Category Archives: fibro fog

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It’s Monday… What Kind of Week Do You Want to Have?? You have the Power to Make it a Good One!!

It’s a Monday night… almost 10:30 and I’m sitting here thinking to myself… “What kind of week do you want, Tamiko?”. I have the control to determine my week. I have to keep remembering this. I can complain and end up discouraged and having a negative vibe or I can praise and feel encouraged with a positive vibe. Hmmmmmmm, seems an easy decision… an obvious decision – but habits are hard to break. I choose to take one minute at a time. I have decided to start tomorrow and only say positive things, not gossip and not complain. I’ll forgive myself if I make mistakes, but at least I know I’m going into it with the right attitude. I just have to wake up and start the day right… right?

A couple momentous events have occurred, even since the last time I posted… First, THANK YOU! My blog reached 20,000 hits. I can’t even say that and begin to believe it. 20,000 hits! That’s awesome!! My second, and I should say equally as momentous event is… and I’m going to write this in bold…. I walked 15 miles last week. Let me say that again… I walked 15 miles last week. I have never done this before. I don’t think I have ever walked 5 miles in a week. I walked 1.5 miles at a time in the beginning, sometimes twice a day and at the end of the week I was walking 3 miles straight through. I still can’t believe it.

Let me tell you what I did differently than before:

photo

Views while walking in the rain…

  • I purchased some new shoes. I had the same shoes for years… I decided to get some good shoes (Sports Authority, $40 Nikes).
  • The first time I walked, I went out by myself. I didn’t know it at the time, but it was a deliberate decision to go alone. I put a podcast on and I walked at my own pace. Which let me tell you… was pretty slow. I walked up the hills with very, very short strides and with my back straight so I wouldn’t put a strain on my shins or back. I took my time. I took in my surroundings and didn’t walk to hurry and get to the end, but I walked to learn how to enjoy being outside and breathing in fresh air.
  • Each time after, I kept the same, slow pace being very cognizant to not go overboard with my pace or stride. Learning from my past… Every time I have started walking like this, I ended up getting shin splints and having to stop for weeks… which then resulted in me stopping all together.
  • I tracked my walks in an app on my phone… duration, pace, distance (uses GPS). I have a couple of friends that see my activity and we encourage each other. Seeing my accomplishment in this app is very motivational for me.
  • I didn’t let the weather stop me… and I was happy that I went out in the rain/ sprinkles… it’s just water!

If I can accomplish these things… YOU CAN TOO!

So, what kind of week do you want to have? I want a good one and it’s in my power to make it happen!

Thanks for stopping by. Have a great week!

Gentle hugz.

Tamiko

P.S. Let me tell you… after I finished writing the content for this posting, I went to insert the picture that you see. I have been tested. It has taken me almost 20… TWENTY minutes to get the picture into this post. I am not complaining, I am saying I have been tested. So… I just practiced my breathing and reminding myself the point of my post. LOL!! :)

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Day 17: Learned the Hard Way…

What’s a lesson I learned the hard way? Hmmmmmm, which lesson do I choose? There are so many possibilities.

A lesson I keep learning… the hard way… is that exercise makes a difference. Another lesson? That my diet makes a difference. It’s like I know what I am supposed to do, but my brain says otherwise. Take my meds everyday at the same time, manage my stress, manage my time… there are so many things I know I should do. So I guess I haven’t really learned my lesson(s)… yet.

I would have to say the biggest lesson I have learned is the “overdoing it” one. I am much better about stopping when I should, not over committing, holding back when I want to get something done. I realize the consequences of my decision mean I will be out of commission for days on end if I don’t restrain myself.

My perfect day on Sunday, we went to the zoo. Normally I would take my cane, but I knew there was no way I could make it from the car to the entrance without my pain making it so uncomfortable it would start the day off badly. I used a wheelchair. This is letting go of my pride to the infinite degree. I really just had to accept this was the only way I was going to get through the day and have fun. I can tell you, I was simply exhausted at the end of the day. The wheelchair saved me, but it didn’t alleviate the pain or exhaustion. I thought I’d experience less pain, but I didn’t allow it to ruin my day. I also didn’t overdo it. I had my perfect day.

It’s so easy for all of us to overdo it. Overdoing it can mean vacuuming the house or washing the clothes or making dinner. It could mean working a normal 8 hour day. Living within our boundaries is not easy. Trading one activity for another could mean working and not participating at our child’s sporting event. It’s not fair, but these are the decisions we are faced with. We need to feel okay about it or we tear ourselves up for it. I am not a bad mom, a bad wife, a bad employee… I’m not a bad person. I am someone living with a health issue and I’m doing the best I can.

The lesson I learned (and continue to learn everyday…)? Balance. I can say I’m sitting about even, feet dangling off the see-saw. I definitely have my up days … and my down days. I have learned, but the actual daily practice of this balancing act is crazy hard.

What about you?

Thanks for stopping by.

Tamiko

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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 2: Of all the things I have lost, I miss my mind the most…

“Of all the things I have lost, I miss my mind the most.“

~Mark Twain

This quote says it all for me. I used to be so much smarter, more articulate… you know, way back when, when my memory was too good (those days when I used to wish I could forget things… man! I want to take those wishes back!) I was able to hold an adult conversation without stumbling over my words, without feeling like a complete idiot for my inability to figure out which word to say next.

I feel like a little bit of my brain goes dark each day never to surface again… I have a great day, but the memory of it doesn’t stick. The jokes and funny things, secrets amongst friends… yeah. That doesn’t work for me. I can’t remember shit and I don’t get jokes because by the time my brain catches up to what was said… the conversation has moved on.

Lord knows. I miss my mind. I miss feeling like a functioning adult. Holding a conversation at any level, with anyONE is stressful. I am afraid I’m going to say something stupid or something that just makes absolutely zero sense. I can fake it, you get good at that. I’m sure many of you would agree, you learn to fake a conversation… fake confidence… fake feeling good. My social anxiety, once manageable is now at an all time high. It’s all so exhausting.

What kills me is there are so many memories I wish I still had the ability to recall. Memories of my children, my husband, family, friends… “Don’t you remember when… ?” welllll, no, I don’t. I’m the best person to confess a secret to, I will not remember it. The problem is when you tell me a secret you want me to remember for future reference… hmmmmm, that is a challenge I don’t succeed at much.

So, what do I do about it? Well, I do my best to appreciate the here and now. I understand that this is my life and I do my best not to waste today worrying or wondering about yesterday. I give myself a break. I make light of it. I laugh at myself when I can’t remember how to use the washing machine, when I can’t figure out how to use a can opener. Life is too short. I appreciate that I can watch a movie more than once and still get surprised.

I have faith. I know that there is a bigger plan for me and I trust that I will follow the path that has been set forth for me. It’s not easy, but without faith, without believing… what’s left? I miss memories, the ability to articulate but each day presents a new opportunity to learn and become a better person. It’s up to me to take the challenge.

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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