Struggling With "good" Days...

[westernmass]

I've had three or four good days in a row now. This is unusual for me. Although I don't have some of the really extreme versions of symptoms like others of you, it is rare I ever feel "good". So I should be loving these past few days and feeling happy and grateful....right???

I'm finding myself feeling kind of down about them! Almost resentful! Like I'm used to living with the pain and fatigue and nausea and dizzyness... What am I supposed to do with good days? LOL. Part of me gets all anxious like "is the pots gone finally!?" But whenever this has happened in the past I've ended up overdoing it (by day having a coffee or a drink or doing too much at the gym) and crashing. So I've been taking it easy. I feel scared I won't have these days and angry that I don't have them all the time like I did pre-pots. I get scared tomorrow will be doubly worse to make up for today being good. And I even get scared that if I didn't have pots anymore... I'd be even more lost because the dx as difficult as it is still gives a name to feeling so terrible. It's these days where I question my sanity ("am I really sick?") even though I KNOW I am and have had all the tests, etc to show for it.

And then I get so frustrated with the lack of answers, lack of a game plan to get better (other than h20, salt And grade exercise) and I get upset that my doctors don't have much of a plan and BLAH!!

Geez I'm sulky today! I believe this is my first rant here. I apologize if I sound ungrateful- normally I'd kill for "good" days. Can anyone relate or am I just sullen and sulky and need to snap out of it?

[Katybug]

I totally get what you're saying. I woke up with a migraine on Saturday, but managed to get rid of it and then I felt great (I sometimes experience post-migraine euphoria that makes me feel like I could run a marathon.) So, I totally over-did it. Then, yesterday I woke up with a mild migraine again but no big deal right?...WRONG...At around 11:30 I started to shake, I thought it was my blood sugar so I managed to get to something to eat and to sit down at the dining room table...I found myself slumped over said table about a 1/2 hour later. I managed to then make it to my bed where I was quarantined the rest of the day because any small movement made the room spin and the hot flashes and sweats start again. It turned out to be one of the worst acute attacks I've ever had. I've never been out that long before and I was sitting when it happened. So, today back to just my normal brand of bad.

It is so hard to have to choose between enjoying those good days knowing that you will pay for them or just limiting yourself so you don't trigger an acute attack. But, all in all, I'm glad I enjoyed Saturday. I might have been really sick yesterday anyway, right?

[looneymom]

I love seeing my son have good days, it makes up for some of the really bad days. He seems to have more bad days on the weekend, so I really try to watch his activity level on Thursdays and Fridays. However, I can't control the weather fronts in Oklahoma right now, so some Saturdays and Sundays are just bad. He does exercise everyday for the same amount of time, right now he's up to 25 to 30 minutes a day. POTS is so unpredictabe, we just take it one day at a time. Be thankful for the good days and set limits and goals for yourself. When you reach a goal, it shows that you are making progress, no matter how small the goal is. Hang in there and just don't over do it.

[Relax86]

I'm feeling about 80-95% recovered/recovering. I've re-read my posts and I see that I change that number...not meaning to misrepresent myself but I think it depends on the day. I also feel like my tolerance for symptoms is so much better that what I now consider a good day would be crap for a non POTs person. Seriously??? We tolerate a lot!!

But I also worry when the floor is going to drop out from under me. I make every effort to live in the moment. Knowing that some of the folks on this forum would love just one day like mine. But the fear of going backwards, or symptoms hitting my like a rock constantly creep into my head. There was no answer as to why it happened, I'm not 100% sure how I got it to subside.

Just wanted to say that I relate to mixed emotions with good days. Good luck to all

[troythe8th]

Try not to live in fear of tomorrow to the point you cant even enjoy today. I havent had a good day in a long time. I use to have a good week or two at a stretch but things have progressed. A good day for me is when i decide to do nothing and sit on the couch all day. Its not a good day but it isnt worsened by activity that drains me so easily.

Take advantage of the good days when you have them and if tomorrow rolls around and you find it hard to get out of bed a function as you did the day before ride the tide of the good you had the day before and reflect on the enjoyment of the things you were able to do. Depression plays such a huge part at least in my illness dont let it control your good days.

Good luck and positive thoughts to everyone.

[k&ajsmom]

HI, I know myself, its hard to get excited and appreciate a good day or moment even, because we are in survival mode and its hard to switch that off and even harder to switch it back on once weve let our guards down. I had a good"ish" day today although not functioning I still feel better than I did 2 days ago and I wouldnt acknowledge it to anyone aaround me cause I was scared it would disappear and then Id have to explain I feel bad again to everyone and I get tired of hearing myself say it. ugh

I still think Im grieving it a little, I thought I had outgrown this and then it hit me in my 30s when I have too much to do to be sick and it laid me out cold....SOmetimes I think Id be happier if it was something more serious but could be fixed with a medicine or a surgery or something.I feel like a lab rat and I get really upset that tommorrow this "lab rats" experimental medicine may not work. My daughter has a concert tommorrow but I am terrified to go, even after having a good day I would still be becase the nature of this condition is just so unpredictable...anyways, rant all you want, I think I just did quite a bit myself...lol thx for the post, it makes me feel better Im not the only one feeling this way, even though I hate that do as well =(

[Mytwogirlsrox]

Western--- I know exactly how you feel. Even though I have, by far, more good than bad days now.. Im still anxious about the future. One thing to keep in mind is that we can only worry about this right now, the future is so uncertain---

I'm really hoping that this is the start of a new phase of POTS for you. I know for me, I started to have a few good days, then a few more till now I'm 99% good days! It just took a lot of time to get to that point and accept that a good day didn't mean a bad week

Good Luck & Take Care

[brethor9]

same here..thought with my new MCAD protocol I would be cured ....yeah NOT!...it's like being stuck on a really bad merry go round and you just can't get off! Stopped being fun along time ago ;( I agree with others no matter how much it scares you though and worries you...you cannot let this illness control your life because then it wins. I have been sick with symptoms since 2007 and completely debilitated since 2011 and I still have a hard time adapting to this new life......its like living with a sleeping bear all the time....have to be so careful....but in saying that I am realizing that we have every right to enjoy the good days...they are so few....and not feel any guilt or think that we don't deserve it somehow or stress about the 'what ifs'. Living with this illness day in and day out we all deserve a gold medal

[HopeSprings]

I'm having a good couple of days myself. Yesterday I took my daughter to school, did some Christmas shopping, picked her up, took her for a little bike ride, made dinner, and played a board game with my son last night. I felt so happy and thought to myself, look at all I can do when I'm feeling better. It might not be a lot by normal standards, but for my POTSie self, it was a lot. I usually get these better days the week before my period, which I can't explain, but if I could bottle whatever it is, I would. I'm grateful for the good days and take great advantage of them. It's reassuring because it tells me my body knows what it's supposed to do, but it's also frustrating because I can't figure out why I can be semi-functional one moment and then disabled the next.

[westernmass]

Thanks everyone, I really appreciate the support and stories.

I think the thing I struggle with the most with pots is the uncertainty of the future- some people recover completely, some get better, some stay the same and some get worse. Science is lagging as far as finding underlying causes and treating accordingly. I struggle with this because I hate not knowing whether to accept I'm sick or fight or not knowing if I will be better for a month or a day or forever!

Anyway, once again I do appreciate the support. I don't want to let pots win or to let it make me bitter. You all are wonderful and I wish you all some good days-- actually I wish you all good health in general!