jenwclark

I'm so sorry he wants to put you through that again. I just heard my sister-in-law's report on her ttt, which was considerably worse than mine, and it just seems like the doctors should know a ttt is not something to be casually inflicted on a patient.

Hope you can talk him out of it.

spike

Boy, does that sound familiar. I've been trying to build up my endurance for the last couple of years, and it just feels like the results are completely random. I'll be going along fine for a few weeks doing regular light exercise, then suddenly it starts completely knocking me out. Then, after two weeks of doing almost nothing, suddenly I have a single day when I can do more than ever. Then I'm back to my muscles feeling weak when I'm just lifting dishes back into the cabinet.

It's so frustrating, because I'm sure my lack of conditioning is part of the reason I feel so tired. But if there's some magic balancing point where I can build up my strength without making myself sicker, I haven't found it. I'm still trying, though.

Overall, the ups and downs do more or less even out, so I wouldn't worry too much about a downward trend just yet. When I'm recovering from being sick, it takes incredible patience to get back to my "normal" level of activity. It can be really draining emotionally.

So, I'm not sure I have any constructive advice, but I wanted to let you know you're not alone.

Hang in there.

spike

I have no idea how they choose. Good question.

I've taken Zoloft off and on for years, but I started it the first time more than 10 years ago, when the only other SSRI on the market was Prozac, which made me nauseated. As far as Effexor goes, if that's really the best med for you, it is possible to work around the withdrawal problems. Just bear in mind that you'll want to taper off very slowly. I think a lot of us who had problems were taking it before anybody knew that could be a problem. I was on it within the first year after it came out, and very few people had experience with going off.

Whatever you take, I hope it helps.

spike

looks like fun! It's good to see you up and around enough to do some crafting. Do you make all these things up?

spike

Just one more voice saying it does get easier with time. Right now, you're aware of everything you're missing, but as you adjust to your limitations, you start to be more aware of what you still have left. Therapy can be really helpful; just make sure you have a therapist who believes you're sick!

It is possible to get disability for this. There have been discussions about the process on the board. Try searching the forum, and check the FAQ post up at the top of the page for a bunch of links.

Good luck with everything.

spike

Yay! So glad you found someone who understands. I hope he helps things get better for you.

spike

If this is a new symptom, you might check with a doctor and see if you have an ear infection or something else affecting the inner ear.

I hope it gets better, and I'm glad you didn't fall into the oven!

I am often able to drive, but then I've never actually fainted. For me, the problem is brain fog. As mentioned above, one key is learning to tell when you're likely to become symptomatic. I seldom drive more than 15 minutes from home, and I avoid heavy traffic and high speeds unless I'm feeling exceptionally good, as these things make me tired and the fatigue can bring on brain fog.

spike

I'm sorry you didn't get more answers. Yes, it's important to rule things out, but it's such a relief when they can finally tell you what IS wrong instead of what ISN'T. I hope the Holter gives you some information.

Sending you good thoughts.

Spike

I'm so glad to hear about your appointment. Dr. Grubb sounds wonderful, exactly what I was hoping for. I'm seeing him in January (after an 8 month wait), and I'm glad to hear he's worth the wait. I'm sorry to hear your prognosis isn't so good, but I understand what you mean about the relief of just knowing.

Good luck, and take care of yourself.

spike

But just remember THIS: His behavior had NOTHING to do with you. Usually guys that behave like this ALWAYS find an excuse to justify their behavior and blame somebody else.

Amen to that!

My guy like that made a big deal about what a burden it was dealing with my health problems and my limitations, but he was willing to do it because he loved me so much, etc, etc. Then, a few months after we broke up, he started dating another woman who was disabled, unemployed, financially dependent, and had a very restricted social life. Guess it wasn't too much of burden, after all.

It's so easy for us to believe the problem is with us. But the next guy I dated after him was an absolute sweetheart who took care of me without resentment and appreciated the things I had to offer. Keep your eyes open, and you'll find the right person when you're ready.

I might give back to medical care more as a patient than as a nurse, if I can help raise awareness about POTS (I plan to revisit every doctor that told me I was crazy!!)

Wow! I never thought of it that way. Thanks!

I would go see the EP, too. Going to see a new doctor does not mean you're committed to doing everything he suggests. You can find out what his approach would be, and if he wants to redo tests you can find out why and decide for yourself whether it sounds sensible. Getting a new perspective never hurts.

Does anyone else find that they do that? To just get so fed up with POTS that you turn to something fathomable to blame your anxiety on?

I think EVERYBODY does that sometimes, even if they don't have POTS, and parents are the most logical target. It takes a lot of people much longer than you to realize they've put the blame in the wrong place.

I'm with futurehope on this. It sounds like it might be time for a new medicine or a new doctor. And I understand wanting to protect your husband, but he's there to support you, too. I think the people who love us want to know more than we think about what's really going on with us.

Take care, and good luck.

spike

Yes, someone will want you. There are men out there who will appreciate the strength and perseverence that have gotten you this far.

I do think dating is a little riskier for us than it is for someone more "normal", especially because our health problems can lower our self esteem. I was in a bad relationship a few years back, and by the end I was afraid to leave because I thought I was so messed up I might never find anyone else who was even willing to give me a chance. Six months after we broke up, I realized that I felt so much better about myself and my life that I couldn't quite believe where I had been six months earlier.

I spent a lot of time with my girlfriends when I was getting over the relationship. They supported me and reassured me that it wasn't my fault. In fact, some of the things I talked about made them realize they had similar problems in their own relationships, so even while I was feeling like a total mess I was helping out my friends.

I've dated a couple of nice men since then. Nothing serious, but they reassured me that I will find someone when I'm ready. For now, I'm enjoying being on my own and finding out who I am without reference to anyone else.

Hang in there.

Spike

I have a POTS monster, too! Mine has 5 heads and purple horns and he lives in my closet. I don't think he has a name, though. He looked at me blankly when I asked. He's not very bright. In fact, he sometimes looks surprised when I get upset with him. I don't think he MEANS to mess up my life; it's just a fish gotta swim, birds gotta fly kinda thing. Most of my fantasies involve beating the **** out of him, but they do crack me up when I'm feeling bad!

Now for a name for your new friend ...

You could go with something mythical: Circe

or something respectful: Madam Eisenstien

something insulting: Old Bag

something sinister: Cruella

something deceptive: Lovey

something elegant: Evangeline Ezmerelda Egglentine III

spike

It helps a lot now, being able to say it's POTS, instead of saying, "Well, my doctors think I'm subconsciously reacting to past trauma (conversion disorder--yeah, why did it start when I had mono during my honeymoon, instead of 9 months before that when my father was trying to kill me for trying marry out of my "race"? let me not go there.)...but really I'm not, at least I don't think I am...what do you think?" It really helps to have a label, and others suffering with similar symptoms...

Yes! It does help to have a label, instead of having to answer with a list of symptoms and theories when someone asks what's wrong. It's so easy to dismiss it as emotional when doctor after doctor can't figure out what's going on, because, frankly, everybody's got some emotional problem if you look hard enough. Not to mention, there's nothing like living with undiagnosed illness to make everything else in life overwhelming. The diagnosis gives you validation.

I'm glad you finally got one. It sounds like you've had enough other stuff to deal with, too.

spike

Thanks, Em, you're good for my ego

I still sometimes fall into feeling guilty over all the things I'm not doing, but I'm MUCH better than I was a few years ago. I had to work really hard to stop beating myself up. Just keep reminding yourself that you're good enough just as you are. Put signs up on the wall if you need to, saying,"Emily is wonderful!" or "We're so lucky we know Emily." It takes time, but it is possible to change that habit of thought.

Also, it doesn't hurt to surround yourself with people who love and respect you and will tell you so frequently.

spike

Happy Birthday, Dionna!

Your generosity and kindness are a gift to all of us here.

Spike

Yup, you said it. I've only been here a month, and it's amazing how much difference it makes to have a whole world of kind, generous people who understand what I'm going through. I'm glad you're finding it helpful, too.

One of the things I love about the forum is that there's no pressure. If one person is having a bad day, there's someone else who can step in and offer support. You don't have to feel like you're letting somebody down if you don't have what it takes to respond, so you can offer what you do have freely.

spike

It's a shame sore-footed hubby got his bandages off before Halloween. I figured you could be a troll and he could be a mummy, and you could save the expense of shoes for your costumes.

I'm glad one of you is feeling better, anyway. Here's hoping your turn comes soon.

Spike

I just noticed there are also a bunch of links in the FAQ post at the top of the page.

spike

I agree with Dayna. Everyone has venting rights, no matter how the disease affects you. I sometimes have the same problem you do, though. I look at what other people are dealing with, and I just feel like a wuss for complaining.

And I'm sorry about your hair. You get to complain about that, too.

I hope getting it off your chest helps a little.

spike

I have the same problem telling the difference between anxiety and POTS. Before I got the POTS diagnosis, I thought I must be really out of touch with my feelings, because I would sometimes get light-headed and nauseated over the tiniest little stress. For me there's frequently a seed of anxiety, but my physical reaction gets way out of proportion.

The most useful thing for me has been learning not to feel guilty or inadequate for feeling the way I do. Whether it's physical or emotional or both, I am where I am, and trying to make myself feel different will only make things worse. I pick and choose which challenges I take on when; I'm fortunate enough to have that luxury. When I'm coming out of a bad stretch, I've learned I need to ease my way back into life, so I'll start with little challenges, like going to the post office, before I take on something bigger, like grocery shopping.

I also use medication sometimes. If I feel anxious or fragile for a few days in a row, I'll increase my Zoloft for a week or so. It helps interrupt the cycle of anxiety.

spike

Hi, willows, I'm thinking about you and wishing you a speedy upswing.

spike