Better, But Am I Best?

[songcanary]

I hate to sound like a whiny baby, but here goes. I was diagnosed in July with NMH at the Cleveland Clinic. Since forcing salt water and taking doxepin & 5HTP, I am dramatically improved. Especially regarding the lightheadedness & nausea; that was unbelievably horrible for three years.

Slowly I have been working up to yoga class 3x a week and resuming some quiet activities. But in general, I still feel hesitant to do anything more than routine housework and caring for my pets. I usually feel like I might get lightheaded while I'm out, so I avoid going. But I have noticed that once I am out that I sometimes, but not always, feel better. Maybe just moving some blood around helps?

On occasional days when I feel well I just long to do everything that I used to. I was very active and ran my own pet sitting business for 10 yrs, which I have given up for the time being. I WANT to work. But there is this little black cloud hanging over me that keeps me fearful that I'll collapse away from home (and it HAS happened but not since Dx) so I'm afraid. I wonder if I need more/different meds. I can't tell if this is anxiety or if I am still actually a little lightheaded. So I don't know if it's a physical vs. mental cause.

Has anyone else gone through this? I feel ridiculous asking these questions but they haunt me. I will certainly see my doctor again if necessary but would appreciate thoughts from those who really understand this illness. Sorry for the rant but I want to be as well as possible and I'm not sure what normal is anymore!

[Guest tearose]

You will go through a process of trying and seeing how you do.

I attempted to return to work and within a short time was unable to continue. My last part time job triggered a most serious relapse.

Now that I am managing better I too ask..how much more can I do? The reality is that managing better does not mean it is time to take on all that I did before. I am managing better because I am not overdoing or over pushing.

I know how to pull back when I start to have more SVT or get tired or cannot think clearly.

So, try to figure out when good is good enough. Don't force yourself to do too much or you will begin to slip back into fatigue and relapse.

best regards,

tearose

[Chaos]

I think all you can do is keep trying a little at a time and see how you do. I don't know that you'd want to try jumping right in to your old life again but if you can add little bits at a time you may be surprised at how much you can do over time.

When I compare what I can do now to what I used to do, it's a bit depressing at how I still have to set limits that I wouldn't have thought of setting before. But when I compare how I am now to how I was last year at this time, I usually can say "WOW", I'm clearly a lot better. I still have symptoms and some days are definitely worse than others,(some days I'm back to thinking I'm still JUST like I was a year ago) but it seems like my bad days don't last as long and usually aren't quite as bad as they were before meds. And, for me anyway, even when I have a couple really bad days, I am getting a little better at accepting what they are and doing a little bit, resting a lot, and then I seem to come out of them MUCH faster than I did before being diagnosed and being on meds.

When I was at CC this summer they recommended a Cardiac Rehab II program to help overcome the exercise intolerance I had. For me it has been helpful because they have been VERY slow to progress me and it's kept me from overdoing it on my own and then ending up triggering a whole cascade of symptoms. One of the hardest parts has been dealing with my ego when the 70 year old men on the treadmill next to me can walk faster than they'll let me walk! But I do think it has been helpful and has increased my overall energy. I've also been gradually building up my yoga practice again, but doing a lot of floor level stuff with that. (It is interesting to me to look at a lot of Iyengar's yoga books and see how many yoga poses address issues related to autonomic dysfunction.)

Like most things related to this problem, we all have to do a lot of trial and error to see what will work for our own bodies.

Glad to hear you're feeling better. Hopefully as you continue to do more and more, success will feed itself and you'll be more confident reaching a little farther each day.

[songcanary]

Thank you both for your kind replies. Going through this seems a little like repeatedly dipping your toe in to test the waters. And when I look back on last year at this time, clearly I am better, and I am so grateful. After I posted I was ashamed of myself because I realize that there are people out there who are far worse off than I.

I like the reference to lyengar yoga, because I have been doing exactly that for a few months now. I thought I would do yoga as a transition back to my regular routine, but I ended up being a convert. It helps me in so many ways that I wish I had started it years ago.

Many thanks for the good advice. It is so comforting to talk with people who really understand. This board is awesome!

[Chaos]

Nothing to be ashamed of in your post. We all have days of being SO incredibly frustrated and just wanting our lives back the way they were. I think it sounds like all of us were pretty much high achievers, very active, many of us were very athletic and I know I always believed that if I kept up the healthy lifestyle I had, I was doing everything I could to control my health. And then WHAM!!! Lesson #1... What's that phrase??? "Man plans and God laughs". Uh-huh! So much for MY plans!

I taught yoga for years until I got sick in 2009. Still can't go back to teaching but have been working on trying to just build up my own practice again gradually. (When I first got "sick", even an hour of restorative poses sent me back to bed for a week.) Have to avoid a lot of standing poses or at least staying in them for any length of time like I used to, but can do a lot of floor level stuff and it makes me feel so much better. Have you seen Iyengar's "Yoga, Path to Holistic Health?" It gives very detailed descriptions of what each pose effects and so very much of it is ANS stuff, hormones, glands, etc. It kind of makes sense to me that if so many people with hyper-mobility have ANS dysfunction, they'd feel better doing yoga.And, yoga is certainly a practice that attracts a lot of hyper-mobile people.

Besides the physical practice, yoga has taught me a lot about "being in the moment" and taking time to really be grateful when I'm having good times and accept the times that aren't so good. I'm pretty good at being grateful for the good (you should have seen me dance in the grocery store parking lot the first time I could push my cart through the store standing up instead of leaning on it and dragging my body thru a few aisles. )I'm not nearly so good at accepting the bad times. Oh well. I keep trying.

Anyway, glad you found a practice that helps you. It really is amazing stuff if you can modify it and use it at a level that helps you without totally wearing you out.

Keep dipping those toes in! The water's fine!

[firewatcher]

Please don't feel ashamed. Most of us rejoice in someone with improvement! It gives us hope that we'll get better too! I agree with the slow and easy approach. Just do what you can and slowly work up to it. Improvement is a wonderful thing!

[songcanary]

I am going to check out Iyengar's book, it sounds very interesting. Thanks for all the encouragement because today is not so good LOL. But now at least I can laugh about it because I have gotten over it before and I know I will again. Wishing a good day to all! Now if I could only figure out how to use these cute little emoticons...

[friday7]

I know the feeling of being afraid to do something because I'm afraid of what might happen. And sometimes I wonder if I could be doing more, and I'm holding myself back. But at the same time sometimes when I'm feeling good I"ll overdo it, and make myself sick.

It's hard to know. I think I had such a long period of time where I couldn't do a thing, that now I feel a little better but I'm used to thinking , I can't do that. Then I started to think. What if I can and thinking I can't is holding me back.

The thing is most of the time it has to do with driving with me. I feel I can't go to the store, not because I can't walk around but I'm not sure how I'll be when I drive. Sometimes I feel good , but then I worry, what if I go someplace, walk around and then feel sick and can't get home.

I'm thinking , maybe I'll start going out every day , just a little, somewhere where there's no traffic. Like drive down the street to the Krauser's. That way if I feel sick I can always pull over. It's not like I'm miles away from home. And that way I can get used to going on on my own again.

I think that's the hard thing, you have to start with small steps and not overdo it. When I feel good I want to drive to the shore (which is about an hour away) and I really have to hold myself back from doing things like that. And encourage myself to take small trips more often instead. It's hard though. I guess you have to find a happy medium, and be patient.

[janiedelite]

I agree that the slow-approach is best when seeing how much you can do. Like you, I've discovered that I often feel better when I'm moving around. So these past few months I've really pushed myself and found that, over time, I wore myself out and slowly got worse when I pushed myself so much every day. But we don't know our limits until we try them. I figured out that I can push myself occasionally, but that I need to have a good 3 hour rest period during the day on most days (along with a good 9-hour sleep at night).

[songcanary]

That was a beautiful description of fear--I felt like you were describing my day! I have missed so many activities because of this illness (and I mean routine stuff, not just fun). I definitely have been taking it easy and I guess it's a sign of improvement to WANT to do stuff. Because it wasn't that long ago when I was so sick that I didn't have the strength to consider anything.

And so right about the trial and error. I'm slowly finding my limits and hopefully will get into a tolerable routine as time goes by. Naps and decent sleep are bare necessities for sure. Boy oh boy, every day is a new day with dysautonomia