Once again, I haven't been online much this week. We had one son returning from spring break in Florida, another leaving for spring break in the Bahamas with his girlfriend's family, a 2-day Easter celebration to accommodate both boys' comings and goings, and a mini-getaway this week for my husband and I. Our sons enjoyed tropical spring breaks and we drove 2 hours to camp at the local beach, where the weather was low 40's F and raining! ha ha What's wrong with this picture?
Obviously, from all this activity, I am feeling much, much better, thanks to getting this latest yeast/candida flare-up under control. After a couple of months of infirmity, I am now back to my recent baseline, which is pretty good (see my 2014 summary and How I Improved in 2011 for information on which treatments have helped me).
I very much enjoyed our few days away together, though this is a big change for my husband and I - our first time ever camping in our pop-up trailer on our own and our first spring break without the boys in 20 years. We had a very nice time, in spite of the weather. However, I realized last night that I was also happy and excited to be back home and getting back into my normal routine. My head was spinning this morning with all the things I want to do - blog posts, articles to write, ideas to pitch for writing, etc.
I have been trying to compose this post in my mind all day, but I'm having trouble describing exactly how I am feeling.
Basically, I am very happy with my life and looking forward to every day. I am still quite limited by my illness - in fact, laundry did me in this morning! - but I feel content with what I have and excited for everything that comes next.
Perhaps this feeling is so exciting to me now because I know what it is like when it is missing. During the first years of my illness, I felt a mental fog and lack of motivation that were directly tied to the severity of my illness. Like many people with ME/CFS, when I treated underlying infections with antivirals, the first improvement I noticed was a mental clarity and a return of enthusiasm and motivation, like someone had lifted a dark curtain from in front of me. That's why I no longer take these feelings for granted.
I still feel like I'm not explaining this well.
Life with ME/CFS has given me a gift - a sense of gratitude for what I have and an ability to find joy in small things. Even when I am sicker and more limited - like I was for the past two months - I am still excited about the possibilities in my life. There are so many good books to read, audio books to listen to, great movies and TV shows to watch. Even when I am stuck on the couch, I can still write a bit (not as much as when I feel better), and I am bursting with ideas.
At the same time, my husband and I are starting a transition that will last for several more years. We have one son in college, living on his own, and one who is a junior in high school and beginning to look at colleges (and rarely at home anymore!). Soon, they will both be out of the house. In the meantime, they have already gone off on their own spring break trips, instead of our old family trips, and have told us they no longer want to take a long family vacation in the summer. And while this makes me sad and very nostalgic for their younger years, I also feel a sense of excitement about the future. My husband and I are starting to talk about what kind of a camper we might get when we trade in the pop-up in a few years and the traveling we want to do on our own. There is a lot to look forward to and so much that I am excited about.
I wrote previously (back in 2007!) that my chronic illness psychologist, whose grown son had ME/CFS, used to like to ask me "What Are You Looking Forward To?" It was her way of testing my mental state, to see if I was depressed or merely feeling frustrated with my limitations. Right now, there are so many things I am looking forward to, so many things I want to do. Yes, I am still limited by my illness, and I still tend to plan far more things to do each week than I can possibly accomplish, but I am happy. I am living for today and enjoying each moment while also looking forward to tomorrow.
What are you looking forward to? What makes you happy?
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.
I am so glad you linked to the post "What are you looking forward to?" When I was hospitalised due to starvation as my ME/CFS was so severe I could not eat, I had a host of doctors, psychologists and nurses try to convince me that I was just depressed. A psychologist interviewed me once and I told him I had lots of things I wanted to do if I could only get out of bed. He told me this doesn't mean I didn't have depression. Even my undergrad psyc degree taught me that anhedonia was the #1 symptom of depression. It's great you had a psyc that recognised that and didn't try to force a diagnosis on you.
ReplyDeleteAs for what I'm looking forward to, based on your experiences and other reading I have started propranolol this morning. I'm really hoping it will rein in my crazy tachycardia without any horrendous side effects.
Unfortunately, your experiences aren't all that unusual, Siobhan. It drove my psychologist crazy that other members of her profession could possibly mix depression and ME/CFS in together - she said the differences were clear (it helped that her own son had CFS).
DeleteThat's great news that you are trying beta blockers! A couple of tips that might help - start with the absolute lowest dose possible, as too much can cause fatigue. And I found it more effective to take the long-acting propranolol at bedtime. Of course, we are all different and it takes some trial and error, but that's what worked best for me. I didn't actually notice feeling "better" right away - the benefits were in being able to do more and be more active without crashing later, so the benefits grew over time. And if propranolol doesn't work for you or have side effects, then don't give up - just try another!
Good luck and please let me know how it goes. Within an hour of my first dose, my heart rate dropped 30 bpm - it was amazing!
Sue
http://livewithcfs.blogspot.com/2012/11/switching-to-long-acting-beta-blockers.html
Thanks for the tips Sue. I've started with 5mg (half a tablet) and already have noticed that my heart rate stays below 100 even after a shower. I might up to 10mg if it keeps working for me.
DeleteGreat! Glad to hear it is helping. Remember that too much can increase fatigue so it can take some trial and error to find what is right for you. Yes, being able to take a shower without feeling awful afterward is a HUGE benefit!
DeleteThank you for sharing your inspiring words. I, too, am limited by illness; I've been living with bipolar and general anxiety for over 10 years. And also like you, I have many things to look forward to, and many things that make me happy. Check out my blog for some examples if you're interested. :-) apathtocreatenotfind.blogspot.com
ReplyDeleteThanks for taking the time to comment, Audra - I'm glad you found this post was something you could relate to! I will take a look at your blog tomorrow.
DeleteSue
Great post Sue
ReplyDeletetaking time to watch recorded TV after lunch has been a great happiness booster for me giving me something to look forward to and stopping me from overdoing things with housework etc
A suggestion from my psychologist that i have really embraced
Hey, Ana, that is one of my small joys, too! I live with 3 males, so watching a TV show just for me at lunchtime is a treat! And like you said, it forces me to slow down and STOP all the stuff I was working on all morning. Glad this approach has helped you, too!
DeleteSue