fms

by

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

by

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.

by

My Pain. My Meds. My Pain. My Meds.

This vicious cycle of crazy ass pain and taking pain medication is never-ending. I often wonder what would happen if I stop taking my pain meds, but the fear of that excruciating pain is just too much to handle. Yes, I am one of the folks taking prescription meds. I am not taking narcotics on a daily basis, I was taking Darvocet and I have yet to find a replacement for that damn drug. I never took it daily, but it did help take the edge off on those days when the pain was at level 10+. Now I have nothing.

I have hated this process to get to where I am at, but at the very least, I know what to do and my doctors are willing to work with me. They don’t look at me like I am crazy and Kaiser believes in chronic pain and Fibromyalgia and has a program to work with you. That does not mean that it’s easy to figure out the meds, it’s absolutely not easy. I have a fundamental problem with putting this crap in my body. I don’t believe the long-term effects are clear and honestly, it’s scary. I’m watching TV and seeing these lawsuits going on and the meds they are advertising class action suits for? I am on today or have been on in the past! Seriously? It’s not cool! What do I do? I can’t afford the natural path, it’s just not in my current budget. I did try it, and it is a nice way to go. I believe in it, I support it – I just can’t afford it. I wish that it was part of my medical benefit, that would make a big difference.

Even though I have been taking some of these meds for over a year, I still read the papers every single time I renew the prescriptions. Topiramate has the same side effects as Fibromyalgia! This is crazy to me. I think about this a lot. I believe the meds are helping me, but sometimes I have to wonder if the meds are also introducing their own issues. Foggy brain seriously sucks! Is the Topiramate helping or hindering?

If you read my last blog, you know Kaiser ran out of one of my meds. I didn’t end up getting that scrip for 2 weeks. Well, by the time I picked it up I had pretty much become used to not taking it. I decided to go without it. That medication was initially introduced for pain and to help me sleep at night. After being off the medication for two weeks, I believe my pain and sleep is the same as it was while I was on the medication. That was a great “pro” for Kaiser running out of the med, at least I was able to determine I don’t want to take it anymore. One less pharmaceutical in my body.

One of the other meds I am taking is Cymbalta. I am a believer of this med. I have chronic depression and this has definitely worked for me. If I have to choose between being in pain or being depressed, I’ll take pain. I have had depression for much longer than I have had FMS and it is a kind of pain that is unbearable for me and those around me. To be at my lowest point in depression and my highest level of pain and to have to choose between fixing one of those? Wow. That would not be cool. Both are so unbearable.

So… back to Darvocet. I have been having a lot of flares in the last six months. Darvocet was very helpful to me when it was available. Since it has been removed from the market, and for good reason, I have not been able to find anything that works. I have tried Vicodin – this less than mildly takes the pain away, so it doesn’t really feel like it’s worth it. Tylenol with Codein – this does less than zero, feels like I am taking a placebo. The only other alternative my Dr. could offer was Methadone. Hmmmm, at this point I pretty much am not really feelin’ that drug. It just feels wrong, I don’t know. Anything else interacts with the stuff I already take. Very frustrating. Especially with the number of flares I have been having. I need your advice Fibromites and fellow chronic pain mates!!

Well, that’s all I’m thinking about today, thanks for stopping by! I could really use your comments on this one, I would love to hear how you are coping on your meds.

Stay cool!

Tamiko

Related Articles
by

Do You Dream?

Are you are dreamer? With the amount of sleep I don’t get, I end up in that dream state a lot. I doze, I nap, I am in REM state…. I just don’t sleep-sleep like normal people. What I do … is DREAM …  in HD … vivid color!! It’s super crazy. I have been dreaming like this since I was a kid. I have dreams that have been going on, continuous or the same dream over and over again. I have these places in my dreams that I have visited many times at different ages. It is to the point where there are things that I honestly don’t know if it is real or a dream. These are moments that I will think about in a blink of an eye and then forget again (who the hell are we talking about here?). I have nightmares. My mom had an angel that she would put over my bed when I was growing up to help me sleep at night. I really loved that angel. I don’t think she realizes how much that helped me. Nightmares are the enemy.

In my dreams I visit people that have passed on. I have conversations with my friends and family about what is going on in my life today. I share ideas and life experiences like they are still with me. I wake up and I forget that they have passed on and I experience the loss all over again. I am a little better than I used to be, if I can tell myself that I am dreaming, I can sometimes prepare myself or even use my time in my dream to my advantage. Really strange, right? But there are times when I just want to lose myself in that dream and just let go… it’s dangerous. I don’t want to wake up. The pain of waking up is so deep, it will take days to recover. I know I will relive that dream over and over again. The pain from that experience, visit, unforgettable dream… one so vivid that it sometimes haunts me forever.

In my dreams I can do anything, I can go anywhere, I can see anyone.

I can fix anything, I can mend any relationship, I can overcome any challenges.

I also see myself struggle and I see others struggle and I feel and it’s not easy. It’s uncomfortable and it’s awkward and it’s real life. It’s not “dream” in the sense that it’s all nice and beautiful and wonderful and perfect. It’s a dream because I have my eyes closed and I am not awake. If I could write it out as it happens, I would do it. I would love to analyze it every day as I dream it. It’s difficult to do as I have too many of these short stories going on at the same time.

Last night I had a dream that I went to see a doctor. I checked in and wait to be called. The nurse who calls me back looks at me in an disapproving way. You know the look, the one that says “you look fine, why are you here”.  This female nurse tells me to come around and meet her at the door and she’ll take me to the back, so I walk to the other side of the counter and stand there and wait for her to open the door. As I’m standing there waiting for her to open the door, I start to feel strange. I can remember I’m holding some papers in my hand along with a book and my purse that my cousin gave me is on my shoulder. The next thing I know, I start to fall – in slow motion. I am fainting. I am falling to the ground, but I have no control, I cannot stop myself. I am going to seriously just fall on my face. This is what it feels like to faint! I can hear the people in the waiting room gasp as they hear me falling. THUD! I hit the ground. My head hits the floor and I feel sick. This is so surreal. I can smell the carpet, I can feel how hard the floor is. There is an older lady sitting in a chair just directly in front of my face, but she doesn’t know what to do. I am just embarrassed. I just fell flat on my face.

The nurse comes out the door and sees me on the floor and calls for help, “Someone call a Doctor! Damn, she fainted!”. I can feel her moving me around, but I’m not sure what she is doing. I am really not well. I recall nurses around and a man with a gurney at this point. I remember feeling the light from the windows coming in. The windows have dark brown wood around them. I am laying on the floor on my stomach and I am not able to move at all, I can feel the scratchiness of the carpet and I can smell the office. I felt really light headed and sick to my stomach. I could hear the nurse talking about getting me cleaned up… and then? I woke up.

I woke up. I was awake for about ten minutes and then it was off to another dream about visiting a girl I was best friends with when I was about eight-years old. I often dream about her and for some reason we are always going to the beach.

I wouldn’t mind dreaming so much if it would allow me to feel RESTED in the morning! My mom and my Godmother are/were dreamers. This is the gift they have both passed on to me.

Crazy, right?

Well, I can’t help what I dream. Do you dream? How do you journal your dreams? Does it help you get through your pain?

Apparently the pharmacies ran out of my pain meds in the bay area so I can’t get them until tomorrow. A week without them, how much fun am I having? Trying to be a good sport, that’s all I’m saying!!

I think my next blog will be about meds. I could use some advice on meds. Hopefully you’ll comment.

Thanks for stopping by. Look forward to your comments.

Take care and stay cool!

Tamiko

PS. The picture was taken by my daughter… pretty awesome, right?

by

What Would You Do? Stand Up For Your Pain!

The cameras are rolling…. All eyes on you…. You have probably seen the TV show, “What Would You Do?” I was going to blog about a situation I was in a couple of weeks ago. A truly, stupid situation that I needed some time to get through, mellow out and say to myself, GET THE HELL OVER IT! I wanted to vent and get that shit out of my system, but it would not have helped and it would not have helped any of you! I have to keep reminding myself every hour, every minute of the day to stay positive these days. It’s a challenge, but sometimes that’s what one has to do. Right now, that’s what it is. Prayer and giving my cares and worries over to God is what I’m doing.

My life has been seriously out of balance. Work has been crazy busy – way too many hours. Family and friends close to me are in need of God’s healing hands. The weather has been crazy, mostly rainy and cold. I’ve been in a constant flare for what seems like forever – it’s only been a few weeks. For the first time in a long time I have increased my dose on one of my meds. It sucks, I don’t know if any of you feel this way, but increasing meds makes me feel like a failure, like I’m not managing my pain like I’m supposed to. I agree to a certain extent that I shouldn’t feel that way, but at the same time, I also feel I should be in control of my body. FMS is a crazy place to live. Depression has stolen a lot of my mind the past few weeks and I really want it back. I have fought and fought and fought, I FINALLY feel like I may be starting to come back, it’s so damn hard. It’s like climbing up hill through quicksand (because I have done that before, right?). Trust me, my family really, REALLY prefer the not deeply depressed mother/ wife over the scary/ ugly mean lady that’s been living in the house lately. She scares me too.

Speaking of my family, well specifically my husband… I am not CO-dependent, I am SOUL-dependent (and yes I meant to spell it that way) on (on? of? to?) my husband. I have been blessed with a husband who takes wonderful care of me. He does everything for my children and me. He literally does all the cooking, cleaning, driving, care-taking… this man does my hair, when my daughter isn’t doing it! He also deals with all that comes with chronic pain and depression, oh yeah and let’s not forget – throw in a little bit of ADD. What an effed-up combination! After almost 25 years together he has to be wondering what the hell he signed up for!! There is no return policy here. He had 30 days, but those days have passed and he’s now stuck with me. Thank God!

So! I started out talking about a TV show that puts folks in really awkward situations. A show that ultimately pushes those same to people make uncomfortable decisions. Now I ask you, when you are in a situation where you need to stand up for your pain, do you? Do you stand up for your pain or do you end up suffering? I made a decision to stand up for my pain and I also ended up suffering because I stood up. I am happy I made that decision because I was able to really see some true colors come out.

At the end of the day, most of us can barely stand up for long periods of a time, so why suffer any more than you have to, right? I mean, c’mon! Please do yourself righteous and STAND UP FOR YOUR PAIN!

Thanks for reading! Please tell me what you think, leave your comments and, as always, stay cool!

Tamiko

Related Articles
by

This Too Shall Pass… I Am Blessed.

Wow… Where have I been? It’s been over two months since I have written something… and to be totally honest, it’s been over almost that long since I have even visited my blog page. Six months ago, if someone would have said I would let that let that much time pass without viewing my page, I would have just ignored them because I would have thought to myself “NO Flippin WAY!”. Well, it’s true. Now that I’m here, that old familiar feeling is back. It’s the middle of the night, I’m sitting in the dark, on the couch with just the dim light from my laptop…. except this time… same couch – different house.

Where do I start? My life, my life, my life… Lord, I know You do not shoulder more than one can bear… I. Just. Am. So. Very. Tired. I really do try not to complain, I know there are people so downtrodden and their lives really suck, I know I have no right to complain…

Here’s the deal… let me bottom line it for you… I feel like I am starring in a country song where you play it backwards to figure out everything that has been lost (I should win an award for this one!)… I am just not mending… I don’t even know how to mourn anymore. I know hospital emergency rooms and intensive care units up and down the west coast and unfortunately so do my children. What started out as a good learning situation for my children when they were young, has turned out to be a continuous cycle of “Whose Funeral Are We Going to This Month?” … Scarred for life.

Where the hell was I going with this? Oh yeah… I was bottom lining it… let me get back to it…

So! Important in a Chronic Pain Patient’s life… Truth. Honesty. Well in anyone’s life, but more so in a chronic pain person’s life because you spend your entire life explaining your pain to people who do not believe you!

Shortly after the passing of my very close friend Steve’s passing, I lost my Godfather which seemed “suddenly” to me (way too soon as I just really wanted more time!)… Very close after that… we had a traumatic experience with a dog that we were really hoping to adopt (all of my 4-legged blogger friends would totally relate to my experience but Lumpy is in a happy home now!) Well, my son entered college and turned 18 and then my husband and I found out we needed to move out of our house we had lived in for over 10 years. We had less than 2 weeks to vacate. So! I found us a house to rent and we packed up our memories and our furniture and moved to our new “home”. That was the 1st week of November… and did I tell you I was on disability and went back to work the second week of September?

For those of you that were around my blog last year… I was blessed to get out and help pick the tree this year and my husband and I trimmed it this year!

I have this horrible feeling there is a big ass dam inside my body somewhere secret stored up and it’s just going to open up one day… God help the folks that are around on that day. Poor souls… I have a huge smile on my face right now… because Lord knows, all you can do is smile when you think about the poor souls who will have to deal with my ass when I unload on them!

So, now that you are caught up with where I have been and what I have been up to since the last time I blogged….

After all I have been through…

my family still makes me laugh at least once or five or ten times a day.

My parents are still with me and I thank God every single day for this.

I am blessed.

I still have my brothers, sisters and their families and my friends and their families around me.

I am blessed.

I still have my five senses.

I am blessed.

(Ummm I did not say I HAVE sense, don’t get crazy here).

My husband still wakes up every morning and goes to sleep to me.

I am truly truly blessed.

I have fibromyalgia, ADHD and chronic depression and yes…

I am blessed.

For me, it is important to remind myself to remember what I have and to do my best to stay positive. Please be positive with me. There’s enough negativity out there…

Thanks for reading! Stay cool…. and God bless all of you and Happy Holidays!