exhaustion

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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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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…

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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

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How has Fibromyalgia Affected You?

You know how one singular day can seem really long? Like you are sitting (or standing) at work and you can’t wait for the day to end? Every minute feels like an hour and every hour feels like a day… the struggle to get through the day is so hard that you wonder to yourself, “How many days like this can I possibly endure?”. My days have felt like that a lot since the beginning of the year. It’s crazy how long this stupid flare has gone on. It’s dumb, the word “flare” doesn’t even define what has been going. In the dictionary, the words used to define flare lead one to believe it’s sudden but quick… a bright light used to bring attention. Well, I’m sure all of you are well aware, the attention part is definitely correct. No way you could ignore this shit. Bright light? Not so much. Although I imagine inside my body there’s a bright light at the points where all the pain hits in my muscles and nerves. I must look like a Christmas tree inside… before Santa drops off all the wonderful gifts. Sudden but quick? Not in the least. My mom asked me the other day about being in remission. I never thought about that word, I’ve only associated that with cancer. Again, the words in the dictionary used to define that word are, “a period of time during a serious illness when the patient’s health improves“. It is fitting, but it would feel strange to use it. Although, right now I’d be ecstatic to apply that definition to myself!

Yesterday my husband and I shared our 21st wedding anniversary together… our 29th year together. A year ago, on our 20th wedding anniversary we celebrated it in the hospital. That was the day I had surgery. One I hope never to have again. But it makes me think. Time seems to go by so slow most days, while a year ago seems like only yesterday. Time is a funny thing, in one moment it can feel like it will never pass while only a moment later it feels like it’s going at warp speed. It reminds me that I need to do a much better job of living in the moment. Not worry about later today or tomorrow or ten years from now. Make the most of right now.
Our anniversary celebration didn’t go at all like we planned. We were going to go watch the sunset on the coast, enjoy some good food and maybe go for a walk along the beach. Sounds wonderful. Afternoons and evenings are the hardest for me so although I felt pretty good in the morning, by afternoon I could barely walk. So we ate in and watched TV. When I apologized to my husband later in the evening, he was not very happy with me. He constantly reminds me that what I am going through is not forever, it’s just a moment in time. We’ve had decades together and so many wonderful memories… he knows that this too shall pass and we will again be walking along the beach. I am so blessed to have this man in my life.

Which leads me to another topic. I was asked recently to contribute to a medical magazine (the kind you see while waiting at the doctor’s office) and one of the questions I was asked is how Fibromyalgia has affected me… as you can imagine, I am definitely most affected by my lack of independence. I rely on my husband for everything. He’s amazing. He takes care of everything… he cooks all the meals, keeps the house clean, makes sure the kids have everything they need and he makes sure I enjoy life. He makes me laugh every day and he supports all my trial and errors in the hopes something will ease the pain. He’s amazing. I have a lot of respect for those of you that are on your own or in a relationship where you don’t have the support you need. One of my biggest worries is what I would do if I were on my own… but right now… in this moment… I just don’t have the energy to figure that out and more important I just said two paragraphs ago I need to make the most of right now. Damn… bad habits are hard to break!

I woke up this morning feeling so blessed. I say this a lot, but I don’t think it’s possible to say it too much. Keep the folks around you that love and support you. Get rid of any negativity. It’s hard enough without having people bring you down or bring drama into your life. I believe what keeps me going is that I know, no matter what, I am loved. I have hit the lowest lows in the past few months, I have questioned my reason to live when it feels like every day is so hard… I have gone into that dark place. When I hit rock bottom I find so many reasons to end the pain… but I only need one reason to keep going. Love. That’s when I see the light shining through the darkness. Don’t let the pain and frustration take away all the moments of love and laughter you will have in your future. It’s there… it may seem out of reach at times but sometimes it’s right in front of you and all you need to do is look up.

I wish you a pain-free day and a day I hope is filled with love and laughter!

Tamiko

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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