It’s my life and I’ll cry if I want to…

It’s my life and I’ll cry if I want to…

IMG_9397 (1)Today has just been one of those days where I can’t seem to summon the motivation or energy to do anything.

I am SO tired of this bed. SO tired of this room. SO tired of this house. I need to get out and have an adventure. SO badly. I was not made for this life.

I WANT to cry. I WANT to yell. I WANT to throw things. I WANT to know why. I WANT the pain to stop. I WANT to shower. I WANT to go kayaking. I WANT to go swimming. I WANT to go fishing. I WANT to do SOMETHING. I WANT to do ANYTHING frankly.

 

I NEED people. I NEED stimulation. I NEED to be productive. I NEED to be useful. I NEED to be out in nature. I NEED someone who understands. I NEED support. I NEED someone to hold me and tell me everything will be okay.

I CAN keep the faith. I CAN reach out to others. I CAN give my body what it needs. I CAN keep trying. I CAN do what the doctors tell me.

I CAN try again tomorrow.

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I Have a Confession to Make

I Have a Confession to Make

I fell off the wagon…

There… I said it… No taking it back now… Unless I decide not to publish this post… 😉

After 5 months, 1 week, 3 days, 16 hours, 12 minutes, and 32 seconds… I gave into temptation… There is no taking it back now… I wish there were… I really do… I mean, honestly… It was heaven and I would do it again in a heartbeat….. but…. I hate the example it gives my boys… and I am better off without it… I don’t need to be putting that poison in my body… even if I couldn’t tell a difference in my pain level without it…

So, today, I start again, I have now been 17 hours without it again… and I want it pretty badly.. but I can dot this… I think I can…I think I can… I think I can.

My Other Invisible Illness…

My Other Invisible Illness…

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I talk a lot about fibromyalgia but I also have narcolepsy. The picture of me sleeping is what the last 2 weeks have looked like. I cannot fill my marginally helpful stimulant until the day it runs out. Often the pharmacy is out, prompting them to have to order it and me to be out for a day up to a week. Well this time my prescription had run out, and although I had been trying to reach the Drs office for a few days to go ahead and call in a new prescription, it took quite some time to reach them.

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Now, some of it was my fault for waiting too long but a lot is the office. But most of it was the Drs office fault. I don’t have a lot of choice as far as Sleep specialists and by and large really like this guy but his office is not efficiently run. They have multiple independent offices and it is hard to get in contact with them. Anyway, I have an appointment for tomorrow and still no prescription. Ugh. I have slept an average of 16-21 hours a day since Thurs before last.

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I sleep for hours at a time and still wake feeling like I haven’t slept in a week. I want to stomp my feet and yell that it isn’t fair at the top of my lungs. I want to cry. I want to be angry. I hate feeling horrible. I hate missing out on life. I hate being so helpless. I hate what my life has become. I hate being so worthless. I hate being so useless. I hate being a burden. I hate that my kids take care of me now. I hate Narcolepsy. But….. that does no good. It is a waste of the little bit of energy that I have. It is a waste of the time I have to be awake. It is a waste….

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And the Award Goes To…..

And the Award Goes To…..

me!!!!

I was nominated for The Sunshine Blogger Award by Photobaugh (a.k.a. Cynthia) over at My Inspired Fibro Life. The Sunshine Blogger award is given by bloggers to bloggers who inspire positivity and creativity in the blogging community. I am so surprised and humbled by this because I am so new to blogging. Thank you Cynthia!

Here’s how it works…

The Rules

1.) Thank the blogger(s) who nominated you and link back to their blog

2.) Answer the 11 questions the blogger asked you

3.) Nominate 11 new blogs to receive this award, and write them 11 new questions

4.) List the rules and display the Sunshine Blogger Award logo in your post and/or on your blog.

Photobaugh’s Questions

  • What was the last blog post you read?

The Problem With Treating Illness With Exercise by Jamison Writes which really hits home with me. All of the Drs tell me to exercise and lose weight to help my fibromyalgia and other health issues and while I agree that I definitely need to exercise and be healthy, they completely ignore the fact that I was the healthiest I had been in 20 years when I got sick and every time I exercise now I fall into a flare of at least a week in length. Kind of makes it hard to make progress.

  • What made you laugh today?

It is early morning here so it has so far been pretty uneventful thank goodness. However, every morning, I make myself a frozen breakfast sandwich to eat with my medicine. I am not much for breakfast, especially early, so I usually give my little dog, Sophie, the bacon and just eat the egg, some real cheese that I add, and the Eggo sandwich on it. Whenever I come back into the bedroom with my plate Sophie gets all excited and starts running around in manic little circles on the bed until I am afraid she is going to go flying across the room from the momentum until I give her the bacon. It is so funny to see this tiny little ball of fluff flying in circles on my bed making panting noises. LOL

  • What are you grateful for today?

I am grateful for my kids each and every day.

  • Where was the last place you went on vacation?

Hilton Head

  • Where is your favorite place to take a vacation?

Anywhere warm with a beach and the ocean. Preferably the gulf and not too touristy but I am not that picky.

  • What inspired you to start writing a blog?

When I was diagnosed with fibromyalgia I knew nothing about it. I had a vague understanding that it involved muscle aches. I decided to start a blog to 1. Increase awareness of fibromyalgia and narcolepsy, 2. Help others with fibromyalgia and chronic illness to feel less alone, 3. Have a place to express myself and something to occupy some of my time.

  • What did you wish you knew before you started blogging?

How hard it is to settle on or come up with something to write about. Either I cannot think of anything at all to write about or I have too many options. I have started keeping a notebook in my purse to write down ideas for later. I miss having a brain that works. Lol

  • When you’re not reading blogs, would you rather binge watch Netflix or read a good book? 

I used to love to read and would sit and read a book in one night. I would love to do that now but my lack of brain power makes it hard to concentrate and to remember what happened. At least on Netflix most shows have a recap at the beginning of every episode. That being said, sometimes I get so sick of TV that I will turn it off for weeks at a time and do something else. Jigsaw puzzles on my iPad with music or crocheting if my hands will allow or blogging or whatever.

  • Which social media platform do you prefer and why?

This is a tough one. I think I have met a few people I know better and I get more from their posts on Facebook, but I have reached more people that get something from my posts on Instagram. If I could just get that hashtag thing figured out better. And forget Twitter. I’m totally lost on there. LOL

  • What is your favorite quote or saying?

I have two that kind of go together I guess. The first is the Golden Rule: “Do unto others as you would have done unto you.” The second I always heard my Uncle Johnny say but not sure if it came from somewhere else: “What you do comes back to you.”

  • What one thing did you do this last week to show yourself some self-love or self-care?

Well, I went and got a massage which is part self-care because parts of it are heavenly and part medicinal because my muscles and joints need it but it hurts like heck.

My Nominees

My Questions

  1. What do you feel is your spirit animal or the animal that best represents your personality and why?
  2. If you could have a service dog to perform only one task for you during a flare what would that task be?
  3. What is your favorite thing to do to fill your bucket/restore your soul?
  4. What is your favorite children’s book and  favorite children’s movie of all time?
  5. What is your ultimate comfort food during a flare?
  6. What is the stupidest/most annoying thing a Dr has said to you?
  7. What is your “weirdest” or most annoying symptom?
  8. If you woke up tomorrow completely cured and healthy what is that one thing (you know the one 7433cab8c7a49b52d2f5276a83826002--funny-emoji-emotion-faces) you would do that you can’t do now?
  9. What is one habit/dietary change/lifestyle change/etc. you have made in hopes it will help with your condition(s) that you really resent having to give up or change?
  10. What is your favorite blog post you have written?
  11. If money was no object and you didn’t have to work and there were no other considerations and you could live anywhere in the world you wanted to……where would you live and why? Provide a picture if you can. LOL
My Love/Hate Relationship With Sleep

My Love/Hate Relationship With Sleep

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Awww, don’t I look so peaceful asleep with my puppy in this picture? Well, pictures can be deceiving. Sleep is usually a tough thing for those of us with chronic pain/illnesses. Typically, we suffer from painsomnia, or an inability to sleep because of pain, which leads to our being exhausted all of the time. Many times our diagnoses come with fatigue as a symptom so that even if we are able to get a full night’s sleep we still spend the next day too exhausted to function. Our bodies need a lot of sleep to heal.

I have the diagnoses of fibromyalgia and sleep apnea, both of which have fatigue as  a symptom. I also have the diagnosis of narcolepsy which basically means I could sleep a week and my brain would still be telling my body that I had NOT slept in a week and needed to sleep immediately, as soon as I woke up.

I am on a medicine to help me stay awake. Basically, without the medicine I sleep an average of 21 hours a day, with the medicine it is more like 14-16. When you add painsomnia in there I sometimes get as little as 2-3 hours. The medicine does not relieve the feeling of being exhausted though. I spend every minute of every day fighting to resist napping and muster the energy to get even one thing done. I have tried every medicine for narcolepsy there is except for one. To try that one, I must come off of the meds I am on for my fibromyalgia and depression because, when combined, they have the nasty side effect of making you stop breathing.

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This is what I usually look like asleep. Sexy, huh? I wear the mask for my cpap machine whenever I sleep. After 10 years of wearing it, I don’t even notice anymore. I made myself wear it in the beginning because my sleep study revealed that I was having episodes where I stopped breathing 50 times an hour. Since each episode increases my chance of stroke and heart attack, I was very serious about training myself to wear it. The black thing around my chin is a chin strap. Duh, obvious, but I started opening my mouth and snoring which decreases the effectiveness of the cpap. I tried a mask which covers the nose and mouth but I just could not handle it. I am claustrophobic and it gave me panic attacks. Hence, the chin strap which is not as effective as the full face mask but you do what you gotta do.

So, every 30 days I have to get this narcolepsy medication filled which gives me about 5-7 more hours of being awake a day. I cannot fill it until the very day that I take my last pill because of some silly law. My pharmacy is usually out of the medication because even though I have been filling it every 30 days for 2 years they cannot anticipate that I will fill it again in 30 days. This means the pharmacy has to order the medication which usually takes at least 24 hours to arrive. If I happen to run out on Friday then I have to wait until Monday afternoon to get the medication. On holidays I have went as many as 6 days with no medication. It usually takes a couple of days at least for the medicine to build back up to therapeutic levels and start working again. That means I DID sleep a week, and yes, I still woke up exhausted. I missed out on a lot of holiday events as well.

So, yes, it is complicated and my DRs are constantly trying to balance which meds will help with which condition and which symptoms are the most important to control. For me, I would rather be asleep or exhausted than in excruciating pain, and it is excruciating. Does this mean I am happy with the way we are treating my symptoms? Heck no! I have two kids that thankfully are teenagers and mostly responsible enough to get themselves up and to school in the mornings. If I am lucky I get up early enough to try and kiss them (teenagers, remember?) and tell them to have a good day. I sleep a lot while they are in school and then struggle to stay awake in the evenings so I can at least see them when they go from the kitchen to their bedroom. Lol, hanging with Mom isn’t cool anymore.

I miss my life, and I hate that I am sleeping through so much of it. I feel guilty that I am not more active in my kid’s lives. Before I got sick, I was on the go all the time and too busy to sit down for a minute. I was involved in the boys’ schools and sports and we were always off on one adventure or another. Now, my life is spent in bed, either bored to tears, or sleeping. I am hopeful that one day there will either be a cure for one or more of my conditions, or a new medicine that will help me function better. For now, I am doing the best that I can and praying my kids understand.

**I hope this article contained some useful information for you on fibromyalgia, sleep apnea and narcolepsy. I am not a medical professional and nothing in this article is to be considered medical advice.

I wore my slippers to the Dr….

I wore my slippers to the Dr….

I wore my slippers to the Doctor. Yep, I did it. The receptionist commented. The nurse looked at me funny but knew better. The Dr laughed. They know me so well. I have been at this office 20 years.  It was a rough morning. They are lucky I showered and put on clothes… but the shoes….. nope. Don’t need them. Too tight. Or too rough. That one is scratchy. Those are hard. Slippers… just right. 😋

Have you ever been really sick? So sick you cannot get dressed but you have to go to the Doctor to get medicine to get better? Maybe the flu? Or Pneumonia? Well, I had neither of those. It was just a typical Wednesday for me. I have Fibromyalgia. That means I am always in pain. Maybe my hips hurt, or my back, or I just kind of ache all over. Or I can have excruciating pain. I never know what to expect and it can change with no warning. There is rarely ever rhyme or reason to it. I do know to expect a lot of pain after any kind of activity. I have to be careful not to overdo it. My good days hover near a 3-4 on your pain scale. Yesterday, I was at a 6-7 by the time I reached the Dr.

With Fibromyalgia, you may sometimes experience very sensitive skin. Even the light touch of a feather can cause pain. You may feel like your nerves are raw all over your body. Rough clothes or bedding are torture. I was experiencing both of these, plus my feet were a bit swollen. Hence the slippers.

Another very debilitating symptom of fibromyalgia is the fatigue. I have a limited amount of energy these days and it is way less than I had before getting sick. I had showered for the appointment. That, in itself, is the same as a 3-mile hike used to be, as far as the energy it uses for me. So by the time I was ready to go I was already exhausted and needed a nap. So…pain, raw nerves, sensitive skin, exhaustion….what am I forgetting?

Hmmm… oh yeah…. depression and anxiety. I was anxious about the appointment. I was happy to be getting out of the house and seeing people. However, instead of going to get a wonder drug which would have me feeling better in a few days as you do when you have the flu, I was probably going to be taken off a medicine that may or may not be helping with my pain. We believe it is contributing to my weight gain and severe memory and cognitive issues. I am going to slowly lower my dose and see if my pain worsens. Not an easy task since out of the last 7 weeks I have had roughly 5.5 weeks of severe pain. So I was depressed to be facing what may very well be a lot of pain in the near future.

My wonderful Dr (no, he really is) also wants me to do a repeat MRI of my brain (fun), see my neurologist asap (more fun), and required at least 3 pints of blood (super fun). He did gift me with a lovely parting gift of prescriptions for a shower chair and grab bars because I have been falling so much. This was the most fun I have had all week. Seriously folks. I really need/want that shower chair.

So…what is the moral of the story? I don’t know… Lol. I guess I would like everyone to know that living with a chronic illness like Fibromyalgia is harder than you can imagine. Those of us with a chronic illness call ourselves Warriors for a reason. I listed several of the bigger symptoms above but there are hundreds of symptoms and other conditions that go with chronic illnesses. So say a prayer for us please and next time you see someone out in their slippers or pajamas… stop and consider that they may not be lazy or whatever. Maybe their shoes hurt this morning…….

Our First Guest Post!

Our First Guest Post!

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Hey you guys!!! (Total Goonies flashback there, LOL) We have our first guest poster. Lisa Gingold Cairo posted the following in the Facebook group “Living with Fibromyalgia & Chronic illness.” I thought it was very good and most of the “facts” reflect my own feelings, and, so, I asked Lisa if I could share it and she agreed. Thank you Lisa!!

I believe we all go through this process of dealing with a chronic illness in different ways. Many of us have felt like this at one point or another, I imagine, and other times we wouldn’t agree with it at all. I promised to be real with you guys though so I wanted to post this so people can see what fibromyalgia is from the inside, at least from Lisa’s perspective. I am in no way claiming these to be actual facts, but, rather, the facts according to Lisa. What do you all think? Have you felt like this at some point or feel like it now? Is there some way you would suggest to help? Please remember to keep comments loving, kind, and supportive.

The Real Fibromyalgia facts:

By: Lisa Gingold Cairo

1 No one can agree where it starts, so there obviously is NO CURE

2 The pain is not invisible, it is written all over our faces and in our attitudes.

3 It causes major depression anxiety and suicidal thoughts. Nobody Wants to live like this with no end in sight.

4 Eating right and exercising is NOT a cure, I know for a fact!

5 We do care that we are destroying our families and the people who care about us and we don’t have the energy to care about the rest,even though we want to

6 It does take almost an hour to wiggle around in bed to get rid of some of the pain so we can get out of the bed and we don’t know why either

7 Our Doctors Really have know idea and the honest ones will admit it.

8 We miss the people we were, watching ourselves fade away and not knowing this new body and all the demons it continually presents.

9 Fibro fog is one of the scariest things ever. If you don’t have any idea what it is, it is on and off Alzheimer’;s, and I am NOT kidding.

10 Socializing to anti social in only a few short years, and not on purpose, you just need things around you to go slow with as little stress as possible. Really good luck with that!

George Ezra

George Ezra

Ok guys, I am gonna act like a squealing teenage girl for a sec, but bear with me. This eventually gets around to grown up stuff. If you have never heard of George Ezra you must go check him out now. I have loved his voice since a friend introduced me to his music about 2-3 years ago. I could not believe such a sexy voice came from such a baby (meaning very young guy). Lol, sorry George. BUT, after reading the press about his new album, Staying at Tamara’s, and listening to the whole thing about a thousand times since it came out Fri, I am even more in love with the guy.

Guys, he had some major anxiety after his last tour and took some time away. He wrote some really great music and came back when he was ready. He has been open about it and has been raising money for mental health. He has written about it in his journal on his website. And the MUSIC and the VOICE! You must listen! If that doesn’t convince you this Buzzfeed might. It is a good summary of his early years. Lol.

https://www.buzzfeed.com/lucyjaynef/reasons-why-you-should-be-crushing-hard-on-george-15llj?utm_term=.fbOA2vQNM#.pvrogROjv

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Seriously, support a man who has proven to be funny, sweet and a hell of a musician. Just an all around good guy. Let me know what you think. Check him out on IG and Twitter

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#georgeezra #anxiety #mentalhealthawareness #mentalhealth #hisbiggestfan #lovehimevenmorenow #stayingattamaras #dontmatternow #paradise #Ijustlovethemall #sexyvoice

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Spoon Theory explained

Spoon Theory explained

When I was first introduced to the world of chronic illness by a friend it took me forever to figure out what she was talking about when she mentioned spoons. Basically it is a way to explain to friends, family, and ourselves how we have to ration our energy throughout the day in order to not run out at a critical time. I am including the article on how the Spoon Theory came to be and what it is.

https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

#fibromyalgia #fibro #spoonies #spoontheory #chronicillness #chronicpain

Happy Weekend!

Happy Weekend!

Saturday 8 am

Ok guys, time to start the wknd. Well most of you probably started last night but I slept through that. So ta-da! You can start over with me! Of course, I bet a lot of you are still sleeping. I have been up since 3:30. Ugh …. ok… back on track… Our mission, should we choose to accept it, is to go do one thing fun this wknd. Go…as in out of the house… as in put on clothes… whew! I am tired just thinking about it. Wait, I’m always tired. Ok, so finish your coffee and off we go! Check back in with me later and tell me what you did. *If your fun thing is walking to the mailbox you don’t have to get dressed. ;).

#fibromyalgia #fibro #fibromyalgiawarrior #chronicillness #chronicpain #letstalk #support #fibroscoop #spoonies #sleepapnea #sleepallday #narcolepsy #narcolepsyawareness #fibromyalgiasucks #fibromyalgiaawareness #fibromyalgialife #excessivedaytimesleepyness