Freaked Posted May 25, 2014 Report Share Posted May 25, 2014 Both during a flare and on average. During a flare, I get about 2 hours a day where I can do anything other than lie around, if I'm lucky. Most of the time, it's more like 50/50 lately, with early morning and late evening usually being okay and the middle being worse (shortness of breath and sweating are problems atm). Last summer/autumn, I would have whole days where I didn't feel bad unless I pushed myself. How about everyone else? Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted May 26, 2014 Report Share Posted May 26, 2014 Depends on what I'm doing. I do better on a schedule. The weekends are hit or miss. I can guarantee at least one mini flare a day lasting however long. At the moment, I ate too much at dinner and it's late and I'm uncomfortable. Went out today to two stores and I'm toast. Quote Link to comment Share on other sites More sharing options...
MomWithPots Posted May 26, 2014 Report Share Posted May 26, 2014 You can really never say fir sure..I work full time and usually have symptoms that I deal with daily such as a fast heart rate, leg pain, dizziness, etc. I do everything I can to prevent it though! I eat very small meals and listen to my body, if it seems like a bad day I don't push myself.Tmi alert, but I am a woman so I always have a big flare up once a month...just have to deal and be prepared Quote Link to comment Share on other sites More sharing options...
TCP Posted May 26, 2014 Report Share Posted May 26, 2014 I am pretty much unwell for most of the day and only get about half an hour to do things like wash/bathe and get dressed. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted May 26, 2014 Report Share Posted May 26, 2014 Cycles are horrendous Quote Link to comment Share on other sites More sharing options...
Freaked Posted May 26, 2014 Author Report Share Posted May 26, 2014 I agree about the cycle thing; ectopic beats and blood pressure spikes can be worse for me at that time of the month, or it seems like it at least. Quote Link to comment Share on other sites More sharing options...
griffism Posted June 3, 2014 Report Share Posted June 3, 2014 I tend to have one good day then several bad days. On the good days I can usually be up an about from about eleven until around six pm, after which I am exhausted and crash. On the bad days, it is hard to get out of bed or do much of anything. Quote Link to comment Share on other sites More sharing options...
Tuesday Posted June 4, 2014 Report Share Posted June 4, 2014 This is something that's really hard for me to define, because it varies so much day to day. I have days when I feel perfectly healthy. Those days are fewer now than they were about 7-8 years ago when I was first diagnosed. Most of my days fall somewhere in the middle: I'm tired, feel weak if I don't eat something every few hours or get enough water. I can work, but sometimes I need an extra cup of coffee to wake up my brain enough to be focused. I take my meds every day or I will feel awful. I have to watch what I eat or I will feel awful. Then there are days when I feel sick or would say I'm in a flare. On those days (or weeks) I'm flat out done. I can't get out of bed without feeling dizzy and about to pass out. Sometimes I'll wake up in the middle of the night with joint pain or stomach issues. I've had vertigo that kept me out of work for two weeks straight once.The balance of healthy/meh/sick days used to be something like 50%/45%/5%, but lately it's more like 20%/60%/20%. Quote Link to comment Share on other sites More sharing options...
Hearts Posted June 5, 2014 Report Share Posted June 5, 2014 This is something I have a hard time with too because how I feel literally changes from hour to hour or even minute to minute sometimes. I have constant changing symptoms and areas of pain non stop. It's like my body is constantly fighting to regulate every function so I have no baseline. If I do feel "ok" it may only last a few minutes or an hour at the most. I always feel unwell, at least in some area of my body, and it sure makes it hard to commit to anything or make plans. I rarely am able to leave home because of it. Quote Link to comment Share on other sites More sharing options...
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