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

 

I’m Feeling Optimistic!

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I started going to the gym this week. Aside from it being a strange, new world to me, I did way better than I thought I could. Some exercises were so-o-o-o-o difficult! I am quite sore! But, I feel more alive than I’ve felt since the car accident in September of 2004! ( I know. I’m overdoing the exclamation points!)

Nobody’s There to Judge

While waiting to see my trainer, Luke the first time I went, all I could see were people and their water bottles in constant motion. If they weren’t running, biking or on the elliptical, they were working on a machine or moving to another machine. It all seemed so orderly and everyone seemed so adept at whatever exercise they were doing. It was only when Luke started me working on the machines that I was close enough to see the grimaces on many people’s faces and see men and women with sweat pouring off them. At that point, all my inhibitions disappeared. I realized that nobody cared about my somewhat lumpy, overweight self. They were all there to work on themselves.

I May be Slow, But I’ll Get There

Tuesday I rode the bike for one mile and I got through all of the upper body exercises Luke showed me. Friday, I rode the bike for two miles and did the upper body workout I learned on Tuesday. I then met with Luke to learn the leg, hip and tummy exercises. Those were tough, but I got through them all. Afterwards, Luke went over my workout plan with me and talked about how I needed to get my heart rate up to the appropriate level while training on the bike. I must keep my heart rate up for 30 minutes. I’ll get there.

So Sore

Luke has experience working with clients who have Fibromyalgia. He is not pushing me hard, but is teaching me to push myself. Wednesday my arms and back were really sore. I didn’t baby those muscles, just tried to use them normally. Thursday I was barely sore and realized I only was sore from my workout and not in much pain from fibro. Today I am quite sore from the lower body exercise I did yesterday. I am trying use those muscles normally (sitting down and getting up are especially difficult) and again I only have muscle soreness rather than fibro pain.

What’s my Motivation?

Luke asked me how motivated I am to getting in shape and why I am at that point now. Truthfully, I’ve been doing a great deal of reading and thinking the last two months. I’ve been able to rid myself of some old emotional baggage I’ve been carrying around. Once that was gone I was left with one emotional issue; I’ve become angry and resentful of how Fibro, CFS and the brain injury have limited my life. I hate taking all the medications I take, along with all the side effects I have to deal with. I cannot stand the food I have to eat since I was diagnosed with Gastroparesis. It’s basically the opposite of a healthy diet. So I decided to test the waters. I want to see what I can do to feel more control over my body.

This is Happening at the Right Time for Me

I kept this decision to myself; I didn’t even tell my closest friends. Seemingly out of nowhere, a friend offered me a free three month membership at her gym. Then I ran low on Lyrica and instead of three per day, I only had enough to take one a day for about five days. I did so well on the one capsule that I called my doctor who gave me permission to stay on the lower dose. I began adding more nutritious foods back into my diet and that’s going well. When I got to the gym and was weighed, I had already lost nine pounds since my doctor’s appointment three weeks before. Everything is coming together marvelously.

I’m Suffering from Complacency

I know many people wouldn’t be able to do what I’m doing now. I don’t believe that everyone with chronic illness should jump up and try to fight against their illness. That would be silly of me. What I do believe is that over the 12  years since the accident I have become complacent, feeling I had no control over what was happening to my body. Lyrica has helped tremendously with fibro and nerve pain, but the price is a 30 pound weight gain. I’ve accepted having to take meds to fight the side effects I get from other meds. I accepted the fact that if I squat down to pick something up I can’t get up and will have to crawl to a piece of furniture and drag myself back up. I want to shake off that complacency and see what I can do.

Alive and Awake

Having sore muscles has made me feel alive and awake in a way I haven’t felt for many years. Working to rid myself from emotional garbage that was decades-old freed me to take as much control as I can over my life and body. I’m stretching emotionally and physically and finding my boundaries for myself. I’m also journaling about this new adventure. It’s a great feeling!

Deb

 

 

Is it Worth It?

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Last night I had to stay up until after midnight to apply for a Section 8 housing voucher. (Yeah, I know-what a crappy time to have to get yourself entered into the lottery!!) Anyway, I ended up frazzled and forgot my bedtime medications.

I flopped around all night, too hot, too cold, too everything. I felt awful this morning and finally remembered I had not taken my meds. In particular, I had not taken my Lyrica.

Now Lyrica is in some ways a miracle drug for me; I firmly believe that without it I would be bedridden. I first was prescribed Lyrica to help slow down my brain after the traumatic brain injury. Months later I realized that the fibromyalgia was much improved. It also helps with the nerve pain I have in my neck, back and hips.

However, there are two problems with taking Lyrica-the first is the side effects and the second is that it’s addictive. I take meds for the side effects it causes and heaven help me if I miss a dose or two. I get chills, sweats, severe abdominal pain, nausea, diarrhea, and a headache so bad I can’t describe it. Now, let me be clear-I am not mentally addicted to Lyrica, I am physically addicted. My body goes into drug withdrawal when I don’t take it.

The withdrawal is not only nasty to go through, but it also freaks me out! I won’t take narcotics for severe pain because there is a family history of substance abuse and that scares the heck out of me. I’m addicted nonetheless.

I don’t take any medications I don’t need to take and yet I take 30-some pills each day. What’s that doing to me? to my longevity? to my best possible life? Is it worth it in the end? I guess for me the answer has to be yes. I would hate a pain-filled life spent in bed.

Any comments or experiences you’d like to share? This is a tough subject and I’d love to hear how others deal with it.

Deb