Be Well Vs. Be Normal

[cordila]

Ever since my diagnosis in 2006 I've been fighting to 'be normal again'. Along the way I have encountered amazing healers/doctors and have found huge success with diet (gluten, casein, alcohol, caffeine free; limited sugar; lots of small meals) and vitamin supplements, chiefly B1 and Magnesium creams. Those two things alone took me from bed bound 22 hours a day and living with my parents (in my 30s!!) to living on my own, working full time, moving back to the city, taking on a relationship with an amazing (seriously amazing) man, and feeling more 'normal' than I have in years!

And then my ego peep out and <BAM!> In the last few weeks I've been 'forgetting' to apply my B1 cream. Why? It stinks! And after all, I tell myself, I'm 'normal'. Well, after a particularly arguous week (first flight since 2006, week with my parents, mom getting really sick with Guillain-Barre, moving from one home to another, moving IN with my boyfriend) I ended up missing 2 interviews for great jobs (recently laid off !!) and last night I got so schooled by the worst episode in years! It ALL came out - diarrhea, extreme nauses, and the ever-so-sexy tremors (My boyfriend made some crack about putting a quarter in me and getting a vibrating bed!). It's now 11:30am and while the tremors have subsided, my tummy is so sore - like I got kicked in the gut.

And the more I think about it..the more I think I did. The kick in the gut is my wake-up call. It says 'be grateful that you've found good doctors, a loving (and understanding) boyfriend, and a path to wellness that doesn't include meds.' This whole time I've been focused on being 'normal' which means not having to take my vitamins or worry about what foods to eat or if it's hot outside or if I'll be overstimulated at a party or blahblahblah. Instead I need to focus on being well - and grateful for the wellness my diet and vitamins affords me. It's a hard transition but one I'm committed to making. I don't want to be here again - so sick that I can't even eek out a 'goodbye' to my boyfriend as he leaves for work. I regret not treating my body with respect. I'm sad my need for 'normal' usurped my need to take care of myself. I learned my lesson...I think.

Be well, Waterbaby

[dsdmom]

Waterbaby

Your post really stuck home with me.First of all, I am glad that you have found a combination of things that helps you. I definitely understand what you're saying about wanting to be 'normal' and not have to take supplements, drugs, etc...sometimes I feel pretty good and think how great it is that I'm 'normal' and then I realize if I didn't take my medicine I would be very much 'abnormal.' And it bums me out. Because it makes me wonder if, in fact, I am any better than I was when I first got ill or if it's just the treatment that's helping. However, like you said, I need to be thankful for what these treatments allow me to do and feel. Thanks for the reminder. Be well.

[ramakentesh]

The first time i improved with POTS I was on no medication and everything I thought was helping wasnt actually doing anything. its a weird illness!

Too many times ive told people that im over - even myself only just when i finally start relaxing about it it comes back.

[Miriam Poorman-Knox]

Perhaps this is your new normal..????? You may have been in remission. Now breathe, and start the cream and other helpful things and work for another one. Peace Miriam

[erikainorlando]

Hi.

I was struck by your mother getting Guillain Barre. I had that back in 2001. Almost died...on a vent for 4 months... I recovered. I still have nerve damamge in my feet but am really better. Interestingly enough, I began working too hard....single mom, busy with boyfriend too....totally overdid it and this past fall I got a virus that turned into POTS.

For whatever reason...I have a very sensitive body.....doesn't like stress. Doesn't like virus's. I have to be very careful....probably like many of us here on this site.

PM me if I can be of any help in the situation with your mom. Guillain Barre is a very serious illness. (altho I am really not enjoying POTS too much either at the moment!!).

All the best.

Erika