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

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

 

 

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’m Not Feeling Very Well

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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!

A Relaxing (kind of) Weekend

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I have a rule that I always stay in my pajamas during the weekend. My rule keeps me from leaving my apartment to do something that will increase my fatigue and staying in my pajamas keeps me in a more relaxed state of mind. Because I also have a lot of weird sensitivities from the brain injury, I often feel much better in loose fitting clothing.

So last night I got all my chores done and put on my pjs. Friday night is always the start of my weekend. Since it was after dinner I decided that I would color before bed time.

Coloring 1

This is me sitting at the table trying to color(with Niecy’s help!).

Coloring 2

Then, this is me sitting at the table 15 minutes later trying to color(with Lizzie’s help!). Anyone who has a cat knows that when they settle on your reading or coloring it’s almost impossible to remove them. I cleaned up my mess of pencils, etc. and went to lay in bed and read.

This morning I slept longer than usual and was roused by a friend who had a procedure on her back and needs daily dressing changes for the next few days. Since I was a nurse before the car accident, I was the natural choice for dressing changes. I got up and scurried around, feeding the cats, taking my morning meds, brushing my teeth and all that. Since I still had some time before my friend came over I started a project that I’ve been dying to get done.

Wall Hanging

I’ve had the rolled paper tubes attached to the backing for a couple of weeks, but finally got the flowers and birds glued on. I am so happy with the way it turned out and it looks great over my bed!

I no sooner got the wall hanging hung up when someone knocked on my door. I let my friend Riccardo in and he presented me with the nicest Easter gift.

Easter Gift

Isn’t it a fun gift?! Anyway, there was another knock on the door and it was another friend who stopped by. So the three of us chatted for a few minutes(We all live in the same apartment building) and then Riccardo left. Ann and I had a really nice visit.

Today was not a quiet, restful day, but it was such a pleasant day that I feel too happy to let the fatigue bother me. To me, sometimes the fun is worth the fatigue even though I know the fatigue could kick my butt for the next two weeks.

Anyway, that’s been my weekend so far. Who knows what tomorrow will bring. . .

A Most Satisfying “Wasted” Day

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I’m still trying to take a “time-out” from life’s whirl. Today has been the first truly successful day! No knocking, no calls and no chores were nagging at me. Oddly, it is 7 pm here and I just now realized how good it’s gone today!

Just so you know-I did feed my cats, wash my face and brush my teeth. But that’s about all. I am still in my pjs and my hair is scrappy from bedhead. What did I do all day? I played with my computer. I started out just needing to print my friend’s boarding pass for her flight to Seattle tomorrow. But first an article on CNN caught my attention. Then another and another. You know how it goes! Then I saw an ad for a hair growth shampoo and that sent me scurrying for reviews (every time chronic fatigue flares I lose a substantial amount of hair) and onto Amazon to price it and read more reviews. Then I shopped around on Amazon for a while(no buying today). I dare anyone to look at only one thing while on Amazon! In between sites I played many games of Solitaire. I didn’t get the boarding pass printed until the middle of the afternoon.

I did do some useful things-printed out an article, with illustrations, titled “The 10-minute Gentle Yoga Routine That Can Help You Lose Weight” and another called “7 Best Yoga Poses to Curb a Binge.” They both came from Prevention magazine’s website. I did pet each of my cats every time one of them became suddenly love-starved. And I did eat lunch-hot, delicious  Meals on Wheels food that my friend brought me after he got done with his meal. I usually have to walk over to the kitchen at our apartment complex to eat lunch so I didn’t count Steve’s knock as a door knock today!

My point is not to bore you with the details of my day, but rather to make a point of how a lazy, fooling-around day can sometimes be satisfying. There’s no way I could live every day like I did today, but I feel like I had a true “time-out” day. I feel gratified to have had a quiet day to myself; for once I don’t feel guilty for “wasting” my day; I feel too satisfied and relaxed for guilt to nag me.

What are my plans for the rest of the day? After dinner I’m going to do some coloring!

Deb