lgtaylor100 Posted September 23, 2011 Report Share Posted September 23, 2011 I realize that everyone will need to appropiximate on this, but I just wanted to have some idea. I know its hard to say. Some days I have just a few hours that are good, so would I call that a good day or a bad day? I guess that depends on my mood. Quote Link to comment Share on other sites More sharing options...
jknh9 Posted September 23, 2011 Report Share Posted September 23, 2011 I voted "4" but now I'm wondering. I guess "good" is a pretty relative term, isn't it? I said four because I'm guessing that's the average of the time each week I'm "OK"-- I can do things like laundry, cleaning, working from home, running short errands like going to the bank. I rarely have a day where I'm flat on my back all day long. But, on the other hand, even my good days are not "normal." I can't get up at 6:30 like my husband, I have sleep disturbances every night, I can't eat at the same time each day, sometimes I'll think I'm doing all right and then nearly pass out, etc. So, while I don't have "normal" days at all, I do have days that are "good" for me, and the good outweighs the bad these days Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted September 23, 2011 Report Share Posted September 23, 2011 I have entire weeks that are BAD so the answer would be zero, then there are weeks where I feel a little better for 3-4 days- so I averaged it out around 2. But it's never "normal" - just good for me like the previous poster said. Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted September 23, 2011 Report Share Posted September 23, 2011 I haven't had a normal day or half day for that matter in a few years Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 23, 2011 Report Share Posted September 23, 2011 I'm kind of like Todd. I voted a "zero" due to physical limits. I always know in my mind that there are people in this world worse off than me healthwise, BUT, I can't drive, shop, barely cook, and can't socialize much. To me, that is just bad all the way around. BUT, emotionally, I would rate a "fine" everyday. It's weird how my mood is always "up" given the circumstances. I think it's because I realize that this is my reality for now, even though I would like my old life back. I am still looking for answers, though. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted September 24, 2011 Report Share Posted September 24, 2011 My idea of a "good" day is that I'm not bedridden with debilitating fatigue and that I can walk through my house without huffing and puffing. A fantastic day is a day that I feel well enough to get out of the house. Not too many of those days for sure! Quote Link to comment Share on other sites More sharing options...
golden girl Posted September 25, 2011 Report Share Posted September 25, 2011 Someday I have good days but not very often. I am always fatigue and drained of energy. Quote Link to comment Share on other sites More sharing options...
targs66 Posted September 26, 2011 Report Share Posted September 26, 2011 Like Naomi said, my good/bad periods last several days. I might be doing okay for a few days, then really crash for weeks. Quote Link to comment Share on other sites More sharing options...
lizababy Posted September 26, 2011 Report Share Posted September 26, 2011 I put four because when I am really good I can go about four straight good days. By good days, I mean days where I am able to get through the entire day of work or class without too many problems. Mind you, I am always home by 3pm and passed out on the couch by 4 but it is the best I can do. The downside is that I can typically only have two to three weeks like this before I end up with a week to two that I can barely make it to my bathroom. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted September 26, 2011 Report Share Posted September 26, 2011 it seems i have either none or 2-3..... i did have a good week or two this month, but with bad days in them.... but mostly its about 2 days a week for me.... if that. tennille Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted September 26, 2011 Report Share Posted September 26, 2011 BTW.... thanks for this poll.... glad you posted it. and shout out to all of yall on here that i havent spoke to in a while dealin with this disease is hard, and i havent been on here much, as my coping mechanisms are nonexistant these days and im just falling apart it seems.... ugh... tennille Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 11, 2011 Report Share Posted October 11, 2011 I hated answering this one! I used to be so much better! My spirits are fantastic, I am emotionally very happy, and would like to say every day is a great day. From a purely medical standpoint, though, I no longer have good days. At all. I have less and less I can do and get sicker and sicker. Hard to take. Especially since I try so hard not to focus on what I have lost. I prefer to focus on all the things in life that make me happy!Sandy Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted October 11, 2011 Report Share Posted October 11, 2011 at this point my BP has been pretty good with florinef, my bad days are punctuated by soul-crushing headaches and weird pressure and stiffness in my head and neck. I feel like I have something that has yet to be diagnosed, the florinef helped with fluid retention but there is an underlying thing that is not being addressed. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted October 11, 2011 Report Share Posted October 11, 2011 And Tennille, all of us go through periods where we can't see the light for all the darkness. Dealing with this disease can be brutal. Watching the list of "I used to...." get longer and longer is hard for all of us. You are definitely NOT alone. I find that even when I am only awake for four hours or less out of the day, stopping by this forum is a huge help to my feelings of isolation. So I would encourage you to try to swing by, even when you are feeling really awful. My laptop is my saving grace, they should supply them free of charge to us POTSies! How much better would all of us cope if it were easier to reach out to others without having to get out of bed!Sandy Quote Link to comment Share on other sites More sharing options...
pulp Posted October 11, 2011 Report Share Posted October 11, 2011 I havent had a good day in a long time, but I think if I lower my sense of what a good day is (feeling 100% normal etc) I have some better, some worse. 1 day last week I actually felt rather allright so I even took my first blood tests on a person (hooray me who's been a phobic vs needles and blood a long time!). Had declined the other days cause my anxiety levels can get really high so then blood all of a sudden makes me queezy. The weird spacey feeling is almost always constant, except in the morning - then it's just the fatigue. Quote Link to comment Share on other sites More sharing options...
abnel Posted October 25, 2011 Report Share Posted October 25, 2011 I'm finding this a hard one to answer emotionally and haven't voted yet. I am wondering if I need to come to terms with a new "normal". Three months ago I was feeling the best I'd been for a very long time. I was getting out every day, walking in the park, taking classes, seeing friends, etc. I was by no means normal (still had breathing issues, tachy) but it was very manageable. I would say I got to the point where I was having 4-5 good days a week which was the best I'd been since getting POTS.Fast foward to now and I'm still recovering from a nasty infestion in August. For the first 2 months every day was bad. More recently I've had a good day here and there, but I'm still too unstable to vote properly. Thanks for posting this Poll though, it's very interesting. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 26, 2011 Report Share Posted October 26, 2011 Now im exercising and im kind of ok I have 4-5 good days. Still cant work out how to avoid or control the bad days. they just come randomly it seems and I know usually in the morning how its gonna go. Quote Link to comment Share on other sites More sharing options...
Troy Posted February 12, 2012 Report Share Posted February 12, 2012 My Dysautonomia is so excessively random that there is no way for me to answer this question. Sometimes I have 7 bad days in a week, other times I have 7 good days and anything in between. Quote Link to comment Share on other sites More sharing options...
bunny Posted February 12, 2012 Report Share Posted February 12, 2012 Any day I wake up and am alive and not in the hospital is a good day to me! My body's been put through so much and despite what the medical textbooks say, I'm still alive and functioning. Because the symptoms are so transient for me, even when things are rough there will be good moments in the day. Quote Link to comment Share on other sites More sharing options...
blueskies Posted February 17, 2012 Report Share Posted February 17, 2012 I really think in hours. If I get a few good hours when I'm able to get out of the house and go to the park, or bookstore/library, or visit my sister then I consider that a good day. If I am able to get out of the house for a walk -- try to do this every day but of course that's only the aim, not the reality -- I consider a day when I've been able to take a walk a good day. Also, days when I've been able to do some housework (yesterday it was vacuuming and moving some furniture...yep, actually moving some furniture. Some days I can't lift a washing basket but occasionally for some unknown reason I can have a day when I can move furniture to vacuum behind it?)...well I consider that a very good day. All the things I mentioned along with stuff like minding my grandkids for a while are always followed by exhaustion. Doesn't help that I have very broken sleep. Often I don't even bother going to bed at the moment because I wake up every two hours and this wakes hubby and it's not fair because he has to go to work. Those nights I sleep on the lounge and wake up and go to the loo and then back to sleep and repeat. I pee a lot during the night also, not strange given the amount of fluid I drink. I think I would feel a lot better if I didn't wake so often during the night. If I manage to get enough sleep -- even though it's broken sleep -- I don't feel too bad. But if I only get two or four hours then the following day is going to be dreadful and will probably trigger a severe migraine or my erythromelalgia will be made worse. Stress and sleeplessness are two things I have to improve on somehow. Not letting myself get so stressed and somehow or other adopting a good sleep regime. No one has yet told me how to do that. Quote Link to comment Share on other sites More sharing options...
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