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Day 2: Of all the things I have lost, I miss my mind the most…

“Of all the things I have lost, I miss my mind the most.“

~Mark Twain

This quote says it all for me. I used to be so much smarter, more articulate… you know, way back when, when my memory was too good (those days when I used to wish I could forget things… man! I want to take those wishes back!) I was able to hold an adult conversation without stumbling over my words, without feeling like a complete idiot for my inability to figure out which word to say next.

I feel like a little bit of my brain goes dark each day never to surface again… I have a great day, but the memory of it doesn’t stick. The jokes and funny things, secrets amongst friends… yeah. That doesn’t work for me. I can’t remember shit and I don’t get jokes because by the time my brain catches up to what was said… the conversation has moved on.

Lord knows. I miss my mind. I miss feeling like a functioning adult. Holding a conversation at any level, with anyONE is stressful. I am afraid I’m going to say something stupid or something that just makes absolutely zero sense. I can fake it, you get good at that. I’m sure many of you would agree, you learn to fake a conversation… fake confidence… fake feeling good. My social anxiety, once manageable is now at an all time high. It’s all so exhausting.

What kills me is there are so many memories I wish I still had the ability to recall. Memories of my children, my husband, family, friends… “Don’t you remember when… ?” welllll, no, I don’t. I’m the best person to confess a secret to, I will not remember it. The problem is when you tell me a secret you want me to remember for future reference… hmmmmm, that is a challenge I don’t succeed at much.

So, what do I do about it? Well, I do my best to appreciate the here and now. I understand that this is my life and I do my best not to waste today worrying or wondering about yesterday. I give myself a break. I make light of it. I laugh at myself when I can’t remember how to use the washing machine, when I can’t figure out how to use a can opener. Life is too short. I appreciate that I can watch a movie more than once and still get surprised.

I have faith. I know that there is a bigger plan for me and I trust that I will follow the path that has been set forth for me. It’s not easy, but without faith, without believing… what’s left? I miss memories, the ability to articulate but each day presents a new opportunity to learn and become a better person. It’s up to me to take the challenge.

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Day 1: Health Time Capsule

I am participating in the Health Activist Writer’s Month Challenge (HAWMC) hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting! You can start anytime or decide to just use any of the prompts for your next post. Looking forward to writing with you!

Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

Wow I’ve never really thought about anything like this… For the first prompt in what is going to be my attempt to blog every day for the month of April, what to say… what to say…

First of all, in one hundred years I sincerely hope there’s a cure, or at the very least a better way to manage chronic pain and specifically Fibromyalgia and Depression. A way that doesn’t include taking pharmaceuticals… or if pharmaceuticals are still involved – please let there be ZERO side effects!

If I was to create a time capsule, I would include a printout of my blog and others that I know have touched my life. It’s the best way for me to share my experience with these crazy conditions. It is representative of both who I am and how I have felt throughout these years. I would include books on Tai-Chi, Relaxation and Meditation and my favorite quotes and bible verses. Pictures of my family, friends and major events in my life. Pictures to prove that I did live despite my pain. I lived a good life!

I hope when this capsule is opened and the contents reviewed, the first thing that is said is… “Wow! Thank God there’s a cure for this kind of pain!” I don’t want people to feel sorry for me. My hope would be that people would see the advances that have been made in mental health and chronic pain conditions… I can only pray that major advances have been made.

I’m a firm believer you learn from the past experiences of others. The best way for people to see how far they have come is to understand the history of where it all began. Fibromyalgia is still in its infancy in the medical world. There are still so many non-believers… I would be happy if I made my contribution in the learning of others. One hundred years is not as far away as it seems… I just hope it’s a healthier, happier, more peaceful world overall. I hope people have learned to appreciate life more and people’s priorities have shifted from work/ material things to balance/ time with family and friends.

Thanks for reading! Stay cool and pain-free.

Tamiko

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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.