Pain

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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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GUEST BLOG: Dear Wife and Fibromites… a letter from my husband

Hi everyone… my husband asked me if he could guest blog tonight. It came as quite a surprise as he’s been in the bed for the last few days. I would have thought the last thing he would want to do is be a guest on my blog. I share this with all of you and hope you have as wonderful a husband as I do! Please share this with your family and post your comments, we’d love to hear from you. – Tamiko

Dear Wife and Fibromites,

Thank you for letting me guest blog! So here I am, sitting in this empty bedroom, on my third day of pain. I have a pinched nerve that’s radiating down my neck to my back down my arm. I went to urgent care Wednesday morning in the most excruciating pain I have ever been in, (in my life). Once I got home, I barely made it up the stairs, then to top it off, I sat on the side of the bed in the most debilitating pain while I waited 2-2.5 hours for the Naproxen and Hydrocodone to kick in. Longest 2.5 hours ever! Now understand, I have a high tolerance for pain (so I thought) you see I’ve broken bones, torn cartilage, I even once played soccer for 2 weeks with an unknown broken foot!

So with that said, I thought I had a high tolerance. This pain was unfamiliar to my body, but very familiar to my brain. Hmm, where have I seen this familiarity? That’s right my wife! There have been many times when my wife could not make it up the stairs, could not move a muscle in her body without a grimace, and many times NOTHING would help. Holy shit, I am getting a “taste” of what she goes through as well as anyone else with that shitty ailment Fibromyalgia. Upset stomach because of the meds I HAVE to take in order for the pain to subside, have not eaten in 3 days, super sensitive to smell, constipation and nausea (TMI), but a big part of how I’m feeling. I have been waking up at night every 2 hours, awake for 1 hour, then sleep again for 2 hours. Just sickening! And the kicker is, I see zero light at the end of the tunnel. I am a walking zombie in pain right about now.

So back to my wonderful wife… all I can say is if you have a wife, spouse, partner, friend or family member with any type of chronic pain, I just realized you might never ever understand how or what they feel. And yes, this could be a boneheaded statement, because if your loved one tells you how they feel, you theoretically should understand. But you won’t, take it from me it’s been many years for me being on the non-pain side. But this little touch of pain I am experiencing right about now is letting me know what it really feels like (only if it’s just a few days) I actually feel like the idiot, selfish, self-centered husband, who supports my his wife, but was not really “getting it”. I have been in pain for 3 straight days (laughable to her 10 years) But I do understand just that much more. I always tell her how “I wish I could just take some of her pain away and have it go into me” I am re-thinking that right about now. This pain shit is no joke! My sensitivity level has just risen, my advocacy level has just risen, and my awareness level has just risen. I will listen more and I will help more, I will cook better foods for her, I will read more and I will educate myself more.

In summary, first off I can’t blog anywhere near how my wife can blog, but I thought I would just guest blog and share my great and terrible experience. Basically you think you know, but you don’t know. It is humbling and revealing all at the same time. If you are like me and have a wife in this life battle, hopefully you can just take a little from this blog even if it’s just to open your eyes that much more. So what needs to happen at this point is us non-fibromites need to stick together as well. We are the support system!

Thanks for listening.

Ray Arbuckle (husband and advocate of Tamiko Arbuckle)

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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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Pain and Parenting

We have a son in college and a daughter in middle school. Both of our kids are amazing. I thank God every day for keeping them safe and healthy. I know that there is only so much I can do in the short time I have with them before they go off on their own, only so much advice I can attempt to give.

My life as a parent is challenging living with the illnesses I have. The best I am able to do is to share my experience living with depression and ADD and try not to feel guilty for the disabilities I have with my pain (both physical and mental).

Guilt is like stress – it’s a killer. I have a lot of it when it comes to being a parent.

B.F. (Before FMS), I was a serious work-a-holic. I worked 14 sometimes 16 hour days, 7 days a week. I would literally roll out of bed and start working, drive to the office and work until late at night and drive home, check my email again and then just barely make it in the bed… sleep a few hours and do it all over again. I did this until my body broke. I went from crazy, insane drive myself to exhaustion on a daily basis to never being able to recover again because I was broken. Years later to be diagnosed with Fibromyalgia.

My children have… suffered is a strong word, but they have had to adapt to me being unavailable due to my work and then unavailable due to my pain. When I say there is guilt there, that’s an understatement. There are a lot of times when I feel like a failure simply because I can’t drive. Those people who complain about “taxi’ing” their children around have no idea what I’d do to provide that service. I see that time as a good opportunity to have 1:1 time with the kids, my husband has learned a lot in the times he has driven the kids around.

It takes a lot to work full-time and manage this crazy illness. I know a lot of people do it, this definitely helps me to have hope. But, I’m telling you – by the time Wednesday rolls around I’m starting to get very tired. Thursday? Counting the hours and on Friday! Just forget it! By late morning I can barely hang on. The week-ends are about trying to relax and not over-do it so I can start all over on Monday.

How does this work with parenting?

It’s definitely about teamwork. Although sometimes I get very jealous. My husband does it all… he cooks for the family, he transports, he does the shopping, he is the “go to” guy in the house. I know I shouldn’t be jealous, but I want to be that person… I want to be the “go to” gal. The problem is, I’m in no condition to do what he does. I’m unreliable. I’m inconsistent. At the end of the day, literally, my husband really IS the guy. If it wasn’t for him this family wouldn’t function.

Reconciling these emotions that I have is tough. How can I be upset when everyone is being taken care of? I should not be complaining, I should be happy. It’s a blessing. At the root of all this, I want to contribute. Practically and emotionally. Not being physically or mentally able to do this kills me. I feel guilty that I am not able to do more, that I didn’t make the choice to do more when I was working all those hours. Like I said… guilt is a killer. I can’t let it win.

I know, in my heart, that my children love me. I know that my working provides for the family. I know that I can’t do it all or, a lot of the times, even more than what I do. It’s up to me to accept who I am today and constantly strive to be a better and good person. I know God has a defined plan for all of us. All of this, I know. But still, I struggle with the constant roller coaster of feeling okay, feeling great, feeling okay, feeling like shit, feeling okay, feeling great! That roller coaster creates a lot of frustrating emotions and wreaks havoc on any kind of planning in my life. This makes it tough to be an active participant in the family, hell it makes it tough to be an active participant in LIFE.

The pain, mental and physical, is not a small issue in parenting. I can’t expect my kids to know what I’m going through and how it affects my behaviour and communication. It’s not their responsibility to figure it out, they have their own lives to lead. It’s up to me to do a better job of communicating and work on patience and mastering mindfulness thoughts.

Don’t let the pain win, right? Mindful meditation, prayer, yoga… all these things are helping me make it through. We have all had and will continue to have challenges that we face, it’s all in how we face them to get to the other side.

As always, I’d love to hear your comments. Thanks for stopping by!

Stay super cool!

Tamiko

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How clear is your head? My fibro life post-detox.

It’s been exactly one month since I last posted to my blog. I haven’t been here. I haven’t checked my blog, I haven’t been on Twitter, I haven’t been social networking much at all. I have just been trying to live and take every day as a new day. My new life without meds. This is very new and uncharted (honestly I thought the word was “unchartered”, but it’s apparently not a word) territory for me. I have been on some type of medication for as long as I can remember. Meds for depression, meds for pain, meds for insomnia, meds for migraines… Lordy! There is definitely a prescription for every ailment. It’s super crazy when you think about it. The pharmaceutical companies definitely make money off us chronic pain / depressed folk!

Since going off my daily meds, I take Flexeril for muscle pain every 2-3 days. I like it because I don’t have to take it everyday and there’s no side effects if I DON’t take it, and the big benefit for me is it knocks me out at night. Not having that requirement to take a pill every day and multiple times throughout the day is incredibly important to me. I have had so much crap in my body for so long, it’s nice to only take pills when things get really really bad.

My head is so much more clear since going off the meds. There’s the good and the bad with this. I have reality in my face at all times. Who wants that? LOL! Honestly, my reality NOW, is so different than it was on those meds. I am doing a hell of a lot of self-talk, let me tell you! It takes a lot more to maintain a stress-free life in this new world.

… and did I tell you? Oh my gosh!! Stress is the daily devil I fight. Now, when I get stressed, my body retaliates like nobody’s business. Instant pain or instant headache or instant upset stomach… or my very favorite – instant emotional breakdown (ya gotta love those), etc. This stress stuff is no joke. Living and thinking like those professional “be happy” people is not easy. “Don’t sweat the small stuff!”, really? Live my life and let’s see YOU not sweat the small stuff. Sometimes the small stuff just gets me flippin’ frustrated and yes, I stress (I am human y’know). I am not saying it happens everyday, but it only takes ONE TIME and my body is like, “eff you! I’m retaliating!”. Don’t even get me started about what I would define as the “big stuff”. I think we can all agree, stress sucks.

Where was I… oh yeah, my head is clear – let’s not go crazy, I’m not ummmmm, “normal” like I once was pre-FMS (as is evident by my ADD writing you are reading right now). This is my new “normal”. I can do my job and feel pretty good about it vs. doing my job and wondering if I was making any sense a lot of the times. Towards the end, the drugs seriously, and I mean SERIOUSLY (in caps and super duper bold) fucked. me. up. (excuse my language but I need to be aggressive with this)! It still scares the crap out of me to look back on those last couple of months. I know I have harped on this, but I cannot imagine how many people are on drugs and the side effects are doing more damage than the actual illness they are trying to treat. That was definitely the case for me (can ya tell?).

I am ready to start with a different regimen. Exercise, good healthy food and targeted vitamins and supplements. I know this is not some crazy new idea – but for me those first two have always been challenging for me. It’s time I stop screwing around and really make a go of this.

I have noticed lately sugar definitely effects me nowadays. This is not cool. I mean seriously, I have the world’s craziest sweet tooth these days and every time I try to eat something sweet – BANG! upset stomach and a headache. Really, really, REALLY uncool. Fibromyalgia, depression, ADD and now sugar is a problem. Awesome.

I also tried the gluten-free diet… annnnndddd as my God-daughter says, “I think Godmommy needs the gluten back”. I actually was feeling worse… weird, right? I never said my stuff made any sense. It’s damn confusing to me all these different diets, vitamins, supplements, approaches, eat this-not that… ARGH!

Well, I would love to hear what you are going through and please share your experiences. It always makes me feel better to know I’m not the only one.

Thanks for stopping by! Stay cool!

Tamiko