Daily Lives

[MandyBrook]

Hey Everyone!!!

I've been going through a hard week and have been stressing WAY too much, which probably isn't helping!!! I have this resounding fear in the back of my head wondering about the what if's. What if I get worse. Right now I am pretty functional. Is it common to get worse with time?

So, I was wondering, what are most of your daily lives like? What helps you to stay positive amidst all that you're going through? And, how often do you feel "good" in comparison to your flare ups?

Thank you!!!

Praying for us all!!!

Mandy

[MandyBrook]

Also, how many of you have NOT been hospitalized.

[sue1234]

I have never been hospitalized, even though there are many days that I think I should be! But, what would be the reason--I feel bad?...like, really bad? Unless I have the signs to show a need for the hospital, no matter how many symptoms I have, I just stay home. If I ever pass out(I am not a fainter), my husband is instructed to tell the medical personel to check my blood sugar for a low or check my cortisol and make sure it is not low.

My day is almost always spent sitting at home. I cannot drive. For some reason, I don't have depression from staying home alot for years. Sometimes I think that is a clue to my POTS basis! I don't have enough energy to clean house, and I don't trust cooking much, as I can't stand long enough.

I must have something else going on and paralleling my POTS. I am having more days of feeling really fatigued, sometimes to the point of feeling lethargic. My body just feels heavy when I'm upright. I have the heat surges sitting. I am having really bad cognition problems lately. Compared to a year ago, I have gone downhill. Compared to the start of my POTS 6 years ago, I have gone REALLY down hill.

[Hoosierfan]

Mandy, hang in there girl. I should put the disclaimer that I don't have POTS, just OH at times of stress, medication changes, pregnancy, etc. Normally, I am very functional and live a full, normal life (work 40+ hours a week, have two kids). Right now, I am in medication **** and so am on a leave of absence from work. When my OH issues flared up about 6 years ago (after mono), I started on a regime of Effexor and Florinef and was right as rain in about 3 months. And, I've had years of perfectly good health. My difficulty now is that I got in a medication mix up about 15 months ago that my docs are still trying to get me out of, but they will.

When I had mono and with this battle, I have battled anxiety and depression. What has helped me is to start daily meditating, keeping a log of what has gone right that day, and when the "what ifs" creep in, I've learned to turn them around. Not "what if I don't get better"...."what if I DO get better?" Not "what if this medication DOESN'T work"...."what if this medication DOES work?". I am VERY impatient, so these techniques have helped me pass the time while I've been recovering.

[tachyfor50years]

Good question, although I have seen something like it on this forum!

I have been pushing myself really hard over 50 years, at home, at school, at work, to look normal!

Yes, I have been hospitalized many times, one time I had difficulty breathing and my O2 was very low, so they kept me for 5 days and then discharged me with an Advair inhaler which almost killed me, I had a very bad reaction to it, I got better on my own after few days and nobody knew why I had experienced such thing (I mean low O2).

Another time I was admitted because my blood suger was very high, the doctor confirmed that I have diabetes, so he prescribed Insulin that back in my head, I was not confinced, anyway right after few hours, I was in the ER because my blood suger was only 20! ! ! ! !

I told the Dr. that I have been suffering from Hypoglycemia all my life but he never listened, and without any meds, I recovered, so I did not use the insulin any more. (because I was not diabetic in the 1st place).

If you ask me how do I do my daily chores, I will tell you: by keep pushing and forcing myself through %99 of the activities, I have to do a lot of efforts to brush my teeth or to type this reply!, so how about other things!

The way my body acts sometimes, always been like a puzzle for me and for doctors, extreme abnormality (out of nowhere) and disappearing all of sudden, but that was only some symptoms over the years.

[MandyBrook]

Hoosierfan--

In comparison to the stories I have read on DINET I am also high functional. I have three children under four years that I stay home with they are a blessing!!! Perhaps I don't have POTS, maybe just OH. What are the differences? I'm new to all this do I'm trying to figure out all the scenarios.

I've never fainted, rarely have lightheaded spells, my hands and feet turn red and burn upon standing for too long, I don't adjust to temperatures very well (especially heat, this causes the redness in the hands and feet almost immediately), I have hand tingling, and tachycardia upon standing (not always). Up until recently these were my only symptoms and they would come and go. Then a few weeks ago I had my first bad flare. I had adrenaline surges, lightheaded upon standing, feeling anxious always, easily overstimulated, occasionally feeling withdrawn, chest tightness, no appetite, tachycardia upon standing. It was awful! I began taking lexapro and within three weeks I felt back to my old self however, starting the fourth week the adrenaline surges started to come back with nausea and vomiting. Sigh... Does this sound like POTS or more like OH?

Thank you!!!

Praying for us all

Mandy

[tachyfor50years]

Oh I forgot to mention my last hospitalization! if that is Ok with you.

I went to a follow up appointment with another cardio, my pulse was 195 with BP of 201/102, so he put me on a monitor in his office and then diagnosed me with (A Fib), that is why he prescribed TIKOSYN (dofetilide) but he admitted me to a hospital for 3 days just to be monitored for kidney function and heart rhythm, which I did great during the stay but I felt awful afterwards.

Anyhow I did not take it any more due to the side effects, a year later I had a heart monitor for 3 weeks showing no A Fib, yes, it was gone on it's own! again another puzzle!

[MandyBrook]

Tachyfor50years--

Of course you can share!!! I am so sorry to hear of all the things you have had to endure!!! I will be praying for you!!! If you ever need someone to talk to or just vent to, please do not hesitate to message me

Mandy

[skiberthoud]

I have never been hospitalized. I've gone to ER a few times, before being diagnosed, but never stayed. At first I was not very functional - couldn't work and couldn't do much of anything except keep us fed and relatively clean . Over the past year I have made some really great gains and am functional most of the time (by functional I mean I can do what I "need" to do, and occassionaly even a little more, but still not working). I still experience ups and downs. Those "what if" thoughts do creep in. Sometimes it's when I'm in a "hole," wondering if I'll ever feel good again, and sometimes it's when I'm feeling well, wondering when I'm going to crash again. When I get like that I try to change my self-talk to something positive, or even just realistic. For instance, I have always had ups and downs, so when I am down I can tell myself that I've been there before and it will change again, like it always does. I keep reminding myself to just ride the wave. I also find that regular daily Bible reading and prayer are essential. I also try to do something for someone else (even just writing cards to those I'm thinking about). That takes my mind off me and puts it toward something rewarding. Journaling has been another really big help to me. It helps me keep grounded.

[Maiysa]

Hi Mandy,

I too have orthostatic intolerance, used to have a form of POTS for about 2 or 3 years and now have autonomic neuropathy and a lot more diagnosis. But my symptoms are somewhat similar to yours. My children are grown and out of the house. haha. But so grateful this didn't happen when they were too young, but it did happen in my sons junior year and it was hard on him because I was almost completely incapacitated his last two years of high school and was hospitalized 4 or 5 times since then for various issues. Anyhow, acceptance is the hardest thing for me and am still working on it. But I stay as positive as possible. I am always trying new things, just downloaded an app today for healing hypnosis and I love it. I do Healing Yoga on days even when I don't want to, just a little bit helps. During bad flare ups I try to write with an erase marker on the window that I have a view of first thing when I wake up that says, this too shall pass or something positive to remind me, this feeling isn't forever. I read lots of bible versus and positive quotes to keep me going. Most days I stay home, which is the opposite of my old me. Yesterday I couldn't do much and felt very very sick and had lots of pain. I slept. And then like today, I got up and took it easy, but putz around the house, wrote on my computer and was even able to go to dinner with my husband and meet the children for dessert. But I don't know what tomorrow will bring. For some reason in December for 3 weeks I was afforded the luxury of riding my bicycle several times a week. IT was amazing. But don't know what happened again since then, but I'm more hopeful because it had been 5 years and I used to be addicted to my bicycle and when that was taken away it was really hard for me. So December gave me some hope. It's a day to day thing. I used to have an amazing job, but not sure I will be able to work again, but we'll see. But I have an awesome family and have much to be grateful for. I count my blessings every day that's for sure. I see you have little ones. I am sending you good health so that you can keep up with them. They are blessings aren't they. OKay, Good health to you.

[bunny]

If I were you, I wouldn't worry about it getting worse. I'm not saying that to be flippant, but if you look over the posts on the forum, there's a wide range of severity. From those who've never fainted and just have tachy all the way to people who are bedridden. For the most part, the majority of people here generally seem to have symptoms that don't get worse.

As far as staying positive, after everything I've been through myself and seen others through, this isn't bad. If anything, life's quite good. And that's with me absolutely hating my job and having hit a ton of setbacks in life. As I posted on another thread, happiness is a choice. Sometimes it takes more effort to make that choice than others. And there are other times (dental work?) where I'll just set a countdown timer on my phone and be happy to watch the numbers decreasing. I also take time to find the joy in life's simple pleasures. Even just feeling the sun's warmth or watching a butterfly brings me joy.

Daily life for me is relatively normal. I work 40-80 hours a week. I've been on the road for work for ~3 years now. I've learned to pace myself and pick up on my body's signs and trends and react to these rather than wait for things to go wrong. Mornings and evenings are rough for me, as are hot showers and heavy meals. I do pass out, but get plenty of warning and usually exhaustion plays a role. In general, I just go on with life and work around my body's idiosyncrasies.