about me using the wheelchair etc. That ok, but its the way its done. And Then, the all winning, u look so healthy! I have now øearned to smile and say well tank u. Nemi2https://www.blogger.com/profile/13445704109602687925noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-65408168173483541632013-09-30T04:58:52.337+10:002013-09-30T04:58:52.337+10:00Thank You!
Written perfectly with a sense of hum...Thank You! <br />Written perfectly with a sense of humor! <br />I never thought I would say this, but it's nice to know my feelings are validated and I am not alone in experiencing the same doubts. (NOT that I want others to deal with the doubts.)<br />Thanks for the validation and above all...The humor! <br />XO <br />Maria Anonymoushttps://www.blogger.com/profile/09433074938336533723noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-15770859052735986492013-09-22T14:25:34.096+10:002013-09-22T14:25:34.096+10:00Was glad I stumbled onto your blog this evening. ...Was glad I stumbled onto your blog this evening. I was licking my wounds after hearing the words, "it's been my observation that you are too protective of your son and that he needs the freedom to be away from you in his Sunday school class." My ten year old has dysautonomia. I want to scream, "really, you really think you know my son better than I do and are you JUDGING me?" :( I NEEDED someone to get it. Sadly, that someone is you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-17072305038259904112013-09-15T10:40:50.200+10:002013-09-15T10:40:50.200+10:00Your my hero Michelle. I'm sick too, but was a...Your my hero Michelle. I'm sick too, but was able to fool myself & the world & my employer for years. Finally, I suffered the consequences...I watched my twin sister be so mistreated & misunderstood...I wish she was still alive..I want to give her another hug & tell her how loved she is. I still have a fire in me that no one can put out, including this illness. We will stand strong together.Cathy Hickmanhttps://www.blogger.com/profile/14049383644389022965noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-51261959840662505562013-07-30T23:12:49.380+10:002013-07-30T23:12:49.380+10:00Loved the article.
In reference to the bit about...Loved the article. <br /><br />In reference to the bit about the wheelchair. I'm not much of a face reader and so don't really focus on the faces of others and therefore haven't noticed the looks. Besides, when at my sickest and in need of the chair, I don't think I'd notice even if I normally noticed others' faces. However, my ex, when she left me, said, "I know this doesn't sound very nice, but I don't like the attention called to me when we are out with you in your wheelchair and dark glasses (for light sensitivity). I already get enough negative attention as a dyke without the attention the chair brings." Lovely.<br /><br />However, I too try to have fun with what I have. I used to always say that if I had a walker, it would be bedazzled and have a bike bell and mirror with streamers. Of course, by the time I had a rollator, I was too sick to bedazzle it. Still, I did what I could, like wearing shocking pink leather gloves with the black leather jacket, dark glasses, and hat I had to wear (that I had to wear during the worst of my light sensitivity) while in my wheelchair. One day, as I was in a store, tooling about in an electric cart, a woman walking briskly by laughed, stopped, and said, "I love the gloves!" Now there was a person I could appreciate!<br /><br />I needed your article today. I've generally been patient and calm with others, but know for sanity's sake I need to let people eat my dust. I'm just so done with ignorance. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-77716637713045163132013-07-29T22:46:57.486+10:002013-07-29T22:46:57.486+10:00I feel like I could've written this post becau...I feel like I could've written this post because it described so much of my experience of being sick (including The Walking Dead addiction and a slight crush on Dean). Thanks for a fantastic article.Anonymoushttps://www.blogger.com/profile/06892852622409049143noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-47556204845729352242013-07-29T15:20:58.577+10:002013-07-29T15:20:58.577+10:00I am glad you posted this. I get looks for my hand...I am glad you posted this. I get looks for my handicap tag and just last week I got chastised because I couldnt put the cart back. The guy snapped at me and told me I was lazy. I told him I have chronic pain disorder. Like I had to tell him anything. For some reason I felt I had to.<br /><br />A priest when I was admitted to the hospital looked into my room says you don't look sick you shouldn't be there. Should have yelled, should have told him off..should of I have respect though no matter what the religion. But I deeply fought the tears...well until he was gone.<br /><br />My invisible illness...Anonymoushttps://www.blogger.com/profile/07576383423581838090noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-10078991096550001712013-07-29T15:20:36.517+10:002013-07-29T15:20:36.517+10:00I am glad you posted this. I get looks for my hand...I am glad you posted this. I get looks for my handicap tag and just last week I got chastised because I couldnt put the cart back. The guy snapped at me and told me I was lazy. I told him I have chronic pain disorder. Like I had to tell him anything. For some reason I felt I had to.<br /><br />A priest when I was admitted to the hospital looked into my room says you don't look sick you shouldn't be there. Should have yelled, should have told him off..should of I have respect though no matter what the religion. But I deeply fought the tears...well until he was gone.<br /><br />My invisible illness...Anonymoushttps://www.blogger.com/profile/07576383423581838090noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-80384994356087683282013-07-27T14:56:42.866+10:002013-07-27T14:56:42.866+10:00Wow....I think you look plenty sick. But, I say th...Wow....I think you look plenty sick. But, I say this in a good way. We can sometimes go incognito into the world of the healthy. I have often thought a tatoo on my forhead might do the trick...you know with bangs, that I can lift up....you know for the overly educated public. I often thought of tatoos right on my chest, so they will send me to the right hospital. UGH, I listened to that garbage for 31 yrs as a Welfare case manager..even when I was taken a second to put a nitro in my mouth, so as to get through my shift & help the most needy people...food & shelter are important whether you are sick or not. My clients were my cheerleaders, as I was 20 yrs into my career before I could not get out of my bed every day to get to my work. I most always made it up to my clients.They always forgave me my weakness regarding my body. Good souls will always know your truths. Your awesome my friend!!! Cathy Hickmanhttps://www.blogger.com/profile/14049383644389022965noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-59052564684180398312013-07-03T03:53:08.312+10:002013-07-03T03:53:08.312+10:00I refuse to be invisible! Like Miss Celie in the c...I refuse to be invisible! Like Miss Celie in the color purple..."I may be poor, I may be ignorant, hell i may even be ugly!!!But I am here by God I AM HERE!!!!<br />im going through bit of an angry spell because i m having a wedding in 18 days it has taken me 2 yers to pull it together and still not done, becuase as we all know not only do these damn diseases take our prvious life, they take a serious chunk out of the pocket book tto! It was actually said to me funny, younever have energy for me, but you have the energy to plan and have a big wedding!" ARE YOU FREAKING KIDDING ME? I am having nightmares aout aking up on my wedding day with flare upso bad i ant lave my bed and you are giving me crap over trying to be happy? so i dont h much patience with the but you dont look sick people..my god if i dont look ad enuff for you you must live in TV world anyone with eyes cn see i look like crap..oh i forgot, that just means im too lazy to brush hair and apply make up and get dressed! I love this sight and am forwrding to Fibro Warriors many of us suffer from Bob as well!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-45440114096914578952013-05-21T17:11:50.601+10:002013-05-21T17:11:50.601+10:00Go Stacey. You are right those who doubt our condi...Go Stacey. You are right those who doubt our conditions are not worth knowing. I must admit for the most part I have filtered out the people in my life who bring me down. Life is too short to waste on people who don't add to your life or bring you down. Plus those times you can get out and have fun are like gold. Buggered if we should let others wreck that! xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-35981359480871283102013-05-21T17:08:10.282+10:002013-05-21T17:08:10.282+10:00Babe I so wish we were closer so we could hang out...Babe I so wish we were closer so we could hang out and eat brown sugar and tell fart jokes. Oh the times we'd have xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-76401904953827968552013-05-21T17:07:25.078+10:002013-05-21T17:07:25.078+10:00Thanks hon xxThanks hon xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-7503523753561887452013-05-21T17:07:10.066+10:002013-05-21T17:07:10.066+10:00Thanks babe. What is with that "you sound fin...Thanks babe. What is with that "you sound fine on the phone" business? I don't get it. How does that equal cure. Argh. I hope for that empathetic world too. It has to happen one day I'm sure xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-7445490970395362152013-05-21T17:04:30.994+10:002013-05-21T17:04:30.994+10:00YES. I can sometimes walk in relatively okay but 5...YES. I can sometimes walk in relatively okay but 5 mins in I'm stumbling and slurring and often walk out looking drunk more than sick. My son took me to see a comedy show a couple of weeks ago. I looked fine despite being in a wheelchair and being wheeled by my son, no way I could have walked around the city at night. The looks, ugh. You either don't exist or you get the whispers and the looks of disgust. Can't win. As you say all you can do is hold your head high and look them in the eye. xxMichelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-87557344594622093402013-05-21T16:57:36.816+10:002013-05-21T16:57:36.816+10:00Sadly you are right Anon. There are some great doc...Sadly you are right Anon. There are some great docs if you can find them but there are many who just don't get it. There is such a huge difference between the clinical observation and what it means in real life. So many of us, including myself, have been dismissed or told it's all in our heads etc It makes me both sad and angry that so many of us have the same negative experiences. I'm so sorry that you've had no follow up that is appalling. (hugs)Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-9516111593507619102013-05-01T23:02:43.191+10:002013-05-01T23:02:43.191+10:00I love this post! You've wrote down how everyo...I love this post! You've wrote down how everyone with invisible illnesses feel! I try not to talk about my illnesses, I'm sure you know how complex autonomic dysfunctions and EDS can be,there's too much to explain. If people want to doubt my condition than they're not worth knowing.i refuse to let illnesses stop me from living so if I want to go out and socialise I will, they don't see the 32 tablets a day I take just so I can try to live an normal life. I will post pictures of me with make up on, hair done, and dressed up. If people are ignorant enough not to see past that then I don't need them in my life. I love my life at the moment, I don't care how sick I am.i have great friends and family and as long as I have their support that's all I need.Stacey Forsythhttps://www.blogger.com/profile/12435381201261960139noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-20230855738500481602013-05-01T21:52:13.834+10:002013-05-01T21:52:13.834+10:00Kinda like a mood ring ...
... or one of those t ...Kinda like a mood ring ...<br /><br />... or one of those t shirst that change colour with heat ;)Mr. Grumpyhttps://www.blogger.com/profile/14282895059206501300noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-5562670287454431402013-05-01T09:03:52.873+10:002013-05-01T09:03:52.873+10:00Love this! OMG I am so glad I am not the only one ...Love this! OMG I am so glad I am not the only one who eats brown sugar out of the jar! Hahaha, and girl I make my own with organic sugar, and this local sorghum molasses. OMG. I think I will go have a some now. Love ya lady. illnesssucksfindfunnyhttps://www.blogger.com/profile/15657433565874382826noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-3258154689894397922013-04-30T21:55:48.006+10:002013-04-30T21:55:48.006+10:00bravo my friend, bravo.bravo my friend, bravo.kelley @ magnetoboldtoohttp://magnetoboldtoo.comnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-16010154955558218982013-04-29T16:50:29.142+10:002013-04-29T16:50:29.142+10:00Brilliant post babe. It's forever frustrating ...Brilliant post babe. It's forever frustrating when people tell me I sound good on the phone followed by you must be feeling better just because I'm having a day where my speech isn't affected. Unless by some miracle they find a cure for Parkinson's I'm not going to get better, at best I will get a break from symptoms now and then, but it's always waiting for me.<br /><br />It wears you down have to constantly justify your illness. I dream one day I will live in an empathetic world. I can't help but be jealous of all those people who never get sick. Keep up the good fight!Fridayhttps://www.blogger.com/profile/10506161640990892047noreply@blogger.com