Choice Words

deckchairs-355596_1280On the last page of InStyle magazine, there is a brief article called, “I am That Girl.” Each month a different female celebrity is interviewed. In the August 2016 InStyle, the actor, Tracee Ellis Ross was interviewed. Tracee is an “outspoken” feminist, according to the article, but I found such a connection to the words she spoke that I had to share.

When asked, “What do you do when you lose hope?” (about the lack of progress of feminism) she replied, “I ask myself, ‘How do I take my frustration and translate it into something that actually helps the situation?'” Wow! Why can’t those words be used for any situation that causes frustration? Like chronic pain or illness? For example, when I get frustrated I could share with my blog readers or I could journal or talk to an empathetic friend. When I was a kid, my mother would tell my sisters and I to “go suffer in silence” when we weren’t feeling well. But by sharing my pain, discomfort or frustration with others I am able to let others know that they are not alone in their suffering and reminds me that I have wonderful readers who understand what I’m feeling.

The interviewer asked Tracee “What do you wish you knew when you were younger?” She answered, “That I was enough. . .I used to think there is a right way to look, there is a right person to become-then I got stuck.” How many of us face feelings of being “stuck?” Life didn’t turn out the way we thought it would. It’s easy to see ourselves as less than whole because of our physical limitations. Yet each of us is enough; we are whole individuals with likes, dislikes, intelligence, beliefs and ideas. Neither pain nor illness defines who we are.

Then there was the question, “How do you deal when you don’t feel 100 percent? Tracee answered, “I accept it. Acceptance does not mean you like it. It means that you agree this is what it is. Once you have that, you can step forward.” This response was related to not feeling like she is “enough,” but it is also a great response to not feeling physically well.  We can take a moment to accept that we are having a bad day, week or month and even accept our feelings about how bad our pain and/or illness is. Then we can move forward. As I am reducing the Lyrica (see Still here. . .), I’ve had quite a few rough days and I’ve been practicing acceptance to get through those days. I first acknowledge that I feel remarkably awful, accept that I won’t be able to workout that day, then move forward towards what I can do. Maybe a little yoga? Maybe making a piece of jewelry? Maybe just some coloring. . .

That’s all for today! I just had to share my thoughts on this article. All the best to each and every one of you.

Deb

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Still here. . .

rose-174817_1920I don’t quite know what is going on with me. What I do know is that I’ve had complete writer’s block when I usually am so eager to post on my blog. I’ve tried, yet seem unable to write a coherent post.

I’m wondering if I bit off a bit more than I could chew with starting to exercise while trying to withdraw from Lyrica. I’m not going to lie; it’s hell getting off of Lyrica. My doctor is on board with me stopping it and is lowering my dosage slowly and carefully. However, each decrease results in days of nausea, diarrhea, body aches, sweats. chills, weakness and a powerful headache. It then takes more days/weeks to regain my strength.

I’m definitely not losing my courage. I can see and feel improvements in my body with each decrease. Last night I realized that the fluid retention has been reduced to the point where I recognized my feet and ankles for the first time in years!

Julie’s last two posts on Counting My Spoons have been about acceptance and making changes. As I was reading her blog, I realized that acceptance does not mean complacency. Recently I’ve needed to make changes to the medications I take and in the way I understand and accomplish self-care. Working out is difficult and uncomfortable when you haven’t exercised in 12 years. Getting off of meds (yes, there are a few I don’t need anymore) that you’ve relied on for many years is also difficult and uncomfortable. Yet, I know with certainty that these are the things I need to do for my health.

I guess I can’t really say I bit off more than I could chew. I’m listening to my body and giving it what it needs right now and of course that affects my mind and emotions as well. To say I have brain fog is putting it mildly. Hopefully, this post is the end of this difficult and uncomfortable writer’s block I’ve had. Please stay with me as I go through this time of transition.

Deb

 

Journaling Your Way

female journaling-865110_1280I’ve never been consistent with journaling. Sometimes I’ve journaled for a couple of years straight; other times I’ve not journaled because I’ve been too busy or my life didn’t seem especially problematic. Lately I’ve seen a couple of journaling ideas that have me determined to start a new, daily writing habit.

Past times. . .

In the past, I journaled during times of particular stress, for example: when my marriage was troubled and when I had a very ill newborn. I continued to journal for a while after the divorce, but life took over and it went by the wayside. When my son, Andrew, was so ill, he and I had been sent over 2,000 miles from home for medical care. I was away from my husband and other three children for five months. While writing certainly helped pass the long hours at the hospital I also wanted to document our time spent apart. I filled two thick journals.

Gratitude 

For several years I’ve read about writing down at least one thing you’re grateful for each night before bed. As I consider myself a thankful person I never felt the need to journal my gratitude. I now wonder why I felt I had too much gratitude to bother. I’ve recently felt that I do need to connect with all that I am blessed with. On my worst days I especially need to write down some of what I am grateful for. Otherwise I would feel hopelessness.

New Ventures

I was recently gifted a free three-month gym membership. I’ll be working with a trainer who has a lot of experience working with people who have Fibromyalgia. Journaling will keep me accountable for going to the gym as well as giving me a way to keep track of my achievements and my difficulties.

I have also reduced the amount of Lyrica I take from three capsules per day(450 mg) to one capsule per day(150 mg). I need to document how the pain and brain injury are affected by this  reduction. Just so you know- today is a toss-up. I feel ever so crappy, but it is cold, rainy and windy. Could be the weather. Could be the reduction in medication.

Stress Journaling

Last week I read an article about “stress journaling.”  The idea is to write down what you are fearful of or what is stressing you out. According to the article, studies have shown that when people write down their fears and/or stressors  the fears don’t look so big and bad.

While I’m excited to start exercising, I am also fearful. Yet when I write down, “I am going to go to the gym to work with a trainer who has lots of experience working with Fibromyalgia” it doesn’t feel so scary.  My mind settles down and I think, “The trainer knows a lot about Fibro, he’s not going to push me too much, he’ll understand when I can’t do something and he’ll understand why I sometimes must stay home.” I’m still a bit nervous, but my mind is no longer a swirl of fretfulness. As the brain injury causes me to have anxiety, this could be a very useful tool for me.

Give It a Try

I do not feel that a journal should be a taskmaster. You can write at the same time each day or you can just jot a few things down when they come to you. You could use it for documenting symptoms, writing down your blessings or saving you sanity. Whatever you want. Don’t feel you have to go out and buy a fancy journal either. I have journaled on notebook paper and spiral binders as much as in books designated as “journals.” I’ve even made my own books(fun!). For that matter, you can journal on your computer.

I’ve decided to use one book to keep track of everything-my health, exercise, gratitude, etc. I’m not sure which type of book I’ll get, but I hear there are some cool new journals that include pictures to color. Sounds good to me! (Refer to Have You Discovered. . ?)

Deb

 

So Far. . .

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This quote is from actor/director Leah Remini.

I love this quote! It is so encouraging. It allows us to turn our truth around and look at it from a new direction.

I Just Wasn’t Thinking. . .

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As I’ve shared, the last two weeks have been pretty rough for me. Last week the Chronic Fatigue(CFS) flare was subsiding, but the Fibromyalgia (Fibro) flare was still going strong.

This Fibro flare was really scaring me. It was almost as bad as when I first came down with CFS. Back then, I spent a year and a half  in bed.  Last week I could hardly get myself out of bed some days; one day I couldn’t get up until 1:30 in the afternoon. A friend patted my back and about sent me through the roof!

Wednesday I saw my doctor for a regular check-up. She was puzzled as to why I felt so bad, asking, “What caused this to happen?” I was so surprised that she didn’t know that Fibro does what it wants. Of course we can overdo it or be experiencing a lot of stress and get a flare. But, just as likely we get a flare for no fathomable reason.

Once my doctor got past the ‘what caused this’ part, she started to work on what would help me feel better. As we were talking she asked if I thought my muscle relaxant was working. I had wondered that myself as I’ve been on it for 12 years. We decided to change to a new med. Over the weekend I noticed I was having less pain and muscle spasms. I feel the new muscle relaxant is really helping.

I take a lot of meds. I’m always so careful to know what medications I take and what each of them is for. Yet, I haven’t been very good about evaluating whether or not they are each doing their jobs. At this doctor’s visit I needed an increase in one med and a complete change of another. I knew the meds weren’t working (very swollen hands and feet AND muscle spasms galore!) and yet I didn’t call and talk to my doctor. I just blamed it on the Fibromyalgia and CFS.

I made a mistake that is fairly easy to make. It’s a mistake that I think anyone with chronic illness and/or pain could make.  We need to evaluate the medications we take. We must think about whether they are working well or even working at all. Then, we need to discuss with our doctors what other medications might better control our symptoms. It’s an important aspect of self-care.