invisible disease

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Day 16: Pinboard…

The prompt today is to create a pinboard for my health. I created one just before I joined this writing challenge. I have been posting most of my prompts from this challenge there.

My three favorite prompts so far in the challenge are:

Day 5: Ekphrasis Post… WHAT? Ekphrawhatis? #HAWMC #Fibroymyalgia #Depression

Day 7: TUI… Talking Under the Influence of Pain #fibromyalgia #depression #HAWMC

Day 11: THANK YOU! Remembering my very first post: The F word… Fibromyalgia #HAWMC

Short and sweet today… it’s been a rough one for me. Rough or not, I can’t forget to wish my dad the very best birthday in the world!! Without him, I would never have this ability to communicate.

Take care everyone!

Tamiko

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Day 15: My Writing Style…

Today’s prompt: Writing with Style. What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?


In a perfect world, I truly love pen to paper. I am easily obsessed with stationary and pens and journals and all things paper. Put me in a stationary or nice card store and I’m in heaven. I would love to have hand written all my blogs and have them in a nice journal to reflect upon now and again. The reality is, I can no longer write without pain. Add to the pain that my writing looks horrible these days and it only leads to frustration and emotional pain for me. It ends up being just another reminder of what I’m facing on a daily basis.

Not to wallow in despair over this… I’m laughing to myself at that sentence I just wrote… “wallow in despair”? Seriously? I digress for a moment, but bear with me as I have been watching a lot of PBS Masterpiece Classics and Mysteries. I love Inspector Lewis, Downton Abbey, Sherlock Holmes… etc. I think I may have picked that up somewhere. That is definitely not something you’d just hear me say on a daily basis.

Getting back to the topic at hand, I am not sure what my writing style is. I try to stay positive, I’d love it if people smile or laugh when they read my blogs. I don’t beat myself up if I tend to have a down posting now and again as that’s what life is. Life is not always rosy, but my goal is always to end on a happier, positive vibe. I never want people to visit my blog and leave sadder or more depressed. There’s enough of that in real life, I believe most of us with these invisible diseases want hope, something to make us believe there are solutions out there. We want to know people are living successful, happy lives – or even “living” life at all. I mean getting through each day with some type of success to celebrate, small or large. It keeps us going.

When I am writing (or should I say typing?) My mind generally goes super fast and I have a difficult time typing as fast as the thoughts are coming. Many times I’ll be typing and half way through my mind will just go blank. Maybe it’s a signal to stop and review what I have typed so far, maybe it’s just my brain deciding it’s gone on overload and needs to reboot. Whichever it is, I either review and throw it away, re-focus what I have so far or keep on going after making a few edits here and there.

I don’t have planned days to blog. I am very inconsistent and go through phases where I don’t even look at my blog for months. When I am in a flare or particularly bad time of depression, I don’t really want to write. The words would only depress me and everyone else. I just don’t have the energy mentally to pull it together. This writing challenge has definitely been a true “challenge” for me. I am proud of myself for keeping up with the prompts and I have made it a goal to get through these thirty days. It’s been very pleasant and more relaxing and fun than I thought it would be. I find myself thinking about the prompts throughout the day.

On all of my postings, I will wake up thinking about something I want to write about or during the day I’ll mentally have a topic pop up in my head. I will think about it and mentally write something in my head and in the end if I am really feeling good about it I’ll jump on my laptop and start typing. There are a lot of days where I just think about a topic for hours and end up not writing anything – or I’ll start writing and decide I don’t really want to complete the post. I admire authors and writers tremendously for their ability to focus and get through writing a book or people who keep coming up with fresh ideas for their blogs. It’s not easy to hold people’s attention. Especially these days with anything and everything at your fingertips on the internet. When I hit the publish button on my postings, I always have a feeling of “did I just do the right thing?”, “will anyone read this?”, “did I say anything I shouldn’t have?”, “Am I the only one who feels this way?”. Receiving the positive feedback from people is always reassuring.

This blog, my diary of my journey with Fibromyalgia, Depression and ADD has helped me in so many ways. I hope, if you haven’t started a blog, this inspires you in some way to start one up. It’s not as much about readership as it is about self-realization through the writing process. It’s a great way to express yourself and help those around you… your family and close friends to understand what you are going through without having to articulate it verbally. I am not good at talking about what I experience and this is my way of communicating. I know my dad reads these postings aloud to my mother and it really makes me feel good to know I have my best supporters with me on this journey. My husband reads and comments to me each time I post something new.

Well, I am about to go and have my dream day… a trip to the zoo with the fam. I’m really looking forward to this day! I wish all of you a wonderful Sunday and hopefully this will be your dream day too.

Gentle hugz!

Tamiko

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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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I Went to the Beach Today…

I WENT TO THE BEACH TODAY AND… now

pain pulsates through my body

i suffer for having to walk at all today

my legs scream in pain

feet tired

my chest is bruised on the inside

arms and shoulders

exhausted

neck

my neck

i wish

my neck

was

not

so

tense

so

i

could

relax

but that is not the case

and

to top off this day

i have a headache and

my heart is heavy on this day.

WHILE AT THE BEACH… I DID

have a nice time with my very close friends

we ate great food, good conversation

wonderful weather

i

did

relax.

i

should

have

stayed

at

the

beach!

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What’s Your “In Your Head” Morning CheckList? From One Fibromite to Another…

… i am running about to go up some stairs … anndddd I’m awake! well, my brain is slowly adjusting to the morning fogginess attempting to determine dream vs. reality. ummmm running? definitely dream! as i slowly go through my morning checklist in my head…

  • can i move my legs? let’s see… i can already feel that numbing-tingling-i’m-gonna-go-limp-on-you feeling in my knees and i haven’t even gotten out of bed… great. it would be one thing if i had maybe been on a 2-hour bike ride first, but this is ridiculous… oh yeah, it was all that running i just did. the top of my legs, right on that bone area… as long as you don’t… well let’s just say touch it… we are all good! maybe i should just invest in shin guards… soccer fever is in the air, right? hey, my thighs? alllll goood!!
  • how about my feet? toes are good – check! bottom of my feet are good, yes! i hate that pins and needles or i should say spikes and knives that go on for about 1-3 minutes that feels like 15 minutes that make me want to scream in pain! AHHHHHHHH!!! but i can’t complain about that at this moment… woohoo!! tops of my feet were feeling a bit of “the jolly green giant stepped on me” pain, but i can deal with that.
  • i’d love to skip that middle of the body – ’cause … well … it’s just a bit massive so in my mind it’s just best sometimes to forget about it. (“body image mom!” i can hear my daughter saying because i don’t like to say negative things around her… i don’t want her growing up constantly obsessing about her body image. shit. i hate when stuff comes back on me like this.) okay.  anyway, my tummy is upset as it always is these days when i wake up… when i am awake… pretty much all the time… and i don’t end up with a beautiful bouncing baby 9 months later either!! let’s be very clear — i don’t want a beautiful bouncing baby at this time in my life, but for feeling sick like this? you’d think it would be the end result! i keep thinking i should break out my maternity clothes because my stomach is all bloaty and upset all the time, then i remember, nope just another side effect. damn. (and i thought i had an excuse to go clothes shopping!)
  • arms…. oh my arms. yup! let’s just say they definitely are not going to be doing any heavy lifting today. light lifting is out as well. driving? not today either. wrists? high on the pain level scale… and shoulders? high, very high.
  • neck? well… unfortunately that is not a good place for me. neck and shoulders is where i carry my stress. i have to constantly remind myself… r-e-l-a-x! i do a lot of the deep breathing exercises and relax my neck and shoulders during that time because i constantly forget to relax there… pain is high. i will get up and do my exercises and hopefully that will help.
  • head? i have a headache this morning…

guess what day today is. just guess. no really. because i am in bed saying to myself it’s definitely a “cane” day and i’m not talking sugar cane… it’s definitely a day to take a long nap and rest. although i will try to convince my husband to take me to the dog park, my favorite place to just get away and relax. it is, of course, saturday. because that would be my free day and it has become my “down” day. literally. after working 5 days and wanting to have a fun day, i always end up with this “down” day. which actually isn’t the worst thing that could happen… i just don’t like things forced on me.

this week has actually been great, we’ve had friends from out-of-town visiting to make for better days and last night we had a great night out. tomorrow we will go to the beach. it’s not the usual week. no complaining from this girl!!

what’s your usual “in your head” morning checklist?

wishing you all a pain-free week-end! thanks for stopping by… stay cool!

tamiko

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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…