fms

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Day 4: I write about my health because…

I am participating in the Health Activist Writer’s Month Challenge. Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!

Writing about my health has helped me in so many ways. When I first started this blog, I was at a very low point. I had been in pain for a very long time and just recently received confirmation that I had Fibromyalgia. I had been living with ADD and depression for a long time and the news was pretty devastating for me. Writing was very cathartic. I felt so empowered when I hit the “publish” button. Whenever I received (and I feel this way today) comments I was over the moon! There were people out there that could actually relate to what I was saying… and all of a sudden I wasn’t so alone. I have gone through some really f’ed up times. When you get down to it, those of us who have been diagnosed with any type of illness that does not have a cure or one that flares up unexpectedly (or if you have depression drops you to an all time low unexpectedly)… you have moments where you feel there is no hope.

I have sat down and written at those low moments. It gives me perspective. I know if I post a blog, there are specific folks who are always there to hold me up with their comments. When I write when I have made it through a rough patch and talk about my experience and how I got through it – I feel awesome knowing that it has helped someone. I have uplifted someone else. There really is no better feeling.

I write for myself and I write for others. Any one of you who know someone who is living with pain (physical or emotional) or if it is yourself… you know how hard it is to make it through each day. I have found with writing I may start a post with a really negative vibe. As I read and re-read it, I realize that is not the message I want to convey. I don’t want to spread negativity. The process of writing makes me realize that things are not as bad as I thought fifteen minutes ago. It’s a type of kick in the butt that I need to get out of a funk. Self-realization through writing. Wow. Crazy, but it works for me.

Thanks so much for stopping by, please leave me a comment and let me know how you are doing today.

Stay cool and hope you all are having a pain-free day!

Tamiko

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Day 3: Superpower Day… Loving Yourself

I am participating in the Health Activist Writer’s Month Challenge. Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!

If I had a superpower what would it be?

The power to heal. The power to heal would be so amazing. Just thinking about it makes my head spin. That was my initial thought when I started writing. I have written and re-written this a few times. It was sorta like… “This is a no brainer, the power to heal! What more is there to say?” I kept thinking and thinking and at the end of each little writing session, I was a little frustrated and kept wanting to just toss this posting in the garbage. I’m not sure why this question was so difficult for me.

I am sitting here watching Oprah’s Master Class and Reba McIntyre was on… and something about her vibe made me realize… I know what my superpower would be! Yes, the power to heal would be awesome and there are sooooooooo many people I would use that power on. When I was thinking about this super power ability and the power of healing was on my mind… I started making lists of all the people I want to heal. But for some reason, it didn’t give me the answer I was looking for.

As I am sitting here watching the Oprah show, I realize I want the power to give people value and self-love. I would love to be able to give people the ability to wake up in the morning and go to sleep at night knowing they matter. No matter what challenges are faced in life, at the end of the day – they always see the glass half full. Anxiety, depression, judgement and insecurity don’t live here. They may not love their job or understand why they have been dealt the cards in life they have, but that doesn’t poison their view of life. Self-love is not selfishness or self-absorbed. Self-love is loving yourself for who you are, understanding there’s room for improvement and building your character in a more awesome way along the journey. I also believe this drives acceptance and understanding of everyone around you. This, to me, would be amazing.

So! There you have it. Day 3 of this month of blogging and I think I’m doing alright so far. :) Thanks for reading! Please leave your thoughts, I love to read them!

Stay cool and here’s hoping for a pain-free day!

Tamiko

P.S. The prompt for today reminded me of a prior post I wrote: Fibromyalgia and Doing “IT ALL”… What Do You Think? I still want that invisible plane!

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GUEST BLOG: Dear Wife and Fibromites… a letter from my husband

Hi everyone… my husband asked me if he could guest blog tonight. It came as quite a surprise as he’s been in the bed for the last few days. I would have thought the last thing he would want to do is be a guest on my blog. I share this with all of you and hope you have as wonderful a husband as I do! Please share this with your family and post your comments, we’d love to hear from you. – Tamiko

Dear Wife and Fibromites,

Thank you for letting me guest blog! So here I am, sitting in this empty bedroom, on my third day of pain. I have a pinched nerve that’s radiating down my neck to my back down my arm. I went to urgent care Wednesday morning in the most excruciating pain I have ever been in, (in my life). Once I got home, I barely made it up the stairs, then to top it off, I sat on the side of the bed in the most debilitating pain while I waited 2-2.5 hours for the Naproxen and Hydrocodone to kick in. Longest 2.5 hours ever! Now understand, I have a high tolerance for pain (so I thought) you see I’ve broken bones, torn cartilage, I even once played soccer for 2 weeks with an unknown broken foot!

So with that said, I thought I had a high tolerance. This pain was unfamiliar to my body, but very familiar to my brain. Hmm, where have I seen this familiarity? That’s right my wife! There have been many times when my wife could not make it up the stairs, could not move a muscle in her body without a grimace, and many times NOTHING would help. Holy shit, I am getting a “taste” of what she goes through as well as anyone else with that shitty ailment Fibromyalgia. Upset stomach because of the meds I HAVE to take in order for the pain to subside, have not eaten in 3 days, super sensitive to smell, constipation and nausea (TMI), but a big part of how I’m feeling. I have been waking up at night every 2 hours, awake for 1 hour, then sleep again for 2 hours. Just sickening! And the kicker is, I see zero light at the end of the tunnel. I am a walking zombie in pain right about now.

So back to my wonderful wife… all I can say is if you have a wife, spouse, partner, friend or family member with any type of chronic pain, I just realized you might never ever understand how or what they feel. And yes, this could be a boneheaded statement, because if your loved one tells you how they feel, you theoretically should understand. But you won’t, take it from me it’s been many years for me being on the non-pain side. But this little touch of pain I am experiencing right about now is letting me know what it really feels like (only if it’s just a few days) I actually feel like the idiot, selfish, self-centered husband, who supports my his wife, but was not really “getting it”. I have been in pain for 3 straight days (laughable to her 10 years) But I do understand just that much more. I always tell her how “I wish I could just take some of her pain away and have it go into me” I am re-thinking that right about now. This pain shit is no joke! My sensitivity level has just risen, my advocacy level has just risen, and my awareness level has just risen. I will listen more and I will help more, I will cook better foods for her, I will read more and I will educate myself more.

In summary, first off I can’t blog anywhere near how my wife can blog, but I thought I would just guest blog and share my great and terrible experience. Basically you think you know, but you don’t know. It is humbling and revealing all at the same time. If you are like me and have a wife in this life battle, hopefully you can just take a little from this blog even if it’s just to open your eyes that much more. So what needs to happen at this point is us non-fibromites need to stick together as well. We are the support system!

Thanks for listening.

Ray Arbuckle (husband and advocate of Tamiko Arbuckle)

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Fibromyalgia and the “Why Me??” Syndrome…

So I’m sure many of you have had those hours, days or even weeks where you have the “Why Me?” syndrome. You know what I’m talking about. You are in a flare, you are depressed, you are having major foggy brain… you are just doing what you can to function and get through the day. People around do not really get what this feels like, we look normal – yet we are suffering (God I hate that word, “suffering” – don’t feel sorry for me, I just can’t think of another word). You start to question what the hell did I do to deserve this f’d up thing called Fibromyalgia? For starters… you probably worked your body and mind for years to the point where everything finally just crashed and burned. I have to believe that’s what happened to me.  No, I don’t deserve it. Living with it is not fun… it’s never fun. It’s a struggle to keep my emotions in control. I challenge myself every day with staying positive, smiling and not falling down that deep dark hole of depression. Most days I win, some days I lose.

Working full-time is honestly about all I can do these days. It sucks. Every week I start working on Monday, I get to Thursday and I’m struggling by the afternoon… on Friday I’m struggling all day. Saturday I try to get up and out of the house and do something fun, sometimes it works out, sometimes it doesn’t… Sunday ends up being a day of forced rest. It’s a cycle that I have come to know very well. I’m pretty sure I’ve written this in my blog once or twice (maybe even three times) before. I appreciate that I have a job that allows me to work from home. I don’t know what I’d do if I had to commute everyday. I am thankful for the job that I have, it’s not the job as much as it is working in general. I get resentful that it takes all my good energy. What’s left at the end of the day is like the warning message you get when your laptop/phone is about to die “Warning! 10% remaining…”. Lately I’ve had to just “shut it down” and go to bed and try again the next day. I am a professional TV viewer. Well, maybe not professional, if you ask me what I just watched I can probably tell you the name of the show, but not what happened IN the show. I’m too anxious to read, no energy to go out and a lot of the time I sit and think “what should I be doing right now?”, yet as many times as I ask myself this question, I hardly ever get an answer. It’s crazy. I should know what I want to do and how I want to spend my time, yet each day it’s the same thing.

How am I doing this week… The dreaded question… or better yet, “What’s wrong with you?”, “What’s going on with you?”, “Is something wrong?”, you get the drift. Hmmmmm, so many ways to answer that question. Yet, I can’t come up with any new material. I’ve used up all the standard answers… and yes, I’m in pain all the time… and yes, most days I am depressed and I totally get that I’m not always that responsive. I really am doing my best. My best isn’t always good enough, I get that. Thus, the “Why Me?” syndrome. I really don’t want to live like this, it’s not a choice. I’m well aware of my mental and physical state… all the time.

What does it mean to live with pain? Well, the obvious answer, to those of us living this dream life, is I need help (I apologize for the sarcasm, but this damn “Why Me?” syndrome really brings out the worst in me). I need a lot of help. I need help washing my hair, doing the laundry, cleaning the house, cooking the food, shopping, walking the dog, worst of all – driving… the list is endless. It’d be easier to answer what I don’t need help with. I need help thinking, processing information, remembering. When I’m feeling like this, I can’t remember my name sometimes. Don’t look at me like I’m crazy because I can’t remember something… I already feel crazy. It means, what takes a healthy person 30 seconds to do will sometimes take me ten times that… hell 50 times that on a really bad day.

This past week-end I decided I wanted to do some things around the house. I thought I’d surprise my husband, who was gone for the day, and do some laundry, wash the sheets and the duvet thingy. Well, I got up and did some cleaning, took all the sheets off the bed and the duvet thingy off the comforter. Did I mention I have the easiest bed to make? I did two loads of laundry and I started to make the bed when WHAM! My body was like “OHHHHH, HELL NO!! You are not going to do that!!” Awesome. The fitted sheet is on 1/2 the bed. I’m laying on top of the bed in excruciating pain. So! Now it just looks like I made a mess and I’m too lazy to make the bed (and the real topper is you can’t even tell the sheets were washed). The best intentions… I did manage to finish making the bed, but not before my husband came home. Surprise! What a fail. I was exhausted, in pain and frustrated that I couldn’t finish what I started (I did mention I have the easiest bed to make, right?). Ever had one of those days?

Annnnyyyyyhoooooo, as you can see, I’m having one of those weeks. I don’t want people to feel sorry for me. I just want to express what I’m going through. I want to know my normal is normal to others with Fibromyalgia and Depression. I want people who are in relationships with people like us to understand… you know, really get that we appreciate the help but most of all we need you to support us by understanding. Plain and simple. Understand life with FMS/Depression is what it is. We have to accept it, we want you to as well. There are no miracle cures. We may feel good today and not be able to get out of bed tomorrow. Don’t act surprised or wonder why… we have no answers. Trust me, we want answers. We want a cure. We want our independence and freedom back.

Please let me know how you are doing. Share your experiences with me. Most of all, relax.

Thanks for reading.

Stay cool!

Tamiko

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Track Your Progress: Fibro Journal Template

I have been meaning to post up another one of my fibro journal templates. I hope that you are tracking your progress, we all have bad days, but it’s the good days we want to remember. If we can’t remember (Lord knows remembering is not my best skill!), it’s always useful to be able to review where we’ve been, what didn’t work and most importantly… what did work! I know most days we are all just trying to make it through, I believe journaling helps us stop and take a moment for some “me” time. Time that helps us review the day and realize “hey! my day was pretty good!”.

Try it out and please let me know what you think.

Have a most marvelous day (as one of my closest friends always says to me)! Relax and take some time to journal.

Keep on reading.

Tamiko

This is a preview of this template, you can download either or my templates in my Awesome Resources page.

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GUEST Blogger Julia Wisnieski: Life With Fibromyalgia

Hi everyone and happy Wednesday! I was contacted by Julia a couple of weeks ago about guest blogging. I think it’s cool to share other perspectives so here she is sharing her experiences and life with FMS. Please give her a warm welcome and I hope you enjoy her posting. Please send in comments and as always… stay cool! Relax and enjoy a pain-free day.

Hugz,

Tamiko

My name is Julia Wisniewski. I live with Fibromyalgia and I blog for Bready, the gluten-free bread machine so I can share my experience with managing my pain with a less gluten-y diet.

Although I have been living with the pain of fibromyalgia for as much of my life as I can remember, I have never noticed a link between the pain and my eating habits. When I was younger, my parents thought that the fibro pain was growing pains. They told me to eat bananas because the potassium is known to aid muscle function. Unfortunately, I never noticed the bananas relieving my pain.

After the diagnosis of FM about a year ago, I emailed a friend of a friend who I knew lived with fibromyalgia. I felt really awkward because she was the older sister of one of my high school friends, but she was the only person close to my age who I knew could share her experience with me. She gave me a lot of spiritual advice as well as recommended cutting down on my gluten and dairy intake. I thought that decreasing the dairy in my diet would be impossible, what with my love affairs with chocolate and cheese and butter.

I have never really been one to sit around and mull over the possibilities, so I decided that I was going to start a less gluten-y diet. I made a list of foods that I was to avoid and posted them on the fridge in my house. My roommates made fun of me for a little bit, but when they realized how serious I was about this diet, they even helped me cut out some foods that are bad for me.

I wanted to manage my pain better. I began eating more rice instead of pasta and used gluten-free flour in my baking endeavors. I felt okay, but I wasn’t convinced that it was due to my new diet. I eventually abandoned my gluten-free efforts because I simply got busier.

I was fine until recently I have been noticing stomach pain. I would feel a brick in my stomach after eating any bread or products I knew were rich in gluten. So I’ve gone back to reducing gluten in my diet. I am hoping that it will help with my stomach issues.

It is so funny to me how out of touch I can be with my body sometimes. I even went back to eating gluten for a while and ignored my body long enough to think that I was okay. It is still a day-to-day struggle. I don’t exactly have time to be worrying about my body, but I know how important my health is.

Besides just trying to replace my pasta carbs with rice and potatoes, I have found that I can use a gluten-free bread maker and make myself breads instead of buying the bland gluten-free breads from the supermarket. It helps a lot to know that even though I have to cut down on some of my favorite foods, I at least don’t have to give up on my bread.