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

 

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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

 

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.

It Doesn’t Take much. . .

tablets-345941_1920It usually doesn’t take much to make me happy, excited even. Yesterday, I was outright thrilled by a short entry in the formulary I received from my new health insurance company.

As I was thumbing through it, looking to see if my meds were all covered, I found the heading “Fibromyalgia Agents.”There were only three medications listed: Duloxetine(Cymbalta), Lyrica and Savella, but I got so excited.

Just a few short years ago there were no meds that specifically helped Fibromyalgia; I only found out that Lyrica helped my fibromyalgia symptoms because a neurologist put me on it to help slow down my brain after I had a traumatic brain injury. I also take Cymbalta-for me it helps with depression and back pain.

I have no experience with Savella, but I know it was specifically formulated to treat fibromyalgia. As you all know there are many other meds we take to help the chronic pain and fatigue, but for now the three listed are a vast improvement.

The second reason I was so happy to see that heading is because  it means that my new insurance company counts fibromyalgia as a real illness. For too many years people with fibro have had to put up with not being taken seriously by the medical community.

We still need to help educate more health care providers and for certain there needs to be more time and dollars spent on fibromyalgia research, but there’s been some positive movement on our behalves and that makes me very happy.

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