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.

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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

Here we go!

Here we go!

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Aaaaaaaaaaaaaaaaahhhhhhhhhhhhhh!

Okay guys, we are going live with the blog. I hope it goes smoothly. Join me on Instagram for a lot more posts. It has been up a lot longer. Don’t forget to check out the forums too. Link in the side and bottom menus. Also here. Ok, I gotta nap. Be back shortly! Whew!