invisible disease

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Day 7: TUI… Talking Under the Influence

Do you TUI? I was thinking in the car today about the effect pain has on my communication. I realized I TUI, “Talk Under the Influence” and that’s not really a good thing. I’m talking about under the influence of PAIN. Sometimes it’s mental pain, but most of the time it’s physical. I get that there are not a lot of moments when I am not in some kind of pain. I try to manage my way through and be the best person I can, but being my “best” does not always result in … well… even a “decent” conversation by any standard.

So what happens? Most the time I fake my way through conversations, I have talked about that before. That works in most situations. Where it doesn’t work is in my relationship with my family. I generally muddle through and after think to myself, “Why did I say that?” or better still, “What did I just say?”. These moments are not fun for anyone. Reacting in a negative way to a simple question or blowing up over nothing… a better word to use would be – OVER reacting. In this situation everyone is frustrated. My kids look at me like I’m an alien from another planet, while I’m wondering (in the moment) “What the HELL is going on??”. I know I’m under the influence when the conversation goes:

Me: Please go XYZ

Child: ok

Me (5 minutes, okay maybe 2 minutes later): Why haven’t you XYZ?

Child: Chillax mom

Me: WHAT? What did you say to me? Why are you talking to me like that? Why haven’t you done what I told you to? When are you going to do it? Screw it. You’re grounded!

Child: Why do you always get so mad at me? I didn’t even do anything!

Me: … well words can’t really explain how I feel at that moment, mostly I think my heads going to pop off my neck at that point… until about 10 minutes later when I’m sitting there, alone. Wondering… wondering what the hell just happened.

Talking Under the Influence can really hit at anytime. I don’t usually know I’m doing it. The most telling factor is when I’m mid-sentence or mid-thought and I forget what I’m saying or even what the conversation is about. I can’t figure out the next word. Foggy brain in the purest form.

I get that relationships are challenging under normal circumstances. Add in a chronic illness, both pain and depression, and it’s not really a recipe for success. It takes patience and hard work. Work requires energy, which most of the time is non-existent (I’m talking about never having energy… work? That’s always there!). A pretty dismal picture when you think about it. I’m sure I’m not the only one who wants to give up at times. You have to really play the entire movie out at this point… so…. you throw in the towel, what do you have left? In my case, I’d lose my support system… but most importantly I’d lose the love of my life. Is it possible to start over or maybe even… refresh a relationship? To give up, to me, means that I have let this shit win. I won’t allow that. I realize most relationships end over issues with communication. I know this is always going to be a challenge, given our circumstances… the bottom line is I have a choice. I have a choice whether or not to give up and walk away (albeit slowly walking with a cane) or to fight for what is important and totally and completely worth saving. Don’t give in to those bad moments, step away and start over and try again. I have to keep the faith and fight (crazy expression… fight, that’s what got me into this situation to begin with, isn’t it? :).

It’s challenging to live life within the rules, dreams and goals I have for myself, when this outside shit keeps wanting to take over. I can have a great day, get out and about and have a fun joy-filled day… almost always, the following few days are filled with pain reminding me what I have… as if I’d forget. It’s most difficult to keep my head up during those days. I get angry and frustrated and it certainly doesn’t motivate me to keep going. I can spiral down that slide to the bottom of the well, far easier than I can climb myself out of it. It’s non-nonsensical. It’s important to keep perspective. What do I have in my life? I have family and friends who love me, I have the best kids in the world (I really do) and a wonderful husband. Things are tough and will be tough, once again it’s how you get through this shit that makes the difference.

I may TUI, but if the people around me realize what I’m working with, I just keep praying they’ll continue to love and support me. Keep in mind, if you can look back and realize the moments when you TUI, it may help you understand where things may have gone wrong in a conversation. Admitting that out loud to the people who you have had those conversations with… well, that’s another story! :)

Best of luck. Thanks for reading!

Gentle hugz.

Tamiko

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Day 3: Superpower Day… Loving Yourself

I am participating in the Health Activist Writer’s Month Challenge. Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!

If I had a superpower what would it be?

The power to heal. The power to heal would be so amazing. Just thinking about it makes my head spin. That was my initial thought when I started writing. I have written and re-written this a few times. It was sorta like… “This is a no brainer, the power to heal! What more is there to say?” I kept thinking and thinking and at the end of each little writing session, I was a little frustrated and kept wanting to just toss this posting in the garbage. I’m not sure why this question was so difficult for me.

I am sitting here watching Oprah’s Master Class and Reba McIntyre was on… and something about her vibe made me realize… I know what my superpower would be! Yes, the power to heal would be awesome and there are sooooooooo many people I would use that power on. When I was thinking about this super power ability and the power of healing was on my mind… I started making lists of all the people I want to heal. But for some reason, it didn’t give me the answer I was looking for.

As I am sitting here watching the Oprah show, I realize I want the power to give people value and self-love. I would love to be able to give people the ability to wake up in the morning and go to sleep at night knowing they matter. No matter what challenges are faced in life, at the end of the day – they always see the glass half full. Anxiety, depression, judgement and insecurity don’t live here. They may not love their job or understand why they have been dealt the cards in life they have, but that doesn’t poison their view of life. Self-love is not selfishness or self-absorbed. Self-love is loving yourself for who you are, understanding there’s room for improvement and building your character in a more awesome way along the journey. I also believe this drives acceptance and understanding of everyone around you. This, to me, would be amazing.

So! There you have it. Day 3 of this month of blogging and I think I’m doing alright so far. :) Thanks for reading! Please leave your thoughts, I love to read them!

Stay cool and here’s hoping for a pain-free day!

Tamiko

P.S. The prompt for today reminded me of a prior post I wrote: Fibromyalgia and Doing “IT ALL”… What Do You Think? I still want that invisible plane!

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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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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

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