Chronic Pain

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Thank you for All Your Support!!

October 17, 2009 was my first official WordPress post to My Foggy Brain. Since that date I have written a total of 150 posts (including this one). I have been blessed with close to 123K views of my various pages and posts and 63K visitors from over 150 countries. WOW! That is craziness… I had no idea when I wrote that first post that anyone would read it, much less 63K people! THANK YOU!

When I think about those very early days of trying to figure out what the hell was wrong with me and the frustrating years until I was finally diagnosed… the first thing that comes to mind is grey. Just a whole lot of shades of grey… I was extremely depressed and feeling very alone. I was struggling to find the desire and motivation to live… There was hardly any information on Fibromyalgia readily available. I would go to the bookstore and search online to find and buy every single book I could find that had some sort of focus on Fibromyalgia. I was starving for information and I needed to know there was the possibility of living. I needed to know I could have a life again… 

I started writing because I needed an outlet. I wondered if there was anyone out there struggling like me… I wondered if there were folks looking for a place where they could feel hope. The blogs I was reading were of people going through similar struggles, but I couldn’t read them because the posts were full of pain and sadness… so, on October 17th, 2009, I created this blog.  

Over the years I would come back again and again during my dark days. I would sit there in the middle of the night and just start typing. I wouldn’t stop until I had most of my feelings on the page. Then I would go back and edit… and edit… and edit. After I read and re-read many times over, and added and deleted (but mostly deleted) content I would realize that even in my toughest moments, I am still so incredibly blessed. (I really wanted to underline that, but for some reason I can’t find that edit function anymore… so just pretend that’s bold AND underlined!) By the time I finished writing and hit the Publish button, it was impossible for me to sit there and feel like shit. At that very moment I felt a bit of joy (maybe not JOY in bold and big ginormous caps, it’s more joy in a very, very small font, possibly italicized). The main point (after being distracted by the importance of formatting fonts), is that I never felt as bad as when I initially sat down at my laptop. The act of writing always put things in perspective.

A decade later people can spell Fibromyalgia… there are drug commercials on TV all the time for it. There is a huge focus on chronic pain. People are way more accepting of mental health issues… way more than when I was diagnosed with Depression many decades ago. Although I am always on the lookout for new ways to manage my pain, for the most part I feel like I know what I need to do.

I feel this blog has served its purpose for me and it’s time to say good-bye. 

I want to take this opportunity to say thank you to my family and friends and those of you out there reading my blog that have supported me over the years. You have given me the courage to open up and share my life’s ups and downs and in return some of you have trusted me enough to share your personal experiences with me. Just knowing that I have helped some of you, encouraged me to keep writing.

This journey with Fibromyalgia, Depression, Anxiety, ADD, Essential Tremor, GERD, IBS, Degenerative Disc Disease, Cervical Stenosis and Lord knows what else (isn’t that enough???) will continue. I will continue to take each day as it comes and work through the bad days to finally see the light when the flares and black clouds try to bring me down. There is too much goodness within and around me to allow this shit to win. 

My biggest challenge most days, after managing the pain, is this damn foggy brain. I can’t remember a lot of great memories that I have shared with family and friends. Memories that are so meaningful to you are simply gone for me. I am sorry for that. Please understand when I get that blank look on my face that that moment is more painful for me than it is for you. I try to laugh it off, but inside I am cringing at the fact that once again I have lost a part of my past (and one I didn’t ever realize I had lost until that very moment). I can deal with the lost keys or lost memory of last week… but I truly miss being able to replay in my mind moments like when my children took their first steps. The point of this is not to bring you down, it is to hopefully help you better understand that when I don’t remember something, it has nothing to do with the role you play in my life or the level of importance of the event or conversation – it is simply a side effect of all the shit that goes on in my body/mind. 

Okay, well! I guess I really needed to get that off my mind because that is not what I intended to write (but then again, you all know how easily distracted I get…). 

Why am I shutting it down you ask? I have been thinking about this for the last few years. I’m not exactly sure why, it just feels like the right time. Journaling, which is basically what I am doing, can be done in many ways. I bullet journal on a regular basis and I have a private journal that I recently started. I have different outlets for dealing with my dark days… and I think 150 posts is a good milestone to end with.

This blog is one of the areas of my life I keep very private. My posts often have areas of my life I don’t want to openly share. I’m weird like that… I’m okay with folks reading it, but on the other hand I’m completely uncomfortable talking about it. I still find it unbelievable that my blog has received any kind of attention. Having said that, I am extremely proud to say that some of my most meaningful achievements come from the awesome recognition I have received:

  • Healthline’s Best Fibromyalgia Blogs of 2017, 2016, 2015, 2014, 2013, 2012… 6 years in a row!!
  • Masters in Health Care’s 50 Great Blogs for Fibromyalgia Support
  • Vita Sciences 100 Best Sites for Fibromyalgia and Chronic Fatigue Patients – the Master List
  • Feedspot’s Top 50 Fibromyalgia Blogs and Websites to Follow in 2018
  • Medical News Today’s Top 10 Fibromyalgia Blogs in 2018
  • Home Remedies for Life Top 25 Chronic Pain and Migraine Blogs to Follow Right Now – April 2018
  • Chronic Pain Disorders 10 Best Fibromyalgia Blogs for 2016
  • PainDoctor.Com’s Best Fibromyalgia Blogs of 2014
  • WEGO Health’s Most Riveting in the Health Activist Writer Month, May 2012
  • Brian Barr Solicitors 5 Top Fibromyalgia Blogs
  • Book and Website contributions: 
    • themighty.com’s ebook: “Real People, Real Stories: Fibromyalgia”
    • Fibromyalgia Journeys, A Collection: Stories of Courage and Peronal Triumph (on amazon.com)
    • ProHealth.com guest blogger: Words to Help You Get Through the Day 
    • Healthline’s “This is What Living with Major Depressive Disorder Looks Like”
  • Awards:
    • Fighterzine’s Fierce Fabulous Blogger Award
    • FibroModem’s Very Inspiring Blogger Award
    • … and One Lovely Blog and the Sugar Doll Award

It’s been such an honor to receive recognition, and even more meaningful to me are the emails and comments from those of you that I have helped with my words. In addition to the above, it’s been super cool that the Wellness Workbook I created years ago has been used by many institutions and followers. Another great opportunity for me was when my family and I were a part of the Invisible Illness documentary. Being interviewed as a family was an emotional roller coaster for a few hours… in the end, well worth it!

This part of my life journey has been amazing and I really thank all of you for sticking with me over the years.

I wish you all the very best for the holidays and I pray that you are surrounded with the love of family and friends and are blessed with great health, happiness, and infinite pain free days in the years to come!

Love and respect.

Tamiko

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Your Life is Worth Living… Blog that!

It’s May… and I can’t believe the amount of time that has passed since I last posted something. I feel like I say that every time… You can’t possibly imagine how much this blog has helped me over the years. If you are going through a painful time, just taking the time to express yourself through this type of communication can really make a difference in your state of mind. Even if you don’t publish it (I have a lot of content that I wrote for myself and didn’t post), typing your thoughts out can help you identify your truths. When I write it helps me realize that my life is good. My life is full of blessings and love. My truth is… My life is worth living.

I am sure many of you have said to yourself, “I’m so tired of this shit, I’m ready to go…” and by “go” you know what I mean. The pain turns into little to no sleep which turns into depression which turns into difficulty being a friendly human which turns into stress which turns into more pain! That cycle is so forked up… but in the midst of all that, there are some good times. For me that goodness can wipe out the sad, painful days and make me feel human again (even friendly human!). Even if it’s only for a few days or hours, it’s worth it. My life is worth living… and so is yours.

tom-sodoge-84368-unsplashTrust me… I definitely have my moments. I can spiral down that black hole with no notice. It would be great if there was a warning sign in my head with super bright (okay not super bright, I don’t want a migraine on top of everything else), but with flashing lights telling me to get out of the house, go breathe in some fresh air, focus on my blessings… literally anything to stop me from spiraling down that hellhole… but generally I can be pretty okay one minute and then BOOM! I’m in that space where you feel like you are watching your life from the outside and… it’s not good. It’s as if the Dementors are sucking all the hope and happiness out of me. I need a patronus… I’m thinking a mini flying elephant. Why? Because I love elephants… and why not small with some angel wings? Just for fun I did a search on an elephant patronus and this is what came up on the mugglenet:

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If you are wondering… my elephant’s wings only appear when called upon…

Elephant – Elephants have a formidable presence and are respected throughout the animal kingdom. Elephants are known for their intelligence, complex social structure, methods of communication, and fiercely protecting their young. As a Patronus, the elephant is sure to scare off Dementors through sheer size and unyielding determination to protect you.

I had no idea there was a list of patronuses (patroni? patronus? what is the plural of patronus?) out there, but I’m not surprised. Lord have mercy I have digressed… Anyway, what the hell was I talking about anyway? Ahhhh, the visual of the Dementor… it’s so relevant to me because it’s exactly how I feel when I’m spriraling (which is literally about a week, if you combine all the hours, out of a month). Let me try and get this post back on track… even if there are days when I’m so depressed I can barely move or hold a conversation, the good days make my life worth living! There! That was the point I was trying to make… a bit wordy, but hopefully you get what I’m saying.

The initial direction I was going when I first started writing today is that when I had noone to talk to about my pain and I was so incredibly frustrated with the lack of medical support and information out there… I started my blog. I felt very alone. What I appreciate about using this forum is that I can type everything that’s on my mind (pretty scary), go back and edit and re-write (you should all thank me for that) and when I finally hit Publish, I feel better than when I started. My writing process involves sitting in a quiet space (usually in the dark) and typing whatever is in my head. As I go through the process I probably delete and start over a dozen times. This is the part of the process that makes me realize how good my life really is. It forces me to focus on the positive and be careful to not hang on to too much negativity. I hope that when you read this, you realize you are not alone in your pain, whether it’s mental or physical.

Think about how you are feeling today, write your thoughts down – whether it’s in a blog or in a journal… read, re-read and edit and see if it helps you focus on the positive and get rid of some of that negativity.

Thanks for stopping by and going through this journey with me.

Gentle hugz.

Tamiko

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Anyone Else Exhausted?

IMG_9952I can’t believe how quickly the holidays came and went. We put our Christmas tree up the first or second week in December and bright and early December 26th the ornaments were off and the tree was on the street! I’m back to work after a week off between Christmas and New Year’s and… I am exhausted. You know when babies get so exhausted they just start crying for no reason? Or how about when kids are so exhausted they get angry and frustrated for no reason, remember that? That’s me right now… except I’m 50… not a baby or a small child. I have been going and going for so many weeks I can’t do it anymore. I thought for sure this holiday season I would pace myself. I actually got a lot more done in advance than any other year, but I noticed my energy level just keeps going down. My ability to turn things around after a stressful situation just takes more and more time.

Someone say stressful situation? My day started somewhere around 2:30 in the morning when I woke up with a jolt. This was not about pain… the whole house was shaking… can you say EARTHQUAKE??!!! After only a couple hours of sleep, I got up and started working. My work day consisted of several hours trying to resolve system issues mixed with attempting to get my work done. Can you say frustrated? I managed to finish working and planned for a relaxing night… let’s see… I clogged the kitchen sink and my beautiful aging dog left me a nice post-Christmas gift in the bathroom. Did you catch that? She went to the bathroom… IN my bathroom. Usually when she does something like this (which unfortunately is happening too frequently these days… poor baby) she kinda sneaks away and hides. This time she stood there and stared at me as if to say, “who in the world would do that to you? that’s so f’d up!”. It’s almost as if she was feeling my frustration and providing moral support… to clean up her mess.

Why am I sharing all this? I am exhausted. I know things are not good when I start feeling the blackness start to surround me and today I sensed my mental state starting to really spiral downwards…  So I decided to fight. In the midst of the crappiest day in a long time I chose to get up and get on the treadmill. It’s been weeks since I last exercised and today instead of allowing my depression to win, I fought back. I’m not saying that I am no longer depressed, but at the very least I did something for myself that was good. There’s the silver lining in my day. I need to end my day with gratitude.

Speaking of gratitude (it’s one of those days… my mind just bounces from one topic to the next)… We have plans to go on our first family vacation this year! I mean a “get on a plane and fly to Hawaii and stay in a super nice hotel” kind of vacation! I cannot wait!! I have 8 months to get my act together or it’s going to be a … “get on a plane and fly to Hawaii and stay in my super nice hotel room IN PAIN” kind of vacation. Nobody wants that. So! It’s time to get it together. I know that this kind of change is not going to be easy, but I commit to being kind to myself. I am not going to be perfect, I will not always follow a strict diet and I won’t all of a sudden run 5 miles every day… but I can do my best and make better choices. As long as I know I am doing my best without compromising my happiness, that works for me.

Now for a completely different topic (although it eventually ties together)… I went to the beach with my daughter last week. She’s only here for a short period of time before she goes back to college. Mother/daughter time is very special to me. We don’t have these opportunities very often. She is figuring out where she fits in the world and she is fighting for her independence. I remember what that feels like, I couldn’t wait to move out of my folks house… so like a complete idiot, I moved out at 18. I’m not saying it was the dumbest thing I have ever done, but I never realized how much my folks did for me. The biggest gift they ever gave me was letting me go without a fight. I don’t know how they did it. They hardly ever questioned any of my decisions… and I can’t remember a single time they turned their backs on me. They watched me move out and struggle and every single step of the way they lifted me up when I was down. There were so many moments in my life when they carried me on their shoulders for long periods of time… and they did it without me even realizing it. If i could be 10% as good to my children as my parents have been to me… that would be amazing. It’s an overwhelming emotion when you step back and look at your life and realize the people who have been your strongest supporters. Without a doubt my folks have been there for me every step of the way. The fact that they allowed me my independence as a young adult forced me to learn so many things in life. It’s time I take the blessings they gave to me in my life and share those with my children. The challenge is really letting go…

 

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I completely lost focus there! Me? Lose focus? No way! Getting back to my original point (I told you i would tie this all together). I went to the beach with Kiyomi last week and I took this picture of her with our dog Tani. To me this picture signifies how small we are in God’s beautiful universe. I realized that what I call “problems” are so small in comparison to what is going on in other parts of the world or even just down the street. I have a home, the best family and friends in the entire world, I have a good job with a manager who understands my health challenges and supports my work/life balance and I have a relationship with my son and daughter that far exceed any expectations I ever imagined. What the hell could I possibly complain about?

So! I started out telling you how exhausted I am. Trust me, I am still exhausted. It just  doesn’t matter how exhausted I am… how much physical pain I am in or how depressed I am, it’s up to me to do something about it. I choose to live my life. I’d rather hang out with friends in absolute pain then sit at home alone in pain.

I will have my bad days, but let’s hope 2018 brings an abundance of good days. That is my wish for all of you. I wish for you all to have more good days than bad and I wish for you to live your life to the fullest. Laugh! Feel the joy of friendship and experience the fresh air and sounds of whatever you love in nature. I, personally, can never get enough of the ocean.

Thank you for stopping by!

Gentle Hugz.

Tamiko

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My Best Friend Self Sabotage

I really try hard not to curse… especially when I blog. But for goodness sake the shit that has been going on in my body has been uncool. I mean I understand what I have… I get that pain is a part of my life… FOR THE REST OF MY LIFE (and I’m not yelling at you, just yelling in general). My level of frustration is pretty damn high right now… can you tell?

There’s a lot going on… many stressful events surround me and I’m trying to take it one day a a time. My best friend at the moment goes by the name of Self Sabotage. Are you familiar with her? She’s a real bitch. She follows me around all the time and she’s super bossy! I try to get away from her, but one way or another she’s always creeping up on me. Needless to say, she’s standing in between me and my well being. I tried to kick her ass out of my life a couple times, but she always catches me when I’m down and for reasons I don’t really understand she lifts me up just enough to make it look like she’s helping (for example when I ate that big ice cream bar the other day). Even as I write this I can feel her sitting right beside me… ugh.

I took a couple days off over Labor Day weekend so I could have a nice 5 day break from work. Guess what I did the entire time? Yup, you guessed it… nothing. I will honestly say I don’t think I have experienced that level of pain in years. From the Friday I took off until the Tuesday I attempted to go back to work, I could barely get from the couch to the bathroom…. my husband reminded me that every time I take one of these long weekends to relax, my body decides otherwise.

It’s exhausting. I am exhausted. I can feel myself slipping down that f’d up black hole and I’m clawing at the edges to not fall in. Normally I don’t want to write when I’m feeling this way, but today I felt like it would help. As I sit here and think about what’s going on in the world… honestly? I am one person in a world of wars, hurricanes, earthquakes, racism, ignorance, intolerance…. the list of horrible, tragic shit is endless. When I put my life into perspective I realize that what I have is absolutely fucking awesome. Way to turn it around, huh? I have to tell you… sometimes it takes stopping my life, sitting at my desk and writing to stop feeling sorry for myself and be thankful. That really just happened, I sat down not feeling very grateful and after thinking about it I realized how wrong I am.

I have to interrupt this blog and tell you… I am definitely being tested, as I am sitting here I’m hearing this drip drip drip from across the room and I’m thinking it’s the humidifier doing it’s thing… it’s definitely doing it’s thing. I got up to take a look and it basically drained all over my dresser… a full tank of water. I’m being tested.

Anyway! I could definitely fall down that black hole with all the crap going on in my life but at the end of the day I still have my family. I have my friends and we have a roof over our heads which is a lot more than a lot of people right now. I AM BLESSED (I’m still not yelling at you, but I’d love to be on top of a mountain yelling this at the top of my lungs)!!

I am in pain… I am depressed… and… I am blessed. I can take the bad as long as there is good and I thank God for all the blessings in my life.

If you are feeling down, please take a moment to stop and remind yourself of all the blessings in your life. It doesn’t mean your life isn’t hard, it just means it’s maybe a little better than you first thought. Take a step forward with me and kick that bitch Self Sabotage out of your life and start new. Every day brings you another new opportunity to try again… in fact, every decision you have to make is another new opportunity to make Self Caring your new BFF. We will stumble (trust me… I have fallen down enough times to make it from the top of Mt. Everest to the very, very bottom), but at some point you will get that mean girl out of your friend circle. I will start tonight by not eating that donut… damn, and it sounded so good too!

I am so thankful that I you have stopped by today. Please have a pain-free day.

I love to hear from you, please take a moment to leave a comment.

Gentle hugz,

Tamiko

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Fibromyalgia at Fifty!

50… wow. I can’t believe that I am 50. I can’t believe how quickly the last 50 years have gone by. Damn! I have to make my life better. I realized lately that I spend a lot of time living for another day or another moment. On Sunday, my mind is stressing about having to start work Monday morning. During the week… “Lord have mercy, when will this week be over.”. On Thursday, I’m thinking… “Just one more day…”. There’s a lot of, “I can’t wait until… XYZ“. When that moment or day arrives, my mind has already moved on. I really envy people who can just live for the moment. I want to train my brain to enjoy the now. In order to do that I have to somehow shut my brain off. It’s constantly processing… whether it’s curiosity about something going on 5 feet from me or thinking about a project at work or what will I do when I retire or what are my kids doing right now or what should I eat… I mean seriously. I could have kept typing until my fingers got numb because my mind started going 100 mph just thinking about what I think about!! Oh man, you have really entered into my world… Danger! Danger! Warning! Get out as fast as you can!! Once you enter this crazy ass place, I’m not sure if there’s a way out. At least I haven’t found a way out yet.

I keep looking at myself and thinking, when am I going to grow up? I have so much growing to do mentally… although I am pretty confident I way overachieved on the growing physically so maybe that’s why my mental side is so far behind. I used to be so independent and able. With all this medical bullshit, I have lost my way. The last few months have been really hard for me. Sidebar, how many times do I say that? I feel like I say that all the time… “The last few months have been really hard for me.” It’s as if I want to believe that it really has only been the last few months, when in fact it’s been so flippin’ long I can’t remember what feeling good feels like. If you ask me how I’m doing, I will give you the standard, “I’m good” or “I’m alright” or “I’m fine”. I’m not. I’m not any of those things, I’m feeling like shit… a lot… end of sidebar. Anyway, I have not only lost my way in general, I also got completely caught up with that sidebar. (I did warn you in the first paragraph that my brain was a scary place.)

Well… maybe I should start taking my own advice. OUCH! Damn! That really hurts to say that. I mean, I’m great at giving advice, but taking it? Crazy talk. I recently advised my daughter what she should do to sleep better. On another day I advised her on keeping a food journal so she can get a picture of what she’s putting into her body. I am always telling her what she should do when she’s stressed or angry… do I do any of those things? Welllllllll, I definitely do some of them, but for the most part… Not really. It’s hard! It’s really hard to make healthy choices. This is a typical conversation I have with myself…

Smart brain: “You should exercise today.“

Emotional Me: “Hmmmmmm, I am in a lot of pain, I’m thinking maybe later… how about some coffee?“

Smart brain: “Caffeine is not good for you and that shit you put in it to make it taste good is really not good for you.” (although the word good shows up a lot in that sentence, we all know there’s nothing good about this train of thought)

Emotional Me: “Just this once… last time, seriously, this will be the last time. I really want to be healthy” (followed by a cup of coffee and a carb)

A couple of hours later…Emotional Me, “I’m hungry.” (followed by me standing in front of the open refrigerator or cupboard)

Smart brain: “You should eat something healthy… and before you pick something to eat… take a moment to answer this question, are you hungry or are you bored?“

Emotional Me: “Screw you, I deserve to eat whatever I want.”

It’s basically all downhill from there. Sentences that start with “I deserve… ” come up a lot in my mind when it comes to food. Well, trust me, I have “DESERVED” (she says with a very sarcastic tone) a whole lot because as I said earlier, I way overachieved on the physical side of growing up! I need to come up with a better reward system in my mind. (Preferably one that doesn’t involve spending money or else I just open myself up to a different problem!)

I am a pre-diabetic 50-year-old woman with Fibromyalgia, Depression, ADD, Essential Tremor, GERD, Anxiety, IBS… shit I’m stopping there, that’s enough disclosure for one blog post. Why was I saying that? Oh yeah, I said all that because with all that going on, if today is not a good day to start getting healthy, what will it take? Do I really want to go to the doctor and be told I am diabetic? No.. no I don’t.  I definitely don’t want to hear that come out of my doctor’s mouth. I think I have heard her say enough already.

Today… right now, this very moment. This needs to be the moment I start taking better care of myself. I have a goal of 5,000 steps a day. (Don’t judge, I barely hit that once a week.) How about if I challenge myself to hit that 3 x a week? It’s not much, but it’s a good start. I actually went the entire month of April without any desserts/ sweets… then May hit and let’s just say, I didn’t just fall off the wagon, I think I fell off and have been getting dragged behind it for weeks. I’m telling you… as I write this, right this second, my emotional side has already started the fight. It’s telling me to go cut a slice of that chocolate cake in the fridge and eat it… it’s basically screaming at me to go do it. Bitch. Why do I have chocolate cake in my fridge you say? Because the other night I craved it so bad, my husband went out and surprised me with it. I will overcome that stupid Emotional Me and make better choices. I should not let my emotions influence my decisions. It never ends well when I do that.

I will choose to eat healthier. I will choose to move more during the day. I will choose to live in the moment and not worry about tomorrow. I will have faith that tomorrow will work itself out. I’m not in control of it anyway. I will think positive  thoughts. I will meditate to calm my brain. I will believe in myself. I will be healthy. I have to believe that with hard work the outcome will be less pain, less depression, less digestive issues.

My moment starts right now. I can do this. And now that I’ve said it out loud (or written it for all to see), I hope I can come back with some results in a future post.

Before I go, I want to say a huge thanks to Healthline for including me in the Best Fibromyalgia Blogs of the Year for the 6th year in a row!! It’s an amazing honor to receive this recognition. Take a moment to go check out the other blogs on the list.

Thank you so much for stopping by today. I wish you a pain-free day and feel free to join me in this quest for better health.

Gentle hugz.

Tamiko

PS. My girlfriend gave me a beautiful bouquet of flowers for my birthday. In the bouquet were these ginormous peonies. When these flowers start to open up and bloom, you really have to pay attention because it all happens in a day or two and once the flower opens up, the period of time to enjoy it is very short. This is what I mean by living in the moment. I put the bouquet right next to my desk so I could enjoy the beauty of these amazing flowers. Now you can enjoy them too!

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Start a Conversation Today!!

Can you believe it’s almost May? Time just continues to zoom by … there are moments when I want to implement some kind of slo-mo magic in my life and then there are the moments where I would love to hit the fast forward. The last few weeks have been terribly painful. When I start to feel like this vice of pain is getting released, another flippin’ flare hits me. Yesterday was particularly fun… every time I took a breath this intense pain just pulsated through the right side of my back. I woke up this morning and it was all gone. Don’t get me wrong, I was very happy that that shit was gone, but seriously… it confuses me when the intensity is so high. I actually start to think something else might be wrong… and then I am reminded when I wake up that it’s just Fibromyalgia.

Almost a month ago I had this really wonderful experience. I was requested to participate in a film focused on invisible and chronic illnesses. The audience for this film is all of us living with the illnesses, but it is also for those people who love and support us everyday. The creators of this documentary, Ron and Tasra, have done a beautiful job portraying our journey in a creative and honest way. The work they are doing is so important. It validates that we are not alone. When I viewed the short video that Ron and Tasra shared to give me an idea of what they are creating, I was at a low point in the day. I was laying down in the midst of yet another flare when I read their email… I clicked on the video expecting to watch a bit and turn it off (I have about a 30 second attention span), but I not only watched the entire five minutes (I know… it sounds crazy even when I write it… as if it was five hours, not five minutes)… anyway, I was hooked. I responded right then. Which, let’s be honest… that’s also not my usual M.O. I am horrible at reading emails and even worse at responding (This is me apologizing right now to those of you I have yet to respond to). A memory was in the making. Ron happened to be coming to my city (coincidence? I like to think of it as a blessing from above) and both my children and my husband were available on the date we agreed (triple blessings!). Unbelievable.

I had no idea what to expect. I was nervous and excited at the same time. Ron arrived, set up and we started talking… and talking… and as we talked I was amazed at what I was hearing from my family. This experience brought us closer and helped us to better understand the impact my illnesses have had on each one of us. At my very worst, my son was in his early teens. I realized how hard that was for him. I missed a lot of important events because I just couldn’t walk. I remembered when he was talking that I lived in my bedroom… in the dark. I was so out of it I could barely function as a person, much less a mom.

I know when I’m in a really bad flare or fallen into the black hole of depression I am hard to live with. My frustration and exhaustion get the better of me and there are times when I just feel like giving up. Those are the times when I just retreat into my bedroom, close the blinds and shut the world out. The times when I miss important events, when I let my family down. Meeting expectations can be hard when I’m feeling slight pain… when I’m at my worst, it’s almost impossible. I realized that during the worst months and years, I had (and continue to have) a very unrealistic expectation that my family knew how bad things were for me. At the same time, I acknowledge that my family had a valid expectation that I would be present for them no matter what. While the kids and my husband answered Ron’s questions, there were moments in the conversation that made me pretty emotional. I felt a loss… I was reminded of how much I wasn’t present (both mentally and physically) over the years… but as hard as it was to hear some of the responses… the emotion I felt the strongest? BLESSED. Blessed that we could all sit down together and be honest. I realized how forgiving they are and how, when my journey was decided, God gave me the best gift in the world… my family. I was reminded how far I have come since the days when I could barely move around and the doctors just thought I was crazy. I believe had we not all had prior commitments that afternoon, we could have talked for hours. It sparked an important conversation for us. So, for me, I am very thankful to Ron and Tasra for initiating the conversation.

 

InvisibleIllnessFilm.com

https://invisibleillnessfilm.com/

I tried to make this image a link to their site… but that didn’t really work out… so don’t try clicking on it… it will only lead to frustration.

Watch the video and if you take away nothing else, sit down with your family and have a conversation. What do they remember about you before the shit hit the fan? How has it affected them? What can you all do to improve your communication? your lives? I admit, I completely blanked on the technical, “What is Fibromyalgia” question Ron asked… like really blanked… but for me it doesn’t even matter. This documentary is not about learning what the illnesses are the individuals have.. it’s about hearing how people are living life regardless of the illnesses… it’s about validation.

Thank you for taking the time to visit my blog today. Have a blessed and pain free day!

Gentle hugz.

Tamiko