Start a Conversation Today!!

Can you believe it’s almost May? Time just continues to zoom by … there are moments when I want to implement some kind of slo-mo magic in my life and then there are the moments where I would love to hit the fast forward. The last few weeks have been terribly painful. When I start to feel like this vice of pain is getting released, another flippin’ flare hits me. Yesterday was particularly fun… every time I took a breath this intense pain just pulsated through the right side of my back. I woke up this morning and it was all gone. Don’t get me wrong, I was very happy that that shit was gone, but seriously… it confuses me when the intensity is so high. I actually start to think something else might be wrong… and then I am reminded when I wake up that it’s just Fibromyalgia.

Almost a month ago I had this really wonderful experience. I was requested to participate in a film focused on invisible and chronic illnesses. The audience for this film is all of us living with the illnesses, but it is also for those people who love and support us everyday. The creators of this documentary, Ron and Tasra, have done a beautiful job portraying our journey in a creative and honest way. The work they are doing is so important. It validates that we are not alone. When I viewed the short video that Ron and Tasra shared to give me an idea of what they are creating, I was at a low point in the day. I was laying down in the midst of yet another flare when I read their email… I clicked on the video expecting to watch a bit and turn it off (I have about a 30 second attention span), but I not only watched the entire five minutes (I know… it sounds crazy even when I write it… as if it was five hours, not five minutes)… anyway, I was hooked. I responded right then. Which, let’s be honest… that’s also not my usual M.O. I am horrible at reading emails and even worse at responding (This is me apologizing right now to those of you I have yet to respond to). A memory was in the making. Ron happened to be coming to my city (coincidence? I like to think of it as a blessing from above) and both my children and my husband were available on the date we agreed (triple blessings!). Unbelievable.

I had no idea what to expect. I was nervous and excited at the same time. Ron arrived, set up and we started talking… and talking… and as we talked I was amazed at what I was hearing from my family. This experience brought us closer and helped us to better understand the impact my illnesses have had on each one of us. At my very worst, my son was in his early teens. I realized how hard that was for him. I missed a lot of important events because I just couldn’t walk. I remembered when he was talking that I lived in my bedroom… in the dark. I was so out of it I could barely function as a person, much less a mom.

I know when I’m in a really bad flare or fallen into the black hole of depression I am hard to live with. My frustration and exhaustion get the better of me and there are times when I just feel like giving up. Those are the times when I just retreat into my bedroom, close the blinds and shut the world out. The times when I miss important events, when I let my family down. Meeting expectations can be hard when I’m feeling slight pain… when I’m at my worst, it’s almost impossible. I realized that during the worst months and years, I had (and continue to have) a very unrealistic expectation that my family knew how bad things were for me. At the same time, I acknowledge that my family had a valid expectation that I would be present for them no matter what. While the kids and my husband answered Ron’s questions, there were moments in the conversation that made me pretty emotional. I felt a loss… I was reminded of how much I wasn’t present (both mentally and physically) over the years… but as hard as it was to hear some of the responses… the emotion I felt the strongest? BLESSED. Blessed that we could all sit down together and be honest. I realized how forgiving they are and how, when my journey was decided, God gave me the best gift in the world… my family. I was reminded how far I have come since the days when I could barely move around and the doctors just thought I was crazy. I believe had we not all had prior commitments that afternoon, we could have talked for hours. It sparked an important conversation for us. So, for me, I am very thankful to Ron and Tasra for initiating the conversation.

 

InvisibleIllnessFilm.com

https://invisibleillnessfilm.com/

I tried to make this image a link to their site… but that didn’t really work out… so don’t try clicking on it… it will only lead to frustration.

Watch the video and if you take away nothing else, sit down with your family and have a conversation. What do they remember about you before the shit hit the fan? How has it affected them? What can you all do to improve your communication? your lives? I admit, I completely blanked on the technical, “What is Fibromyalgia” question Ron asked… like really blanked… but for me it doesn’t even matter. This documentary is not about learning what the illnesses are the individuals have.. it’s about hearing how people are living life regardless of the illnesses… it’s about validation.

Thank you for taking the time to visit my blog today. Have a blessed and pain free day!

Gentle hugz.

Tamiko

Be Blessed… Accepting Your Limitations

Soooooooo…. another doctor’s appointment come and gone and once again I left the office with no answers. Today I went to the audiologist to see if there was any reason why I have this constant high pitch tone flowing through my head 24×7. OF COURSE I waited many, many months before going in… and OF COURSE I left with the same answers I have 90% of the time I go into the doctor’s office… and that is OF COURSE — NO ANSWERS!! Oh wait, I did get one answer… a referral back to my PCP. Woohoo!! Well, let me find the positive in this. I do not have any loss of hearing. And trust me, no sarcasm… I do appreciate that something is working the way it is supposed to! There’s a positive for every negative, right?

What a time in our lives… our daughter is graduating from high school in about six weeks. Damn. SIX WEEKS!! (I have no idea why I am using so many caps, I’m really not trying to yell at you.) I forget how much is involved with these graduations. We are in the process of selecting a college. When I say “we”, I actually mean “she” with a little help from us. She just had her senior prom… she’s planning a senior trip… we are planning her graduation party… senior pictures… college commitment/ housing/ budgeting… CALGONNNNNNNNNNNNNNN take me AWAYYYYYY!!!!!! (only those of you that are on the older side will remember that commercial… here’s a link for your viewing pleasure.)

IMG_4270It’s times like this when I tend to forget I am not physically able to do it all. For every one busy day, I tend to have two days where I’m down. Lately it’s been a lot more down days, than able days. We drove up to Eugene, OR to check out the University of Oregon. An amazing campus. The drive up was very nice, but sitting in the car is not easy for long periods of time. We knew it was going to be tough so we made several stops along the way… we took our time. Accepting my limitations in this instance made all the difference. When we arrived in Eugene, I was doing okay. Whew! The next day, however, was a bit trickier. We had scheduled a tour of the campus for 10:00am. We arrived early so we wouldn’t be stressed out, again planning in advance… what we couldn’t plan for was how fast the walking tour was. This tour guide was very enthusiastic. To make things even more challenging it was very cold outside. So just picture a very brisk walk for 90 minutes in and out of buildings, up and down stairs and in the cold… This is where I tend to not speak up. I don’t want to be a burden or slow a group down so I stayed the course and I made it through. I was really proud that I made it. The rest of that day IMG_9659and the next morning… MAN DOWNNNN!!!! What can I say? I did my best and we actually accomplished everything we wanted to. We just did it in our own time and tried not to stress. We made it home and I was able to rest up for a couple days before going back to work today.

I know there’s a lot coming in the next couple months. I just have to keep reminding myself that it’s okay to ask for help and it’s okay if everything is not 100% perfect. It will be the best we have to offer and as far as everyone is concerned it will still be great! The thing is… it’s not about me. It’s so easy sometimes to just get all engrossed in how crappy I feel, I have to remind myself that it really is NOT about me 99% of the time. It helps to remember that although I am in pain and struggling with depression/anxiety… it could always be worse. Like I could be losing my hearing!

It really has been a rough year. I have struggled with my depression/anxiety a lot this year. For one reason or another, my flares are closer and closer together and they seem to last longer. I know I can do better with taking care of myself, but as you all know, it’s damn frustrating living like this. To have a week without any kind of pain would be amazing. To be able to take time off work for vacation and not be sick… what a concept!

Listen, I realize each day is a challenge living with Fibromyalgia and Depression and Anxiety and Essential Tremor and GERD and ADD and… oh wait, sorry, lost my train of thought. Anyway! I realize every day is a challenge living with all the crap we live with, but we just have to remind ourselves to accept our limitations and remind ourselves of the blessings we have each day.

Which leads me to … I am still journaling every day! I haven’t missed a day without snapping a picture or journaling. There have been a few days where I have just put a picture because I was too sick to do any more than that… but I have kept up the practice of journaling every day! Find something that helps you think about the positive in your life. As I look back through the pictures I have snapped since the first of the year, I can’t help but smile.

Thank you so much for stopping by and please have a blessed day!

Gently hugz…

Tamiko

 

How has Fibromyalgia Affected You?

You know how one singular day can seem really long? Like you are sitting (or standing) at work and you can’t wait for the day to end? Every minute feels like an hour and every hour feels like a day… the struggle to get through the day is so hard that you wonder to yourself, “How many days like this can I possibly endure?”. My days have felt like that a lot since the beginning of the year. It’s crazy how long this stupid flare has gone on. It’s dumb, the word “flare” doesn’t even define what has been going. In the dictionary, the words used to define flare lead one to believe it’s sudden but quick… a bright light used to bring attention. Well, I’m sure all of you are well aware, the attention part is definitely correct. No way you could ignore this shit. Bright light? Not so much. Although I imagine inside my body there’s a bright light at the points where all the pain hits in my muscles and nerves. I must look like a Christmas tree inside… before Santa drops off all the wonderful gifts. Sudden but quick? Not in the least. My mom asked me the other day about being in remission. I never thought about that word, I’ve only associated that with cancer. Again, the words in the dictionary used to define that word are, “a period of time during a serious illness when the patient’s health improves“. It is fitting, but it would feel strange to use it. Although, right now I’d be ecstatic to apply that definition to myself!

Yesterday my husband and I shared our 21st wedding anniversary together… our 29th year together. A year ago, on our 20th wedding anniversary we celebrated it in the hospital. That was the day I had surgery. One I hope never to have again. But it makes me think. Time seems to go by so slow most days, while a year ago seems like only yesterday. Time is a funny thing, in one moment it can feel like it will never pass while only a moment later it feels like it’s going at warp speed. It reminds me that I need to do a much better job of living in the moment. Not worry about later today or tomorrow or ten years from now. Make the most of right now.
Our anniversary celebration didn’t go at all like we planned. We were going to go watch the sunset on the coast, enjoy some good food and maybe go for a walk along the beach. Sounds wonderful. Afternoons and evenings are the hardest for me so although I felt pretty good in the morning, by afternoon I could barely walk. So we ate in and watched TV. When I apologized to my husband later in the evening, he was not very happy with me. He constantly reminds me that what I am going through is not forever, it’s just a moment in time. We’ve had decades together and so many wonderful memories… he knows that this too shall pass and we will again be walking along the beach. I am so blessed to have this man in my life.

Which leads me to another topic. I was asked recently to contribute to a medical magazine (the kind you see while waiting at the doctor’s office) and one of the questions I was asked is how Fibromyalgia has affected me… as you can imagine, I am definitely most affected by my lack of independence. I rely on my husband for everything. He’s amazing. He takes care of everything… he cooks all the meals, keeps the house clean, makes sure the kids have everything they need and he makes sure I enjoy life. He makes me laugh every day and he supports all my trial and errors in the hopes something will ease the pain. He’s amazing. I have a lot of respect for those of you that are on your own or in a relationship where you don’t have the support you need. One of my biggest worries is what I would do if I were on my own… but right now… in this moment… I just don’t have the energy to figure that out and more important I just said two paragraphs ago I need to make the most of right now. Damn… bad habits are hard to break!

I woke up this morning feeling so blessed. I say this a lot, but I don’t think it’s possible to say it too much. Keep the folks around you that love and support you. Get rid of any negativity. It’s hard enough without having people bring you down or bring drama into your life. I believe what keeps me going is that I know, no matter what, I am loved. I have hit the lowest lows in the past few months, I have questioned my reason to live when it feels like every day is so hard… I have gone into that dark place. When I hit rock bottom I find so many reasons to end the pain… but I only need one reason to keep going. Love. That’s when I see the light shining through the darkness. Don’t let the pain and frustration take away all the moments of love and laughter you will have in your future. It’s there… it may seem out of reach at times but sometimes it’s right in front of you and all you need to do is look up.

I wish you a pain-free day and a day I hope is filled with love and laughter!

Tamiko

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!! :)

Day 30: My Word Tree…

Today’s Prompt: Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests.

Today is the last day of the WEGO Health Activist Writer’s Month Challenge. I did it! As the final post, I have created this tree in answer to the prompt… enjoy!

Day 13: 10 Things I Can’t Live Without

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!

I like this prompt, it makes me realize how blessed I really am. I have all of this in my life today and as long as I have God in my life, anything is possible. What a great way to start the day! Imagine a life without Tivo or my laptop or the internet … it actually seems kinda nice.

God

My family

My friends

Laughter

Freedom

Books

Music

The beach

Blue Skies

70 degree weather

Day 9: Keep Calm and Carry On Challenge

Here’s my version of the original. That’s it for today! Enjoy!

Make your own poster at http://www.keepcalm-o-matic.co.uk/