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Posted

I try my hardest to keep my normal daily routine though some days it's just not possible and I have to camp on the couch! It's a tricky balance. I'm afraid if I push it too hard I'll crash, but if I don't push it a little bit I'll get completely deconditioned and weak and end up bed-bound (which sometimes happens anyways). Ugh! Never an easy answer!

Posted

I don't eat for that day I just drink as much as I can. Other than that I sit / lay on the couch...

Posted

I occupy my mind with either being creative (I make jewlery) or researching something or reading ----anything to take my mind off how I feel. I keep myself busy ---not physically ---but mentally.

Issie

Posted

I crash daily, so I spend 80% of my time in bed. However, I walk during the other 20% and I feel like death during that time. While in bed, I play with my newborn, watch Netflix, read a lot, research, chat with friends, play around with Photoshop Lightroom, etc.

Posted

got my son the nabi II tablet for christmas, it is priceless age approx 2 some earlier some later depending on the child I guess and are perfect for bad days when they want interaction with a human - my son loves showing me all the stuff I download and how he knows how to play, puzzles, numbers, words, it even reads stories if you are dizzy or short of breath and that's not an app you have to buy. most apps are free that I have (this is not an advertisement!)

When I feel well we play ninja, nerf sword fight dance or go for short walks.

Posted

I really can't be upright for any length of time on my bad days so I lay down, watch tv and get up when I have to. Any attempts to fight this are met with slurred speech, imbalance and severe problems with fine motor skills. I have ME/CFS so my bad days are mostly due to PEM.

Posted

On days I have to stay in bed for most of the day (like today due to severe migraine), I make sure I am propped up into a sitting position that is just slightly reclined. As long as I do that, I don't feel any worse orthostatically speaking than "a normal day". If I stay in bed and am closer to a flat position (still on at least 2 thick pillows) then I can feel it the next day. It takes me longer to acclimate to an upright position.

Posted

On the worst of days I stay in bed and sleep. I try not to do this to often because all the sleep ends up causing a really bad never ending headache the following days.

Posted

I watch tv. I watch shows that make me feel a little better about my situation. Like Mystery diagnosis, life in the ER, Dateline I.D, 48 hours. While I am watching those I like to google and try to cure myself :)

Posted

If it is during the week and I am feeling awful I will work from home. Sometimes if I am not keen on the thought of catching public transport I will get a cab home from work (I live close to the city so it doesnt cost much)

If it is on a weekend then I just lie on the couch (maybe watch TV) and put the air-con up (it is summer here currently). I don't push myself to excercise if I am feeling gross.

There have been times when I have had to cancel social events due to feeling ligheaded.

Posted

Lie in bed or on the couch. Try to distract myself. Get depressed from doing nothing and feeling restless and useless and energy-less. Try to force myself to do something, then feel miserable and lie back down....

Basically have fun.

Posted

Laying supine on and off through the day is my reset button. It is the best way to bring my bp down when it is up. Works faster then meds.

It is also a must after I've made a choice to over due when company comes or travel. I can crash for two to three weeks sometimes after doing those things. It will eventually pass if I rest long enough. I've accepted that this is what will happen and what I will have to do, when I make a choice to do the enjoyable actives of a social life. So I choose when I think something is worth it. Being with friends and family is always worth it to me.

Having a laptop on the bed with me has made things easier. Also because I'm not hypotensive on standing I'm still fairly self sufficient and can still drive and do errands. I just have to pace myself. Hard to stand and cook dinner the same day I have to go shopping for food.

Posted

On an extremely bad day, I will just have to lay down and try to sleep although, usually during the intense flare, I can't sleep. I may put T.V. on something I don't have to concentrate on, like on old movie or a talk show. If I begin to feel better, I may get my laptop and search things, play on my kindle.

Since I have met people here and on other sites, I have made some friends that are experienced on dysautonomia and sometimes I will call them for info and reassurance. They seem to be more helpful and quicker than calling doctors! LOL.

As soon as possible I will try and get up and walk, even if it is just to bathroom and back. And try to get into rocking chair with ottoman, I find propping up as soon as I can, may prevent my huge high surges.

On just "bad" days, I will try to push some and do things around the house, if my bp gets too high, I know I am doing too much, if it stays high, but doesn't climb, I will continue to do things to get it down. If it is morning I try and give it a couple of hours, drink a bit, try to force a piece of toast, then try and get up because mornings are always the worst. Sometimes when I have been in the house too much and I am able to walk, my mom will take me in the car. We will just do a short errand or sit in their house. A change of scenery can get your mind off things, but obviously you can't be really bad to do this.

Posted

Crash days feel definitively different than a dysaut day. I found out that long sitting is a posture that helps me. Lying flat on my back gives me some trouble, sleeping drops my BP and walking is a problem. Sitting up in bed with my legs outstretched seems to calm my system. Water, something to distract my mind, meditation/breathing can help. I reduce the size of my meal and I have a 'go-to' food that doesn't make me feel better but also does't hurt: Trader Joe's brown rice, a slice of cheese, a little chicken and some spinach. I might only be able to eat a bite or two as digestion is a problem in my flare - pain, bloating, OI, fatigue and incr HR after eating. Seems like I can't let my belly get empty but even worse is if I eat and get too full. Low light, low noise and no smells (have to throw the kids out of my room if they use their Abercrombie and Fitch perfume). I always can finish my work day but I limit all other activities and use weekends for energy conservation. Being sedentary always hurts me more than helps after a period of time. Finding the balance of rest time and when to get up and go is still a bit of a challenge.

Posted

I stay at home in my PJ's, relax, and don't overexert myself. I spend my time on the computer, researching, helping others (which keeps my mind off me), DINET, Facebook, Prayer, Bible study, reading, drinking plenty of fluids, eating only small amounts, and resting, but never napping, as that seems to wreak havoc with my sleep rhythms, especially with my sleep apnea at night.

Posted

If it's heart rate based, then I usually just stay in my chair on my computer and try to keep my movements to a minimum. I'll take a beta blocker too which helps to just chill my heart out a bit. I may have my husband assume cooking responsibilities if he's able to do it. We are both sick with POTS/CFS, so someone at some point has to push through symptoms. HA! Now if we are talking heat problems like during the summer time, then I crash and sleep for hours. There is no overcoming heat intolerance for me. Once I'm overheated, my mind stops working. I have to lie down or get cold baths. Most of spring and summer is me lying down.

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