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Can't Keep It Together


scarfgirl
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I've felt puny ever since I went hiking with my dad. Texted my blood pressure and it was consistently in the low 80's systolic. Dr. put me on florinef and it's slowly rising but I still can't seem to get it together. I have a fairly simple schedule: Wake up, shower, apply lotion to face and arms, exercise for 30 minutes, watch Desperate Housewives for 3 hours on Lifetime channel. Not exactly a strenuous schedule and yet it's too much for me to handle.

I'm so frustrated. I feel like my brain and body are completely discrete entities. Yeah I'm tired, and a bit dizzy sometimes, but I could still get things done if my brain would just let me focus on ANYTHING. Anybody understand what this is like, or have any suggestions as to how to fix it. I can't have anymore wasted days.

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Hopefully the Florinef will make a big difference, but it takes time (at least a week) and its all individual.

It takes quite a bit to keep me upright (0.4/day). I blindly followed my physician with that dosing and it has paid off in grand ways.

If anything, give it an honest try. It has made all the difference for me. Before the Florinef, I could not sit upright in bed for more than 60 seconds. To even get diagnosed, I had to have special help to even ambulate and you can imagine how grueling the testing was. I couldn't tolerate sound, light, or food and I was in severe malnutrition lying in a dark room until I was admitted by my, then new, doctor.

Florinef turned it all around and within 1 month I was able to travel by plane to Mayo. Two weeks after that I was working 3 hours per day and full time in another 2 months. It has been an absolute miracle in my life. I have had tilt tables on florinef that were normal and then tilt tables off of florinef later (went off all meds for a test) that had me right back at 155 bpm.

I am here to testify that it works for some like me and I hope that gives you hope about your situation..

Kits

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Oh I think the florinef is working and I'm heartened that it did so much for you. I guess I'm just frustrated that I can get so weak so quickly and that it takes so long and so much hard work just to build back up to where I was. My ultimate goal is to be able to live on my own (living with folks now) and at this rate I feel like I'll never get there. After so much hard work I thought my goal was in sight, but after only two weeks of feeling like crap I'd now be happy just to shower and feed myself regularly. So discouraging.

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It is an incredible amount of hard work! I often think that if more people had POTS that the world would just simply come to a standstill because everybody would have to go lay down! It really seems impossible sometimes.

I have bad days and I know what you mean. The progress is so very slow. Sometimes the smallest thing can be so exhausting and it would be funny, except that after a while of these things it can really drag you down. Its all one step at a time, no matter how small. I once belonged to a gym next to my apartment complex. For nearly a year I would walk there, not go in, and walk home. The 10 min walk was all I could do and I wasn't well enough to spend any time inside at all! Seems silly now, but that is where exercise started for me and it took a long, long time.

I just know that for some people, things improve. I've heard it from others in this forum. Dr. Low said patients improve in the period of 3-5 years, if they do, and then it levels out and there isn't much improvement. I found myself improving at 5 1/2 years. Suddenly one day, the nausea started to decrease.

Don't give up hope. It's like re-learning to walk.

Kits

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This is my 8th year with it, so I've kind of given up on improving. :)

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Guest tearose

Did you ever try compression? These serious panty hose are the only way I make it through my day. They have helped more than anything else!

I understand your frustration. After 19 years I still have hope for better. Just try to be more creative with ways to manage in this one day. Then over time the good days seem to increase in number again.

hugs,

tearose

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