I am finally back on my feet (literally) today! In fact, this is the first time I've opened my laptop all day, and I'm sitting up in the recliner - I haven't laid on the couch all day - woohoo! What a relief. I spent 6 days flat on my back, with sore throat and severe aches, just for the privilege of getting my period. It just doesn't seem fair. I went back on the pill last night and woke up feeling good today.
I've had a busy day. I saw my doctor for my 6-month check-up. Not much new. I told her about the 6-month relapse I had this fall and winter, updated her on my continuing Lyme treatment and my latest lab results from the Lyme doc. I did mention these very weird abdominal pains I get about once every couple of months - severe pain on the right side that takes my breath away, then goes away after a few hours. Something similar happened the first year I got CFS - I ended up in the hospital and then my OB/GYN did exploratory laproscopy, but they never found anything. So, she's mystified (as she often is with me), but the next time it happens, she wants me to go get an x-ray while the pain is there.
She also told me about a new CFS patient she has who she'd like me to talk to. She said, "I think you two will get along well. She comes in here with notes and charts and the latest research, too!" I told her I'd be glad to talk to someone else locally who has CFS because I don't know too many (mostly kids and teens). She said, "Well, they're all patients here!" That's because she's one of the few (only?) doctors in Delaware who "gets" CFS. She's a family doctor, not a CFS expert, but she understands it as well as any of us do, she knows how to treat sleep dysfunction and OI, and she's willing to try new treatments when they come along. I'm very lucky to have stumbled onto her after seeing so many clueless doctors the first year I was sick. She was the first one who recognized I had CFS.
Anyway, since I've been flat on my back for two weeks, I also stopped at the library, bank, post office, and grocery store. I know, I know - I can hear you warning me from here! I'm really doing fine today and feeling like myself again.
So, here's the big news...I'm going away this weekend by myself! Well, not actually by myself...I mean, without my husband and kids. I'm going on a women's retreat weekend along with two of my closest friends. It's an annual event hosted by the local Unitarian church that I've always wanted to try. I'm not actually a member of the church, but I've been in its book group for five years, and we go to Christmas Eve service! Many of my friends go there, and I really like the Unitarian approach - very open-minded and tolerant, welcoming people of all backgrounds and faiths. I just don't have the energy to get too much more involved right now (plus Ken doesn't want to give up his Sunday mornings - the only day of the week we don''t have to jump up and go somewhere).
Well, I got a little off-track there - I'm sort of babbling today, aren't I? It's a sign of my energy and clear mind! Anyway, my friends convinced me to come along and have assured me its very laid back - no schedule, plenty of free time, I can take my afternoon nap, etc. It's held at the beach house of one of the church members, and they've promised me a bed (and I'll of course bring my pillows, ear plugs, meds, etc.). So, I'm a little scared to be going into an unknown situation (because of CFS), but I'm also really excited that I'll be spending most of the weekend with my friends, doing something just for me. The sad truth is that I very rarely do anything for myself. I mean, obviously, I have to take care of myself because of CFS, and I rest, etc. But I normally use all of my available energy being responsible - getting things done, working, taking care of other people. That's a topic for another post!
I think I can handle this, and I'm really looking forward to it. Wish me luck!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
7 comments:
How cool! Just take it easy and have as much fun as you can possibly cram into the weekend. Can't wait to hear about it.
We're doing prom this weekend - aghhhh. sounds like you'll be having more fun. :)
Good luck Sue! Glad you are feeling better. I'll send some energy waves your way this weekend. ;)
Have a great time!
D.
Good luck - I know what you mean about taking care of yourself, but using all your energy towards your family. It'll be good to feed your mind & soul a little bit. Have fun!
This is so exciting! I hope you have a great time, Sue.
Isn't it sad that what we used to take for granted because it was so easy for us to do, now scares us because it is such a challenge for us to accomplish. Phew! I can totally relate with you wanting to go, but...
I'm glad you are trying it out anyway! I hope you have a fabulous time. I think we women need to have that one on one time with each other.
It's a part of life that we don't have much time for anymore. Sad.
Well, you have a terrific time and come back and tell us all about it! We will want all the juicy details like how many naps you had to take, how many pillows you brought, what color your sweats were... You know... the important stuff! LOL
Way hay! It's so great when one of us can snatch some activity, especially social stuff. So glad the 6 day misery is over for you. Long may this return to form last! Have a terrific time at the retreat.
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