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

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Where Do You Go for Inspiration?

Warning! You may be tired of the word “inspire” by the time you get to the end of this post…

There is a lot of bad, uncomfortable, messed up shit going on out there in the world. Current events sometimes make it hard to see the good in people and looking into the future can be pretty scary.

Finding inspiration is not easy… but for me these days I don’t have to look far.

My son moved into his own place and let me tell you… his spot in no way compares to the 450 sq foot studio that was my first apartment (and I’m not counting my actual first place away from home). His first weekend out, we all went over to Ikea and I watched him pick out and buy furniture for the first time… and then? I watched as he and my husband put it together. For those of you that have gone through this, you know watching a father and son work together like this is a memory I won’t soon forget. For all the years that we battled while he was growing up… to get to the point where we are now…WOW! I can remember in those early years wondering what our relationship would be like once he became an adult… He is the most intuitive, forgiving, selfless person I have ever met. The decisions and changes he has made since he graduated from college… inspiring.

My daughter has had one heck of a freshman year. Through the challenges and experiences she has had over the last 5 months, she inspires me with her resilience. It can’t be easy being so far away from home, and although she has made a lot of great friends, it’s not the same as being at home with her lifelong besties. Yet she does what she has to, to be successful. And she has been rewarded for her hard work with some amazing opportunities.

I know I say it a lot, but even if I said it every day… shouted from the mountain tops… it would never be enough…  I AM BLESSED TO HAVE THIS AWESOME FAMILY AND FRIENDS!!!. They inspire me all the time. My mom is dealing with health issues that are much more taxing than what I go through every day, yet she makes it work… and her life story alone inspires me. I know we are supposed to raise our children to be better than we are… but it will take me a lifetime to be better than her. I guess that’s the point…

My dad has decided to share his story in the Japanese internment camps by going and speaking at churches, schools and local events. He’s the last of a generation that is living to tell this story. The people who have come to his presentations will walk away learning about something that we never want to see again.

I have watched my parents make a difference in so many people’s lives over the years, I can remember moments growing up when I was jealous of how generous they were of their time with other people. Yet they taught me to be just like them… and it’s one of the things I am most proud of. So inspiring!

My friends who have overcome the deepest, most incredibly sad losses in their lives. They amaze me with how they managed to carry on. It wasn’t easy, but their ability to work through the pain to become stronger individuals is so inspiring to me.

My husband who every day takes care of me. He inspires me to keep going. He teaches me how important it is to live life and not just let it pass by. He pushes me to be creative and works damn hard so I don’t go down that black hole of depression… You know as well as I do that sometimes nothing can stop the spiraling, but the fact that he tries means so much to me.

I could go on and on. Just sitting here writing this makes me see, once again, how blessed I am. What inspires you? I will bet that if you just sit right where you are and take a moment to think about the people around you today or those that have crossed paths in your life, you will feel just as inspired as I do.

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Yachats, OR… if you look close at this photo, with a little bit of positivity, you can see a heart in the ground!

I had someone tell me the other day how inspired they were by my ability to work through my pain. She wasn’t feeling well herself and she found herself thinking about what I must go through and it seemed to give her the strength to keep working. She has no idea what her words meant to me. For those of you with chronic pain, you know it’s rare for people to recognize how difficult our lives can be. Just the recognition and understanding for how challenging it is every day… that was inspiring to me!

I have been meaning to blog for the past few weeks. It’s important to stay positive and keep moving forward. With every reason to be negative and down these days, I need to remember the good. I hope this lifted your spirits a bit.

Be inspired! Best wishes for a pain-free day.

Gentle hugz.

Tamiko

Day 7: TUI… Talking Under the Influence

Do you TUI? I was thinking in the car today about the effect pain has on my communication. I realized I TUI, “Talk Under the Influence” and that’s not really a good thing. I’m talking about under the influence of PAIN. Sometimes it’s mental pain, but most of the time it’s physical. I get that there are not a lot of moments when I am not in some kind of pain. I try to manage my way through and be the best person I can, but being my “best” does not always result in … well… even a “decent” conversation by any standard.

So what happens? Most the time I fake my way through conversations, I have talked about that before. That works in most situations. Where it doesn’t work is in my relationship with my family. I generally muddle through and after think to myself, “Why did I say that?” or better still, “What did I just say?”. These moments are not fun for anyone. Reacting in a negative way to a simple question or blowing up over nothing… a better word to use would be – OVER reacting. In this situation everyone is frustrated. My kids look at me like I’m an alien from another planet, while I’m wondering (in the moment) “What the HELL is going on??”. I know I’m under the influence when the conversation goes:

Me: Please go XYZ

Child: ok

Me (5 minutes, okay maybe 2 minutes later): Why haven’t you XYZ?

Child: Chillax mom

Me: WHAT? What did you say to me? Why are you talking to me like that? Why haven’t you done what I told you to? When are you going to do it? Screw it. You’re grounded!

Child: Why do you always get so mad at me? I didn’t even do anything!

Me: … well words can’t really explain how I feel at that moment, mostly I think my heads going to pop off my neck at that point… until about 10 minutes later when I’m sitting there, alone. Wondering… wondering what the hell just happened.

Talking Under the Influence can really hit at anytime. I don’t usually know I’m doing it. The most telling factor is when I’m mid-sentence or mid-thought and I forget what I’m saying or even what the conversation is about. I can’t figure out the next word. Foggy brain in the purest form.

I get that relationships are challenging under normal circumstances. Add in a chronic illness, both pain and depression, and it’s not really a recipe for success. It takes patience and hard work. Work requires energy, which most of the time is non-existent (I’m talking about never having energy… work? That’s always there!). A pretty dismal picture when you think about it. I’m sure I’m not the only one who wants to give up at times. You have to really play the entire movie out at this point… so…. you throw in the towel, what do you have left? In my case, I’d lose my support system… but most importantly I’d lose the love of my life. Is it possible to start over or maybe even… refresh a relationship? To give up, to me, means that I have let this shit win. I won’t allow that. I realize most relationships end over issues with communication. I know this is always going to be a challenge, given our circumstances… the bottom line is I have a choice. I have a choice whether or not to give up and walk away (albeit slowly walking with a cane) or to fight for what is important and totally and completely worth saving. Don’t give in to those bad moments, step away and start over and try again. I have to keep the faith and fight (crazy expression… fight, that’s what got me into this situation to begin with, isn’t it? :).

It’s challenging to live life within the rules, dreams and goals I have for myself, when this outside shit keeps wanting to take over. I can have a great day, get out and about and have a fun joy-filled day… almost always, the following few days are filled with pain reminding me what I have… as if I’d forget. It’s most difficult to keep my head up during those days. I get angry and frustrated and it certainly doesn’t motivate me to keep going. I can spiral down that slide to the bottom of the well, far easier than I can climb myself out of it. It’s non-nonsensical. It’s important to keep perspective. What do I have in my life? I have family and friends who love me, I have the best kids in the world (I really do) and a wonderful husband. Things are tough and will be tough, once again it’s how you get through this shit that makes the difference.

I may TUI, but if the people around me realize what I’m working with, I just keep praying they’ll continue to love and support me. Keep in mind, if you can look back and realize the moments when you TUI, it may help you understand where things may have gone wrong in a conversation. Admitting that out loud to the people who you have had those conversations with… well, that’s another story! :)

Best of luck. Thanks for reading!

Gentle hugz.

Tamiko