After Dr. ANS encouraged me to take a break from the cognitive uncertainty of my illness and the decisions ahead, I had to really think about how to use my time.
I look at managing my illness and working to get better as my full-time job. It's a job that's 24 hours a day, 7 days a week and quite honestly, I hate my job. It's all-consuming, it's all about 'me', and it leaves little time for anything else.
When I was given a prescription to take a break from it all as much as possible, I felt relieved and free on so many levels. When I am not 'working on getting better' I feel like I am somehow failing. Here, my doctor was telling me to take a break and enjoy life a bit more!
What I had to do was really think about how to spend the gift of this time. My first instinct was to make a list of a zillion things I was going to get done. I quickly realized that wasn't realistic!
I've been surprised in some ways by how I've spent my time and what I've chosen to do. I don't have a lot more time in my days that I feel well, but the time that I do have is so much better than it used to be. And since I'm supposed to be focusing on enjoying things, I'm less likely to spend as much time researching or trying to find out what to do next. Plus, I don't have the three days a week that I'm completely knocked out from the bicillin injection.
When I'm sick from the Lyme meds I spend a lot of time thinking about my to-do list--things I need to do and things I want to do. I feel guilty, sad, angry, frustrated and discouraged. Part of me thought that I'd spend this med-free time being a little more outgoing--catching up on email, getting together with more people, getting more things done.
I've tried not to force myself to structure this time any particular way except to make sure that I create happy memories, seek pleasure and joy, and spend time with my closest friends and family. Instead of bringing more into my world--meeting new people, tackling the many projects I have on my list--I've really needed to focus on what is already there.
What is already there is a circle of people I love and who have loved me through the worst of this illness. I'm used to being with Mom, Dad, Abbie or Jeannine and only feeling sick. I find that when I have a choice in the evenings to go for a stroll with Mom or catch up on email, I want to be with Mom. I want to savor time with her that's not about being sick. I want to get some fresh air, see the sunset, watch the bunnies running around, chat with the neighbors, and watch Asher prancing with joy next to the wheelchair.
I've stayed much more introverted and quiet during this time than I thought I would. And it's been interesting since I tend to be a very social person. I told too many people 'Sure, let's get together' while I'm 'on break' only to find that I was over-scheduled physically and emotionally and regretfully had to cancel.
I think on many levels I am exhausted--emotionally, physically, spiritually--and I haven't had energy for reaching out or starting new things. I've needed this time just to catch up a little with all of those folks who are constantly on my mind but there's never energy to be with them. I've also desperately needed to spend time alone, blogging.
When it comes to having the energy I thought I would have to email, make phone calls, and tackle some of my 'piles' and 'to-do' lists, somehow the reserves aren't there yet. Maybe I thought I'd be able to just jump into things a lot faster? I thought I could go from 0 to 60 in a few weeks? The challenge has been not to be disappointed with what doesn't and still can't get done, to accept that my body is still sick and still needs a lot of nourishment. It's not ready for more yet. And when August is over, most of my to-do list will still be unfinished.
Certain items on my to-do list are getting tackled--some in preparation for being sick again (placing a Mary Kay order or taking care of getting a new Medic Alert bracelet or other such things) and others out of the desire to do them now that I can (create a family website or get my Dad a birthday present).
Every day I have to ask myself how do I want to spend the day? How do I capture the day in a way that I will not look back and regret how I spent my time before I resume treatment? By the time I learn to be good at this and make decisions about this, I'll be back on medication.
I've needed a lot of time to chill, to be low-key, and to be reflexive. I've needed a lot of rest. I've needed a lot of time away from the computer. A lot of time away from Facebook. Maybe I'm so used to email and Facebook being my only outlet, my absolute lifeline, when I'm sick that right now I need a break? I haven't quite figured that part of the puzzle out yet--why I can't get myself to tackle emails. I am slightly frustrated with my lack of motivation to tackle my inbox and catch up with people.
I also don't want to go back to my old pre-illness pattern of do, do, do--feeling stressed, robotically tackling projects, and completely unaware. I want to be mindful of the choices I make, and mindful while I am engaging in each activity, even if it's just being able to fully enjoy an hour of TV without thinking about other things.
So in between the evening strolls, the outing to Target, or lunch with Miss A, I've needed a lot of down time. One of my favorite things right now is to enjoy a little TV each night. I never thought I'd be saying that! It's a favorite part of my day. For so long I couldn't even watch TV without feeling sick. Now I look forward to enjoying a fun TV show and a little escapism.
The point, after all, of this time of respite before resuming treatment is to emerge from it stronger, not more depleted. Now, if only I could go to the beach and just convalesce for a month!
While I'm not talking about my medical decisions all of the time, they are still a cloud hanging over my head. I know how soon the gift of this time will be over and it's difficult having that finite amount of time and choosing well how to use it. I'm always worrying about how my choices will affect others, while at the same time trying to choose what will be most healing for me before I start treatment again.
It's a difficult balance and it's one I know I haven't figured out. This period has been an incredible life lesson. This is the best I have felt in years. Yet I still have incredibly limited energy. The trip to Target was my whole day. Some days my whole day is just my activities of daily living, some quiet time with Mom and Asher, and my daily phone call with Dad. Lots of times I still feel really crummy.
I've had years to think about how I would spend my time if I felt better. Now, I've had a chance to try to apply that. Every day is full of learning how to use those lessons.
It may sound cheesy but so much of this time has really been about enjoying the simple things and not cluttering my life with other 'stuff'.
It's about savoring the fact that I have a choice today. Today, that choice was to blog.
It's about savoring the 'space' to be in a place other than survival mode. Survival is a part of every day for me, but the intensity has been less since I've been off of medications. The new 'space' in my life is blissful. It's nice having a little 'space' to see where I'm at emotionally and spiritually.
It's also about letting go on the days that don't work out--like when I had a GI attack last week and survival mode is the only option.
It's about creating a sense of normalcy in an otherwise completely abnormal world--like eating lunch and painting my finger nails with an 11-year old, celebrating Asher's birthday, or picking out headbands at Target.
It's about learning what it means to have fun and joy again.
It's about doing things and being with people that I enjoy and miss and love so that I remember what I'm fighting for.
Thank goodness I followed through and 'filled' that prescription! It was just what I needed.
Blessings,
Emily
Photos: Our lilies.
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