Handicap Placard Police… You Can’t Bring Me Down!

I know many of you suffer silently with your invisible illness… you work hard to feel good… to get through EVERY. SINGLE. DAY… you do it many days without complaining and without showing your pain… and then someone just tramples on that hard work and makes you realize just how invisible your illness really is.

That is exactly what happened to me today.

I have been working very hard to lose weight, mostly because I want to feel better, and it doesn’t hurt that I feel good in my clothes. I haven’t really felt the benefits of physically feeling better (yet). I feel “lighter”. I am down 30 pounds from a year ago and it’s nice to feel the accomplishment of losing weight. BUT! Don’t get it twisted, I still feel like shit a lot of days and I still have to work hard to get through the days. The pain is still there. I still overdo it so I can enjoy life and I still suffer for overdoing it for many days after.

Today was a hard day for me. I wasn’t feeling good so I parked in a handicap space. Yes, I park in the handicap spaces when I’m not feeling good. I can tell you with all honesty that I’d rather not have a handicap placard if it means I don’t have Fibromyalgia. Anyway, as my husband and I are walking into the store this older couple drives up next to us and this is how the conversation went… and trust me when I tell you that this is the cliff notes version (for those of you that don’t remember cliff notes… this is the summary):

People, “Are you both handicapped?!?”

My husband, “My wife is.”

Old rude lady, “Well you don’t look like you are. I have to use a wheelchair and you seem to be walking fine!” … At this point I’m a bit confused and dazed by the way these people are talking to us.

My husband (very politely), “Why don’t you pull over and I will move my car so you can park there and I’ll just come pick up my wife when we are done.”

Old rude lady, “No, it’s okay

My husband asked again if they wanted to park in our space and was very polite about it. Meanwhile these people were so mean and rude … and then they drove off talking about how they would park somewhere else and then the husband yells out the window, “You walk pretty goddamn good for someone who’s handicapped!“.

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I can’t believe how perfect this image is for this post!!

Seriously? Yes, this is a true story. I was pretty stunned and embarrassed. I’m not sure why I was embarrassed… although if I’m honest with myself I know it’s because I look perfectly fine on the outside. I just walked in the grocery store… didn’t really shop and then we left. We were on the way to our niece’s birthday dinner and I was really trying not to let it get to me… but that was basically impossible… and of course a few minutes in the car and I’m in tears. Having an invisible illness forking sucks. I mean it big time forking sucks.

I already felt like absolute shit, but I’ve missed so many special occasions that I didn’t want to miss this one. I probably should have stayed home in the end… I had a hard time. The stress of what happened just made everything so much worse.

I’m glad I went, it’s nice to be around family. If I had come home I know it would have been so much worse for me. I would have started that damn spiral down, down, down. As I sit here at the end of the night, I don’t feel great, but I can tell you… I can’t be stopped.

I hope I never go back to the days when I was walking with a cane… when I was in a wheelchair… when I missed every special occasion that came around… when I would get halfway to the dinner table and be in so much pain, I would have to turn around and have my husband help me back to bed… when I literally stayed in bed for days and days… the days of being in tears… ALL. THE. TIME… fuck that. I’m not going back.

Those handicap placard police driving around in the parking lots, giving people like me shit when they don’t have a clue… well I wish them well and I hope that noone ever treats them the way they treated us tonight. I will say a prayer for them and move on.

People like that… they can’t bring me down. Yes, admittedly, I had a moment… well a pretty long moment that lasted for hours, but I’m over it now.

It’s not easy to share this kind of stuff, but I know that there are people out there who have had the same experience. Once again, unfortunately, you are not alone. I’m with you. Don’t hold on to it, don’t get angry, don’t feel sorry for yourself. Say a prayer for whoever disrespected you and move on. Let them be miserable. You continue on and find your better self.

And now? It’s time for bed. :)

Thank you for hanging out with me and I wish you all the best pain free days ever!

Stay cool.

Tamiko

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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

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