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tired of laying down


glimmer
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Hi. I am a new member. I have been diagnosed with POTS. Sometimes I am in a remission. But when I'm not it's awful. Lots of time I lay down which is what I've done lately a lot. I have no choice as I am exhausted and my med doesn't seem to work too well anymore. I take Florinef. It gets very lonely. I have also been reading what you all have been posting for quite a while. When I found your website I thought I was dreaming. Like it was too good to be true. It seems like lots of you have lives of some sort even though it isn't easy for you. Is there anybody like me who spends months on end needing to lay dow? I have terrific brain problems like fog, etc. and that alone is very debilitating. I feel like I have an infection all the time. Like a flu. It's worse when I need to lay down so much. I don't even have the focus to read. Sometimes it's exhausting just to carry on a conversation. This all came on so fast. I was visiting a friend and of a sudden I had to lay down. I felt really funny all over. This was several years ago. My friend took me to the doctor and my heart rate was way up 160 and my blood pressure was way down when I stood. I felt awful. It took three years to get a diagnosis. I was able to get on disability but what I really wanted was to make something of my life. I'm almost 30. I swear my IQ has dropped 30 or 40 points. It's scary all the time. I am afraid I'll get worse. I don't know how much worse I could get but I am afraid. This illness seems to have a mind of it's own. There's nothing predictable about where it will take me next. But I don't know anyone like me who has to lay down so much. When I stand I have orthostatic problems. I can prepare a quick meall for myself but then I have to lay right back down. I guess I'd like to know if I am the only one who lays down for months on end feeling like crap and feeling scared. Thank you.

Glimmer

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Hi,

Welcome to the Forum,

Some of us have a "normal" life, others have an "adjusted" life. I have been a couch potato for 4 years now. I used to be a workaolic. It takes time to find the tricks, good medication and your limits but perserverance is important.

Ernie

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Hi Glimmer and Welcome!

I am so sorry to hear that you are having a hard time. I can really feel for you as I have been on bedrest for the past 5 months. I stand up...I pass out. Here is the advice I can offer but it you read my past posts...I am having a hard time dealing with this as well.

1. Exercise your legs as much as possible while in bed. This helps to keep them conditioned.

2. Drink lots of fluids.

3. Keep in constant contact with your doctors.

4. Keep a journal (I feel this helps the Doctors since I have such a bad memory).

5. Ask for help!

6. Finally...Keep coming to potsplace.com. The people on this site are wonderful and when you think you have reached your breaking point...they will always bring you back.

I will keep you in my thoughts and prayers.

Susan

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sorry to hear you are having a such a rough time, i'm bedridden and have the brain fog very bad and the flu feeling, i can relate to the unpredictable aspect, i never know whats going to hit me next and how bad it will be, everything changes suddenly, wish i had an answer for you, just know that you are not alone and there is support here,

Radha-27 female

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Hi Glimmer, Welcome to the site. I know it is tough to try but even moving around in bed can really help. I haven't been stuck in bed for about 6 months now, but I never have enough ohmpf to get much done. I spend most of my time playing with my kids(son Andrew, 10+, Daughter 7, Lorrie). My husband is my caretaker and also suffers from major depression and post tramatic stress from a terrible childhood. He does most of the house work and helps me when needed. I find that the symptoms I suffer from are "cyclick" and boy the "down tie" is rally tough. I hope that you can find some help. I'll pray for you.

Blackwolf-32 yrs old POTS/OH(orthostatic hypotension) 4 yrs, Fibromyalgia/chronic fatigue syndrome 10+yrs

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Glimmer, I have spent a lot of time where you are. I felt like rejoycing on the day I got enough energy to make it to the living room... So I could lie on the couch instead of in bed! Keep coming here, this place is a great source of support.

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Guest GayleP

Glimmer,

I have cycles when I can't do much but hang out on the couch. And other times when I can at least go out and do a few errands. I agree with you, this illness is unpredictable. You might be having a bad period right now and will start doing a little better at some time.

In the meantime on your really bad days try to remain upright as much as you can and try to move around a little. Also someone mentioned keeping a symptom journal. I do that and find it really helpful. I can track my progress or if I'm getting worse and it's a good thing to bring to doctors. Plus I can see if anything makes me worse or better.

Hang in there.

GayleP

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I know that this is easier said than done. Paradoxically while it feels better to remain in bed, in effect, from what I understand, you are becoming more and more deconditioned as anyone--even those without POTS--would become. That is why my doctor urged me to sit in a lounge chair with my legs up rather than to lay down in bed. Good luck!

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hi glimmer, the couch is my friend now. i just can't lay in bed as it kills my joints and muscles. i have really bad cycles too. seem to be having one now. something to do with weather and barometric pressures or something. hang in there, there are periods where things get a little better. and there are always good supportive friends here. hope you get thru this period quickly. morgan

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Thank you again to all of you who have responded to my situation and thank you Goldidance for your words about trying to keep from losing too much conditioning. I find that way, way later in the day like come evening I can sit up some and I do keep it in mind that it's important to not lay down constantly. I don't mean to sound like I'm babying myself but the earlier part of the day is tough (like before 7 or 8 p.m.). I find that if I force myself to sit up before evening then it feels like it too much exertion - like I've run around the block. If I get too tired from even the simplest exertion I lose ground- like I go backwards. So I'm afraid to exert myself in the slightest bit before the evening comes. It has been a long set-back this latest one. I do believe that I will re-enter a remission one day hopefully it's around the corner but it is scary when the simplest exertion sets me back so easily. Or so I believe it does. I don't remember feeling this vulnerable before. But I feel very vulnerable to going backwards. I also have had some sad events occur in my life recently and I am stressed about some other things. I try to do meditation and I listen to relaxation tapes but these efforts don't always counteract the negative thoughts and sad events. I can clearly see that these things make me worse and maybe this is why I've had such a long setback. Does anyone else experience a corrolation between stress and/or sad and getting worse? How can I not feel stressed when I'm so afraid of never getting back on my feet which is maybe what my deepest fear is. Fear is the worst thing to have. I think sometimes I am my own worst enemy because I have this fear. Talk about a paradox!!! I want to be better. I fear I won't get better or that I'll just go downhill. And yet I know this fear must be making me worse. And if I knew how to click one of those yellow, round faces into this long diatribe I would click in the bewildered face because I feel so puzzled at this whole dilemna. How can such an awful thing happen to so many of us? Sorry I've gone on so. It just feels good to ramble and vent. I hope I'm not bringing anyone down with my rambling.

Glimmer

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Welcome Glimmer.

I also have gone through "down times" lasting several months at a time and yes not being able to get out of bed. But strangly enough by late in the evening, I would feel relatively better, only to see once again I was totally wiped out the next morning. It went on for weeks/months and it's hard to say what works each time, but I did and do gradually improve.

I also do lots of meditation techniques, in one of my "good spells" I actually produced some CDs. If you want to download any of my 10 minute mediations, just send me an email (which ofcourse applies to any of our POTS familly) and I'll send you a free download link. www.coolkarma.com

During the complete bed "rest" stage what I found helped was to keep a journal so that I could track my progress. It's sometimes hard to see when it is so small, and the reality is our worse times feel as bad as ever, so it's even harder to see improvement. I took a stop watch and would track how long I could sit up in bed unsupported. At first it was only a minute, then I felt exhausted. But eventually I could sit up and play a little solitaire. So I wrote that down. Weeks later, I was able to stand and walk to the front door to get the mail. I know it doesn't sound like much, and it's really hard for us to pat ourselves on the back for what seems trivial to so many people. But it IS a big deal for us and we should be proud. So I'd write that down and track that too. It helped me to see progress, even if the tasks seemed insignificant.

When I did feel "better" in the evenings, I tried to do more. Get out of bed and fix dinner when I could. It made me feel "normal" and helped my spirits.

The compression stockings helped a great deal as well. But ofcourse I was so weak it was impossible to put them on myself, so my husband would help and it took a really long time. But they helped me to stand for short and not feel like I was going to immediately drop.

It's hard to make sense of our "down time." To see it as a special inward enlightened journey. But through this journey we do learn so many things ... about our own inner strength, about compassion for all living things, about our connection perhap to a larger community or spirit. This is our healing adventure and though we didn't sign up for it, we have at least found some fellow pioneers that we can share our travel stories.

Thank you for sharing your story and letting us share ours with you.

EM

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