fibromite

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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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2012, Here I come!

2012… Damn, how did it become 2012 so fast? Aren’t cars flying in the air now? Doesn’t everyone have robots that do everything? Do we all live in space? Oh wait, that’s the Jetsons. When I was growing up I really thought that stuff would come true in my lifetime. I gotta tell you, I’m glad it didn’t! Remember how people thought the world was going to end in 2000 and again in 2012? I’m very happy those predictions didn’t come true!

Life brings many interesting changes… smart phones and the quality of the picture in HDTV‘s much less these new fangled tv’s that are 3d? It is just insane! I watched Rise of the Planet of the Apes last night and I must say… it was really good. I also thought the first one years ago was pretty good at the time I watched it… I don’t necessarily believe re-makes are a good thing, but this movie, this change was good. Remember how you had to actually talk on the phone? Oh yeah, and the phone was connected to a wall so you also had to stand in the kitchen in most homes, unless you were lucky enough to have one in your room. I do wish many times that my children had to use those phones instead of the mobile phones… but I can’t complain about that, those mobile phones have saved me many times.

Where am I going with this? Well… like the world, like technology, like life… my conditions change. Sometimes it’s not so good, but these days I am doing okey dokey. I started back on an anti-depressant (I think I already told you), some things I have to accept. One of those is my depression is not something I am able to manage very well naturally. I felt GREAT being off all the drugs, but I started to feel really depressed. I know you all know what I mean. I talked to my doctor and we agreed it was time to get medical… I mean medicinal… you know…. back on a drug. Taking a drug, the simple fact I had to flippin’ take a drug, depressed me – but I had to accept it’s okay. It’s okay to take something to help make me not have those crazy ass thoughts that we all run away from. Okay we don’t run, most of us, because running is a bit challenging :). We all walk quickly away from (some of us have our own version of a quick walk which for perfectly fit folks may be considered a slow walk – but hey! We gotta be proud of what we can do). Let’s be real… if you have depression you just sink into these thoughts and they grow like a fog around you and it just gets thicker and thicker until you are completed consumed and you can no longer see blue skies and feel the laughter anymore. So! This is why I am taking an anti-depressant. I am taking the short life Wellbutrin and it’s all going okay. It wasn’t great when I first made this decision, I started by taking Prozac and that just made me feel like a slug with no obsessive thoughts. I switched and now I’m feeling alright. It’s all about managing and accepting change.

If you have Fibromyalgia, ADD, and/or Major Depression like I do, you should be a professional at managing change. Certainly doesn’t mean we enjoy or want change – it’s just a part of our daily lives. If we have plans and we wake up feeling like shit… well? We have to make the best of staying at home and enjoying some down time. We have tried every medical and natural cure, or better said, “fix all” out there. Each time we go through the expectations of taking something new and the outcome and reality that there is no cure today (notice I said “today”). This is managing change at its best (or worst as the glass is half full goes). Everyone with a medical condition faces these types of challenges.

I take each day as it comes and I do my best to appreciate my good days, be thankful for the awesome things in my life and accept change. This is certainly not easy. One of the awesome things I am most thankful for is my support from family (including the 4-legged ones) and friends. I have the most amazing group of folks in my life!! They are all going through their own trials, whether medical or emotional, and I only hope I can be as good to them as they are to me.

2012 is going to be another year of change. It’s going to be awesome because I am going to make it awesome. I hope you do the same.

Please let me know how you are doing, I love hearing from you!

Keep on reading and stay super cool. :)

Tamiko

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The Progress We Have All Made… Fibromites Unite!

I woke up this morning thinking about my blog. I cannot believe I started writing this 2 years ago. I realized, from reading my old posts, that I have come a long way. When I say “Fibromyalgia“, I don’t get as many blank stares, my doctors at Kaiser all “get it” now and I feel like my support system is pretty good. Not just pretty good… Damn good! I hope if you take some time to think back… you can see the progress you have made, that your support system is good, that you can see more blue skies days than dreary grey days.

I cannot believe that I have had over seven THOUSAND, seven HUNDRED hits on my blog!! WTF?? I mean, seriously, if you only knew. When I first started writing, I remember looking at other blogs and seeing how many hits they had and just wishing I could get someone to read my blog. I was so happy when I hit 100! To have had so many folks stop by and read for the last two years is truly amazing. I really appreciate it, I love to get comments and read what other people’s lives are like. It’s so important to me to know I’m not alone. I’m not crazy (okay, the jury’s still out on that), I’m not in this crazy painful world, going through these always new and UNexciting pains, on an island by myself. I am very sorry for you that join me in this world… wait, let me be clear… not sorry FOR you, just plain sorry. I wish none of us had this f’ed up thing we call FMS. But! It is what it is, and I, you, we …. are not alone, we are in this together. Fibromites Unite! (we need a good kick ass theme song  in the background when we say that)

I looked back in my blog and came upon this letter that someone else posted on their blog. It still holds true and I wanted to share it again. I hope you all are having a great day… foggy brain and all. It’s the last shopping week-end before Christmas, don’t overdo it. Take some time to reflect on the progress you made and give yourself a big round of applause and smile. Most importantly, smile. We don’t do it enough… find someone to laugh with today and think positive. Throw the negative shit out the window, hug you family, your four leggeds and be thankful that we have another day to face the world. Make it a good one!

Best holiday wishes to all of you!!

Hugz.

Tamiko

Letter to people that don’t have Fibromyalgia (FMS) and/ or MPS (Myofascial Pain Syndrome):

By Billie Chainey

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”.
When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time; in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy.

Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “being sociable” and so on … it applies to everything.
That’s what FMS/ MPS does to you. Please understand that FMS/ MPS is variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”
If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.
Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes, take this pill/ supplement… may frustrate me to tears, and is not correct… if I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.

Another statement that hurts is, “You just need to push yourself more, exercise harder…”
Obviously FMS /MPS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/ MPS may cause secondary depression (wouldn’t you get depressed if you were hurting and exhausted for years on end!) but it is not created by depression.

Please understand that if I say I have to sit down/ lie down/ take these pills now, that I do have to do it right now –
it can’t be put off or forgotten just because I’m out for the day (or whatever). FMS/ MPS does not forgive.

If you want to suggest a cure to me, don’t.
It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there were something that cured, or even helped, all people with FMS/ MPS then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/ MPS, and if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor.

In many ways I depend on you… people who are not sick…
I need you to visit me when I am too sick to go out…
Sometimes I need you help me with the shopping, cooking or cleaning…
I may need you to take me to the doctor, or to the physical therapist…
I need you on a different level too… you’re my link to the outside world…
If you don’t come to visit me then I might not get to see you…

And, as much as it’s possible, I need you to understand me…

I would also like to add a personal note to this that isn’t listed above that would be a tremendous help emotionally.

Please don’t make my disease about you… .or say things that make me feel like I let you down. Things like, “Oh, I was hoping you were better today.” make me feel guilty and that I have somehow disappointed you. I understand this disease effects everyone involved, but the last thing we, as the sick ones, want is to burden anyone. We have plenty of guilt for being so dependent on others as it is, we don’t want to feel like we’re disappointing you or making you feel bad by saying that we don’t feel good. We don’t expect you to say anything about us feeling bad as a matter of fact. Just be there… hold us when we need to cry from the pain or frustration of being so limited. We know you care… otherwise you wouldn’t come around or even ask how we’re doing, but please don’t make us responsible for your emotions too. When the bad days hit… we’re doing our best to deal with our own.

If you must say something it’s ok to say you’re sorry for what we go through.. but please don’t make us feel like we’ve killed your hope.  You are our source of encouragement.

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What Are Your Christmas Memories?

New post, new holiday… the last couple weeks I have really been remembering a lot about this time of the year growing up. I realize now, as I’m sure many of us do, that I was so blessed. My mom was the bomb diggedy! She is and was the most amazing mother and woman. Holidays was her time. I look back and I’m amazed and so thankful for all she did.

The house had the aroma of Christmas, the tree, the baking, the wood burning in the fireplace… wow, I love those memories and how special that time was. My mom baked and baked and baked, we would spend days baking cookies and bars. Decorating cookies, man I looked forward to that all year. She would mix up all the colors for the icing and break out all the cool stuff to decorate the cookies and then set us free. She would decorate cookies with us and hers were always so elaborate. She broke out the toothpicks to really get the detail on those cookies. I cherished those cookies, I never wanted to eat them they looked so good! Of course they tasted amazing too, so I used to sneak as many as possible. It never stopped there though, she must have baked dozens of different kinds of cookies. I remember all the dough in the fridge waiting to be shaped and baked. Even after I grew up, moved out of the house, had a child… she still continued to do all the baking. To think of all the work it took to make all those goodies, it just amazes me.

Of course baking was just a part of the holidays, my mom was so crafty! She made ornaments and we all pitched in. I have all the ornaments on my tree and every time I decorate the tree, all those memories come flooding back. We would sit at the dining room table and she would teach us how to make these cool ornaments. We would be the pain in the ass kids and she would just keep going. I cherish all these beautifully crafted ornaments, the time she spent making them is so apparent in the detail.

My mother would put up the nativity scene with the christmas lights put up around them with all the angels and the sense of global awareness. Ornaments and angels from all around the world, recognizing the importance of the season. The time and effort that she would put into the decorating, I loved it and I miss it now. Of course, I didn’t appreciate the effort at the time as much as I do now that I have taken over all the decorations. Now she gets to enjoy the decorations that we put up in our home.

I remember being at home and she would go in her room and shut the door and tell us we couldn’t come in. They hardly ever closed the door, but we knew she was up to something in there and on Christmas morning all these beautifully wrapped gifts would be under the tree with our stockings full of goodies. Trying to figure out what was in the presents and getting to pick one present to open on Christmas Eve… brings such a great feeling of happiness.

These memories are so important as I attempt to instill the holiday feeling in my own home now. I am not even close to the holiday elf my mom was. She now sits back and enjoys the grandchildren during the holidays. It’s now time for us to carry the holiday traditions forward.

Growing up we used to always go to my grandparent’s house and hang out with the aunts and uncles and cousins. I loved those days! Driving down to L.A., the anticipation of getting to the house, unpacking the car late at night, tired as hell… but so excited to be there! My aunts and uncles and grandparents have passed now, I can’t imagine how difficult this must be for my cousins. It must be so different for my folks as well, different doesn’t mean bad, just different. I’m sure you understand what I am talking about.

We have created new traditions in my family since marriage and children. We always drive down Christmas Tree Lane in Palo Alto to see all the lights on the houses, we bake cookies with our best friends and the kids make crazy sugar cookies. Christmas Eve we go to our best friend’s house to celebrate with them and our Godchild, Christmas day we stay home (like we did growing up)… my brother and parents come over in the morning and the kids open their presents. The rest of the family comes over throughout the day and we eat and sleep all day. Thank God for the friends and family who continue to make  Christmas so wonderful. My own craftiness comes in the form of scrapbooking. I make calendars and put the best pictures from the year to create a memory from the previous year.

I thank you for giving me this opportunity to share my most cherished holiday memories with you. I hope you share yours with me.

Remember the reason for this season and I wish you all peace, no pain and happiness during this time.

Hugs to all of you (gentle ones of course)!

Tamiko

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Detoxing – I thought I was okay… I actually had a migraine!

I am seriously thinking about…

the days when I never thought about being sick.

when I was young and everything new seemed so “cool”!

the days when my most difficult decision each day was, “What the hell am I going to wear today?“

what it would be like to live in a beach house and hear the sounds of the ocean as I go to sleep and wake up in the morning.

what my life would be, had I made different choices.

what choices I have at my age… seriously, what choices do I have?

without prescription drugs, what are the chances I can survive?

could I go a week without sugar?

what life in my house would be like without tv.

if I could reverse 3 choices in my life, what would those be?

what is love?

do I even know what “normal” feels like anymore? Is there such a thing? Will I ever feel it again? Did I ever feel it to begin with?

are dreams attainable?

is there such a thing as a perfect relationship?

are we defined by what we do? how we live? what we believe in?

does pain push me to depression or does depression push me to pain?

All these random thoughts come and go. Obviously not in any kind of logical way… let’s not forget “MY FOGGY BRAIN” is my name. They are all just random thoughts. Tonight is the first time I have actually thought about anything other than being sick in a long time.

I have been really sick. I didn’t even know it until this week. From my last post, I thought I was doing so well. I didn’t realize I had a migraine – and one that seemed to have lasted for weeks. I have been detoxing from Topiramate and Cymbalta and I took weeks to taper off the both of them. I noticed immediately the benefit of getting off the Topiramate since the suicidal thoughts and feelings went away immediately, suddenly, as if someone snapped their fingers and my brain just woke up – SNAP! Suicidal thoughts? GONE!

The Cymbalta on the other hand has given me way more problems, I assume this is why so many folks have found ways to provide their feedback – one way or another.

This past Sunday, and up until last night, I had this pounding headache, dizziness, nausea, sensitivity to light — I never put together that it all pointed to migraine. I just assumed it was a side effect from the tapering off of the meds and it would go away. I was completely WRONG on the “going away” assumption. Four days of this shit and finally I contacted my doctors. Last night I ended up at the doctor’s office receiving a Toradol shot in one thigh and a shot of Phenergan in the other thigh…. ummmm…. ouch! But let me tell you! The “ouch” from the shots was well worth the end result!

For the first time in months, I was able to actually SLEEP. You heard me. I finally slept for the first time in months! You fibromites out there know what I am talking about. Sleep? This is an enemy on most nights when we all want it to be our best friend. The best part of the deal? Let me say this really, really loud because I need to scream it from the roof tops… “NO FUCKING NIGHT SWEATS!” Whew! Glad to get that off my chest. I did NOT wake up 4 or 5 times in the middle of the night drenched in sweat and wondering what the hell just happened! I slept right on through. I didn’t just feel like I ran a marathon, no adrenaline filled dreams… I actually slept. Miracle! Apparently the night sweats I have been experiencing are related to the migraine I had? Very strange, but whatever. I’ll take it. As long as it stops or has stopped, I am ecstatic!

Here’s the thing… I was so used to having headaches, upset stomach, dizziness, completely active/ vivid dreams, night sweats… you get the picture. I didn’t think that it was anything more than the side effects of my illness(es). When I talked to the doctor last night and he was like “I believe what you are experiencing is a trigger migraine. You’ve had it for weeks.” I thought to myself… “NO WAY!” How could this be? So, it’s not specifically a side effect of Fibromyalgia, but it is a side effect of detoxing from the meds.

I took a leap and went in and tried the shots and it worked!

Of course it’s almost 3:00 in the morning and I can’t sleep now, but I’m okay with that since I don’t have all the rest of the shit going on inside me. There’s always a good and a bad to every life experience, right?

If you are having any of the symptoms I had and you aren’t getting treated for it … take it from me, see your doctor and push for help. I didn’t have to push, the doctor believed I needed help. Yours should too. If your doctor doesn’t help you or acts like it’s all in your head — GET A NEW DOCTOR! Do not let your doctor bully you or make you feel stupid. This is your health you are managing, not his/hers. I have said it before and I’ll say it again, “Take control of your health!”.

Thanks for stopping by, leave me a comment, I absolutely love to hear from you!

Stay cool.

Tamiko