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

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.

Fibromyalgia and Creatively Finding Your True YOU…

Topsy Turvy (album)

Image via Wikipedia

Post #500 My Foggy Brain… take 5… annnnnnndddd ACTION!

Yeah right! It’s not really my 500th post, but it is about the 5th time I have tried to write a post for my blog. I don’t know what’s wrong with me, every time I start/stop, start again or even finish… something doesn’t feel right. I’m just not feelin’ it. The vibe is not all good. You get what I’m sayin’… it has to be right, to actually push the “Publish” button! Once the content is out there, I need to feel good about what I’m sharing. I am always honest and give my best when I write and I don’t want to start half assin’ things now…

My world has been topsy-turvy, I always wanted to say that… topsy-turvy… Seriously, my life as a medically disabled on-leave full-time person is very different. It took three weeks just to realize I actually wasn’t working. One week to transition my work away, the second week to recover from the prior week of transitioning and the third week was the last week of the summer before school started, in addition, we had some getting ready to do for a family wedding. Let me just say this past week was the fourth week and I experienced a full-on flare for a few days and then recovery mode. Life definitely does not stop for anything.

I will say this… and this is not easy to say. I have chronic depression and I have had it for a very long time. Shortly after going on this medical leave I fell into a major depression. I have been doing a lot of creative journaling and prayer and listening to my Joyce Meyer podcasts everyday. I can feel myself coming out of it, it’s been almost a month. With the journaling to get clarity about some things about myself and my faith exercises along with my physical exercises and the support of my family it has helped to bring me to a better place.

The reason I shared that with you is to show you that it is possible to go from the crappiest place to a better place … but it definitely takes work. As I sit here and type I realize I actually did do some work to get here. As I smile I CAN say, “I didn’t just sit on my ass for the last 30 days.”. Not that I really did believe I sat on my ass for the last 30 days, but it is so far removed from working 12 hours a day that I didn’t actually realize what I had accomplished until right now.

In “finding” myself (I just laughed when I typed that because a girlfriend and I just discussed this phrase last month and “finding myself” in our discussion meant having an affair to a lot of other people…. so if that’s your definition… let me interject… NOT my definition!!)… okay pay attention, back to what I was saying. In my creative journaling to get to know myself better and find out what I really want out of life I bought a blank journal book and a whole lot of color pencils and asked myself some questions… in case any of you are going through this, I thought I’d share some of them with you, as well as a cool website I am using:

  • I just started with blank pages and wrote out “I Am…” on one page filling in the page with colorful descriptive words that I kept to less than 15 and all positive, on two pages I drew out a big heart and wrote out “I Love…” at the top and listed everything inside the heart… you get where I’m going with this – you can make your own lists to get to clearly define your own YOU.
  • creativity 101: discover, explore+empower your creative genius. This e-course is free and it’s pretty cool so far. Check it out, for all you creative types, there are weekly courses, meditations and you work at your own pace. for a free course, it’s pretty well done. http://www.abccreativity.com/creativity-e-course/
  • My big winner this week was finally, after a year of procrastinating, taking the integral tai-chi class! Why did I wait?? I loved it! It was two hours and it was relaxing, challenging, spiritually uplifting, mentally uplifting, physically I felt better when I left and I’m looking forward to the next class… oh and did I mention it was FREE?? These classes are offered through the local libraries so they are always free. With all the hype about Tai-Chi and Fibromyalgia, now is the time to try it out… you won’t regret it!

To finish my post, I went for a walk tonight with my two beautiful children and my crazy dog. It’s the first time I have done this in a very very long time. In fact, I cannot remember the last time I have gone for a walk like this. I really have to cherish these moments, in a few weeks my son goes off to college and soon I fear I will be “invisible” to my daughter. I can feel it coming… It was really nice to get out of the house and be able to walk for 30 minutes. My crazy, funny dog loved every minute and she kept us all entertained (as usual). I really need to give that Caesar Milan a call… I love my dog, but she has that psycho thing goin’ on whenever she sees another dog on a leash…. off leash she is pretty awesome… well… she has her moments… as long as everyone is off leash she is really awesome… honest, she is. look at her pictures, you know she is! she is totally submissive when she goes psycho… she just has this crazy bark that sounds like she is kujo-dog… all the while wagging her tail and as soon as she gets close to the dog, she rolls over to her back… but how would the other owner KNOW that?? They have to be a true dog lover to know that…. and not everyone is, sooooo anyway… how did I get on this?? oh yeah, I am easily distracted…. anyway… I love my dog and you would too if you met her! :)

Hey, thanks for stopping by and please let me know how you are doing today!

Stay cool

Tamiko

PS. The links and that picture are brought to you by this new fancy function in WordPress that I’m trying out… so I may have gone a little crazy with it… what do you think?

PPS. I am having a difficult time finding a theme that I like… hence the constant changing of the themes… still not loving this one… waiting for one to get published that makes me go WOW!

This Roller Coaster We Call Chronic Pain…

I have spent the last few weeks in a complete funk. I felt like shit. My flare kept me down. I had a difficult time overcoming my depression. Life was not fun.

Chronic pain is an interesting condition to live with… it’s like living on this ultimate roller coaster. Your life is literally going in these huge swings of ups and downs depending on the levels of pain you are in. YOU have to constantly be in control of your emotions. Everyone around you depends on YOU to constantly be in control of your emotions, your pain medication, your antidepressants (if you use them), your diet, your exercise regime, your sleep hygiene, basically every minute and second of your life. Let’s be real… this is just unrealistic. I know this… my chronic pain friends out there know this… but 99.9% of the people who live normal lives will never understand this. It’s incomprehensible to get this. Although they (folks without chronic pain) deal with it, they want a consistent “YOU”, not this sometimes  emotional, sometimes irrational/ erratic/ sensitive person. Sure we live in the straight areas of the roller coaster and we appreciate those times, but we all know that there are going to be the ups and downs.

Here’s the reality. The reality is, no one is perfect here. No one. Not us – the chronic pain people. Not them – the support people. We all have to understand this. So, there really should not be an “US” and “THEM” in theory, but in reality once again I challenge everyone to  think about this difference in groups. How do we bridge this gap? Is there a need to bridge the gap?

How do we better educate our family and friends around us? I still find it very difficult to talk about all the conditions I have. I don’t want people to feel sorry for me, I don’t want to get “that” look. I realize I need to be okay with how people react, their reactions are normal. I realize it takes time for people to accept and be okay with change. I want to educate people so they can understand the conditions that I have. I want people to understand that I am in pain everyday. Some days are better than others, but even though I look good on the outside (okay people I am not trying to say “I look GOOD!”, I’m saying I look healthy good), the pain I feel is real.

So, let me get back on track (good pun, huh? Sometimes I am pretty good! lol!)… I was on the down side of this roller coaster and I was falling fast. I had no sight of things getting better and I really felt like the pain was going to keep getting worse, my stomach has been upset, I’ve been using my cane, my depression has been bad… that dark cave was getting smaller and smaller. I was trying to find ways to get out, but I didn’t feel like I had options.

I have been praying and I pushed myself to spend the 4th with friends and family and you know what? That dark cave opened up and the light shined through. I allowed myself to just relax and my husband and my kids took care of me and I enjoyed time with old friends and family. I had a fabulous time! I am not a social bunny (understatement of the decade). I generally do not like to be around a lot of people, but I had a really nice time. When my pain got to be too much, I looked at my husband and he knew exactly what I needed and we said our g’bye’s. We came back to the house and rested for a bit and while I rested my husband took Tani out for a run and then we all went next door for the annual fireworks and then back home for the night. All in all a great day to bring some well needed light into my life!

Sometimes, it just takes the simple things in life. Some friends to light up your life. Say “YES” to the invitations to go out, even if you stay for an hour. You might be surprised by the smile on your face when you leave. Wear something easy and don’t be hard on yourself about having to look perfect, people want to see YOU! I have missed out on many opportunities and I am sorry for that. I can only hope to work harder at this.

Also, let’s find ways to better educate those around us, and remember we aren’t all perfect… it’s just not possible. Let’s find a way to bridge this gap. The responsibility is on us, we are the ones with the medical conditions and we have the knowledge. Let’s find better ways to share in a user-friendly way. If you have ideas, please share with me.

Thanks so much for stopping by! Stay cool!

Tamiko

Maybe There Are Just Too Many Maybe’s… Making Decisions With A Foggy Brain

Let’s say, for instance, you have to make a life altering decision. How do you go about thinking through this decision? Do you talk to your friends? Do you go in a dark room and think, think, think? Do you sit down and make a list of the pro’s and con’s? Do you talk to your counselor? Do you talk to your significant other? Do you talk to your dog? parents? What do you do?

Let me give you an example. You have the option to make a change that will make a significant difference in your income, your social life, even your daily life and will cause you to go through some pretty major positive and negative stress. You can either make this change OR you can keep  going in the life you have. The life you have is not bad. You make a pretty good income, you work with some of the best people on earth, you have some pretty major stress.

So, what’s the problem? Well, that was just an example. My question still remains. What do you do when you have a problem and you need to think it through? I struggle with this all the time when I have issues. With a foggy brain, when I try to figure things out… well, let’s be honest… I don’t get to the “figuring out” part. I start to do the research, but I have a difficult time reading through the policy jargon. The stuff that used to be so easy for me… this is the shit that I used to read through and help OTHER people understand. Now I’m the one that can’t figure it out. What. Happened. To. Me.

I have my good days when I can be a Lawyer! Of course these are my husband’s worst nightmare days. He should really pray these are the days he doesn’t get into an argument with me… because if I’m feeling good, I’m probably going to really want to use my brain! (God help him!) These are the days that I will willingly work 16 hours to get through as much email and paperwork as possible. I can process stuff very quickly vs. the normal time it takes. Quickly. This is how I used to work in the late 80’s and 90’s and early 2000’s bcp (before chronic pain).

I can remember those days. I used to work 16 hour days… everyday. I used to work 6 days a week… every week. My life was work, work was my life. Hmmmmm, I don’t think I should look back on those days and say “those were the good ‘ol days!”. There were definitely some GREAT days! I had a lot of fun working, I learned a hell of a lot… but I gave up a hell of a lot as well. I am certainly paying the price now. People still expect the same output or I should say, people would still like the same output. I also expect myself to be able to work like that. I still push myself to work those hours. I don’t know how to work an 8 hour day, stop working and then figure out what to do the rest of the time. Well, let’s be real here… after those 8 hours, I’m pretty much useless. BUT, IF I had energy after 8 hours, what would I do? I have no idea. There is so much to do… where would I start?

My problem is… I have so many things I want to do, I am overwhelmed. If I wasn’t working at all, where would I start? Where would I stop? How would I prioritize? The thing is… why think about it at all if there’s no chance at the moment?

So… again, I have this question about how to make this big life altering decision. I have this damn foggy brain. I have all these questions in my head. I am completely overwhelmed. I know there are all these processes you can use to make decisions… and well… I think when it comes down to it… maybe I’m just not ready to make this decision. Maybe I’m afraid. There are just so many Maybe’s.

Maybe. Maybe. Maybe. Maybe. Maybe I’ll figure out what I want to do soon.

But for tonight… I think I’ll go to sleep… and maybe, jussssttttt maybe, when I wake up I’ll have an idea of how to think through this decision!

Y’all stay cool! Thanks for reading…

A Simple Post: My Fibro Journal Template… Use It & Track Your Daily Progress… YES I SAID PROGRESS!!

Hi everyone!

I created this template based on the 10 week Level II Pain Program I took at Kaiser and I have used it every day for a month. It has helped me remember to take my meds, really understand my sleep (lack of sleep), how my pain goes up and down, when and how often I flare and… when I talk to my dr… I can actually speak factually (what a concept)!

Try it, tell me what you think… these are just pictures. I posted it a couple of weeks ago, but I thought if I showed you what the pages looked like, you would be more apt to try it out. :) You can download the template in my Awesome Resources tab.

If you are not tracking your progress… if you don’t use my template… create your own or buy one or do something! It’s important so you can see your PROGRESS!!!! Even if it’s small, you do progress. Even if it doesn’t feel like it… you are making progress. You will have bad days… but you will have GOOD days. Journaling forces you to see the GOOD!!

Okay, I’m off my soap box. :)

Thanks for reading and have a super cool and pain-free week-end!

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 1

MY FOGGY BRAIN: Daily Fibro Journal - Page 2

MY FOGGY BRAIN: Daily Fibro Journal - Page 2