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

Advertisements

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!

yoga-297527_640

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

 

 

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

 

I Just Wasn’t Thinking. . .

medication-1329267-638x530

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.

I’m Not Feeling Very Well

how-tired-can-you-get-1314483-1280x960

The other day a neighbor said to me, “I haven’t seen you for a while.” (translated for your convenience: “You didn’t go to our coloring get-together this week”) I told her that I haven’t been feeling very well. Her reply was, “Well don’t forget we’re meeting on Sunday afternoons too.”

Now it’s Sunday afternoon at 3 pm. I live right next to the lobby where we have a large table and chairs as well as big, comfy armchairs so we can meet to chat or to have parties or have, for example, coloring group.  I can hear everyone talking and laughing while they’re coloring. I’m at home feeling teary.

There are a couple of reasons I’m feeling so teary: I am in so much pain I can barely stand it and because my neighbor did not appear to understand why I couldn’t go today.

Yes! I am having a bit of a pity party! I haven’t had a flare this bad for several years. I’m used to having pain every day of my life, but today I couldn’t even get myself out of bed until 1:30 pm. I’m hunched over, stiff and heaven help me if I sneeze or yawn. I feel like a big lump of whiny!

The second reason I’m upset (and the point of this post) is that my neighbor seemed to not understand that I’m REALLY not feeling well. She has chronic Epstein-Barr virus and she and I have talked several times about flares, pain and terrible, terrible fatigue.

Was it my fault she didn’t understand? I did say, “I’m not feeling very well.” when maybe I should have been more forthright, “I’m having a terrible flare and I feel like crap. I hardly had the energy to get my clothes on today.”

It’s interesting that this topic should bite me in the butt considering what I wrote about in my last post (I’m Fine, Thanks.) For sure I don’t want the entire building to know that I’m hunch backed, barely able to walk and scared to death to get into the shower until my caregiver is here tomorrow. However, I realized today that I need to trust some of my friends and neighbors more. Fibro, CFS, and traumatic brain injury are a fact of my life and a part of who I am. When necessary, I have to be truthful about why I can’t leave my apartment.

Almost immediately after I posted “I’m Fine, Thanks” I got the most wonderful comment Two Thoughts on “I’m Fine, Thanks.”  It was written by the blogger of  Outbursts of a Spoonie. She is right on point. Now I’ve just got to work on being as  brave and truthful as she’s trying to be. We all are certainly works in progress, aren’t we?!

Deb

PS: How do you handle telling others how you feel? Is it something you also struggle with? Share your thoughts with us. We’d love to hear from you!

I’m Fine, Thanks

friends-1272735_1280

This morning while I was doing my volunteer work for Meals on Wheels, the manager asked a gentleman how he was doing. His reply was, of course, “I’m good.” A co-worker and I teased him about the flat look he had when he said that. He grinned and said, “We all lie when people ask how we are. None of us says, ‘Oh it hurts here and here.'” I thought, “Boy is that true!”

I live in a three story apartment building that is for 55 years and older. I have many friends and acquaintances here so I’m asked how I’m doing whenever I come out of my apartment. I smile and say, “I’m fine thanks. How are you?” I’m not about to say, “Oh my God! I am having the worst flare of Fibromyalgia and CFS! My throat is so sore and my legs hurt so bad. The muscles in my eyes even hurt.” Yet that is how I really feel today.

People who know me well enough to know I have numerous illnesses, will come up with concerned faces and hushed voices to ask, “How are you doing today?” I can’t even bring myself to say the truth to them. It just seems boring and self-centered. I only have three friends with whom I feel I can be truthful and two of them are also chronically ill.

I think that these days, “How are you doing?” is for the most part meaningless; it is just a long form of, “Hello.” Yet we sometimes do need to talk about how we really are. For me it’s close friends, journaling, blogging and social media that provides a safe, comforting way to share without being seen as whiny or boring.

Deb

PS. Who or what is your way of sharing how you are really feeling? Please leave a comment. Other readers and I would really like to know how you share your pain and illnesses!