Almost Convinced Myself I Was Normal, For Awhile.

[Tuesday]

I've been down lately because over the winter I had almost convinced myself I was normal and healthy, for awhile.

My blood pressure was up, no more dizzy spells, and I had gained some weight so I stopped taking my midodrine and fludrocortisone. Stopped the salt tabs and constant water intake. It was like I was living in a dream. I felt well, energetic, healthy even. I almost convinced myself that all of the illness I'd been through before was just in my head. That if I kept up a positive attitude, ate right, exercised, I'd be healthy.

Now summer is approaching and I feel like I've fallen flat on my face again. Tired, dizzy, migraines. Feeling like crud all the time.

In addition to being physically down, I feel so disappointed in the unpredictability of my health. Sometimes I just wish I felt bad all the time, and didn't have to cope with being teased with days where I felt normal again.

[lieze]

It's good to hear that you had a bit of a break there but I'm sorry to hear you're feeling badly again.

I know what you mean by the unpredictability.

I have felt pretty decent and thought I was controlling things by watching my diet and not getting into anything that I react to.

The POTS though has snuck through a couple times and made me feel really crappy and I've felt very discouraged and as if there is no way I can try to work under these conditions.

It makes me very sad, I'm not sure what we can do but just try to cope and accept.

[janiedelite]

It's been awhile since I had a really good day, but occasionally they do happen and the first thing I think about is going back to work (I really miss my job ). It's great to make plans for the future, and I understand where you come from when you say "I almost convinced myself that all of the illness I'd been through before was just in my head." Try not to be frustrated with yourself. You have no control over what your body does (other than resuming meds, salt, fluids, etc). It's not your fault that you have an illness. There's nothing you could have done to prevent it. And you certainly know that if you had a choice, you'd happily walk out of this dysfunctional body and back into the healthy body that you miss so much.

My mom is ill, and I try to think how I treat her especially when she's not feeling well. There's no expectations, no guilt, but I just wait with her until she feels better. That's the same type of grace that we need to give ourselves.

[MomtoGiuliana]

I know it is tough. Relapses or flare-ups are part of POTS for most of us. The great news is that if you had some really good days, you likely will again. hope you feel better soon!

[hilbiligrl]

Im in the same boat. I'll have a few good days, and then my mind makes me think im ok again, and then you forgot for a day or two about how bad these diseases are.... then, here it pops up again and again. Reeks havoc on my mentality bad.... it's a horrible tease for me. For a few days im planning for the future or thinking, yey, i have some functionability... then a relapse hits and im reminded again and the mind games it plays, well, i just never win. It's horrible going back and forth.... im still not use to the back and forth.... seems my mentality isn't either.... lol.

Wishing you lots more ups than downs.... but find solace in that this seems to be normal for 'us' and many of us here go through the very same. We feel your pain.....

well wishes

tennille

[HopeSprings]

I think the beginning of summer like weather is throwing a lot of us for a loop. It must be very disapppointing to feel bad again after having a period of normalcy. It's like God, I just want to leave all of this behind me and move on with my life, right? It's really great though that you can have better days. I still haven't found a way to do that. Maybe you can take comfort in knowing that it is possible for you to feel better - and hopefully one day that will be permament. (((hugs to you)))

Janie said: My mom is ill, and I try to think how I treat her especially when she's not feeling well. There's no expectations, no guilt, but I just wait with her until she feels better. That's the same type of grace that we need to give ourselves. Beautifully said.

[futurehope]

The way I deal with my condition is that I realize my body is malfunctioning. Having a malfunctioning body does NOT mean that I won't have good days. I have many good days. Sometimes, there are factors making it a bad day, and I am reminded that my body is malfunctioning. But, since I do not look at myself as cured, I can deal.

I suspect strongly from reading your post that you will have good days again. After all, you've had them before.

[Kyler]

I feel the way that you do about my poor boy. I almost forgot that he was sick this winter - other than reminding him to take his meds all day it was almost like normal. I didn't have to take his BP and HR to make sure that he was OK, he didn't miss ANY school for 3 months, and he could do anything that he wanted to outside without coming in in a panic feeling like he is going to die from being overheated. Even though I prepared for it because it happened last year, It hit me very hard yet again as I watched my baby boy be let down by his broken body. I started to despise spring because that is how it starts and it just goes downhill from there. I laid on my bed crying, mourning the loss of my son's childhood for the second year in a row. I wrote a poem about it and that helped a little - I will post it on here if I can muster the courage - it makes me cry every time that I read it. I just had to vent my frustration at the devilish heat of summer. I am surely thankful that he had some good days but just like all good things, I long for so much more for him. Praise the Lord for giving me the wonderful, loving, and positive young man that he did. It's so hard - I feel for everyone on this site that suffers from this disabling frustrating illness. Every time the heat comes back and he gets sicker it almost feels like starting over from the beginning of the illness.

I am working thru the pitty party as I do several times a year when his condition changes. I am thankful that God comes with me to these parties.

Hang in there tuesday and everyone else - Fall will be here before we know it.

Serena