Still Just a Sleepyhead

I got lots of things accomplished this week!       ….. everything but getting a good nights sleep….

Just an update on what’s going on with my health- I do NOT have Lupus :o) I was really worried about that, so I’m happy that my thousand dollar blood test came back negative. Called insurance and I don’t get any coverage for getting acupuncture 😦 so looking into other things.. I went to the sleepy doc and she wanted to get me tested for sleep apnea as well, so I started that last night (more on that in a bit). When I was at the sleep doctors, I told her that I had Fibromyalgia and her response was very abnormal to me. She said

“It’s like a snowball effect. They want you to exercise, but you get fatigued with exercise and hurt your body more, so you lay down, and laying down makes your body hurt, and then you get upset because your body is hurting and your not moving, so you get up again to try and exercise and the same thing happens again. And then you normally put on weight which doesn’t help anything. Then you end up with sleeping problems because your body hurts. I hope for your sake that you actually have sleep apnea because then I would actually know how to treat you.” :O Flabbergasted basically after this last sentence came out of her mouth. I can’t believe an actual doctor just admitted that it’s hard to treat Fibro. That this isn’t just me that’s frustrated, that it’s the doctors who are frustrated too because they don’t know what to do with all of the pain we are feeling. That was a big revelation to me honestly. I’ve always felt like the doctors look at me like I’m not doing enough to help my body, when really they are frustrated with themselves because they can’t help me more. Wow.

So more on this sleep apnea test. My insurance allows me to take this test at home, which I was very excited about because everyone who has Fibro knows how hard it is to sleep. So I was thinking that I would be able to get my normal (which isn’t normal for most) sleep at my house while getting the results for the test. No. I look so silly hooked up to this machine, with wires hanging off of me: a wire around my chest, a wire to my finger, and to my nose. Sounds easy enough right? Well the wire to my finger is hooked to a thing that squeezes my finger the whole night. The wire to my nose has to first wrap around my ears and has a piece of plastic that records my breathing that hangs over my mouth. The worst is the control of it all that is wrapped around my arm. Every time I moved last night I woke up. Also, my hubby, turned over in the middle of the night and elbowed me in the chest right after I JUST fell asleep. Thanks, hun! I’ll get you back tonight 😉

Now that my paragraph of complaining is over I can say- I know, I brought this on to myself. I need to find out if I have sleep apnea or not, but for someone with Fibro that hardly gets sleep as it is, all the machinery SUCKS. But at least I only have 2 nights left with it. And then it’s gone 🙂 So one night down, two to go. And the whole night I’ll be thinking about this…

So I hope all my Fibro friends slept easy last night, and tonight as well :o) I will be wishing I could be sleeping comfortably (kind of) like you.

Wounds Without Marks

Lying in bed staring at the ceiling-

Its only 7 AM on a Sunday morning and I don’t want to get up yet.

Toss, turn, toss, turn.

My love laying next to me sleeping away,

How I envy his ability to sleep without pain.

Ow, why does it feel like he just stabbed me with a knife in my side?

I thought that he loved me,

Why would he stab me?

Wait, where is the blood?

There is none.

But how is the pain so intense with no wound or weapon?

Ah, I see it now….

The weapon is my love’s elbow,

and the wound is Fibromyalgia.

 

fibromyalgia quotes - Google Search

 

 

Just a Sleepyhead

I never would have thought of myself as someone who has trouble sleeping. I love to sleep. I mean, looooooooove to sleep. So why can’t I sleep now?

The more that I read about Fibro in books, the more I found out about sleep problems and fatigue. I’ve always loved to take naps as well, but I just thought that this was because my body was exhausted from the day, but never really connected it to my Fibro. I read in a book that people with Fibro really do benefit from an afternoon nap, but lately I don’t know what to do.. I’ve been sleeping until almost 11AM every morning because I keep waking up during the night- not ever reaching that 4th level of sleep that a lot of people with Fibromyalgia are missing. I’ll lay in bed and shake until finally I fall asleep (like an hour later) only to wake up 2 or 3 hours later, fall back asleep again, wake up again, and the process goes on. The only time that I feel truly rested is after my husband leaves for work at 9 and I am able to get a good 2 hours of sleep until I wake up feeling like I slept half the day away. Then in the afternoon I get tired from not sleeping, but don’t want to take a nap fearing that this will interrupt any sleep that I will be able to get that night. Does anyone else have this vicious cycle going on?

I’m to the point where I almost don’t like going to sleep anymore because then I know I will have to repeat this whole process and then wake up hurting from laying in bed for so long.

Any who, I’m fed up and I made an appointment to go see a sleepy doctor (I’m not sure what they are even called!) to get a sleep test done. I want to see if my Fibro is keeping me awake, if I have sleep apnea, or I don’t even know what.  Hopefully I can find something out about my body (maybe I need a new mattress?) I’m always excited to see what a new doctor might have to say. I always get all giddy before I go to the appointment because I think that maybe someone out there will be able to help me just a little bit.

Are you guys on any sleep medication? If so, what kinds and do they effect you in the morning when you wake up? I was on Amtripliyne (spelling is wrong, I know) taking 5mg a night and the next morning I always felt so tired, so I actually took myself off of it.

Hoping everyone else out there is getting better sleep than me!

Exercise? No thanks.

So I’ve been thinking about how many times I’ve been told to exercise over the years, and I’m beginning to question what I really know about exercising. When I think about exercising I think of pushing my body to its limits, sweating, hurting. Nothing fun really. When I’ve been told to exercise this is exactly what I think of, and my mind actually gets scared because I know that I can’t do that anymore with Fibromyalgia. Then how do I exercise with Fibro?

This is the exact question that has been going through my mind every time I’m at the doctors and they tell me to exercise, but I never have the guts to ask, “How?” Why haven’t I asked? Because I’m 23 and people will look at me like I’m crazy when I tell them I don’t know how to exercise. I either push myself too hard and can’t move for a week, or I feel like I don’t do enough because I’m not sweating and hurting (burning from the workout). I don’t know about you but this is exactly what my coaches told me I should be feeling in high school when practicing for soccer, lacrosse, or field hockey, so now that I’m just exercising for myself I don’t know what to do. Yes, I walk, but how much is enough, or how much is too much? How do I know? How do I get myself off the couch when I pushed myself too hard the day before and I can hardly move today? I keep hearing that swimming is great for people with Fibro, but I also have a fractured bone in my spine, so the last time I swam I hurt my back really bad from the awkward position of swimming. I also pushed myself too hard in the pool that day, and didn’t realize it until it was too late.

I’m having a hard time keep in-tune with my now body and exercising. I need to look at exercising in a new way. I’ve been engrained to think that exercising is what I have explained above, but I need to rethink the definition of exercising. I need to think of it as a fun way to get my body moving. I don’t even want to call it exercising anymore.. what should my new name for it be? I don’t even know- my creative juices aren’t flowing today. Does anyone else with Fibro feel like this? That exercising isn’t what we once thought it was because our body the way it is now is making us believe that it is something different? I might sound crazy, but this whole Fibro thing is making me a little crazy. What do you guys do to get your exercise?

My Troubles with the Future

Feeling crappy today.. had the worst migraine last night followed by throwing up, which lead to a even worse headache. Anyone else get really bad headaches with Fibro?

Making myself some chicken and rice noodle soup and trying to brighten up my day by writing. I was thinking that I haven’t written about my fears about the future (something that I have tried to hide deep down) but I think it’s a good day to do so…

So I’ve been in pain for over 7 years now, but I have always had something to look forward to- graduating high school, applying to college, being accepted to college, going to classes for 4 years, graduating from college with a Bachelor’s Degree in education. Okay, well here I am now. I graduated and I can’t get a job (everyone told me I wouldn’t be able to find a job, but I kept at Education because of my positive attitude saying that the people hiring me would see how much I love children) Well, it didn’t work out that way. I did get many interviews and I’ve been in the top 3 many times, but I’m just missing “having the classroom experience”. Do you know how frustrating that is?! The interview was going so well, I had the principal laughing, I felt comfortable, but something (someone) with a little more experience got in my way. GRRRRR!!!!! So me trying to be positive have taken this as a way to take a break from constantly looking ahead and living in the now and trying to heal my body for the future.

I know a lot of people would think of “living in the now” (especially at my age) with living with no consequences- drinking too much, having sex with different people, experiencing the world for what it is. Going into debt trying to travel the world, not caring about what others think, doing what I want to do. Yeah, no. This has never been me. My definition of living in the now would be enjoying each day that I have by showing my love to everyone that I can, putting smiles on peoples faces, trying to understand my now body- more along these lines. I feel like I was given this chance after working so hard for so many years and getting Magna Cum Laude in college, that now I need to slow down and take time out for my body. A job will come along some day, just hopefully my body will be better prepared for it then and I will be able to give it my all, where as right now I can’t. It’s hard to think of it that way, but I have to. I need to really take the time and try to heal myself as much as I can before jumping into another adventure that my body might not be ready for. Saying this is truly scary for me- because I don’t know what that means for the future. I know people around me are supporting whatever decision I make, but I just want to be like any normal 23 year old and start my career. But I can’t. And I need to accept that. Just like I have to accept that I have an invisible illness that will effect me for the rest of my life. So for right now, the future isn’t like I planned it (but when does it really turn out the way that you planned?) and have to face everyday with a smile because I know for trying to beat the pain of Fibromyalgia, that is actually what I need to do. 

Feeling Good!

I woke up this morning not feeling like I didn’t sleep last night. Hallelujah! It just took 10 1/2 hours to get that way… but who’s counting? 😉

I went this week to get 11, yes 11, tubes of blood taken out of me. That isn’t the most that I have ever gotten taken- but when you’re fasting it feels like everything! They are testing me for lupus, as well as a lot of different things. When the total was rung up for all of the tests I almost lost it – over 3,000 dollars!!! :O Luckily my hubby’s work has pretty good insurance, so I only had to pay 35. But I just couldn’t believe that price! What kind of tests were ordered that are so expensive? I wish I could read blood work codes and knew what they actually meant. I’ll keep you updated on what my blood work says…

But the reason why I think I’m feeling so good is because I’ve been watching what I’ve been eating, and have already lost 6 pounds! It’s really hard to move with Fibro. I’m still trying to balance between feeling good one day and over-doing it, and then having a bad day and not getting off the couch. I know that I need to pace myself, and love my now body and really listen to it, but that’s easier said than done. Usually I don’t know I overdid it until after the damage is already done. I’m starting to keep a list of the most important things in my day and sticking to those that way I don’t tire out doing too many things in one day.

Any who, I just started a new diet where I basically stopped eating everything except a bland diet (eggs, bananas, chicken, rice, and nuts because I needed protein). I have decided to stay off of dairy and gluten for now because I know how much they can upset one’s stomach. Along with my Fibromyalgia I have IBS (Irritable bowel syndrome). So along with all the testing with the Fibro, I had a ton of testing done with my stomach to make sure everything was okay. There were some days that I couldn’t keep anything in my body because I would poop everything out (sorry for the visual, but this is exactly what would happen. Usually I just call it getting sick hehe). I was scared that I was keeping enough nutrients from getting sick 😉 so much, so it was time to see the Gastroenterologist. Luckily, everything was okay. I just have a very sensitive system, that I think goes crazy along with my Fibro, so when one is bad so is the other.

This is why I decided to start over and use a food journal. One, I want to see what my body can tolerate and what my body can’t, but two, so my mom doesn’t keep nagging at me to use one (which I thank her for because she’s the reason that I got on this diet). Each day I’m going to add something new in and see what happens to my body with this new food. I think it’s a lot with knowing your body and really feeling how my stomach is doing. I know that sounds silly, but it’s so true.

So here goes day 2 of food journal, and my body is actually feeling good after a full nights rest. Hope the other Fibro sufferers out there were able to get a good nights rest as well!

My Wedding Day

My Wedding Day

One of the best days of my life. Fibromyalgia was kept at bay this day from champagne and all the love in the air! This is my husband: my rock, supporter, love of my life, best friend, and soul mate.

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