When You Get a Break from Pain

you-are-my-sunshine-4

https://thecandyperfumeboy.com/tag/sunshine/

During the last eight weeks I have experienced less pain than I have in years. In the 16+ years I have lived with fibromyalgia, this is only the second reduction in pain I have had the pleasure to be in. Despite many other medical issues during this time, emergency gall bladder surgery, stomach flu, the flu, and migraine headaches from my experience of being rear-ended, my chronic pain is at a low of 3-4 on the pain scale! Well, except for a once a week flare up of pain that keeps me bed ridden, but, hey I will take this exchange anytime!

I have been paying attention to the decrease in my normal achey body and wondering, why? Could it be that my gall bladder was taken out; that seems whacky as most fibromites experience surgery as exacerbating their pain levels (I have blogged about this before, explaining the need to discuss this phenomenon with doctors prior to surgery). I experienced this after my knee surgery two years, so that doesn’t feel right. Perhaps it is my mood, which has been better in general since my gall bladder surgery. Or, maybe it’s the fact that I lost an incredible amount of weight over the last year because I was so scared to eat anything! Let me explain this further; I was misdiagnosed with gastoparesis a year prior to the surgery, which led the doctors down the wrong road. Every time I went into the emergency room it was reinforced that my diet was causing the problem. The pain was off the charts and if it was caused by eating, then I wasn’t going to eat, at least not much! Definitely not the best way to lose weight.

Losing the weight finally allowed me to walk without a cane, to use the stairs with one leg at a time per stair, and to walk three miles at a time for the first time in three years. This leads me to think that possibly losing the pounds is the reason for less daily pain. I gained 60 pounds when I was pregnant with my daughter, 27 years ago. I never really lost that weight and gained a bit more over the years. Since my surgery I have been complaining of needing to buy a entire new wardrobe, two sizes or more, smaller than I previously wore. This has caused others in my life to politely ask me to stop whining as they are still trying lose their own weight, a reasonable request.

Still, it bothers me that I lost soo much weight so quickly; it can’t be healthy. However, if there has been two shining gifts from the loss; my usual 6+ daily pain (at least for now) and my ability to walk normally,and even drive my own car again. I thought I would never be able to do these things again. While I have decided that losing the pounds is the reason I am in remission, I am still caught in the thought process of fear that all chronic pain suffers seem to loop in. I find that I am frequently holding my breath for the other shoe to drop. The shoe of the fall and winter season. It’s glorious to be in less daily pain, don’t get me wrong, but I can’t help noticing that the season is changing. I am doing fairly well at pushing the negative thought away by breathing in the freedoms I am experiencing. So, for today I will remember to use my positive tool of just breathing.

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Words of Wisdom for “Creating Better Health” and Less Stress by Toni B.

Hi Peers

I read this yesterday and it fell right into my belief system when it comes to doing my best while living with chronic pain. Toni’s choices are the same as mine, her articles always serve to affirm and remind me to keep striving towards my best.

Enjoy:

https: //www.psychology today.com/blog/turning-straw-gold/201604/when-you-re-chronically-ill-giving-versus-giving-in

Accepting my Limits, Creating New Strengths

It is very difficult to accept limits on living your life. I have gone through this process before; during the first three years of my diagnosis of fibromyalgia. These last few years I have had a much harder time. Maybe it is because I am older now. Maybe it is because there are more than limits now. Or maybe I am just not willing to let go of my dream that I spent ten years creating. At the end of the day, none of this matters, I have to accept my new limits and create new strengths.

Just like the first three years of living with this chronic pain, my loved ones are tired of me being limited. They are tired of hearing about it. Tired of watching it and tired of helping me. I can not say I blame them as I am tired of it all as well. The disconnect that worries me the most is that they want me to fix it “now” and I am not capable of spinning a magic spell that will get there tomorrow. I am able to begin to plan steps to follow that will get me there, and, it is time to start.

Sure, they could go on and assist me indefinitely and I could continue to feel guilty and disempowered. But my mental health is on the line now. I need to affirm my new strengths. To start this process I need to know what they are. Just thinking about starting over again in this planning, journaling, and finding the new me is overwhelming. This makes taking even the first step daunting.

As daunting as it may be, I am beginning to take that step. I have begun to reorganize my home life in order to function within better. That is the first and most important step we all can take. Once we are able to feel empowered to handle at least some of our lives in our world, we can begin to find more hidden strengths.

I am beginning to realize that spending those ten years following my passion for social work, to assist persons in physical and mental distress, was not entirely a waste. I may not be able to do all that I learned, heck, I may be only capable of doing a small amount of it, but, I can still do it! I have started here, on this blog. I am beginning to branch out from this blog to more on social media. I have recently thought of what I might be able to create or offer to agencies out in the brick and mortar world.

None of this will occur tomorrow. It might take me a year, it might only be six months. I have put these ideas down in the section of my journal entitled, “Important Thoughts”. I use this journal daily. I will continue to take the time to work on my new strengths and stop focusing on my limits every day. We can all do this, I know we can..

Fibromyalgia, Winter is Here

winter and the white owl

Winter is here. All of us with chronic pain are getting our “bundle up” clothes out, getting our layers of clothes ready. I have a window during the day of about three and half hours when I can get by with a light sweater top or a light sweater over a long-sleeved top, with scarf.  Mornings, I crawl out of bed to touch a cold floor. I put on my pj sweater to make my tea in the cold, cold kitchen. Then, I pull open the curtains and get  to my couch to cover up with a throw blanket while I wait for the sun to warm the room. By the early evening the process starts again.

When I go to bed, I keep my pj sweater, sweatpants, and socks on. This despite having a down comforter and a thickly knit blanket on the bed already. I am keeping a scarf, hat and gloves at ready in my car. This does not include the few extra warm pull-over jackets with hoods that are always in my trunk. Or all the socks that are strewn about the house, socks that just a few weeks ago were put away for the summer.

I love the winter months, with all its glorious sunsets created by the rain clouds. The sound of rain is melodic, it soothes my soul. The opposite of this is that internal pain as I feel the pressure dropping. I have come to dread this. Despite this dread, I still have the choice of snatching that positive moment each day and holding onto it like treasure. I choose to keep my treasured moments each day, holding them close to help me ignore my pain.

This last week has been a time that is reminding me of the winter to come. The extra pain my body will endure. As I hold this reminder, something else has been on my mind. When I go to my beloved forums and blog sites, I am frustrated. I read the comments posted about virtually every subject, and, I read that my Peers are continually fighting with their pain. Their comments are sad. Their comments are mad.

I understand, I too get negative. But, in order to come to terms with this syndrome, I must stay in those moments of small gifts. I have lived with this for 16 years. I watch my Peers continue to complain, year after year, and I wonder what would happen if they just stopped fighting this? I believe it is possible they would live better. Yes, the pain and the brain fog, along with exhaustion would remain. We are more than our pain. We are human beings with much to offer others. I do not believe getting your feelings out with a negative statement every day, even to an anonymous site, helps our brain to reframe itself.

Tonight as I wrap myself up in warmth and feel a headache from the neck and shoulders coming on, I pray that my Peers can get through another winter without focusing on the negative.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor

Creating the “Me Space”, It’s Not as “Easy as Pie”. More Wellness

Source: Creating the “Me Space”, It’s Not as “Easy as Pie”. More Wellness

Social Workers who Believe in Fibromyalgia and Started the Concepts of Helping the Peers with our Invisable Pain

2007 Link to Article on Social Work Today

Good Day Peers,

I found this very interesting. I am, currently, a non-practicing Social Worker/Therapist, so this interested me quite a bit. I am actually moving in the same direction with my work concept as these social workers have already; actually, I went to back to school for 10 years to find a way to integrate psychological, advocacy skills, to stop stigma and to create and implement programs for our invisible disability. From this article, I found that there are centers around the country that have created programs just to assist us.

I also read about the early thoughts, (I say early as items like exercise are just now becoming mainstream medical processes for us), stating that there were many factors needed in order to address us living Well. Most of these are now in vogue, although they do not help all of us. I know firsthand that assistance like exercising to build body strength and getting our endorphins going (the happy neurotransmitters) are not for everyone. We all experience our symptoms and capabilities differently. However, with that said I do agree that we should all try our best to practice all of these methods. We should not just rely on medications.

I hope you enjoy this article, it has keywords in it that can give you further help if you Google them as also.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

Yes, People with Chronic Pain/Fibromyalgia do Work

new good spirits
new good spirits

working and firbo assistinng huricane katrina survivorsWorking while surviving and planning to live Well with Fibromyalgia is not uncommon. I have worked, volunteered during Hurricane Katrina, spent 8 years in college and then two years in graduate school. During those last two years, I interned 24 hours a week; with a full schedule at the university. I was in pain and many days it was a struggle. Once every other month I had to call in and tell them I was unable to come in as my pain level had increased. Usually, I was able to cover most of the work from home, otherwise I completed  the next day. It was an interesting experience to work with my fibromyalgia syndrome; in many ways.

I never had a supervisor or coworker come right out and tell me that I was incapable of performing my job duties. I am actually a very competent worker, or was then. Most coworkers were considerate about my pain syndrome, but, there were always the few who I just knew looked at me sideways. I choose to ignore them as simply being ignorant of my situation. Better than that was doing this;  if the opportunity came up, I would spend a few minutes in conversation with the person, discussing what it felt like to be in my body. I let go of their internal reactions. Afterall, this was not my personal issue and didn’t serve any positive purpose for me.

I am not currently working but I would prefer it. I found out that I did better when I was out among people. When I moved my body and mind from task to task. I definitely paid for it some days! I have often pondered why working and studying so hard helped me with my pain levels. I have come to the conclusion that my serotonin and endorphin levels had a greater output. Why? Because, I was happy, I was exercising, I was using my brain to focus on others and other things. I was not giving it the time to focus on my pain.

This has taught me a lesson that I keep close to my heart; keep as busy as I can. My busy today doesn’t come close to the busy then, but it still accomplishes some of that distraction that I used to experience. I know we all get angry at our doctors and family who tell us to stay busy. I did and do, don’t get me wrong. However, it turns out they are correct, at least for me. On the days when I flare beyond my endurance to get up and move my focus is all on my pain. There is no joy, no tasks, no focus on something besides me which stops those all important  neurotransmitters from firing as well.

I am not writing this to chastise those of us who can no longer work. I am remembering that it can be better than just staying home. Work is a subjective idea. I try to work on my blog and other plans every day at home. I stay busy with odd, small and quick jobs in the house. I pick one larger chore each week and focus on it for an hour. Keeping an organized, and same plan in place for what needs to be done each day also allows me to look forward and know where, and if, I can do outside of the home activities or maybe just spending time drawing for a half hour.

I have spent today engaged in a few small tasks, like this blog, responding to Peers on forums and blogs, submitting a page for publication (it was already complete) and know I am going to work on a my once a week large project. I am going to go do this, despite feeling like a large flare is coming on; perhaps if I get going with it, my pain levels will decrease. Perhaps not. But, for me, it is worth trying.

If you missed my organization tips for a binder or a daily reminder book, or just handling your chores, use the search box. Wishing you all the best in whatever efforts you can handle today.

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach

My Fibromyalgia, I want to Thank You for Allowing Me to Have a Great Day!

Bluebirds Have a Good Day

There are too many days when I forget to feel that normal feeling of having a great day. Yesterday was one of these days and I knew it.  I had to get up early, after only six hours of sleep, and go down to the repair shop where my car had been towed after not starting. The car support personal was not sure if it was a simple or complicated fix. I was given a free rental car for the day. I was knocked out by the car! A 2015 Chevrolet Malibu, equipped with everything power and when you put it in reverse or drive, the screen shows you what is in back or in front of you! I have never been in a “modern” car like this. Wow. Love this car.

I was up and I had things I wanted to do; especially after receiving this car. I felt like a kid on Christmas morning. I began doing errands, got more tea, picked up my daughter and continued on driving us all over town. I was just enjoying a car that powered up my seat higher in height, so my knee did not hurt as much as usual, great a/c, radio and the freedom. I did have to limit the amount of stores I actually went inside of, instead I sat in the car happily feeling the air on my face, while she went in.

I had pain in my knee and neck after the day was half over, but I pushed through anyway. Not only did I have my car candy but I was able to remain calm the entire day. My daughter has shied away from me over the last few weeks due to my frequent and unpredictable emotionally down days; back to lashing out or crying lately. We were finally able to work through this after an uncomfortable start to the day! Wow. I got my best buddy back.

Yes, I was flaring with pain by the time I got home. Today was much harder also. But, here is the point of the post. I don’t often get blessed with just being handed those moments, all day, where life is just life. It’s not about Fibromyalgia. It is just me and a friend or family member enjoying doing silly things like finding Halloween outfits and trying on sweaters. Being fully aware  that I was being gifted this yesterday, it felt like a warm hug.

Oh Happy Day,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach