50… wow. I can’t believe that I am 50. I can’t believe how quickly the last 50 years have gone by. Damn! I have to make my life better. I realized lately that I spend a lot of time living for another day or another moment. On Sunday, my mind is stressing about having to start work Monday morning. During the week… “Lord have mercy, when will this week be over.”. On Thursday, I’m thinking… “Just one moreday…”. There’s a lot of, “I can’t wait until… XYZ“. When that moment or day arrives, my mind has already moved on. I really envy people who can just live for the moment. I want to train my brain to enjoy the now. In order to do that I have to somehow shut my brain off. It’s constantly processing… whether it’s curiosity about something going on 5 feet from me or thinking about a project at work or what will I do when I retire or what are my kids doing right now or what should I eat… I mean seriously. I could have kept typing until my fingers got numb because my mind started going 100 mph just thinking about what I think about!! Oh man, you have really entered into my world… Danger! Danger! Warning! Get out as fast as you can!! Once you enter this crazy ass place, I’m not sure if there’s a way out. At least I haven’t found a way out yet.
I keep looking at myself and thinking, when am I going to grow up? I have so much growing to do mentally… although I am pretty confident I way overachieved on the growing physically so maybe that’s why my mental side is so far behind. I used to be so independent and able. With all this medical bullshit, I have lost my way. The last few months have been really hard for me. Sidebar, how many times do I say that? I feel like I say that all the time… “The last few months have been really hard for me.” It’s as if I want to believe that it really has only been the last few months, when in fact it’s been so flippin’ long I can’t remember what feeling good feels like. If you ask me how I’m doing, I will give you the standard, “I’m good” or “I’m alright” or “I’m fine”. I’m not. I’m not any of those things, I’m feeling like shit… a lot… end of sidebar. Anyway, I have not only lost my way in general, I also got completely caught up with that sidebar. (I did warn you in the first paragraph that my brain was a scary place.)
Well… maybe I should start taking my own advice. OUCH! Damn! That really hurts to say that. I mean, I’m great at giving advice, but taking it? Crazy talk. I recently advised my daughter what she should do to sleep better. On another day I advised her on keeping a food journal so she can get a picture of what she’s putting into her body. I am always telling her what she should do when she’s stressed or angry… do I do any of those things? Welllllllll, I definitely do some of them, but for the most part… Not really. It’s hard! It’s really hard to make healthy choices. This is a typical conversation I have with myself…
Smart brain: “You should exercise today.“
Emotional Me: “Hmmmmmm, I am in a lot of pain, I’m thinking maybe later… how about some coffee?“
Smart brain: “Caffeine is not good for you and that shit you put in it to make it taste good is really not good for you.” (although the word good shows up a lot in that sentence, we all know there’s nothing good about this train of thought)
Emotional Me: “Just this once… last time, seriously, this will be the last time. I really want to be healthy” (followed by a cup of coffee and a carb)
A couple of hours later…Emotional Me, “I’m hungry.” (followed by me standing in front of the open refrigerator or cupboard)
Smart brain: “You should eat something healthy… and before you pick something to eat… take a moment to answer this question, are you hungry or are you bored?“
Emotional Me: “Screw you, I deserve to eat whatever I want.”
It’s basically all downhill from there. Sentences that start with “I deserve… ” come up a lot in my mind when it comes to food. Well, trust me, I have “DESERVED” (she says with a very sarcastic tone) a whole lot because as I said earlier, I way overachieved on the physical side of growing up! I need to come up with a better reward system in my mind. (Preferably one that doesn’t involve spending money or else I just open myself up to a different problem!)
I am a pre-diabetic 50-year-old woman with Fibromyalgia, Depression, ADD, Essential Tremor, GERD, Anxiety, IBS… shit I’m stopping there, that’s enough disclosure for one blog post. Why was I saying that? Oh yeah, I said all that because with all that going on, if today is not a good day to start getting healthy, what will it take? Do I really want to go to the doctor and be told I am diabetic? No.. no I don’t. I definitely don’t want to hear that come out of my doctor’s mouth. I think I have heard her say enough already.
Today… right now, this very moment. This needs to be the moment I start taking better care of myself. I have a goal of 5,000 steps a day. (Don’t judge, I barely hit that once a week.) How about if I challenge myself to hit that 3 x a week? It’s not much, but it’s a good start. I actually went the entire month of April without any desserts/ sweets… then May hit and let’s just say, I didn’t just fall off the wagon, I think I fell off and have been getting dragged behind it for weeks. I’m telling you… as I write this, right this second, my emotional side has already started the fight. It’s telling me to go cut a slice of that chocolate cake in the fridge and eat it… it’s basically screaming at me to go do it. Bitch. Why do I have chocolate cake in my fridge you say? Because the other night I craved it so bad, my husband went out and surprised me with it. I will overcome that stupid Emotional Me and make better choices. I should not let my emotions influence my decisions. It never ends well when I do that.
I will choose to eat healthier. I will choose to move more during the day. I will choose to live in the moment and not worry about tomorrow. I will have faith that tomorrow will work itself out. I’m not in control of it anyway. I will think positive thoughts. I will meditate to calm my brain. I will believe in myself. I will be healthy. I have to believe that with hard work the outcome will be less pain, less depression, less digestive issues.
My moment starts right now. I can do this. And now that I’ve said it out loud (or written it for all to see), I hope I can come back with some results in a future post.
Before I go, I want to say a huge thanks to Healthline for including me in the Best Fibromyalgia Blogs of the Year for the 6th year in a row!! It’s an amazing honor to receive this recognition. Take a moment to go check out the other blogs on the list.
Thank you so much for stopping by today. I wish you a pain-free day and feel free to join me in this quest for better health.
PS. My girlfriend gave me a beautiful bouquet of flowers for my birthday. In the bouquet were these ginormous peonies. When these flowers start to open up and bloom, you really have to pay attention because it all happens in a day or two and once the flower opens up, the period of time to enjoy it is very short. This is what I mean by living in the moment. I put the bouquet right next to my desk so I could enjoy the beauty of these amazing flowers. Now you can enjoy them too!
Ten years ago, when I was just a youngster… ummmmmmm RIGHT! Well, let’s just say I was younger than I am today. I strongly believed that aging was no big deal. I couldn’t understand why people dreaded getting older, this never-ending search for the fountain of youth. Today… I understand. As I get older, the days are not necessarily getting brighter or lighter or easier or more relaxing or… geez, I’m depressing myself.
Let me help you understand what I am feeling, I’m sure it’s not that foreign to many of you. Over the course of the last decade I have lost family, friends, and bits of myself. My fear that I will lose more family and friends is greater now than ever before. I also fear losing myself. To clarify, losing my ability to do things on my own (not that I do that much on my own these days), but seriously… physically taking care of myself, my sanity, the everyday things that a lot of people take for granted. It’s pretty frightening.
I look back a year ago when I was walking miles daily and then I look at today when I can barely walk to the car. There is a reason for the change… let’s just say that I have been diagnosed with yet another flipping irreversible condition. Cervical Spinal Stenosis. Yes ladies and gentlemen, it’s true, the hits keep coming! I have had two MRI’s in the past few weeks, 3 appointments with a Neurologist and the “what’s next?” question is heavy in the air in my house. Let me just say… a few weeks ago, I did not start my day saying… “I’m going to go in to ask my doctor, YET AGAIN, about the constant pain in my neck or the fact that I’m super weak.” We all know what happens when we do that… the “You have Fibromyalgia” card gets pulled out. I made an appointment with my primary care physician to check my tremor. It’s really been bothering me so I decided to re-confirm the diagnosis and look into treatment. I was quickly referred to the neurologist.
My appointment with the neurologist was one of the best appointments I have had in a long time. We started talking about my tremor and ended up going off into a completely different direction. This doctor spent an hour with me. An hour. That is almost unbelievable to me… and she’s a specialist doctor! I believe that she understood right away that I walked into her office as an informed patient. I knew what medications addressed Essential Tremor and I knew which ones I was willing to try and which ones I wasn’t (based on interactions with what I am already taking). As soon as she started to take a look at me, she did a bunch of strength tests on my arms, wrists, legs, ankles… had me stand up… asked me a ton of questions and did all the tests over again. That’s when she said she wanted me to go in for an MRI. She had read my medical history and noticed I had been diagnosed with Degenerative Disc Disease years ago and wanted to see what my spine looked like today. She wasn’t questioning my Fibromyalgia diagnosis but she felt like something else was going on to cause the weakness in my limbs.
To cut this story short… I went back, she showed me my MRI results and it’s not a great picture. That’s when she asked me to go back for another MRI, which by the way, have I told you how claustrophobic I am? Lord have mercy… I came out of the first one a complete wreck. Barely made it out of the room, walked halfway down the hall with my husband before the tears started rolling. The pain of laying on that damn MRI bed while it vibrated for 30 minutes… and let’s not even talk about the sounds or the fact that I was in a tight space (and I was in the large machine). Anywayyyyyy…. I fully prepared for the second one. I prayed for a full hour before we left the house. I took a little more than the prescribed dose of Ativan to help me relax, closed my eyes and prayed for the hour. You heard me… the HOUR I was in the machine this time. When it was all said and done, God was with me all the way and I made it through much better this time.
Anxious for my results, I had a call with the neurologist late Friday afternoon and she confirmed that the Degenerative Disc Disease has moved down the rest of my spine. That’s not surprising considering the constant pain. Given that diagnosis, I wasn’t so concerned, I’ve been living with this pain for so long. What I wasn’t really prepared for was her recommendation that I get surgery in my neck to address the Cervical Spinal Stenosis (which she said is also a form of arthritis, also known as bulging discs). I had done a lot of reading and I knew this was one of the potential outcomes. I just refused to go there in my mind. Well, as always “denial” never lets me get away with shit. I’m not saying I am having surgery, but I will keep an open mind. I’ll take surgery over paralysis any day. With the level of pain, weakness and numbness in my hands and feet… this is something I can’t ignore.
Next steps… well, I’m off to my next set of specialists. One to address the tremor, as now addressing it is important since the constant shaking (or in my case I do my best not to shake… I’m happy I can still use muscles to reduce the shaking so it’s not so visible… which leads to increased pain… don’t you love this vicious cycle!). The second referral is to the spine clinic where we will talk about whether or not surgery is the right option.
And… guess what’s decided to come back right now? Insomnia. THANK YOU! I mean… seriously? Is this absolutely necessary right now? (Pause for a moment) Of course it is! Anxiety, stress, nerves… this is what happens. This I should have control over. I am doing my best to give all this over to God, but … well, but nothing, I have no excuse, it’s a struggle.
So. My conclusion is aging is a b*tch. I was so blissfully ignorant all those years ago when I thought people were crazy to complain about getting older. And… it’s not that I want to relive any of those prior years. I’m all about going forward, it’s just I’d like to go forward with everyone I love in great health and with me forever. I’d like to age gracefully… not feel like my body is breaking down bit by bit.
And on that note… I think I’ll go attempt to sleep. Thank you so much for stopping by. I realize this wasn’t the most uplifting post… I hope with my next post I’ll have some better news to share. Remember tomorrow is not promised so make the most out of today. Spend time with your loved ones, laugh and remember what’s important in your life and make it a priority.
Wow… even though it’s not unusual for me to go a long time in between blog postings, I have to say, I’m always a bit disappointed in myself for being so out of touch. The last three to four months have been challenging, tough, crazy, emotional… and so on and so on and so on! Just another day in the life, right? I know that I’m not the only one who goes through these ups and downs in life. I firmly believe that those people who are just always going through life without any struggle at all… well, for one they are the exception and for two (is that really how you say this grammatically?), for two… they aren’t human. Everyone has to have some amount of struggle in their life, some people are just wayyyyyyyyyyyyyyyyyyyy better at handling it than I. I get it. I’m my worst enemy. Well, me and my medical crap. No excuses! (Me yelling at myself)
So we are approaching the end of 2013. My annual family project to create a scrapbook page reflecting my most memorable moments from this year plus goals for the upcoming year is just days away. My husband helped me to start thinking about my most memorable moments and I thought to myself… why not blog about it! So… here we go!
Experiencing life as a freshman in high school through my daughter’s eyes
Watching my son mature into an incredibly amazing adult
and…. this is a good one… being published for the first time!
I was contacted back in August to submit content for a collection of stories for a book about living with Fibromyalgia. I didn’t think that my submission would actually get published, I figured with everyone out there that had something to share… pick me? No. I was completely surprised when I was told that my story was going to go in the book and even more surprised to see that we all received author credits on the front of the book! How cool and exciting is this?? I can’t believe it’s taken me this long to write something about this in my blog. I’m excited to share with all of you my first entry into being published!
Well folks… I’m exhausted and ready to go get in my bed and attempt to get this essential tremor under control and my body into somewhat of a relaxed state.. I do appreciate all of you out there more than words can express. Your support over the years has allowed me to share my life experiences in an honest and open way, without judgement.
I wish you all the very best for 2014… and hopefully we’ll see some wins in the medical field that will help all of us lead less painful lives.
Stay cool! Gentle hugz.
My contribution to the book…
My Foggy Brain… My Journey… My Life
By Tamiko Arbuckle
When you wake up in the morning, what is the first thing that comes to mind? For me, it’s… “What hurts? Can I move? Will I be able to get out of bed? Is my brain functioning?” After that, I lay there for a while slowly moving from my toes to my forehead to assess my pain level and mentally prepare myself for the day to come. It wasn’t always like this…
Let me introduce myself. My name is Tamiko and I live with Fibromyalgia, Major Depression, Anxiety, ADD, Essential Tremor, and honestly? I could go on, but I am not here to tell you about all my medical issues. I was asked to contribute to this book and share my story… my journey with Fibromyalgia. So! Sit back, relax and hopefully while you read my story; you will smile and even possibly laugh a little bit. My life is here for your reading entertainment (and it’s possibly the only time I will ever hope someone laughs at me!).
My own personal disclaimer… I’m sure like many of you reading this, your ability to remember things is not as good as you’d like it to be. Half the time I don’t know if it is an actual memory I experienced or a memory from a dream I had at one point. That is probably the most frustrating feeling for me… The number of times someone says to me, “remember when… ?” or when I am sharing an experience I had (or think I had) and half way through the story my mind just draws a blank. I say all this because I am about to tell you my story. It’s what I remember and Lord knows my memory fails me on a daily basis!
When I look back over the last four decades (honestly, has it really been that long?), I think of the different phases I have lived through… my childhood (mostly amazing until my angst-filled teen years), my 20’s and 30’s (marriage, children, fish, dog, buying our first house, cars etc. not necessarily in that order), my pre-FMS crazy working years and now to my post-FMS diagnosis years. No doubt about it, it’s been one heck of a roller coaster ride over the decades! I don’t believe people that end up with a diagnosis like Fibromyalgia have lived a relaxed, trouble-free life. I believe you have to work really hard to break your body and end up in this kind of pain!
Growing up, I was a feisty, rebellious child who questioned and challenged everything (and I mean everything! Rules? What rules?). Now that I have had the privilege of being a parent, I feel like I should start and end every day with a five-minute call to my folks apologizing to them for all the heartache I caused over the years. It would go something like this:
…ring… ring… ring
My dad (because my mom basically never answers the phone): “hello?”
Me: “Hi dad!”
My dad: (laughing… he always laughs when he hears it’s me on the phone, it makes me smile every time) “Hey! Is that the mother of my grand-children?”
Me: “I’m calling to apologize again for driving you to the brink of insanity during my young adult life. I know I caused you to worry excessively. Thank you for not giving up on me!”
My dad: “CHIZUKO!!! Your daughter is on the phone again…”(Now I hear my folks bickering as my dad hangs up and my mom picks up.)
My mom: “hello? Who is this?”
Me: “Mom… it’s me.”
My mom: “huh? I can’t hear you, who is this!”
Me: “Mom… it’s me! I was just calling again to apologize…”
My mom: (cutting me off) “Oh my God! Don’t be silly!” (I am editing what she’d actually say so you don’t think badly of this wonderful woman I call my mom).
Me: “Okay mom, tell dad I love him… I love you and I’ll talk to you again in the morning!”
From a toddler until the day I moved out I gave my parents hell. I thank the Lord every day for blessing me with parents who loved me unconditionally and had endless amounts of patience and forgiveness.
As a child, I strived for independence at a young age. I loved school until I moved in the middle of 9th grade. Itransferred from a very small junior high in Oregon where I had finally reached the top of the class to a pretty big high school in Palo Alto, CA where I was once again at the bottom. I found myself in a new school where I knew no one, in one of the wealthiest cities in the area… hundreds of miles from all my friends. Let’s just say my rebelliousness reached an all time high. I couldn’t, or better said… I didn’t know how to handle the changes. At 15, after realizing I wasn’t going to succeed in regular school, I started independent studies and got a job. I graduated early and started working full-time.
The feeling of working, setting goals, meeting deadlines and ultimately advancing in my career became very important to me. I was learning what it meant to be responsible and the feeling of accountability for my every day activities… and at the end of the day, the pride I felt in my results drove me to want to work harder.
At a certain point, it wasn’t the advancement I was looking for but the feeling of accomplishment and value that I added to the organization. As I continued to work harder and harder and take on more and more responsibility, my hours significantly increased along with my stress. At the height of all this, I was working 16+ hours a day (at least 6 days a week), eating all my meals in the office and getting very little sleep. When my children were born, I worked up until I went into labor and went back to work just weeks after they were born. For close to two decades, my work life completely consumed my time and energy. My personal life was non-existent or completely out-of-control. My ability to balance my work and home life was a constant challenge…I felt like a success at work and a failure at home.
And then one tragedy hit after another… first a very close friend of mine was killed in an accident, then my grandmother passed away, followed by my aunt and then my uncle and then my godmother and then an aunt… and it just kept going. The sadness was overwhelming and my ability to recover became more and more difficult. We were traveling to hospitals and funerals and with the amount of hours I had been working, keeping up with everything just became too much.
One day, while playing with my dog Tani outside I felt my back go out. It was at that point my body made a decision it was no longer going to support my lifestyle. Either I make a change willingly or it was going to force a change. I bet you can guess what happened.
I ended up on the couch, where I remained for weeks unable to move. Days passed without me knowing what was going on. I was on so much pain medication that the house could have burned down and I would have slept through it (or not even realized I was about to go up in smoke!). My family still remembers the days when they would laugh at me because I appeared so high (Ummmm… I can’t really sugar coat that, I was actually pretty high!). Apparently conversations with me at that time were rather amusing. I just have to believe them… I remember… well, I remember absolutely none of those conversations. This is where my journey with medication and doctors began.
I was in and out of the doctor’s office for four years before I was finally diagnosed with Fibromyalgia. The only solution I kept hearing for four years was a prescription of pain pills. When one stopped working I would move to the next one. With all the medical research and advances that have been made, not one of those doctor appointments ended with anything other than a lot of frustration and a new prescription. Each prescription had side effects that impacted my ability to get back to a normal way of life. It may have numbed the pain, but it also numbed my brain (did you catch that rhyme I just did?). So even though I was no longer working those crazy hours at work, I was still not available for my family. Not because of my job, but because I was in this drug induced state every day and night.
The first diagnosis I received was Degenerative Disc disease. It was good to get a name for the pain I was experiencing, but it just didn’t explain everything that was going on. The meds that were prescribed were horrible, I remember one of them gave me blurry vision (that was fun thinking I was going blind).
I was not just experiencing back pain though. I was having a really hard time remembering things… like driving in the car and forgetting where I was or where I was going… or how about losing everything (over and over again!)… how to do basic every day stuff… and worst of all… at work, where I had excelled my entire career, I was suffering. It was taking me ten times longer to accomplish what I would do without any thought. My pain was no longer just in my back it was moving all over the place. I was having a hard time walking. I couldn’t be touched; I felt like my whole body was one exposed nerve… and let’s just talk about my inability to sleep. Sleep was my enemy at night… and the more frustrated I got, the harder it became. My neighbor friend still talks about it… no matter what time he came home at night or left in the morning, the light was always on at my house and I was up. On the flip side of that… Even though I couldn’t sleep, I was exhausted. ALL of the time. No energy for anyone or anything.
I felt like I was crazy. My depression was just getting worse and worse and my anxiety was at an all-time high. I would keep going to the doctor for one reason or another and each time my doctor would look at me with that look. You know what I’m talking about… the “look”. The one that says, “I am really trying to help you, but nothing is wrong with you so I’m going to try my best to be empathetic and prescribe something to make you go away.” That look. More drugs. I left many doctor appointments holding on to my emotions by a thread until I got to my car. Once I shut that car door… the emotional floodgates opened up and I was a wreck. Some of those appointments I wasn’t able to keep it together, I just lost it in front of the doctor, my frustration getting the best (or worst) of me. Those are the moments I cherished… my doctor looking at me as if she was deciding whether or not she needed to call in a psychiatrist for support. Me feeling completely hopeless and wondering whether or not something is wrong with me… like is this stuff real or is it all in my head? No one wants to feel like a basket case… especially those of us who were raised and grew up as strong, independent women! I mean I can literally count on one (maybe one and a half) hands the number of times I actually saw my mother cry.
So one day, I was really feeling like crap and I pushed myself to, once again, make an appointment. My doctor was out so I saw a different doctor who then referred me to the Rheumatology department. In a twenty-minute appointment my life changed. The doctor diagnosed me with Fibromyalgia… just like that. He had never seen me before. He asked me several questions, that I’m sure if you are reading this, you are familiar with. How long had I been in pain? Where was the pain? Followed by him asking me to stand up while he proceeded to push all the “tender points” in my body until I was literally crying my eyes out and couldn’t hold myself up any longer. I was a winner… I felt pain in every tender point. Twenty minutes later he says to me, “You have Fibromyalgia.” I mean, he literally said it to me like he was diagnosing me with a cold. He really didn’t understand the magnitude with which this message came to me. To him it was no big deal. To me it was as if he told me I won the lottery… only without the jumping up and down, and of course there was no money at the end of that winning ticket!
I finally had a name… Fibromyalgia. Fi-bro-my-al-gia. What?
At first I thought my prayers were answered. That bubble was burst real soon! I realized very quickly, even with a diagnosis, there was no cure… no solution. I started reading everything I could get my hands on. At that point, there wasn’t a ton of information out there. I read book after book and then while doing research online, I discovered all these blogs. I was not alone. There were other people out there who had gone through the same thing as me. Except after reading through a lot of the blogs, I felt worse. Everyone was sharing all their feelings around the pain, frustration and a wholelot of hopelessness. I really started to think my life was over.
I was in a dark place. Literally. I kept the blinds drawn in my bedroom and I stayed in that dark room for many days and weeks. I remember I couldn’t walk, I couldn’t shower myself, I couldn’t do anything on my own. I would try and sit down for dinner with my family and half way down the hallway to the dinner table I would just break down in tears. The pain was unbearable.My husband would turn me around and help me back in bed. I missed the soccer games, the school and family activities, the parenting. I was no longer living in the real world. I was in some alternate universe where all I saw was the four walls in my room, a ton of TV and, I played a lot of Facebook games (Farmville anyone?).
I needed an outlet. I needed a way to get rid of all the crap in my head and the emotions I was feeling. I decided to start my own blog, just for myself. I didn’t share it with anyone I knew. I didn’t want people close to me to read stuff that was so painfully personal to me. I just started writing. At the same time, I joined the Twitter world. I found this amazing community of people, men and women, young and old, from Sweden to the UK to Canada to all the states in the U.S… this stuff is not picky, it will attack anyone… at any time. I started to tweet and share my thoughts, my pain and bits and pieces of my life. I shared information that I thought would help people. I started to share my blog. I found my voice and I found a community that understood and supported me.
This was my turning point. I realized I was not alone, and more importantly I realized that there was life with Fibromyalgia. I got more aggressive with my doctors and I was finally admitted into the pain programs at Kaiser. I started to learn how to cope and manage my pain.
I have been asked a lot over the years how I cope with chronic pain (physical and mental)… I have many answers to that question. Laughter… laughter is a huge way to kill the evils of pain. Getting out and spending time with my family and friends, the folks that have been there for me through this long journey. They may not truly understand what it’s like to live with all the stuff I struggle with, but they certainly have been there to make me laugh. I have learned I don’t always have to leave my house to “get out”. Sometimes just getting out of bed and out of my bedroom is enough. That’s the thing… the people that I surround myself with understand my limitations. It’s important to keep positive, uplifting folks around you… especially if they make you laugh!
Exercise… we all hate it. If we haven’t done it in a long time, it’s painful to start. For me, it’s the difference between flaring 24/7 and flaring a few days here and there. I believe it is the gentle movement that wakes your body up. It’s a time when you are in control and you are telling the pain to go away (or you can use more harsh words than “go away”, if you’d like… I do). The key for me is “gentle” movement. Yoga, Tai Chi, Qigong, Feldenkreis, stretching and walking are the types of exercise I have tried and have helped me. I have even completed a couple 5K’s (walking, of course, let’s not get too crazy here)!!For me, my depression and anxiety are as bad as my Fibromyalgia; even worse now that I have learned how to manage my pain better… exercise is key to better mental health for me.
Eating the right foods… I struggle with this every day. Food makes a huge difference for me, not only because of the pain, but I also suffer from IBS and GERD. If one thing is exacerbated than the pain jumps right in there to make sure it gets its proper attention. I have to stay away from the food that triggers a bad reaction in my body… basically I have had to learn to live without a lot of really yummy food. If I stray even a little, I suffer. It is the true definition of consequences (Darn those consequences!!).
There is always that balance that has to be kept between pain management, digestive health, and mental health… the worst of all three come out to play when there’s stress. So keeping my stress down is critical. Meditation, prayer, and a lot of lessons I learned from cognitive behavioral therapy help keep me sane. Well, most of the time anyway. No one’s perfect. If you believe you have to be perfect, stress will be your best friend forever.
There was a time when I went 6 months without driving. Actually there was a period of years where I didn’t drive… except maybe down the street when absolutely necessary. There was a long period of time when I walked with a cane… a very long time. There was also a time when I used a wheelchair. I wasn’t able to shower without my husband washing my hair and helping me bathe myself. I couldn’t go up and down stairs. I couldn’t ride in the car for long periods of time. I call this my “dependent” period.
During that “dependent” period, I was on so many prescription pills that I had to keep getting bigger and bigger pillboxes. I had to get one that I could separate my morning, afternoon and evening pills. One day I decided to just stop the madness. I never liked taking pills and I felt like the side effects were far worse than the benefit. When I finally made the decision to stop the meds I had been suicidal for months. Every day all I thought about was if I was dead, there would be no more pain, no more suffering, no more sadness… and no more burden on those around me. I played the scenarios out in my head, what it would look like with me gone. My family moving on with their lives without me… I could no longer see beyond the black and grey clouds that constantly enveloped me. I was desperate. I finally looked at my husband one night, while in tears (again) and we decided together that it was time to do something drastic. I called my doctor and we agreed on a plan to taper off everything. The best decision I would ever make.
It has been almost two years now and I will never (at least I hope I never) rely on medication to manage my pain long-term again. I ended up going back on anti-depressants… I am not sure I can ever live without them… and every once in awhile I will take something to help the pain and I am okay with this.
I am still dependent on my husband, he’s my rock, my best friend and at times he is still my caretaker. Thankfully, I am not in that “dependent” period anymore. I am driving. I am finishing 5K’s, I am more self-sufficient, I am a healthier person overall. I am living.
Every day is not a good day. There will always be bad days. I know it’s my choice how I fight back and whether or not I fight to live a healthy and happy life. I am blessed that I don’t have anything life-threatening. What I have is a reminder… a reminder that if I want to feel alive, I need to choose a lifestyle that brings me joy and gives me the freedom to live well. I know I need to make choices that will result in less pain. The pain never goes away, but it doesn’t have to be debilitating every minute and every hour of every day.
I have had my blog for almost four years now. I focused my blog around hope and how to live with Fibromyalgia, with Major Depression, with ADD… and a whole host of other things that keep joining the party of diseases and syndromes that seem to enjoy being hosted by my body. The last diagnosis being Essential Tremor… that’s a fun one! I go back and forth on whether or not to continue with my blog… for me, it has served its purpose. It saved me when I thought no one understood what I was going through. It lifted my spirits when people left comments telling me they felt the same way and thanked me for sharing… it helped my family and friends better understand my pain and how to respond to my changed life. When I think about taking my blog down, my husband is the first one to say “NO!”. He reminds me that no matter how I am feeling today, people still visit it for information, and to see that there is someone out there who understands. So, for now, it’s there. And it’s the reason why I was given this opportunity to share my journey with you.
It’s finally ready!!! I have been working on this Wellness Workbook for a while now. To be honest, I created it over a year ago and I am just now finalizing the document and sharing with all of you. Like many of you, I have tried many different medications, diets and I’ll call them “gimmicks” to alleviate my pain. At the end of the day, what works is what most of us already know… diet, exercise and most important (in my mind)… the ability to relax and manage our stress.
I originally created the templates in this workbook for myself as a way to document my goals for better health and, as important, hold myself accountable to working towards achieving those goals. I pulled it together from all the various books and materials I have read over the course of the years, various classes I have taken, and my personal experiences.
Included in the workbook:
Wellness Wheel: tool used to help you discover opportunities for an improved quality of life and create goals based on those areas.
Wellness Plan: worksheet for documenting your short and long-‐term health goals and listing up to four key goals in the areas that you want to work on that will help you achieve your overall short and long-‐ term goals.
Flare Plan: worksheet for documenting the tools that help you, both physically and mentally, when you are in a flare. It helps to document these so you can just flip to this page and use the tools that you know will help you.
Exercise Quick Reference Sheet: there are countless exercises you can do to help with your pain, these are just some of the stretches and strengthening exercises I use on a daily basis.
Reference Information: information to help you better understand how to use the daily worksheets.
Daily Wellness Journal: worksheet for you to document each day; your exercise, food, pain level and how you addressed your pain, gratefulness and memorable moments.
My Priorities for Today…: worksheet to document your personal and work priorities on a daily basis.
Automatic Thoughts Worksheet: template to help you manage your stress and negative thoughts.
I hope that it helps you as much as it has me. Please feel free to share with whoever you feel might benefit from this type of resource, I would just appreciate if you would send them to my blog to pull down the latest version. You can either click on the image above or go to my Tools & Resources page to download the workbook.
I would also love to get your feedback so I can continue to make improvements. You all know best what it takes to manage your health and I love to hear new and creative ways to have better days.
How many posts do you start and stop before you get to the one that you feel is okay to publish? Having a blog is like writing in your diary… except I left my diary open on a table… in a restaurant… and people are walking by, picking it up and reading it. It’s scary and strange and cool all at the same time. It’s very cool to know that my feelings and experiences are interesting or helpful to others. It’s also difficult. Difficult because I always want to be real, true, honest… and it’s not always easy to be those things.
Like today, for instance… I started and stopped a separate post because, in all honesty, it was bringing me down just to write it. Lord only knows how someone would feel reading it! I don’t feel it’s fair to share stuff that is just depressing. I have depression… I don’t want to make it worse for anyone else. Then I wonder if I am doing a disservice to myself to set that post aside if that’s how I really feel. So here I am. I decided to take a different perspective on how I feel to see if that works better.
I have had a pretty up and down time for a while. Physically I still flare, I know this is not going to every go away completely. Life with Fibromyalgia. This Essential Tremor shit is uncool. I mean seriously, what the f*ck? Anxious? Nervous? Worried? Angry? Frustrated? Stressed? Basically ANYTHING that is not calm or relaxed and my head just nods and my hands shake… I have to use my muscles to make it stop. I don’t want to make anyone uncomfortable or even myself, for that matter. Sometimes I don’t notice it, but that’s pretty rare. I would just prefer noone else notice it… My anxiety? Well, through the roof these days. I keep telling myself… “Give it to God“, but my anxiety keeps telling me “ummmmm, NO!”. (I’d say “Hell NO!”, it just seems wrong in the same sentence as “Give it to God”. Oh wait, I said it anyway.) That battle between me and my anxiety goes on for at least an hour or two throughout every single day. ADD? Yes it’s there, but on average I seem to be managing this okay… and let’s not forget the ever-present black hole… the opening to enter is not big enough for me to fit in at the moment, so I won’t give it much real estate other than to say, fighting Depression is also a daily battle.
Oh! Did I tell you I started the big M? Menopause. No period? No complaints from me! I have discovered a miracle cream though. It seems to help with my mood, maybe a little with the migraines, feels like it’s helping my energy. It doesn’t seem to be a coincidence that I started walking around the same time this cream and I became besties. I don’t like promoting products, but this one has really been one of the few things that I know really helps me. [Pro-Gest Natural Progesterone Cream Paraben Free 2 Oz From Emerita] I don’t want to debate the pros and cons of this specific product, just that if you are experiencing any of the symptoms of menopause, you may want to consider trying a progesterone cream.
I am not sure why I have been afflicted with all these illnesses. I still hope to wake up one day and not have any of this. Hope… Dream… Believe… it does keep me going. We all need to hope, dream, believe about something!
Here’s the main thing. We all wake up (well we certainly hope we will wake up), and some of us struggle to get out of bed, some of us struggle to walk, some of us struggle with the fog that encases our brain… unfortunately some of us struggle with all three of those things and more… but we all start the day with the option to have hope that today will be a good day, to dream that tomorrow will be better, to BELIEVE that we can manage our pain so we can live our lives. If we choose to start the day any other way, we make it so much harder for ourselves. We have to be our own cheerleaders in life. It’s so much better to live rather than just get through another day. It is not easy, but it’s soooo worth it!
Fight those demons, the anxiety monster, the black hole of depression, the little voice whispering in your ear that your pain is too much and you can’t do anything… you can always do something. Be proud of the fact you are able to get out of bed today, that you are able to get dressed … small successes are so much better than feeling like a failure. Kick the ass of this negative shit in your life and empower yourself to be strong.
Noone can take away how special you are or how damn strong you are to deal with this shit every day. Don’t let anyone take away your power.
I admit, I got a little riled up there for a minute, but sometimes we all need a little kick in the ass to remind us that we are special… God chose us to share with those who are suffering that people with pain can and do live a good life. Now go have a great day and live your life!
Well hello there… how have you been? I can’t believe it’s been almost two months since my last post. Well, actually I can, I just don’t really want to. Where have I been you ask? I have been traveling through the land of Myself, specifically the area of “Feeling Sorry For”. I don’t really recommend this place, but if you have to go there try not to stay as long as I have. I had been given ANOTHER f’ing diagnosis with no cause or cure and it just put me in a downward spiral that left me feeling like WTF?! Instead of taking this news and putting more emphasis on managing my health I basically went on strike. I stopped doing anything related to all these fun and fabulous no cause/ no cure conditions I have. Literally, cold turkey. No reading, writing, journaling, looking at my blog, exercising… yeah, I showed… ummmmmm… myself? Yeah, that’s it! I showed MYSELF! Dumb, dumb ,dumb…. I went on strike and who exactly was impacted by this? Me. Oh and by the way… Essential Tremor, this is the newest addition to my list. If you have an uncontrollable shaking of your head or hands then you may want to look into this. I guess having an invisible disease, the thought was… I should have something that folks can see, yeah let’s make her head shake (it’s really more like a nod). Ahhhhhh, someone up there has a sense of humor, I’m just trying to find my way to see the lighter side of this.
On the more sunny side of this place I have been in for the past month, I have been watching my diet. I was also diagnosed with gall stones a couple of weeks after my Essential Tremor diagnosis so I had my gall bladder removed last week. Finally a problem that has a solution! Yes, it meant having a body part removed, but I am really hoping that this resolves a lot of my GI issues I have been dealing with for a long while. In watching my diet, the last few weeks I have been drinking protein shakes as a meal replacement for two meals a day. Incredibly, this has helped a lot. It seems like the only time I feel somewhat okay is when I drink the shakes. Food and I are still having a love/hate relationship. I love to eat, but the food and my body hate each other. This is really uncool, can’t we all just get along?
I have rambled a bit, but what really prompted this post is this funny (well, funny to me) thing that happened yesterday. My first instinct was to tell my husband, but he’s on a short trip away and I didn’t want to intrude on his time away. I would have texted him, but I don’t have the patience to type this into my phone (another device I have shied away from lately). Anyway! Back to my story (I am so easily distracted!). I have been trying to lose weight, the real reason for the shakes… yesterday I am in the bathroom weighing myself and I saw the number on the scale and I was like “What the hell?? WOW! No way I lost that much weight!!” Seriously, I’m standing there and my weight has dropped like 5 pounds overnight. At this point I’m trying to figure out how this could have happened… could it be real? Then I look up (since I’ve been looking down at the scale this whole time) and realize I AM HOLDING ON TO THE TOWEL BAR. Yes, as I’m quite sure you can all relate, standing up sometimes is challenging without some help. Well, don’t weigh yourself while doing this or you’ll go through this same fun experience. It’s like winning the lottery (okay, granted a small one – not the Mega Bucks one) and then waking up and realizing “Nope, still not a millionaire”. At this point I gently let go of the towel bar and the little scale thing moves, moves, moves to that point of reality. I have just woken up. I started laughing and thinking, oh man, I gotta tell my husband this one! I can see him shaking his head at me as I write this. I’d like to say lesson learned, but I’m afraid I’ll probably do that again, so I’ll just say it’s good to laugh at yourself everyone once in a while.
After enjoying some time with my folks, my incisions were screaming in pain (it’s hard to relax or move with all that screaming), I gave in and took some pain medication. I told my daughter this so she was aware and then did a few chores and went to sleep. I was KNOCKED OUT when all of a sudden I hear my door open, not open quietly mind you it was opened with purpose and my daughter comes rushing in and says to me, “Did you hear that? Did you hear that?”. Let me just restate… my husband is not here. My heart starts racing and I’m trying to wake up and this damn fog from the pain meds is holding me back… fear just grabs a hold of me as I try to be the grown up in the room. She continues on, “It sounded like a werewolf…”. Not what I was expecting. I am pretty sure I responded with something like… “Am I awake or is this a dream?”. Did she really say… werewolf? I think maybe she should not be allowed to watch that new Teen Wolf show. I mean, this can’t be a normal thing to rush in and ask in the middle of the night, right? Okay, so I’m pretty sure she didn’t hear a werewolf, but if there had been one, I would not have heard it (another reason why I don’t like to take meds that make me drowsy). So I’m like, “Why don’t you just sleep in here?”. Instead she takes the dog out of my room, goes back to her room and leaves me wide open for attack. I thought my solution was better. I’m completely freaked out, yet I’m so tired I just fell back asleep. Interesting experience, that’s what drugs do for you, put you to sleep so you don’t have to face the world… on that note, maybe I should ask her when she wakes up if that really did happen… but it had to because the dog was clearly NOT in my room when I got up this morning.
I bet when you decided to read this you weren’t expecting this! I hope I’ve given you a reason to smile today.
Stay super cool and remember… one day at time, one hour, one minute. I wish you all an awesome day of wellness and hope!