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How Often Are You 'well' Or Sick?


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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?

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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.

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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 :)

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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.

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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%.

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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.

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