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…
So over the years as technology has improved so have CPAP machines. When I first went on CPAP the machine was pretty basic, apparently the information could be uploaded but they had to attach it to a telephone wire and it was a huge pain and unless the doctor really wanted it… NOW the information is put on a SD card and the report is really detailed. So if the doctor needs the report you pull the SD card out, take it to the company that supplies your machine they print it off and there you go!
So I haven’t been sleeping well and I can check in the morning the average number have apneas I had the night before and the goal is ZERO. So on the number I am on we got it down to zero and before usually when I checked I was at zero, 0.1, or 0.2 which was good. I was sleeping 7.5 hours-8 hours a night life was golden….NOW I am somewhere between zero and 1.0 which is NOT GOOD, and I am sleeping anywhere between 6 and 7.5 hours. So yeah.. doctor wants the report to see if he can figure out what is going on.
Possibility is that my pain is just too high and that is causing me not to sleep well because I’m broken and between the knees, back and neck I just can’t get into a good sleeping position. The other possibility is that I need the settings on my machine adjusted again due to my weight loss. So weight plays a role in your settings I was at one setting, then I gained weight and I needed a different setting. Well now I’ve lost 100lbs so it’s possible that I need my settings adjusted again. So we’ll see what the report says.
Of course with surgery being so close nothing is going to be done until after surgery and I am recovered a bit. So we might be doing another sleep study after I am healed from that. We just are going to wait and see. I love being the patient everyone scratches their head over.
I have worked really hard to create good sleep habits for myself because of my sleep issues and I wear my cpap every night because I know overall I feel better when its on verses when its off, and hopefully we can get this figured out!
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.
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.
So for quite some time I only slept 7.5 hours. Now that wasn’t sound sleep, that wasn’t continuous sleep, but I would go to bed and I would wake up 7.5 hours from the time I went to bed. Didn’t matter what time I went to bed that’s when I would wake up (if no artificial alarm was set). So now that I am not working it seems that my internal clock has given me an extra 30 minutes since my blood clot issue. So apparently when you face off with death you get 30 extra minutes of sleep…HOWEVER I really don’t want to have to be that close to death every time I want some extra ZZZs I mean that was a really traumatic experience for my whole family for me to get a little extra rest.
So while I am really grateful that I seem to be getting 30 extra minutes of sleep yesterday I had to go to the doctor to discuss the whole Yeti in the bathtub situation and since I knew he would do blood work I didn’t make coffee so it would be fasting blood work. My appointment was early in the morning so that made it easier to fast. Well by the time I did the doctor’s appointment and got the blood work and then ate brunch it was too late for a cup of joe and not thinking about that I hadn’t had my daily dose of caffeine I had lemonade with lunch. I don’t drink soda because it taste funny because of one of the medications I am on, however if I had been thinking about the lack of caffeine in my life I would have drank a small amount of caffeinated soda just to give myself something and then drank the lemonade. I had thought about drinking tea, but due to the blood thinners I have to be careful about drinking green tea.
So much of my life right now is dictated by medical conditions and medication. I can’t eat this because of medication, I can’t do this because of medical condition but it doesn’t get me down..well most days! I really do try and focus on the positives. I try and focus on the stuff I still can do. I try and focus on the stuff I can change. I think of the Serenity Prayer
God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
I can accept that there are a lot of medical issues going on right now, I am working on losing weight to help improve my health (changing what I can), I am taking the medicines to help control the symptoms and going to all the medical appointments and know that I am not a doctor…not even on TV.