So talking in my sleep has been going on since I was a child. I would get embarrassed at summer camp because I would talk in my sleep and the other kids would tease me. I have always talked in my sleep, I can’t help it. If I could I would, but you get what you get with me! I have some funny stories from college years when I would talk in my sleep. I scared the crap out of one of my roommates when I whispered her name in my sleep, she wakes up asks me what I need/want, I whisper her name again she asks me again what I want, I shout her name, she shouts back and I start snoring….needless to say I was asleep the entire time.
So I am used to people complaining about my talking while slumbering. I shrug and apologize. I have had the sleep tests done and was diagnosed with sleep apnea. I wear a cpap mask and use a cpap machine every night, and even with that I will still talk on occasion. Well in the last couple of weeks apparently I needed to raise the bar…I have decided that talking in my sleep is not enough. I need to start singing in my sleep. My poor wifey tells me the other morning that I was singing VERY LOUDLY to her in my sleep. Of course I laugh at her and ask if I was at least singing in tune, this does not amuse her. She said she kept gently elbowing me to get me to stop which would quiet my concert for a bit, but then I would start again much to her dismay.
Thankfully she understands that I was not doing this on purpose and she is very loving and did not try to smoother me in my sleep…of course with the cpap mask she would have had to remove it first because placing a pillow over the mask would not have done much good. So we have no idea why I have changed my normal routine of just talking in my sleep to now singing in my sleep, but I find it hilarious, my wife not so much. Of course I’m sleeping through it, she is waking up unable to sleep so I can see why this would be troublesome.
My sleep disorder doctor does believe there is something more going on and we are working on getting more testing done, but we hit a roadblock with the insurance company. So until we can get them to approve the testing he wants done the wifey is going to have to deal with my singing in my sleep. Of course since I know that I am wearing the mask I am making sure to sing loud enough that she can enjoy it, which I think is very kind! I mean if I am going to put on a personal concert at 2am I think she should be able to enjoy every second of it…don’t you agree?
So often the hardest part about being chronically ill is finding your zen. You spend a lot of time waiting for the “other shoe to drop.” You either have things going really well and you are waiting for something to fall apart or everything is falling apart and you are waiting for what else could possibly go wrong. The real trick is to find a neutral space in all the medical chaos you often find yourself in and just try to stay in a peaceful mindset.
It’s not easy and I am no expert on this one! I often find myself drifting into the chaotic world of what could possible go wrong next! I really have found humor to be a good outlet for myself because if I can keep laughing I find I stress less. Notice I said less, not that I don’t stress, because I am human, but I stress less. I try to explain how I feel to the doctors but even after so many years of the pains it’s hard sometimes to explain what is going on. It’s hard to explain how I feel, I get tripped up over my own thoughts and words and the more I get tripped up the more anxious I get. The more anxious I get the more I get tripped up and the cycle continues.
I think for me I have learned to just pause, take a minute to collect my thoughts and start over. I try to take a deep breathe and collect my thoughts and realize that I don’t have to be perfect. I just have to explain the best I can. No one can feel the pain like I can so I have to be my own advocate but if I’m not telling them the whole truth they can’t help me. So sometimes I just have to let them know I’m overwhelmed. Let them know how I’m feeling and then go on from there.
No one is asking you to be superman or superwoman. They are just asking you to be you! They are asking you to be truthful and honest and help them help you. Learning to be gentle with yourself is hard, but worth it.
Okay fess up who doesn’t like a good NAP? I mean I really think the Spanish have it right with siestas in the afternoon! Take a nap go back to work, you feel refreshed! As a child I stopped napping at 6 months which my poor Mom had to put up with, as an adult I take a nap about everyday now…I think I am making up for lost time…sorry Mom! My Mom really is a saint! She takes me to my appointments, helps with taking me to do odd errands like going to the bank, post office etc. When she jokes about that I am her full time job she’s not kidding!
I am really grateful for my Mom and how much help she has been these last couple of years with getting me to these appointments. I don’t know where I would be without her. It’s been nice to spend some extra time with her. Of course when we spend all this extra time it doesn’t feel like quality time because its always around medical appointments. I am seeing this doctor or that doctor, I’m getting this or that test run. So every once in awhile she and I will pick a day and just go out. We’ll spend some quality time together that is not around some medical appointment or procedure.
I know that my whole life is not going to be based around doctor visits and medical testing but right now that’s what it feels like and it’s exhausting! I have all these pills to take, all these blood draws and tests plus physical therapy. I’m always at this doctor or that’s office for some sort of check up. I have this test or that test coming up. My calendar is already filling up for December and we haven’t even hit September yet… life of anyone with a chronic illness!
Apparently I lost my mind for a moment this morning…now it could have been that my body decided that 5:30am was a good time to wake up and my brain wanted to sleep later. I did try to stay in bed later, but the longer I fought my body the more my pain increased and I soon realized this was a losing battle. So body 1-brain-0. So I got up threw on my walking clothes figuring if I was going to be up so early I would get my walk in early, then get breakfast and a shower. Sounds like a plan right? So I get the socks on, put the shoes on stand up and CRACK! BOTH KNEES CRACK like the old wooden staircase in some creepy old house you shouldn’t be playing in as a kid. I close my eyes and softly shake my head…knee braces…still sitting on the FLOOR…
Remember what I said about body-1 brain-0 WELL apparently when my body won the argument to get up, my brain still tried to sleep in because now I have my shoes tied and my knee braces are sitting on the floor beside me. Of course I now have to untie said shoes to take them off and put the knee braces on in order to walk, but what else is knew? I think I need some coffee…
You’re sitting in the doctor’s office and you get a new diagnosis..what is the first thing that pops in your head?
d) I’m switching Doctors
The thing about having a chronic illness is that often e is the one that pops in your head! You’ve been to the doctor so many times, they have run multiple tests and when you FINALLY get a diagnosis you want to jump up and down and scream and shout! However usually by the time that happens you don’t have the energy to jump up and down or scream and shout! This year alone I have had multiple new diagnoses, some I was happy about, some not so much and I might be getting a couple more by the end of this week…yeah not sure what my response will be.
I am tired right now. I am so exhausted from everything that is going on that I am in survival mode. I am falling asleep at night on the computer in mid-typing which is the clue I need to hang it up and go to bed. I know part of the issue is the heat, it is HOT where I live right now and so being out in the heat is not helping, I have had a lot of medical appointments getting everything ready for the upcoming surgery, but the other part of this is just ME! It takes a lot of energy to do everything. When I walk I have to be aware of my foot placement because my right foot likes to drift and then that puts added pressure on both knees, which I don’t need. So I have to be careful of how I am walking. My left ankle has been sore which I can’t figure out if I just stepped funny at some point in the last week and didn’t realize it, or if something else is going on.
I have really bad balance issues so I am always having to be aware of my surroundings to make sure I don’t bump into something. I don’t want to knock anything over because I am closer than I think I am, which happens. I have been having headaches because of the weather, and my allergies have been acting up as well. So things are just all sorts of complicated right now and I have to work hard at keeping them uncomplicated. That takes a lot of physical and mental energy. Add the fibromyalgia in the mix and I’m done!
Sunday I was walking out of the bathroom at church…this should have been an easy task…but it’s a narrow bathroom. I did not walk to the handicapped bathroom. I lost my balance and my knee brace got caught on the cabinet. Wifey asked me if I was alright and I assured her I was, and I was it was more embarrassing than anything else. I sat down and fixed my knee brace. I wanted to make sure that when it got caught it didn’t get twisted.
I just like to make life interesting for everyone around me! I like to keep everyone guessing! I will be glad to have the rest time after surgery! Right now I feel too busy which I know that will slow down to a halt very soon and I will have time to breathe again!
So last night was a Strawberry Moon so I was very excited to try and see said Strawberry Moon…well because of the trees I did not get to see said moon. Well I came back inside got re-oriented because any time I look up I get dizzy! Then I got ready for bed. I totally forgot that dinner needed to be put away. So this morning when I got up I went to make the coffee and passed the slow cooker and saw the beautiful leftovers from last night. MAN! So in the trash they went AFTER I got the coffee started because anyone who knows me knows I have to have my cup of joe in the morning! I mean all things are possible with COFFEE!!!!!
I have been having more and more brain fog issues here recently and I can’t decide if the brain fog is worse or the fact that my sleep habits have gotten off has just increased the severity of the fog. Knowing my luck its just a combination of the two. I am seeing another doctor for my pre-surgical consultation this week trying to get all the final details of the plan down.
One step at a time, we’re getting things figured out, life is good. I am so tired this morning. I feel like I could go back to bed, but I have things that need to get done today. I definitely feel a nap today! Last night I kept waking up, I think I just have a lot on my mind right now. I keep trying to remember things so I keep trying to say them over and over again, but then in the middle of the night I’ll wake up with those reminders! So maybe this idea isn’t working so well! OR Maybe it’s working TOO WELL! I guess it depends on how you look at it!
I also have notes written for myself as well because I know I’ll forget if it’s not written down somewhere.
It’s all good. I know I’ll remember or I won’t because that seems to be the way things are running right now!
So normal people go to bed and ACTUALLY SLEEP, I go to bed and if I’m lucky I sleep. Last night was one of the worse nights! I fell asleep okay, I was pretty tired to start out so that was a good sign. Recently I’ve been battling insomnia so I haven’t been falling asleep until 1am-2am and then my body wakes up around 6am which is NOT enough sleep! So last night I was tired at 9pm and I was like I am not fighting this, I am going to bed! So I go to bed, I tossed and turned a bit until I found that semi-comfy spot that I actually could fall asleep in. I woke up several times during the night to re-adjust which is pretty par for the course. At 4:30am I got a bad leg cramp and so I flipped over…this is very key point so remember that I normally sleep on my right side but because of the very painful leg cramp I am now sleeping on my left side…at 5am I JOLT AWAKE when I nearly come CRASHING OUT OF THE BED!
See I always sleep on the right side so when I roll over on my back no big deal, but key piece of information I sleep on the edge of the bed, always have, so when I was sleeping on the left side and went to roll on my back there was AIR! Scared me to death! Guess I should be glad it didn’t scare other things out of me otherwise I would be cleaning the bed and floor up…
So I decided that 5am was a good time to wake up and start my day, I am sure I will take a nap later in the middle of the bed so I won’t have to worry about rolling over onto AIR. This is why I only ever sleep on one side makes things easier never have to worry about falling out of bed. I am a klutz! Go into the ER how did you break your arm? I fell out of bed at 5am. No how did you break your arm? I fell out of bed at 5am, like seriously, I am that klutzy!
The night before I woke up in the middle of the night after having a dream we were trying on Mardi Gras masks with my CPAP mask in my hand. I guess I decided to take it off in real life. I put it back on and went back to sleep. Wifey thought that was pretty funny, I however did not find it as funny as she did. I’m not saying I didn’t find it funny, just not as funny as she did.
So in addition to all the pain my face is red hot…or at least feels like it’s burning up. Now wifey seems to disagree with me on this, but I feel like my face is burning up, but I do agree that to the touch it does not feel as hot as I feel internally…if that makes sense. My temperature does not register this, it actually has been lower than normal. My cheeks have been redder than normal, so I think you can see it, but maybe it’s just me.
I am just finishing the antibiotics for the cyst that I have. My knees are not cooperating (I know what else is new on that front). My neck has really been bothering me, even more than normal I see the doctor in 2 weeks to schedule surgery. My back is bothering me and today I have a migraine. Oh yeah I am just loving life today!
My neighbor came over to chat and commented that I looked tired, and I know I do, I feel tired. I have been randomly falling asleep at the computer again, I will lose time which is always disconcerting. I think this is playing into my neck bothering me more than normal. I have found myself in odd angles which I’m sure isn’t healthy for my neck. I have checked my CPAP read outs every morning and most mornings they are decent and I’m sure that most sleep apnea patients would be pleased with mine, but something is just not right. I don’t know what is going on with me, but something is wrong.
I go in for thyroid re-check and potassium re-check tomorrow and maybe something in the blood work will help clue the doctors in. I am so tired of feeling crappy and hurting. I feel like I am losing a battle I didn’t sign up to fight. Of course that is the joy of having an autoimmune disease, you are literally battling yourself. Your body has decided to go to war with itself and destroy some piece of itself and you are stuck on both sides.
I am having one of those days I expect to find my cellphone in the fridge..yup I just don’t know which end is up. I mean I keep walking into a room and then stop to think why was I walking in here in the first place…I know this is just the fibromyalgia, but geez! Brain fog is something I still have not gotten used to which I’m not sure you are supposed to, I mean I know it is part of the condition, but forgetting why you go into a room should just be a side effect of old age. I’m too young for this!
I have not been sleeping well which might be the fibromyalgia, might be my sleep conditions, might be the back issues, might be my neck, etc I have so much going on right now that it’s hard to say why I’m not sleeping, but it’s getting old. I really want to sleep more, but then I look on the cpap machine and realize I’m back to my 7.5 hours. I used to consistently get 7.5 hours, and then I was getting a little more and it was awesome, now I’m back to 7.5 hours.
So the heart rate is going up and down and I am feeling like I’m on a really bad ride that I don’t want to be on. Can someone please tell my heart that what ever carnival ride it put me on, I didn’t buy the ticket? I like the lazy river ride please not the shake them up and let them loose one! When I was a child we went to the fair and they put me on one of those rides that they spin you around and you go around in a circle I started turning green so they stopped the ride so I could get off! They knew I needed to get off before I puked!
The joys of the neurological issues is that I feel carsick all the time so that plus the dizziness from the heart issues is NOT FUN! I want a refund on this carnival I want the fun one! Next time I’m picking the field trip! I want to have fun not feel like I am going to fall over at every turn.
My hamstrings are cussing at me…they do not like me and they remind me every time I stand up to do anything. I have the knee braces back on today, the physical therapy doc had me try a different KT Tape on Monday but I didn’t like it so I took it off last night. So double knee braces today! Which my hamstrings are cussing about that too! I have muscles that I did’t realize were there! Actually the funniest part in all this is my right thigh is numb, but I feel my hamstring! It is SCREAMING with pain! I am using ice packs and the heating pad alternating trying to relive some of the pain. It is odd to know your thigh is numb to the touch, but then to get feeling from the inside.
This morning wifey accidentally woke me up at 6am. She didn’t mean to! She rolled over and that’s all she wrote! I woke up and all my night sheep were GONE! They had left the bedroom, apparently all of hers were gone too hence why she was tossing and turning. I guess we need to talk to Serta..or is it Sealy? Which one has the sheep? Whoever it is I need more sheep at night! I felt bad because I got up, I was awake and when you wake me up then I’m awake awake. She felt bad for waking me up early, but it really wasn’t anything she did per se, she just flipped over. I just felt like it wasn’t going to help her get back to sleep with me tossing and turning when I knew I wouldn’t fall back to sleep.
I am using my spinal cord stimulator a lot right now because of the change in weather its been nice and warm during the day and COLD at night, the back and forth in the temperatures means my back HURTS! My neck hurts too, but unfortunately my stimulator doesn’t go that high. My allergies are also starting to kick into high gear now that spring has sprung.
I just hope my hamstrings have recovered by tomorrow or the physical therapist is going to have to do a lot less with me!