Kellysavedbygrace Posted March 8, 2013 Report Share Posted March 8, 2013 I thank God frequently that the iPad was invented before I became ill w dysautonomia.There are some crashes- usually migraine related- where my pain, not just head but all over, is so bad I can't even watch something. Usually my breathing is so bad I can't do anything more than focus on breathing. (remembering to breathe and reminding myself that I'm not dying, this is just part of POTS. And that I will get through this.)Most crashes, however, I watch Netflix on my iPad and that is all I can do. Not enough strength to speak on phoneor function. Must be flat on my back which makes the iPad perfect.When I'm fatigued and need to lie down - or Recovering from a crash I can get on DINET, read books and research because I have more brain function- but not enough to do any sort of tasks.Sometimes I'm flat,sometimes head is elevated. As someone above mentioned, lying flat can make the migraine worse so when I'm having a migraine I try to change my position more.As another mentioned I have a hard time eating or drinking anything when crashing. I try my best to push salt and fluids but the worse the crash is, the harder it is. And it seems all of it stays in my upper GI area just sloshing around going nowhere.I spend about 50% of my time lying in bed. On average, two upright days w normal Dysautonomia symptoms and two days down crashing. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 8, 2013 Author Report Share Posted March 8, 2013 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.Your hubby has POTS/CFS as well? Holy smokes that must be hard! When I need things done and Im not up to it I ply my wife with caffeine and get her to do it LOL. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted March 8, 2013 Report Share Posted March 8, 2013 Bad days - I am the queen of the couch/computer. I learned the hard way that if I try to push myself I end up doing more harm than good, so I take it easy...Alex Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 8, 2013 Report Share Posted March 8, 2013 Used to try to push thru it as much as possible. Don't know if I just give up easier these days or if I'm getting worse, but there are now days where pushing thru is no longer an option for me. I still don't let myself lie in bed for an entire day ever. But the most I may be able to do is make it down to the computer and sit there for awhile. I also always make myself shower and get dressed as that's a fair amount of activity right there and keeps me feeling a little like "normal"- even if it takes me until 7 pm to get my "morning" shower accomplished. LOL Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 9, 2013 Report Share Posted March 9, 2013 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.Your hubby has POTS/CFS as well? Holy smokes that must be hard! When I need things done and Im not up to it I ply my wife with caffeine and get her to do it LOL.Yes we are both sick and neither of us can work. We were denied all state assistance as well. It's been very very hard times here.Any of you who have a spouse that's still working to support the family, be thankful for them!! Tell them you appreciate the hard work they do. Because if something would suddenly happen to them, then what? How do you eat? How do you pay bills? How do you do anything at all? ...That's pretty much what happened to us. We thought his problems were going to be temporary, but it's now been 4 years. Now we lost our health insurance, so I'm pretty much at the end of my rope. I need a miracle. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted March 9, 2013 Report Share Posted March 9, 2013 Oh my Dana! I can't imagine how hard that has got to be on the both of you. What state do you live in? There has got to be a way to get assistance but that is likely a long term process. I even needed help of a friend who has some legal assistant experience to fill out the papers and many months to get on disability. Do you live with family? have help of friends? I will be praying for a miracle for you and your hubby. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 9, 2013 Report Share Posted March 9, 2013 Thank you Kelly! I live in PA. We were denied due to a stupid technicality so now we have to hire a lawyer and go to court. We can't afford that, so we gave up on it.Our families have been helping us, but they can't help us forever. We have been selling everything we own. hah Quote Link to comment Share on other sites More sharing options...
issie Posted March 9, 2013 Report Share Posted March 9, 2013 (((((((((HUGS to you DANA))))))))))!!!! Know you're being thought about and hoping that something will happen to improve your situation and your health ---(and hubbys)!!!!Issie Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted March 10, 2013 Report Share Posted March 10, 2013 In SS law the legal fees are a set amount (determined by the federal government and not state) paid for by the benefits you are awarded only after you win. There should be no legal cost to you. Feel free to PM me if you have questions. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 10, 2013 Report Share Posted March 10, 2013 We were trying to get food stamps in PA. We were denied and the appeal process requires you to go to court. There's no other way. You can't reapply the same way.I've looked into SS and I never worked enough to have earned the credits necessary because I was already sick and I only worked very low paying retail store jobs. It's a lose lose situation.http://www.ssa.gov/retire2/credits3.htmI'm sorry this thread went off-topic because of my discussion! I'm done now!...haha Quote Link to comment Share on other sites More sharing options...
E Soskis Posted March 10, 2013 Report Share Posted March 10, 2013 What do I do on bad days? Hum....I guess it depends upon how "bad" the day really is. If the crash is a result of another illness (stomach bug, cold/flu...) then I know I have to go into the ER for evaluation and IV fluids, IV antibiotics, etc.... If the crash is simply because my disease is flaring a bit, then I can usually stay upright long enough to get to work to my desk where I can prop my feet up and work at the computer, chomp on midodrine, and gulp fluids like mad. If my blood pressure simply insists on dropping into the toilet, then I have to stay down in my recliner and prop my legs up, chomp on midodrine, guzzle fluids, and pray that the episode will pass quickly as possible. Quote Link to comment Share on other sites More sharing options...
kitt Posted March 10, 2013 Report Share Posted March 10, 2013 , Quote Link to comment Share on other sites More sharing options...
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