gertie Posted July 27, 2009 Report Share Posted July 27, 2009 I've had Dys many years & there are so few days when I feel well. If I have a day when I have a little energy & think I might accomplish something in the house it seems a migraine or vertigo will strike. Sometimes I think maybe I'm lazy but when I look back to when I was "normal" I was a very energetic person. Do you every feel well? thanks. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 27, 2009 Report Share Posted July 27, 2009 Hi Alicia,There are very, very few days that I feel symptom-free and 'normal'. I feel the same way you do sometimes...Am I just lazy and not pushing myself enough? But I do try to push myself on most days, and then I usually overdo it and end up with a very bad day that I have to spend most of it in bed with flu-like symptoms and extreme fatigue, dizziness, syncope. I, too, used to be very active, and would love to be able to hike and work again. Here's hoping that we all have more 'good' days than 'bad'.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
futurehope Posted July 27, 2009 Report Share Posted July 27, 2009 Do You Ever Have A Day Of No Symptoms?No, but some days I am capable of more than on other days. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 27, 2009 Report Share Posted July 27, 2009 I think there have been 3 or 4 days when I felt 80-90% better within the last year. They come with no real warning. The thing is, I've been sick for over 3 years now and I know that even on those good days I'm not nearly to the energy level I was pre-POTS. Sometimes if I'm desperate, I'll drink maybe a 1/4 cup of regular coffee for a boost (it makes me feel worse in the long run). I used to barely feel the effects of a whole cup of coffee pre-POTS, but now just a few sips make me feel so incredibly awake. I think we eventually get used to functioning in a very groggy state. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted July 27, 2009 Report Share Posted July 27, 2009 Sure, I have lots of times in which, laying flat on my back in bed, I will think "gee...I think I will do this-that-and-the-other-thing". Then I get up and reality strikes back yet again. And yes, even after a decade and a half, part of my brain still believes that if I just "tried harder" I could accomplish more. I've come to believe this is a form of denial. I think it's easier sometimes to think I could do something than facing the reality of being unable to do something. You know, like I COULD do this or that, I'm just choosing not to do it. Quote Link to comment Share on other sites More sharing options...
Guest brianala Posted July 27, 2009 Report Share Posted July 27, 2009 With the exception of the last two weeks, I would say I am one of the lucky ones that spends the majority of my time symptom free. At least, no symptoms that keep me from working or doing things I want to do. However, the past two weeks I have had vertigo on and off (more on than off) and for the first time I'm really dealing with a symptom that is keeping me incapacitated in some manner. I received most of my diagnoses in the past year but I'm pretty sure I've had this for longer than that. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 27, 2009 Report Share Posted July 27, 2009 I used to feel great or so I thought drinking soda with caffine all day long working in and out of a pool with young children for most of my life and then teach water areobics, swimming to all ages, but heart jumping out of my throat and ready to faint. Caffine was my drug of choice, and my car wheels turned in at every Duncan Donuts we hit along the way to work and back home for coffe also. I was active constally, ( falling ) but was always working in activities that allowed me collapse to the ground and believed me I needed to. I got addicted to double choc. donuts with colored sprinkles too. I was also the director of most of what I did. I was in control of when I could just take off and sit, cool off keep drinking to keep myself perky, and happy, happy, happy! Then, I would go home and collapse till the alarm went off and I never knew how I got up and dragged three kids out of bed and dragged them back to work with me. I would lay there forever kind of like I do now, only now I know my BP is so low. I'm sure it was back then. Most of my jobs were camps, children's programs, swimming, so they could come along with me till they got older.Now, never a day without symptoms. Sometimes I think all the meds makes things worse. My primary care told me since she dxed me she hates telling anyone they have POTs. But, I try to make the most of it, and trust that this is a bigger plan that I have no control over right now. Look for the joy in every day and blessings along the way.May we all find relief and be symptom free one day!Love to all~BellaMia~ Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted July 27, 2009 Report Share Posted July 27, 2009 Bjt22 - boy did yyou make me laugh.....yes...many times when I am laying down and rested I think...well...I am going to do this or that...one day I even thought I wanted to take my kids to a water park!!!! That idea left quickly... I am always amazed at how really incomopasitated I am...So no...I reallly have never had a day symptom free...not since last Sept. Erika Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 27, 2009 Report Share Posted July 27, 2009 Yeah, I laughed also. I'll be laying down thinking I'm going to get up and paint this whole house. Have a yard sale, simplify give the dog a haircut, make scapbooks on all the kids artwork and catch up on the books I'm writing. All in one day. LOL!I'm lucky if I empty the sink on a good day. My daughter told me, " mom there is no need for this after I cleaned this mess out for you." "I'll never do it again." I wanted to dig a big whole in the back yard and bury all my dishes like some rich actress did. But, the last thing I dug up was a plant and I was grounded for 15 mins. I just laugh a lot and pretend I'm in a movie, gets me through the day. Ha ha ha ha. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted July 27, 2009 Report Share Posted July 27, 2009 Symptoms everyday, it's no fun. I push myself through things and am so exhausted doing things it takes the fun away. I try to live as normally as possible, but it's hard. To actually hurt doing simple things like laundry? No one seems to understand that. It's not just fatigue, it's the dizziness, muscle pain, etc. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 28, 2009 Report Share Posted July 28, 2009 Forget a whole day... I'd be thankful for an hour! I have not felt normal for over 7 years since developing dysatuonomia. I am the same as others who have posted. I lay on my couch and think "I'll just get up and do this or that." Then I stand up and reality hits and I realize that I won't "just" do anything, and I will fight my body every step of the way for every little thing that I do. It blows my mind how disabled I actually am, especially if I look at healthy 20 and 30-something year olds. For instance, my sister woke up and had 4 episodes of diarrhea this morning, but she still went about 90% of her normal daily business. In comparison, I can barely walked from the bathroom to the couch just because I had a normal bowel movement. Even though I don't readily think of myself as disabled, I would estimate that I function at less than 30% of a level of normal. ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
skyblu Posted July 28, 2009 Report Share Posted July 28, 2009 Yes.....for some reason I was symptom free or pretty close to it on Saturday. First time in months where I spent a whole day actually feeling pretty good. And I have no clue as to why. My BP and HR were running very low all day and yet I felt OK. I'm thinking perhaps it was because my BP and HR stayed low...no spikes and crashes or erratic readings. Anyhow it was nice while it lasted. I'm back to feeling crappy again. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted July 28, 2009 Report Share Posted July 28, 2009 Yes.....for some reason I was symptom free or pretty close to it on Saturday. First time in months where I spent a whole day actually feeling pretty good. And I have no clue as to why. My BP and HR were running very low all day and yet I felt OK. I'm thinking perhaps it was because my BP and HR stayed low...no spikes and crashes or erratic readings. Anyhow it was nice while it lasted. I'm back to feeling crappy again.I feel much better if my blood pressure just stays bottomed out. I don't feel "well", but definitely better than if it's higher and has further to drop. Same with heart rates. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted July 28, 2009 Report Share Posted July 28, 2009 I just wanted to add (and I know I am not alone) that if I do have periods in a day that I feel ok...I need to enjoy them because without fail, it will seem like someone sucked the life out of me with no warning. It seemssomeone took a giant straw and sucked all the life out of me...and I am done...cooked...can't stand...move....bla bla and bla.................it can come on instantly although it takes much longer than that to recover!!! Erika Quote Link to comment Share on other sites More sharing options...
skyblu Posted July 28, 2009 Report Share Posted July 28, 2009 I feel much better if my blood pressure just stays bottomed out. I don't feel "well", but definitely better than if it's higher and has further to drop. Same with heart rates. Yes..I think it's better to have BP and HR stable even if it's on the low side. My BP and HR have become more erratic over the last few years and I'm sure that's why I feel worse then I did several years ago. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted July 28, 2009 Report Share Posted July 28, 2009 Yeah, I never have a day without symptoms. Probably only time I can go an hour without symptoms is when I am sleeping. But, I also have sleep apnea etc., so I am not sure how accurate that thought is... Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 28, 2009 Report Share Posted July 28, 2009 Not a whole day. But sometimes, I can feel "almost normal" and do "normal" things (like gardening or taking the boys to the park.) I usually suffer later that day or the next. Quote Link to comment Share on other sites More sharing options...
kjdube Posted July 28, 2009 Report Share Posted July 28, 2009 I never have a day without symptoms. Some days are better than others tho. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 28, 2009 Report Share Posted July 28, 2009 No, never. Quote Link to comment Share on other sites More sharing options...
shadesofgrey49 Posted July 28, 2009 Report Share Posted July 28, 2009 I think we eventually get used to functioning in a very groggy state.That's so true. Hi all, I haven't posted in a while. My Mayo trip is coming up at the end of September (guess it's still a long way away). I was diagnosed with POTS, but have done nothing to treat it. I try to exercise a few days a week. I did physical therapy for a few months, but it ended. Quote Link to comment Share on other sites More sharing options...
HoudiniCat Posted July 28, 2009 Report Share Posted July 28, 2009 Yes and they?re happening more and more often now, which is great. At first I would question myself at the end of the day ?What feels weird about today?? and the answer was ?nothing?. After two and half years or so it just felt really weird to have a symptom-free day. I?m not back to my pre-POTS self though yet and I definitely have a ?new normal? but any time at all without symptoms, be it days or hours, is fantastic. Quote Link to comment Share on other sites More sharing options...
futurehope Posted July 28, 2009 Report Share Posted July 28, 2009 Oh how I wish some people who need to understand the impact of this, could read these posts!The people who need to read this thread are:people who think you just "don't try hard enough"the doctors who think you enjoy not feeling well and think it is "all in your head"people who cannot understand why you can't...... anymore?our relatives who have no clue the daily sacrifices we make to appear normalpeople who want to deny you disability because you are faking itOkay, off my soapbox. I realize that healthy people without a chronic illness cannot comprehend the impact. I was fantasizing for a minute that others would get it, but the truth is, if people did realize how difficult life is with this syndrome, we would get "pity" from them, which, in reality, I don't want either.So, back to pretending to be like everyone else. At least I don't get the pitiful conversations and the "oh poor you" looks.Nothing like an "oh poor you" look... It doesn't uplift me any, if you know what I mean. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted July 29, 2009 Report Share Posted July 29, 2009 I can't think of the last day I was symptom free. I am lately dealing with crippling pain on a nearly daily basis. My GI problems are making the whole concept of eating and digestion unbearably difficult. But I am hopeful that a new treatment regimen my doctor just started could at least bring improvement! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 29, 2009 Report Share Posted July 29, 2009 No, never a day with no symptoms. I just have become very accustomed to managing and adjusting. Quote Link to comment Share on other sites More sharing options...
Maxine Posted July 29, 2009 Report Share Posted July 29, 2009 There's days when I feel fairly normal, and those are the days I try to get a lot accomplished. However, when I crash it's so sudden and disappointing.It depends on what "normal" is for you. I don't really remember what it's like, so my "normal" could be different from the average person without chronic illness.I usually never have days without pain lately, but there's times when the pain level is lower, and I try to pace myself and it will hopefully stay that way.If I don't watch body mechanics, or do something stupid, then I end up in a pain crisis, and end up with terrible pain spikes in my spine, and insanely painful muscle spasms. Last night they were so bad they made me irritable. My pain tolerance is high, and pain in my hips, legs, wrists, hands, and feet is more tolerable and doesn't usually affect function too much. However, hip pain can get tiresome. Sunday my left hip partially dislocated, and I thought my leg was going to come off--- . With EDS I have lots of pain.Each day is a battle, but there are days when it's really hard and the emotional strain from it can be just as paralizing as the physical limitations and pain.The slow digestion issues can also affect my ability to function.Maxine :0) Quote Link to comment Share on other sites More sharing options...
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