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I'm so tired of this!!


Sue
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I am so tired of this. I get two half way decent days and we're right back where we started from, actually almost worse. Started yesterday afternoon and today I can bearly sit here. I get so lightheaded and nauseaus. We finally decided to cancel our trip to Florida. I bet you know that makes me the hero in my family. I think everyone is sick of me feeling so bad. I have had to cancel so much stuff this year, I haven't even been to my parents in three months. Why?? Cause I just don't want them to see me like this. My dad is paralyzed from a stroke and it breaks my heart that he has to call me and ask how I am. :D I missed a whole season of soccer with my daughter, baseball is coming up and I'm betting we get to miss out on that too. This is my longest bad spell, will it ever go away :P

Just another feeling sorry for myself day. sorry to vent on you guys AGAIN!!

Sue

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Sue,

I am so sorry you are feeling bad but remember the good days are coming. About your trip, this is what I decide to do on our vacation that is coming up in a couple of weeks. My husband and I talked about this. If I have bad days and have bad spells then I will just stay in the hotel room and lay down and watch cable while he takes the kids out. He really doesn't like the idea but he agreed after I explained I wasn't gonna let this rob us of everything. Who knows tomorrow you could wake up feeling wonderful. That is just what I am gonna do, I don't know if it would be feasible for you. To me just riding in the car getting to see a change of scenery even if I feel bad makes me feel a little better. I know this is frustrating. I feel like sometime I am hanging on by a thread as far as my nerves. I even had a few really bad thoughts but I realized I was and got immediate help. Just hang on Sue maybe tomorrow will be better. I wish I was a fairy Godmother, I would start swirling my wand so we all would be healthy.

Paige

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Hi Paige

Yeah I think thats where I am too, I am calling my primary physician tomorrow. she is a family friend and I can talk to her. Even though she is totally baffled by this she is my age and we can relate. We honestly did think about not cancelling our vacation but we were going to Florida in our camper/we live in Michigan so we're talking a 24 hour drive. So we have now decided to camp around Michigan. The weather is not so humid and I can tolerate it. My sister is also going with us so I won't ever be by myself.

Thanks for listening :P

Sue

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Sorry you are feeling so down. It comes with the territory and it's something that took me a long time to come to terms with. But don't feel bad for cancelling your plans- I'm sure all of us here can tell you how many trips and events we have backed out on, and you have to learn not to feel guilty about it. At least you got a mini-trip oput of the deal!!

I used to get so frustrated because people would get impatient with me for not knowing if I was going to be able to make it or not, and never wanting to go anywhere or do anything. I finally told everyone who is close to me- look, do you honestly think that I don't WANT to do all these things? Hummpphhh!! All these things that I can't do are the only things I really want to do in life and I CAN'T!! I think it's so hard for others to comprehend. But that's why we are here!! To tell you that it's okay, and not to feel bad. Here's sending you many more good days in the future (to make the most of!)...take care :)

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Sue

I know your having a really tough time right now. I can completely 100% relate to you. I know everyone on this board can relate to how bad we feel.

I'm sorry, going to do a misery loves company post :)

The last few weeks have been worse than usual. I think because I was getting IV iron every week and then they reduced it to once a month, I can notice the difference. The brain fog and fatigue are back, seems like worse than before.

They also took me off my beta blocker last week, by the 3rd day I couldn't stand it anymore. As much as I hate my beta blocker because it makes my already low blood pressure worse, I can't stand not being on it because of the tachycardia (can you say caught between a rock and a hard place!)

I went to the doctor last week because my symptoms were getting unmanageable for me. I don't think he knows what to do with me anymore. He doesn't really want to run anymore tests of any kind but he broke down and is sending me for an MRI to rule out MS. I'm having a lot of problems with my vision bouncing vertically. He sent me to an ophtamologist but she said my eyes looked great and that it was some kind of neurological problem or MS.

I told him I couldn't stand the fatigue and brain fog. He suggested adderall or ritalin, 2 drugs I don't want to take. Give me more coffee over amphetamines, please. I suggested increasing the iron again.

I get in a (excuse the phrase) pissy mood. I reach a point of pure frustration about my symptoms and the lack of knowledge in our medical community. I get angry that there isn't more research or specialists that can answer my/ours questions and help me/ours with my symptoms. And I really get pissed when I work in the medical profession and they can't begin to understand the **** we endure. I think, that they think, I'm faking or something lame.

I've been trying to go see the movie Troy since it came out with a friend. He came over thursday and I was just too exhausted to get out of bed. He came back friday and we went, but I was so fatigued that it nearly killed me to sit there and watch that movie. I wanted to get up and walk out so bad. By the time he brought me home, I was crying from pure exhaustion. I couldn't even think well enough to tell him what was completely wrong with me, I didn't know myself.

It was exhausting just laying on the bed. Everytime I stood up my heart rate would hit 130. Everytime I sat down my blood pressure would drop below 100. It was in the 80/60 range most of last week.

Anyway, came home from the movie, took my beta blocker and went to bed. I got up Sunday and felt better so my friend took me for a drive. We went to the Painted Hills in Central Oregon. It felt so good to get out of this house and breathe fresh air. I got tired a couple of times and crawled in back of the car and slept. But it was so worth the trip.

There was one place where we stopped and got out of the car. It was a bluff that over looked a valley. I found a large rock in some tall golden grass off the side of the road and sat on it. There were loud cheerful crickets all around me. There were birds that were singing beautifully (I so wanted to take them home with me.) I felt the wind and the warm sunrays on my face. I watched the beautiful grass blow like a golden wave. It was the most peaceful, serene time. I didn't want to leave there.

By the time we got home I was back to the extreme exhaustion. I crawled into bed and had the best sleep that I've had in months. It might have been tiring, but what a great day that was for me. I'll remember that Sunday drive and how wonderfully peaceful it was for a long time.

I'm sorry to have made this so long. I know how your feeling. We push ourselves to get by every day. We need to push ourselves to go out and enjoy life a little bit, I know that it's easier to lay in bed but it's so incredible to see what were missing.

Feel better Sue :)

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I'm sorry to hear about your vacation plans. I cancelled mine as well. Every year we go camping Memorial Day weekend. It's a great adventure, but I usually end up sick and cold, our tent floods or blows away, and it wipes me out before I have to start the work week. We went to Florida in March and it was totally stressfull for me, the planning, the plane, staying at a friend's and being on their non-POTS schedule. I push myself every year to make these trips, and for right now it's just not worth it.

Staying home Memorial Day was fabulous. I cleaned the house, did laundry, and played with the kids at a nice slow clip. I even slept in a few mornings. I even had one of those moments when you look around and say, "Isn't life wonderful." I did get a headache, but I was able to fix it with water and a quick nap. And as the rain came down on our roof while tucked in my cozy bed I thought, "I'm so glad we didn't go camping:)"

Eventually I would love to have the energy to run around, take trips, and so on...but it's so much healthier for me at this time to just sit at home and relax. Try to look at this non-trip as time for yourself. Read a book, get a message, work on a project you have been putting off. Save that trip for when your POTS is not as symptomatic and you have more energy to party the night away:)

A side note: For those who have been following my other posts...I have 3 girls and am due again in October. I just found out I am having a boy and I couldn't be more excited! I also spent my weekend going through all of my baby clothes and little newborn outfits. The girls and I had so much fun looking through everything. I'm really glad we had the long weekend for such a special project:)

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Thanks for your responses, God always has a way of making me see my situation is not so bad.

A friend called this morning to see how I was doing. Her in laws both in their 50's have been recently diagnosed with cancer. The father has esophagus and stomach cancer, the mother ovarian, had a hysterectomy plus over the weekend and found it everywhere!! They had to cut her open from her tailbone around up to her chest. The father is going through radiation everyday!! My girlfriend says he barely has the energy to get up much less dressed and out the door. Her husband is an only child and works 80-90 hours a week. So my friend has her hands full right now. I wish I was well enuf to help her, (I am going to make some dinners), but I also realize that I could be so more worse off then I am. I just want to function somewhat normally everyday. If I could only get rid of the "dizzies".

Congrats on your pregnancy. Children are lifes more prescious blessings. I don't know what I would do without mine!!

Thanks again

Sue

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"It can always get worse." At least that is what I tell myself. I've been sick all week long not able to do anything but lay on the couch. I was dozing off and on this morning and I heard my five little brother say to my Mom, why does Alicia always get sick and throw up? Why can't she play with us anymore? How do you explain POTS to a five year old. I had a summer class to take this summer to lighten my load of classes in the fall and i'm too sick to go. I'm working on getting FMLA paperwork filled out, because I am precariously close to losing a job that I love, but I run into problems every step of the way, or so it seems. I understand being fed up. There really are people out there who have it worse than we do. My uncle who has had problems with his leg since a helicopter crash in Vietnam, was rushed into emergency surgery a week or so ago because he couldn't feel his legs. He then got an infection in his blood stream and almost died. Whenever i'm having a bad day I try and look at the big picture, and be grateful for the good days and the blessings that I have in my life ;) May the joy you find in your good days get you through the bad ones :) Feel better Sue!

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