Wednesday, July 15, 2009

A Success!

I went on an outing and was feeling pleased about it. I realized, as I was walking through the door, that when I have something I'm upset about or excited about or just want to share my thoughts the first people that come to mind are my partner (of course) but also my blogging buddies. I feel like we have kind of a virtual family of sorts.

I was able to do something today that would have been impossible for me six months ago. I met with some people whom I'd never met before. All of us have this disease. I'm filled with different emotions as I write. And, because I'm tired, I'm having more brain fog so I'm wanting to write everything down so I don't forget anything. As a consequence this blog post might be all over the place.

It was a wonderful experience to meet with people-in person-who also struggle with this illness. I had all these thoughts and feelings as I was sitting with them. I was aware of how much each has suffered and many times had tears in my eyes as I listened to them. I could see the pain in each of their eyes and I wondered if mine looked the same. I was struck by the similar themes that each of us talked about: the poor treatment by doctors, the thoughtless comments of well meaning people, the countless doctors before getting a diagnosis, the sense of isolation, etc...None of us were complaining by any means, we were simply talking about our lives.

I was aware of how freeing it was to be able to talk about these things and know I a) wasn't bringing the other person down b) wasn't trying to pretend I felt better than I did c) that I was being taken seriously and, most importantly, that I mattered even though I've been housebound due to this disease.

I was moved by the simple fact that I was at a table outdoors with people I liked. Such a normal thing but so barren from my life these past two years. There were times when I wanted to shout "I'm doing it! I'm outside! I'm with people! This is amazing!"

It was also great to meet these people and like each of them. I hope things work out so I can get to know each of them over time.

And then there is the fact that I'm having improvements that enabled this to happen.

As I walked back to my car I thought to myself "how wonderful to have such a normal experience." I'm not returning to my car because I just had a doctor appt or my blood drawn or had some other medical test done. I was walking back to my car after having tea with some potential friends. What a gift. And I was deeply grateful.


Anonymous said...

YIPPEE!!!! HOORAY!!!!! So very, very, VERY excited for you. Ahhh. Relative normalcy. Feels so good, doesn't it? Love you - Mama Terri

Jozephine said...

Utterly brilliant! I've only met fellow sufferers a couple of times at a local support group before I moved. It is an extraordinary experience. I felt all the things you describe too.

This is a very isolating condition. My blogging mates are my virtual support group and I don't know how I managed before I started blogging.

So good to hear you have some improvements. A little goes a long way with us.

Treya said...

Aaww... It's great to hear you so happy!! I nearly welled up reading about your experience.

It would appear that everyone has very similar experiences. Like Jo I have found the blogging world hugely helpful. It's good to know we are not alone, right?

I do hope this experience flourishes into some nice friendships for you. x

Anonymous said...

I am SO GLAD you had such a great day, Terri!! I was crying as I was reading your post. I am so glad you got to meet with people who are suffering from this awful disease - it must have been such a relief to just "be" with them, and not have to filter what you say and do. Love you!! Cathy

Shelli said...

I feel the same way about my blog friends. I felt very timid creating my CFS blog at first. I didn't even tell anyone about it for about a month! When I did, I think most of my regular family and friends were scared to visit.

Now, I don't know what I would do without my blog friends. Everyone has so much more experience than I do (that's not such a good thing, lol!), and I have learned so much. Plus, the feelings of isolation are completely lifted, which is nice because I don't think I have a support group near here.

I'm so glad you are feeling better! Every little bit feels like a milestone, like another ton lifted from a ten ton weight. Thank you for sharing your success!

Renee said...

How wonderful for you Terri. Yahoo!!!! I am right with everyone here so says their blogger friends are important to them. I no longer feel isolated and also feel that sense of understanding that is so important. This is a community where we "companion" each other with encouragement and sharing. I am so grateful for everyone.
I am so happy for you Terri. This is great!

Cusp said...

What a solid worthy warrior you are: your blog is truly well-titled.

I so admire your resilience and strength. I've just read through your last 4 or 5 posts and so much of what you are experiencing resonates with me. I have had this wretched condition for over 30 years( although only diagnosed 8 years ago) and have nowhere near the resources you seem to have mustered around you. You seem to know so much about your particular condition whereas here in UK it's virtually impossible to really get down to the nitty gritty of what's behind us being ill and to have facts and stats. Sometimes when I'm trying to push the medical professionals to work with me and help me understand exactly what I'm dealing with it feels like trying to knit with fog !!!

The subject of this particular post is evidence of your strong spirit and reward for your hard work. I know exactly how you feel because I had a similar experience on Sunday when I saw some dear friends who I hadn't seen for years: all open minded and caring and understanding me. It does make you want to weep with gratitude when you feel you have met someone who finally understands you and isn't judging.

Great blog...I'm following you now and look forward to returning often

Cusp x

Pris said...

I'm SO EXCITED FOR YOU!! Doesn't it feel great to go somewhere other than a doctor?? I remember I was able to go into a regular grocery store one day. I got back to the car and cried from happiness so can totally relate!!

mojojojo said...

This is so great. Instead of a "support group" meeting, you were just hanging out. I could think of nothing more liberating.

Thank you for posting

Sue Jackson said...

How wonderful, Terri! So great that you're doing well enough now to get out! And the support group sounds great. I've wanted so badly to go to one myself, but there isn't one in DE any more. Glad to hear it was such a good experience for you.


Kerry said...

Terri, Wow, what an awesome experience. I understand the joy you felt at just getting out of the house for something other than medical, and then to put on top of it meeting people (in person!) who are sharing your reality..WOW!

This post moved me...I had chills and smiles. As someone who also has ME/CFS I felt less alone in my own experience. Thank you so much for sharing!