Sorry I've been writing so little here lately, but I've continued to be very ill - still going through the herx reaction from restarting Lyme treatment, I guess. It's been over 5 weeks now. I do seem to feel a little better today, but I don't want to get my hopes up! The last two times I started antibiotics for Lyme, I had severe herxes lasting 8 weeks and 6 weeks, respectively, so we'll see.
I'm feeling a bit victorious today, for surviving another big holiday weekend. A friend e-mailed me on Friday to ask what we were doing for Easter, and she mentioned that they didn't really have any plans - probably just dinner with family on Sunday. Given how bad I've been feeling lately, that sounded wonderful! Our holidays are never quiet and relaxed because none of our family live nearby. Every single holiday involves a trip to visit family, staying in someone else's house, and lots of noise and activity (and my family is NOT the silent type!). This past weekend was no exception.
We drove to my Mom's house, about 3 1/2 hours away, on Friday and spent the weekend in a house with 10 people! I'm sure you can all relate to the challenges of being away from home when you have CFS. I have to take a strong dose of Ambien just to be able to sleep at night, and the constant noise and chaos can really wear me out.
I managed OK this weekend, mostly because I've been so severely ill lately that I had very low expectations for myself. I've had so little stamina that I didn't even try to keep up with everyone else. I went to bed by 10 each night, did very little to help with meals (it's so hard for me not to pitch in!), and didn't even attempt to go along on the annual family scavenger hunt. Also, I was in fairly good spirits emotionally. I tried to just enjoy my family as well as I could and take care of myself. I did go along to the beach-side park for the scavenger hunt, positioned myself on a bench near the entrance, and helped my team figure out some of the clues via cell phone!
I love my family very much and enjoy being with them, but these visits are so difficult for me. What helps me immensely is how supportive my mom is. She went through some serious denial when I first got sick - just couldn't accept that I could be seriously ill - and we had some rocky times. More recently, though, she's made a real effort to learn more about CFS and be supportive and it makes such a difference! Some family members still refuse to acknowledge how seriously ill I am, and that makes it very difficult to be around them. My mom really worked hard to make things easier for me this weekend, though. I'm grateful for her understanding and support because that makes it possible for me to enjoy some time with my family, and it's also so important to me that my kids get to experience these family times.
So, I survived - and even sometimes enjoyed - the holiday weekend, and we're all working on taking it easy and recovering now!
P.S. We just finished a dinner of left-overs from yesterday's Ukrainian Easter feast at my mom's - Wow! That food is SO good. Why do we only eat that meal once a year? Oh, yeah, because we'd all weigh 500 pounds if we ate like that all the time! Mmmm....
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.
Sue,
ReplyDeleteI'm so sorry that you've been so ill for so long. I hope you're feeling better soon.
I can imagine that traveling the 3-1/2 hours every holiday would be hard. A quiet and relaxed weekend does sound nice. That's good that your mom is now supportive, and you were able to participate somewhat.
I'm wondering what a Ukranian Easter feast includes.
Welcome back! I've said it before, I think it's amazing the way you manage to have so much life in spite of everything. Hope the herx is coming to an end.
ReplyDeleteThanks for the support!
ReplyDeleteActually 3 1/2 hours is the shortest we travel for holidays - sometimes it's 8 hours driving time to Rochester or a full day of flying to get to OK!
For Ukrainian Easter, we have Polish sausage (Polish and Ukrainian foods are very similar), ham, pierogies, cabbage rolls, Poska (Easter bread - known as Babka in Polish), cheese pie, beet & horseradish relish, and the most awesome sweet rolls filled with prunes for dessert. Mmmmm - can't wait for lunch today.
Sue
This mirrors my own experience of family gatherings!
ReplyDeleteDon't often comment here but drop by often. Just commisseration from one PWME to another re holiday times: I don't have to travel like you and don't know how you manage it but I do know how hard it is to try to be with everyne at such times and especially when the are children involved and their expectations of a lovely time. I tink you do amazingly well and more power to you
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Love Cusp
It all sounds wonderful! Holidays are always tough on me, too. I LOVE tradition, and I hate giving up even the smallest ones. I still haven't figured it out yet.
ReplyDeleteI'm glad to hear that your mother is now being more supportive. I have also experienced this with family members and it is truly soul destroying. I real feel that it is fear of the unknown. I'm so sorry that there is still some members who do not try to understand. I think they are probably living in a box that they are scared to get out of.
ReplyDeleteYou should probably try and consciously
close yourself off to their negative energy before you are in their company. It may help.
On the positive side of things, I bet you have learned a lot about how to treat people and listen from these experiences.
Your doing great!!
Sounds like you had a great Easter with family. It is so good you can travel and connect with your loved ones!
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