Always Hard To Function..

[erikainorlando]

I am really having a good day!!

I am grateful for these days when I don't feel "like I am gonna die". I have not felt this good for this long in a long long time. So I am happy. But I need to ask: am I the only one who feels so ill all the time? Weak, sick, can't breathe well, hit by a bus...etc. even during my good hours I am stilll so obviously not well. But I read about folks on here who can do all sorts of things and I wonder how many are soo soo ill wilth this?

Just checking..

Erika

[skyblu]

Youre not alone. I don't feel well most of the time. It's usually not so bad that I can't go to the store around the corner or run a few errands. But it's always a struggle. Some days are much better than others although I have very few days where I feel "normal".

I'm glad you're having a good day today.

[Sophia3]

Always most difficult to function here, too...after 19 years it's worsened but you learn short cuts..and coping.

Stinks though. I am glad you are having a good day....wonderful break for us.

[Maxine]

I'm very simular to skyblu in how I function. I love those days when I feel almost normal.

I have exercise intolerance, so any exercise has to be done in small bits.

There's times I feel pretty good and I want to go out and do everything, but then when I do my switch goes off if I don't pay attention to the warning signs my body gives me.

Today could be better------this virus I'm fighting is making me cough so hard it's beating the back of my head and neck up, and I can actually feel everything crunching and moving -----------------it's so hard to explain this-----everything is just too mobile--- .

I hope you have more good days coming------

Maxine :0)

[lissy]

Hi,

I feel sick 98% of the time I have seen some improvement since the weather is changing, I really forget what normal feels like... like Sophia said about the short cuts you must learn those. My hardest thing is just coping with the limitations I find it hard to accept and I push myself alot to feel half normal I guess I need more time to adjust . Anyway you are not alone.

Lissy

[toddm1960]

You're not alone at all.........if I'm awake 16 hours a day, I have to sit for 15 and a half of those hours.

[Notgivinup]

When I'm in a POTS hole, everything is a struggle. I have to force myself to get out of bed. I have to force myself thru the day, all the while feeling like ****. It's extremely hard even putting my 5 year olds shoes on. I'm exausted, dizzy, nauseous, and can't think. It's a terrible way to live. I can't accept it. I won't.

Thank God, my latest meds seem to be working(antihistamines), but I still don't feel good or normal. I'm still very tired, slightly dizzy, just generally not right. But a LOT better than before. It gives me hope.

Glad you're feeling good!

[kayjay]

I never feel good. at the least I always have a headache. I also have other pain. I always have awful fatigue.

I think most of us try to make do and figure out how to get the most out of our lives. I have to have help with cleaning. I can't go to the store alone.

I had one day last week ( election day) when I tried to cat pretty normal. My children were home and I went to vote (a 4 min drive) they wanted to go to McDonalds, and we stopped at the market to get dinner items and tea bags (about 9 items and my children are old enough to be good helpers. Anyway the next day I could not get out of bed to dress and take them to the bus stop. I had to call my mom and ask for help. As the day went on I did a little better... but if I pretend to be normal I pay for it the next day (or two).

With that said I make myself do yoga 2 times a week and I ride my recumbent bike for 20 min as I am able (my goal is 3-5 times a week).

Anyway you are not alone but I am sorry for your suffering! Kari

[potsgirl]

Yay for you, Erika! I wish you many more. I actually had a good day last week, where I almost felt like my old self again, and it's days like that that give me hope that I'll have more coming. They're pretty few and far between, though. I usually get out of the house for an hour or two four days a week, and then I have to rest the remainder of the day. I need about 12 hours of sleep a night but never get it. I can lay down and rest for an hour after lunch, I just can't nap. Overwhelming fatigue rules the majority of my days. You're definitely not alone!

Cheers,

Jana

[StacyRN]

I have to add my "amen" to everyone else... you are definitely NOT alone in feeling sick almost ALL the time... I had a really good day today, because I tried a Provigil and I actually had some energy and drive to go visit some friends! That is NOT how my days have been going normally... like potsgirl, if I am up much during the day it has to be sitting... and even then I feel lightheaded, tired, nauseated, etc.

This POTS diagnosis is new to me, and I had just finished 18 months of intense nursing school in May, then started a new job as an RN in June. In September I started fainting, and couldn't "push" myself any more like I'd been doing, because all the doctors said there was nothing wrong with me, so I just pushed through the days because I thought I "should" be fine, but then I just got floored with symptoms and couldn't function at all... and it's not getting better, which is scaring me alot. I haven't been able to work since Sept., and I don't know what I'm going to do. All that schooling, and now I may not be able to function as a nurse... anyway, I do understand the feeling sick all the time, and I just keep hoping to find something that will let me function as well as possible...

Are you working? I don't know how anyone can work with this! If anyone does, let us know how!

[Tammy]

Yes, you are not alone in this. I've been unable to function since September of 2005. I'm mostly in bed or in a recliner. There are days where I push myself and than there are most days, where it is literally impossible to 'push myself' to be upright for more than little spurts. I.e., unload the dishwasher... and I'll have to rest for an hour to get enough strength (for me, it's not fatigue - but severe weakness) to reload the dirty dishes, etc. If I play with my daughter sitting upright on the floor, within about 15 minutes, I need to again rest, etc. This is EVERY day, and I truly have not a "GOOD" day in what seems like forever.

This is not a mind over matter illness, because no matter how much you want to do something, doesn't mean your body is going to be able to do it!

[AndreaC]

A good day for me is being able to walk to the mail box and setting up for more than 15 minutes in the mornings and it is worse in the evening, and standing is out of the question unless I want to blackout. I am learning to do things with my kids that I can do either laying down or in the recliner. I have learned that if I push myself, I will pay for it the next two or three days.

Glad that you are having a good day. Praying that you have many more:)

[Brye]

I have good days and bad days. I have 4 kids that keep me going. I'm thankful to be able to function fairly well and for the most part I'm able to hide my symptoms from my kids. I HATE the fatigue. I think that's the worst part for me. Kids drain my energy to begin with and it's already running low. I want them to remember me as energetic and fun and some days I can barely get out of bed. I was also a nurse before Dx with POTS and right now there's no way I could make it through a shift. I'm still hoping that'll change at some point but for now keeping up with my family is my main focus. Glad you're feeling a little better right now. Hope that keeps up!!

Brye