I Can be Distressed or I Can Practice Acceptance

My partner and our daughter (27 years old) left  yesterday to go to Disneyland. They haven’t been for more than 10 years and this is kind of the trip of a lifetime for them to share as adults. They both really enjoy Disneyland, while I don’t as going on rides is just too stressful and causes too much pain for me.  I stayed behind to take care of our daughter’s cats and my dog. I had to rent a car in order to do this. It’s a wonderful car with leather seats, electronic starter ignition, and well I was thinking that I might take a small road trip over to the beach. Instead this week is going to be filled with more rain. We all know what weather changes bring, pain.

I could feel very upset about this development. And I do feel a little bit sad, I also feel a little upset about renting a car and not using it.  This is a perfect time to try and practice what I’ve learned in the past; in the winter I have more pain and there’s no point in getting upset about it. That doesn’t mean I don’t get upset , I do, but dwelling on that feeling is not helpful when you’re in so much pain you can’t get out of bed. So while they’re in Disneyland my Rent-A-Car will sit outside and look beautiful and I will remain cozy with blankets and the cats and dog inside watching marathon episodes of who knows what on cable TV. It’s a perfect time to begin to process acceptance as winter is here and it will only get more brutal.

I’m sure there’s other peers of mine out there practicing the same thing today, so let’s all practice together.

PS, I used text to talk for this blog so forgive any errors. Have a great week and I’ll get back to you later, dear blog.

 

 

 

 

 

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Taking Full Advantage of Those Days When Winter Weather isn’t Knocking our Socks Off!

Winter Weather Knocking Your Socks Off

 

http://www.mysnippetsofinspiration.com/wp-content/uploads/2015/06/blow-your-socks-off.jpg?7e71b0

This El Nino weather is certainly knocking me for a pain loop. In the last three weeks I have a extreme pain flare about twice a week, one week, three! I was prepared for this, or at least I thought I was; I was not entirely ready for the intensity. I did mentally note that this would probably occur and find myself more accepting of the days when I have to give up doing anything I had planned and spend my day on the couch.

By preparing, I accept these days better and use my days not in pain to do the best I can to catch up. Of course, I am not really getting all I need to do accomplished. When do I ever? I have changed my normal course of dealing with household chores, and out doing errand chores, to dealing with whatever is the most important and leaving the rest for when I can get there. There remains a niggiling of guilt about this, but overall I feel good.

I have discovered over the last 17 years that guilt or shame doesn’t serve me well when it comes to pain I have little control over. Weather winter is the one place where I simply can’t change anything about planning how to approach pain. It is pain that pops up as it will. It is and it has it’s say about my body. Period. Accepting this frees me from negativity.

This would be a large issue if I was working currently. I simply could not unless I was allowed to have a flex schedule that allowed me to work any day that I felt “normal” pain levels. I did not see that happening and despite the real fact that I am dealing with other problems that make work not an option, I planned on waiting this winter out before trying to even find work I can do again.

This is more than just a check-in about my life and pain. This is written with the hope that my peers can find inspiration in my life story and not guilt trip themselves with negative thoughts. If we have no control over events, how can we be guilty?

 

 

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

Barometric Pressure Changes; Their Effect on Chronic Pain, Despite Research that Denies This as Real

Change in Weather
Change in Weather

One of many Research Links That all Agree Barometric Pressure has Little Effect on Fibromyalgia Pain

Slide Show on the Difference in the Symptoms of Arthritis and Fibromyalgia

Good Afternoon,

I was very surprised to discover that all the research performed on increased pain related to changes in barometric pressure all agrees that there is no effect. I then performed searches on this topic in many forums and blogs and found that all chronic pain survivors agree that it does have an effect on their pain. It has certainly effected me for the last 16 years. Additionally, every Peer I have posted with and spoken to over the years are adamant that this causes them to experience an additional pain load.

Yesterday, at 5am, I began feeling a large flare of pain in my upper back, neck, a headache and pain in my right arm. When I got out of bed,  it was beginning to rain. For me, this is increase in pain is directly correlated to any drop in the barometric pressure. Later on in the day, the clouds cleared a little. My pain, which had adjusted to the pressure drop (lessened),  increased again. That evening, the clouds gathered back in with additional rain. As usual my pain began increased again. Due to this up, down, up pain, I wound up going  to bed a bit earlier than usual, even though research states this increased pain doesn’t exist. Yet, this according to the few studies performed to date, this should not have occurred.

I wonder what the studies are missing in their measurements? One issue I have about the lack of correlation may be in an important, missed measurement from “The Dutch Study” cited above. If you go to the actual study, not just the study as discussed in the link above, they studied pain and weather factors in only women for only 28 days. Most importantly, the researchers do not state what season of year they performed the study in. Perhaps this is one missing link to understanding chronic pain increases with changes in weather. I know that I am at my worst on days like yesterday which generally begin in the Fall and worsen in the Winter.

Fibromyalgia is considered to be an arthritis condition by the “Arthritis Association”, without inflammation. I can not state the research performed is incorrect, but maybe it’s still early in figuring out the correct items to measure.  I did not have either one of this medical issues until I was in my 30’s.  I grew up loving the rain! I ran outside, barefoot and walked through the gushing, water filled gutters. As a teenager, I continued to take off my shoes to feel the wet pavement. I opened my window throughout my entire life, until I became a Fibromyalgia survivor, to listen to the rain drops.

I still love the rain. I love the cloud formations. I enjoy thunder and lightning. My body, however, hates them all.  With an El Nino year forecasted to be strong in the Pacific West this winter, I am not a happy camper. I am already getting out my tools that help me address winter days in order to do my best to live Well during El Nino with increased pain due to those drops in the barometric pressure.

wishing you all a great, sunshine filled, fall day,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor

Fibromyalgia Pain and the Cold Wind on Muscles, a bad Idea

Good Evening Peers,

I learned the first year  that I acquired the Fibromyalgia syndrome that cold, especially cold wind, hitting my neck was asking for trouble. I first discovered this when I took my teen daughter to her swim team practice. It was a cold, foggy day with winds and nowhere to hide. I was in agony.

Today I took my dog for an off leash walk down at the bay. Great idea for both the dog and my knee to exercise, right, wrong. I have been surviving record heat wave temperatures since yesterday. I knew it was supposed to really cool down today, so I  did bring a warm sweater. I also know that this area by the bay is the channel that the fog streams through, so layers are always an essential there.

Not only was the fog, already dense and low, streaming in, but it was being pushed onshore by fog chilled wind. My warm sweater felt like a summer night’s wrap! No, I did not have a hood or hat, or a scarf to protect my neck. I soldiered on, in fear of the consequences but determined to take our walk. This was a very dumb idea. I began getting pain in my neck 20 minutes later, yes, really 20 minutes. It is now two hours since I left and I am about to hit the bed in a flare up of pain. My neck is screaming at me.

My situation brings up a very common symptom of Fibromyalgia; not being able to tolerate cold. Additionally, any change that lowers the barometric pressure is very likely to increase pain. I can accurately tell you when it will start raining. My accuracy is usually not off by more than 10 minutes. Based on the above it would have made sense to also bring a scarf today. But I didn’t because I was used to triple digit heat and somewhere in my brain colder weather, the bay, fog and wind just weren’t fully computing.

My sincere hope in posting my day’s story is that as a Peer living Well with Fibromyalgia you will always remember to leave these two basic items in the trunk of your car. Fall is here or it is coming to you soon. Fall is followed by winter and for people with chronic pain we need to make simple preparations now. Just like me, no one will be perfect every time, but we can try to be.

The one item I wish I had control over is the falling barometric pressure. If it falls at night I can usually handle the next day well. If it starts falling any time during the day, my bed becomes my home as soon as possible. I wonder if researchers could discover why this occurs to chronic pain survivors? As long as  I am dreaming, maybe someone can invent a device that keeps our internal barometric pressure at the same setting??

Heading for bed,

Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Advisor