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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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

Amazing… MyFoggyBrain and The Mighty’s eBook

I still cannot believe people want to hear my voice… or rather read my thoughts I should say… and to get asked if I want to contribute to a book, magazine or guest post on someone else’s blog? Well that is beyond my ability to comprehend. It’s amazing is what it is. I started this blog years ago when I was at my lowest point. When Fibromyalgia was not on commercials for pain meds… when it took many years to get a diagnosis – while during that time I thought I was crazy. As far and awesome as the knowledge and acceptance of Fibromyalgia has come, there’s still a long ways to go. I look forward to the day I go to a doctor with an issue and I don’t get the standard, “I’m sure this is because of your Fibromyalgia.“. How crazy is this? It took years… YEARS… to get the diagnosis after seeing a crapload of doctors. It took years for my own primary care physician to finally acknowledge/ say the word “Fibromyalgia” during a visit… and now every time I go in, it’s the first and pretty much only thing I get as a result of whatever the hell is going on with me. And like all of you out there with chronic pain, IBS, depression, anxiety… I could go on and on… you NEVER (as in NEVER EVER EVER EVER!) call a doctor much less schedule an appointment with a doctor unless you have been experiencing an issue for a long time and that little voice (or big voice if your husband/ family member is involved) tells you it’s time to see a doctor. And I’m sure you often get the same result as me… nothing but frustration. So! As I was saying, I look forward to the day the doctor looks deeper and doesn’t just see Fibromyalgia, but sees me and the potential for other issues or even just spends more time understanding what’s going on and makes me feel like I’m being heard. I don’t want my doctor to feel sorry for me, I want my doctor to work with me. I believe those of us who live this life know a lot, research how to manage living with chronic illnesses, go into the doctor’s office with almost more knowledge than the doctor. That’s how it is for me. I hold out hope that one day soon things will change.

Wow, I totally did not intend to go into that rant. Every time I think about my journey as it relates to the medical world, there’s a definite level of frustration. Don’t get me wrong, I have had some super awesome doctors and counselors through Kaiser’s pain program. But there are only a few of those in comparison to the vast majority.

Back to the reason why I started this post… you all know how easily distracted I get so thank you for bearing with me! Anyway… In the last week The Mighty’s Real People, Real Stories: Fibromyalgia E-Book was released. It was an honor to contribute one of my past blog posts to this book. I hope you take the opportunity to check out the book and read through the many stories.

Everyone has their own story to tell based on the journey they have been on. Don’t ever hesitate to start your own blog, write your own story – focus on the things that make your life worth living. We have our good and bad days, but I believe it’s important that we uplift each other out of that black hole we can so easily drop down in. That’s become my purpose with this blog… I may vent and feel like crap, but at the end of the day it’s important to find something good to say. I have to try to find something in my day that’s positive! You do the same.

Thanks for dropping by. Please feel free to shoot me an email or leave a comment. I love to hear from you!

Gentle hugz,

Tamiko

BTW… my new obsession is bullet journals. I can’t wait to share my experience and how much I am loving it! Stay tuned…

The View From My Room

I can’t believe it… it’s really been since May that I wrote my last post. Hmmmm…. Well, there goes another goal for the year that I’ll miss! Although I must say, I actually have a good reason behind all this. Since my last post it’s been non-stop crazy… whether we are getting ready for graduation or preparing for college, this weekend is the first time I really feel like I have been able to sit back and relax.

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View from her dorm room!

Where has the time gone? First we had high school graduation and all the stuff that goes along with it. Except this time, with my new found sewing skills… I decided to make laundry bags and book bags and towel wraps for Kiyomi and her friends for college. It was a lot of fun, don’t get me wrong – but also a lot of work with defined dates everything had to be done by! The best part of all this was the time spent with friends while sewing. It was a learning experience, but one filled with laughter, great conversation and, of course, good food! The end result was I learned a lot and had some nice hand made gifts for some wonderful kids.

The college preparation experience entailed finding the perfect comfortor set (which took many, many weeks), the rain boots we promised her if she decided to go to Eugene… and all sorts of required dorm decorations, clothes, etc. We atttended orientation… or IntroDucktion as they call it at the University of Oregon… a great experience, but really brought home how much closer we were getting to her leaving… and then over the summer as her friends were leaving (or preparing for leaving) for school – each day and night became “the last XXX…” get together. So we saw her less than any other time of her life. I think I started missing her  the day she graduated.

img_6043All this to get to this weekend. We drove up on Tuesday and moved her into her dorm room on Wednesday. The move-in process was more work than I thought it would be… it wasn’t bad, just took a lot out of me. Times like this always remind me of all the crap I have. The pain, the digestive issues, the mental bullshit… it all just hits me at once. I go into these events thinking… “I got this!!” and halfway through my pain starts rearing its ugly head. I told my husband my body was basically saying, “what the hell do you think YOU’RE doing??”… and then proceeded to remind me whose boss – and apparently it’s not my desire to get shit done that’s boss. Although I did fight it for many hours before finally giving in.

We had lunch on Thursday, she jumped out of the car and Ray and I drove over to the coast. We are staying in the most awesome hotel (the Fireside Motel in Yachats). We have an oceanfront room (something we have never done before) and have just stayed in the room all day watching the waves or listening to the waves while we read/ write. It’s a little slice of heaven. I had no idea how exhausted I was until we got here and sat down to watch the sunset. We had all these plans to sightsee… and then… we both decided to just do nothing. We have gone out for some yummy dinners – but stayed in our room and just had snacks during the day. I am having the time of my life!

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View from our room!

What have I learned? Okay i didn’t “learn” this… I was reminded (very loudly) to listen to my body. In times like this, how about if I don’t self sabotage and eat all bad shit… treat my body with respect. I feel like I was on a mission to spiral down in anticipation of letting Kiyomi go. Stupid.

It’s a privilege to be healthy enough to travel to this place. We drove up to our room and walked the 15 feet from the car through our room to the outside deck. The first thought that came to mind was… “This place is perfect for my mom!!”, but she isn’t feeling well enough to travel like this anymore. I need to be on a mission to feel good! I’m on my way… this place we are staying at, the sound of the ocean, surrounded by this beauty – it’s time to move to the next phase in our lives. Healthy is a good place to be and it’s my new goal!! I should go for a walk on the beach now… hmmmmm… maybe in an hour. One step at a time. :)

Thanks for stopping by!

Tamiko

Let Go and Let God… Be Blessed!

4:44am… this is the time i woke up this morning. Every time I sit down to write I feel like I start with the mindset of how crazy life is… or how much of a roller coaster I feel like I’m on with the pain and emotion. 4:44am… for the last few weeks I keep waking up between 3 and 5 in the morning. Most days I force myself to stay in bed. I read or just lay there and eventually I doze off for another hour. Today I decided I’d go downstairs and check my blog.

It’s such a blessing to me to see how many folks visit my blog and to those of you that take the time to share your thoughts, I say a ginormous (I love that word)… THANK YOU! I still can’t get over the fact that over 35,000 people have stopped by. This is definitely one of the life accomplishments I am most proud of. Quietly proud as I don’t really talk about my blog. I have been asked many times for interviews… I’m more than happy to contribute via email or writing up something for a specific purpose. The times that I am asked for interviews over the phone or video… I feel very honored, I just can’t bring myself to do it. This blog is so personal to me, it’s like my private diary… for many years I wrote anonymously. The thought of talking out loud about it completely freaks me out. For the most part I only share what I’m going through with all of you. I trust that you all know what I’m talking about, what I share is nothing surprising or new… it’s meant to be validation that we are are not alone in our pain.

IMG_0041These last few months have been … well, they’ve been painful in so many ways. We lost an amazing, AMAZING woman much too soon in life. She taught me so many things over the years. This loss has been so very painful. It’s not as if you can put a number to the pain one feels when losing family or friends. Without Jennifer and her daughter, my best friend, I would never have accepted God into my life. I would have never known what it means to be a gracious host or how to make a table look bountiful and beautiful. Jennifer gave me tips on everything from simply how to make my hair look shiny, how to cut vegetables, how to handle itchy skin (Sarna lotion does wonders) to the most complex things like how to raise children and how to read the bible and Believe. It was an honor to be by her side the last few weeks of her life. She died with dignity and she showed me yet another lesson… to the end she fought to be independent. She had a strength in her spirit that even in her last days she wanted everyone to know that God is the final answer, not doctors. Only God knows the path and timing. Let go and let God. A very strong message and one that so many of us forget. Thank you for that and so much more Jennifer. There are hundreds of lives that you touched, many of them children that you helped to raise and mold into the wonderful human beings that they are today. What a treasure.

Also, these painful times bring out the best and worst in people. Thankfully I have the most giving people in my life. When in need, I know I can count on these women to lend a helping hand. My way of healing is always to stay busy and give in some kind of way. Friends just doesn’t seem enough of a word… my family of friends have come together countless times now to put together memory boards. It is during these times I am able to quietly grieve and creatively pull together a lifetime of memories through pictures and scrapbook pages to share. Working alongside these beautiful souls makes my days so much easier. There is no way to ever thank these ladies enough for the help, the meals, the friendship. To know what I’m going through… and with very limited communication… these ladies just say “What can I do to help?” and then they show up at my door. It’s amazing. They are amazing.

There have been many sad and challenging events in the past weeks. Some I have handled well, others not so well. But I have done my best and that’s all I can hope for. I can see the world changing before me and I am really trying to move with the changes. I am not that small child who can lift my hand to my mom and dad for help. It’s my turn to help them… or at least I feel like it should be my time to help them… although let’s be honest, at my age I do still turn to them for guidance and support. And in their moment of need… like a grease fire in their kitchen. Instead of asking me for help, they are telling me to focus on grieving and helping my friend and not worry about them. I can only hope that my husband and I can be half the parents mine have been to us. If we are supposed to make our children better, my parents have definitely done an awesome job with teaching my husband and me… and our children… and those people that have taken advantage of their life experiences and wisdom. So when I lift my hand to my mom and dad, although I’m not that small child… I do still and will always look up to them.

IMG_1795There are days when I want to just curl up in the fetal position and get in bed, pull the covers over my head and close my eyes. But I have to face the challenges and accept that we are getting older, we are all getting older. Age brings the knowledge that life is precious, tomorrow is not promised so we need to try to live each day as if it is our last. Don’t have regrets, focus on what is most important. What is most important to you? For me, it is my family and friends. My goddaughter’s senior night, taking pictures of my daughter and her friends before the homecoming dance, spending those precious moments with my son just talking… spending the day with friends and family in the city. Going to quilt festivals and crafting. And yes, even taking time for myself to relax in front of the TV and catch up on my General Hospital (stuff is about to get real with Jake/Jason!).

It always comes back to this for me… count your blessings. Okay don’t count them, you don’t want to focus on numbers. BE blessed. Just be blessed. Let yourself enjoy life and focus on the good and not the bad. You will have pain of all sorts, but do your best to overcome it and spend your days feeling the best you possibly can. Laugh as much as you can, I hear it’s the best medicine. :)

Have an awesome day!

Tamiko

How Honest Are You?

… vent, vent vent… complain, complain, complain… this is how i feel. I feel like everyday I say the same damn thing. It goes something like this…

girl-150102_640“I am not feeling well”

I am exhausted

I am in a lot of pain

That food was so good!” … and an hour later… “That food made me really sick

I don’t have the energy for that

My legs aren’t working” … “My hands are killing me” … “I have a migraine” … ” …

I can go on and on and literally ON! I know a lot of you folks out there feel like every time you describe to your family or those closest to you how you are feeling … it’s like a broken record. Should we lie? If I don’t tell the truth people assume that I’m feeling perfectly fine and then expectations change. The truth of the matter is, just as quickly as I forget what pain feels like, others forget what me in pain looks like. And honestly… be super-duper honest… is there ever a moment in the day when you don’t feel any pain? For me, the answer is an adamant “NO!” (I’m really not shouting at you… just making a point). So if I go with my baseline pain level and call that “fine” and then just speak to my worse than baseline symptoms, is that better? And better for who? Me? My family?

What prompted all this? Well… I’m not sure. I think it’s because I have been in a flare for months now. I’m not sure how long because at the beginning of this calendar year I, for no rhyme or reason, stopped using my calendar. I had a calendar last year that I wrote all my health stuff in… this year I just haven’t had the energy. I’m not even sure it’s a lack of energy thing as much as it is I got tired of thinking about everything. I’ll be honest… I’m kind of a mess right now. But, as I was saying, I feel like I’ve been flaring for months. I don’t recall being in a flare for this long in years. It’s just not calming down.

So, is it a burden for my family and friends to carry if I am honest about how I am feeling or is it a burden for me to keep the truth to myself? What’s the balance and where do you draw the line? I’ll tell you what. I’m tired. I’m tired of feeling like shit. I’m tired of being depressed. I’m tired of never being able to say… “I feel GREAT!”. I’m just flippin’ tired.

And now that I have vented and complained what the hell am I going to do about it? Ummmmmmmmmmmmmmm, can this be one of those days where I just vent and complain? Do we get those days? I think if you talked to my husband he’d tell you I definitely have those days… but that’s not what I want to do with you folks out there who have chosen to follow my blog. We all have these shitty days, but to just vent and complain brings everyone down including ourselves. How do you get out of the pit of pain and depression? I believe you have to be kind to yourself. Acknowledge that you will have bad days and today is one of them. Tomorrow is a new day. It’s a new opportunity to have a less painful day. A less down day… one that could be a happy day. It sounds strange, but in our world of chronic pain – pain and happy go together. You cannot let the pain take your happiness away. If you don’t allow yourself to be happy while in pain… the alternative is not a life worth living.

IMG_0379Yesterday was a pain and happy day. I was having some issues walking, but I was determined… I couldn’t let that ruin our family day. We started the morning out playing soccer with my exercise ball in our bedroom (don’t tell the kids) – I don’t think I’ve laughed that hard in a long time (let’s just say we were almost in the market for a new tv)… followed by an awesome breakfast the kids made for Father’s Day and then we all piled in the car and spent the day together. A day which included walking… which was extremely painful. In this instance I was not about to let the pain get in the way of everyone’s happiness and just as important mine. We had a beautiful day which I managed with pain meds, laughter, joy and a lot of positive self-talk. A pain and happy day.

So back to my question… how honest should we be? Maybe I will try another approach. Maybe I’ll use the baseline approach and if I’m feeling my normal pain, I’ll say, “I’m doing good!”… I might even try to start saying, “I’m doing great!”. If I’m feeling worse than normal, I can just say “It’s not a great day”.

Our lives are not predictable. The only thing we know for sure is that there is going to be pain, we are going to be uncomfortable. We are going to have days where we want to scream and shout, stomp our feet (although that would cause more pain), and cry… but after you realize your life could be a lot worse and that you are surrounded by the best family and friends anyone could ask for… you realize how blessed you are. Today may be hard… but there’s always tomorrow.

Thanks for stopping by! I love hearing from you either by email or comments.

Stay cool and relax… Gentle hugz!

Tamiko

How do you Recover?

How do you recover? I never seem to ask myself this question. I know I should plan for pain. I know when I’m going to be in more pain than normal based on my upcoming activities. But for the most part I have an attitude of “I am going to enjoy myself and deal with the consequences after...” It may not be the smartest approach, but I tell my husband all the time… if I stop doing things because of my pain, I’ll never do anything! Pace yourself… we hear this all the time. Stay away from stress… another major tip we hear… but, honestly, pacing myself stress me out!

In the last few months I have created my own awesomely good days… I have sewed with friends, went on vacation with my mom and daughter, surprised my dad with a party for his 80th birthday and watched my daughter prepare for her prom. After each big event it takes me weeks to recover. I do my best to pace myself and stay away from stress, but as you know… life happens.

Recovering from any activity that takes energy has to be balanced by down time. Throughout all those great events, I have endured the longest flare I’ve had in years. I have no idea what is going on, but for one reason or another my body decided it didn’t want to manage the pain efficiently. It just wanted to be in pain … every… single… day. If it’s not the pain from Fibromyalgia, it’s the pain from IBS. Thankfully, my depression has been somewhat under control.

If you ask yourself, is it worth it? As I know many of us do… on a regular basis… especially when in the midst of an ongoing flare. When it’s all said and done, the answer has to be a resounding “YES!”. There are nights when the pain from my day’s activity is so great, laying in bed is painful. My legs are throbbing from the inside out and my neck and shoulders hurt so bad even my skin hurts. I have taken more pain meds in the last few months than I have in years. It’s been the only way I am able to sleep… and let’s be honest, in the middle of a flare, who really gets good sleep? I generally wake up around 2 or 3 and end up reading until I can fall asleep again… and then wake up a few hours later. This does not make for good sleep.

I work full-time and I thank God every day that I am able to work from home. But… working from home means it’s really hard to call in sick. I mean you have to be pretty bad off to call in sick. At least I do. I feel bad if I have to stop working early because I am in too much pain. There have been many days where I’ve felt like I could have done a better job or worked a little harder, but due to this ongoing flare, work has been tough. On the plus side, since I have such a hard time sleeping, there have been more than a few days where I’ve started working between 4:30 and 5. Not only am I thankful that I am able to work from home, the folks I work with are extremely supportive and understanding. I couldn’t ask for a better working situation. I can’t even begin to imagine what it would be like if I wasn’t blessed with the work situation I am in.

In preparing for my daughter’s prom night, I had to leave abruptly from her make up appointment because I all of a sudden felt really sick and could not endure standing (or sitting) any longer. My husband picked me up, and as he drove me home I felt like a loser mom for missing out on even one part of this big day. I went home and laid down for 45 minutes so I could recover. There was literally NO WAY I was going to miss seeing her all dressed up with her date and friends. I was not going to miss the opportunity to take pictures at the park. I knew when I got home I was going to collapse… and I did. But it was worth it. I also realized that missing out on a small part of the day so I could enjoy the main event was something that I needed to do. It was a blessing that my cousin was at the appointment so I could leave. Recovery…

We surprised my dad for his 80th birthday 10 days ago. All the preparation and work towards the event was so worth it when he walked in the room and I saw his expression. At the end of the night when I got home, I literally crawled up my stairs to my room, took a bunch of pain meds and went to sleep. The next day was my daughter’s 17th birthday and I had family visiting from out-of-town… we all got together for a big breakfast at my folks house. Although I could barely walk, the pain was not going to win. We ended up creating more memories of fun and laughter as we ate great food and visited with each other. That day ended with a trip over the hill to Santa Cruz with my daughter and her friend for dinner to celebrate her birthday and watch the sun set. A perfect week-end.

I am determined to enjoy my life. How do I deal with the non-stop pain? How do I recover? I think about how blessed I am. I think about how much joy is in my life. I think about the look on my dad’s face when he walked into that room full of people who have loved him for decades. I think about how much laughter there was on vacation with my mom and daughter. I think about how damn beautiful my daughter looked on her prom night. What could stop me from enjoying these moments? Nothing! I cannot imagine missing these moments. I say screw you pain!!! (I could use more harsh words… but… that would be rude)

On this May 12th, Fibromyalgia Awareness Day… I say let your joy, laughter and blessings be your recovery. Enjoy life, don’t kill yourself doing it, but definitely don’t go the other extreme and stop living. You deserve better!

Before I say good-bye, I have to say how thankful I am to be recognized for the fourth year in a row as one of the top bloggers in Healthline’s 2015 Best Fibromyalgia Blogs. I am so proud to have made the list, it means a lot… and Congratulations to the other winners!!

2015Healthline

Thanks for stopping by… I hope today was an awesome day for you!

Tamiko