Jacquie802 Posted March 11, 2006 Report Share Posted March 11, 2006 So my aunt calls me today to tell me about a bday party she is having for my grandmother tomorrow...we chat a little bit about this and that and she goes...you know half of your problems is that you sleep too much...I'm like okay...you know nothing about me, but yeah sure. Maybe if she had even visited me lately the past few years she'd know something....Honestly, when I feel sick I lay down. I don't always go to sleep. On those horrible days though I do sleep, because that's the only way to feel better, or not have to deal with it. I can dream about things I can't do and so on.....Is it really her business how much I sleep. Some night I can't sleep until 2 or 3am because I feel wired, and I know it sounds weird but it's true. I just feel as though she has no room to offer her opinion because she is barely there for me. I guess maybe I'll look into some counseling, because I have enough to worry about, never mind what people "think" they know. I really think my family needs couseling more than I do, LOL.Jacquie Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted March 11, 2006 Report Share Posted March 11, 2006 Geez that must be my problem too then... Quote Link to comment Share on other sites More sharing options...
OCsunshine Posted March 11, 2006 Report Share Posted March 11, 2006 Jacquie,My family had the same "problem" with me for a while. Not my immediate family that saw me struggle every day, but my extended family that would just hear that I was "sick a lot" and they never visited.I was a young teenager at the time I first became ill... I was totally bedridden and even sitting upright would cause blackouts. My extended family would say that I needed to "get some fresh air and I'd feel better" and my grandparents even bought me a BICYCLE for Christmas just to get me "motivated" to get my energy back.Oh brother.Just letting you know, you're not alone. People are ignorant. We just have to ignore them and know that WE KNOW the TRUTH. Quote Link to comment Share on other sites More sharing options...
April Love Posted March 11, 2006 Report Share Posted March 11, 2006 Just thought you might find this funny. I have a little dysautonomia prayer I say before bed, it goes"Now I lay me down to sleep,Please let me get out of bed at least once in the next three weeks!"I don't ask for much! And I know during my weeks when I'm in the bed my family and friends don't get it, so I just tell them when they ask where I've been, "I was hibernating, it's one of the symptoms of the illness!"Other explanations include,"I have an overactive dormant gene!""I'm increasing my demand, by limiting my supply. It keeps my market value high!""Someone has to keep an eye on the sheets!""I'm an artist, Sleep is my medium of choice!" and my favorite that usually gets 'em off my back"My fatigue is a genetic trait, it's brought on by my family!"Don't worry about those who don't understand you or this illness, I wouldn't have understood it myself before I experienced it. (And now that I have experienced it, I'm too tired to explain it!)My family can't tell you what's wrong with me, but since I live in Florida and we don't really have a winter, they seem to understand that year round at any point, I am likely to be in the bed. Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted March 12, 2006 Report Share Posted March 12, 2006 I'm sorry that you too have to deal with this. My family and friends make comments all the time, that maybe I would feel better if I would actually get up and do something. It hurts, but deep down inside I know myself better than anyone else. If I don't lay down and be that bum they claim I am, I'm only going to feel worse. Guess it goes along with having an invisible illness. Adults don't like to believe what they can't see, but if we were only like children and their unseeing believing. (santa would still be real )Sending hugs and smiles your way!~Nicole Quote Link to comment Share on other sites More sharing options...
Lukkychrm42 Posted March 12, 2006 Report Share Posted March 12, 2006 Just thought you might find this funny. I have a little dysautonomia prayer I say before bed, it goes"Now I lay me down to sleep,Please let me get out of bed at least once in the next three weeks!"I don't ask for much! And I know during my weeks when I'm in the bed my family and friends don't get it, so I just tell them when they ask where I've been, "I was hibernating, it's one of the symptoms of the illness!"Other explanations include,"I have an overactive dormant gene!""I'm increasing my demand, by limiting my supply. It keeps my market value high!""Someone has to keep an eye on the sheets!""I'm an artist, Sleep is my medium of choice!" and my favorite that usually gets 'em off my back"My fatigue is a genetic trait, it's brought on by my family!"I love it!!! Quote Link to comment Share on other sites More sharing options...
Evie Posted March 12, 2006 Report Share Posted March 12, 2006 Oh my gosh i have been told that too! When i had CFS and would bascially be fighting to literally keep my eyes open i was told that "if you sleep too much it makes your tired". It use to hurt my feelings so much. At the time those comments really felt like i was being 'blamed' for being sick .. like i was doing things wrong to create the illness...I dont think people actually mean for it to sound like that, they just dont realise how hopeless these types of illnesses make us feel. Its funny as Australias top swimmer Ian Thorpe has recently come down with a unidentifiable illness and is missing the commonwealth games (Sports biggest event other than the olympics in australia). Another of our ex top swimmers made a comment saying how hopefully Ian will learn from this and be able to better prepare next time (or something along those lines). Ian got really cut by this remark and slammed the other swimmer for saying it and now lots of people are complaining about how Ian is overreacting and being a real twit about it all. However I can totally see how comments like that really hurt.... people just dont understand until they are on the recieving end! I dont think people would say to someone with cancer who is going through chemo "gee maybe if you had some fresh air you would be all better!" I am sorry that you are having to go through those sorts of comments! Hopefully one day people will understand .... Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted March 12, 2006 Report Share Posted March 12, 2006 I think that they all read The Secret Garden, by Frances Hodgson Burnett, when they were children, and they thought it was a medical textbook, not a fairy tale! (http://www.online-literature.com/burnett/secretgarden/) In Burnett's novel, two children were sick because they were spoiled. All they had to do was stop being disagreeable and get out into the garden and exercise some, whereupon they were healed! And the same thing could happen to us all! All we need to do is think happy thoughts and run around in the sunshine! And pigs will fly! Quote Link to comment Share on other sites More sharing options...
AJVDK Posted March 12, 2006 Report Share Posted March 12, 2006 Sorry to hear about your aunt. I hope she will soon understand what it is like for you. Sorry you have to listen to that. Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted March 13, 2006 Report Share Posted March 13, 2006 Here's my top ten list (not in a most-appalling-first order)1. I was told by an aunt that maybe gastric bypass would help cure me. (I'm sure my nausea will be better when I have to take a major pain medication- thanks!)2. Once an IV nurse came in to check on how I was doing and said "so how are you doing in here? Still a little depressed?" (Ya. That is why I need 3% saline, because I'm depressed and decided to come in here and throw up saltines out of boredom)3. I was once told by a family member that I got this illness from the kitty litter box (do I spend time there?)4. A neighbor told me that everything can be cured with a hug and then asked me if I have any friends (ya, I'm going to punch you with 5 of them)5. A CNA when I was hospitalized said that the only reason my heart rate was 150 standing is because the monitors must scare me when I get close to them (hi, I work here remember?)6. I was told once by a neighbor that when I have children, it will go away because I won't have as much time to think about myself (yes, I have heard that being single brings this on...)7. An ER doctor once asked what I had and said that it can't be bad enough to be in an ER because he's never heard of POTS and said that Mestinon must be a placebo because he has never heard of that. (had on a mock-turtleneck- enough said)8. The whole circle of "why are you in the ER, you should get in touch with your doctor" and "why do you need to be seen? If you are that sick go to the ER!"9. One cardiac therapist said that he must have POTS too, because he's feeling tired today also. (never went back)10. My friend's neighbor who is a physical therapist said that Red Bull usually works for these sorts of things because "sometimes all you need is a little incentive to get moving" (oh, I didn't realize that working 50 hours a week, exercising, cooking, cleaning and charity work was not enough!) Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted March 13, 2006 Author Report Share Posted March 13, 2006 All I can say is, OH MY GOODNESS! I'm sure my aunt/family is going to come up with something new within a few days, it should be interesting as to what they say. My aunt seems to think she knows more than the docs I see here in Boston....Jacquie Quote Link to comment Share on other sites More sharing options...
Be Still Posted March 13, 2006 Report Share Posted March 13, 2006 It truly is amazing that people feel they need to educate us about ourselves, seeing as we are so 'ignorant' as to not know the simplest things.I have been told: I read too much, I need to breath deeper, I just need Arizona Iced Tea, etc. (W-h-a-t-e-v-e-r.)I came to the conclusion that folks like us make people nervous. Anyone who is going through a hard time, stricken by some difficulty, makes others aware of their vulnerability. That generates fear and the bystander tends to quickly determine a reason why we are struggling, and it's always something simple that they have control over so they would never end up like us, and it lets them off the hook and eases their fear.The hardest thing for me to grasp was that: they don't want to understand. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 13, 2006 Report Share Posted March 13, 2006 Gosh, I'm also one who's heard it all and felt crushed by some of my family at times....and somewhere along the way I stopped trying to explain and stopped caring about the comments. (It was usually the judgmental people who didn't get it)If this helps...One time, when I least expected any change....they GOT IT!!! (at least I think the confused ones do)It was a family gathering and I was feeling so weak that I was wearing my heart rate monitor to help myself not to overdo and spin into an SVT...anyway, I had been sitting and then stood up to go get a drink and my aunt stopped to speak to me, and while I stood there my monitor starts beeeping and she witnessed and saw me quiver in front of her as my monitor is beeping.. I saw her finally understand! The light bulb went on! Sometimes, eventually, even some doubters will "get it".good wishes, tearose Quote Link to comment Share on other sites More sharing options...
Kitsakatsa Posted March 13, 2006 Report Share Posted March 13, 2006 That is so funny! Arizona Ice Tea. Yeah I think that someone once told me flush out my autonomic system with Arizona Green Tea. Amazing advances in Science Abound!You guys crack me up!! Quote Link to comment Share on other sites More sharing options...
Radha Posted March 14, 2006 Report Share Posted March 14, 2006 i know how much these kind of comments hurt, since i have heard alot from my family too, but thank God they have changed and now understand, i hope your aunt understands soon, its too bad that our suffering is not visible on the outside, since people tend to believe stronger when they can see with their eyes.radha Quote Link to comment Share on other sites More sharing options...
Wufflebear Posted March 14, 2006 Report Share Posted March 14, 2006 ah yes...I was told in high school that "i made myself faint' and that "I dreamed up the headaches." yea, well I wish I would quit doing that...and while I am at it...maybe I can snap back to sanity and remember where I left my swiss bank account number.....lol Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted March 14, 2006 Author Report Share Posted March 14, 2006 Who knew sleep caused all of our symptoms...I sure didn't! Jacquie Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted March 15, 2006 Report Share Posted March 15, 2006 I'm so sorry you had to have someone tell you that...it is SO invalidating to someone who has to struggle everyday!I've had it all said to me too:Years ago I would have relatives call me up and say " now you would tell ME if you had an eating disorder right?" ! And then all the Dr's who would take me aside and ask me if I made myself throw up or was abused by family or my husband! Several specialists including one well known one had the magic answer " just stop drinking so much and you will be fine" and then I always have my mother in law to remind me on one of my bad cycles where I am just trying to get through my daily chores/ and acivites that " yeh she feels really tired too today.....its the weather" And my lovely friend who decided to write me a long letter 2 weeks before my wedding when I was feeling great to tell me that she was gravely concerned about me and how I live my life.... Hmmm Lets see.....I was 31 and just getting married to the man I loved more than anything, bought a new house, started school, and was looking forward to living life as best as possible.....And she was 32.....in an unhappy marriage, in the process of leaving her hubby and kids behind, and doing things I will not mention.....Its amazing how people can pass their judgement .......Oh well.... I guess all you can do is laugh at the silly comments and feel sorry for the ones whose comments are made from deeper problems in their own lives.... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.