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Yes, still tired

I think I mentioned before that my endocrinologist told me that I may have to just accept that I will be chronically fatigued. I didn’t want to accept that and still don’t. It sort of sucks to know that no matter what you do, you’re going to be tired. You’re going to wake up still tired. It’s exhausting to know that.

I met someone yesterday who recommended nutrition function/response testing. There’s nowhere to do it here, so it’ll have to wait until I’m in the US. She highly recommended it, saying it made a HUGE difference for her in how she felt, how much she weighed. She’s a competitive bodybuilder though, so we are working from a different baseline. She did say that her mom, who has RA, found tremendous relief. It’s woo-woo, but I’m going to give it a try when I’m in Florida.

Anyway, this week has totally kicked my ass. I needed to be at the doctor on Sunday by 9. I was late, but that was okay because they didn’t have me in the system (they put me in for this coming Sunday instead), and the doctor wasn’t even there. I had book club that morning so I went back at 1:30pm to see the shrink and get my crazy meds. I think I got home around 3pm.

Nothing on Monday, but I think I started cleaning because I knew I wanted to move furniture. Tuesday was a board meeting that started at 10am and I got home around 1:30 or 2. Then I did move furniture around. I put a tabletop on my bad foot. It still hurts, but not as much as it would if I actually had feeling in most of my foot.

Wednesday was a delicious lunch at The Melting Pot and then back home around 3. I watched The Looming Tower with Mr. Lyndsy and then stayed up to finish cleaning up the second bedroom because we had someone coming to clean today. Between that and the addictive phone games I play, I was up super late and had to be up way early for me so I could let the AC repair people in. I have to say, when you live in the hot ass desert, the AC repair guys are the most valuable people you will ever find. Of course, one of their fixes didn’t work and the living room AC isn’t actually blowing cool air. They’ll be back. (We also need someone to come fix the hot water heater in the kitchen since it’s leaking from a place I can’t find, there’s a leak in the sink in the kitchen, and there’s a leak of unknown origin in the bathroom. It’s not good.)

This morning I needed to be at the mall in case new people came to join our group. Usually a couple other people come and hang out, but I was there by myself today, which was actually okay because I was tired as fuck and had things to work out in my brain, to-do lists to create, and I love people watching. It’s creepy when you’re with people and you’re people watching other people, unless your companions are also creepy people watchers.

But now, now I’m tired. I need a nap. The thought of doing anything productive is basically just causing me to seize up. I have made more progress on my newest cross stitch, I’ve read more of The Zookeeper’s Wife, and I’m making more progress in listening to East of Eden. What I have come to realize is that I am not a fan of John Steinbeck books. I cannot get into them. I started East of Eden reading, and I knew there was no way I was going to be able to get all the way through it if I had to read it all myself. So I borrowed the audiobook from the library and now have it on 1.75x speed. For about 14 hours I had to keep it on regular speed because I couldn’t follow the voice. Now that I’m more used to it I’ve cranked it up. I only have like 11 hours to go. (HOW DOES ANYONE WRITE A 26 HOUR BOOK??)

I can’t imagine what my life would be like if I were trying to work a traditional 9-5 office job. Between being at work and traveling to work, I think I’d be dead every day I got home. My body’s just like, ‘WHOA! Hey now! Let’s not overdo this.”

I did move our “dining room table” into the bedroom and have created a desk nook so that maybe sometime soon, I can try to work “normally.” I expect it’s going to be painful and exhausting, but I want to try.

Maybe.

Maybe not.

Really, probably not.

 

Trouble getting going

I feel like I’m trapped in molasses right now. I think I want to do things, but actually getting up and doing them is challenging. I did make cookies today, which surprised me, since I haven’t been able to get up the will to do it the last couple of days. This may have happened because I was hungry, and haven’t gone grocery shopping since I got back.

I’m really struggling with the WILL to do things as well. So I guess it’s sort of like a two-phase problem. There are some things I don’t have the will to do, and others that I want to do, but feel stuck.

I’m also not really able to sort of stick to goals I’ve tried to set. Like blogging. I try to do it three times/week. Clearly that hasn’t happened recently. I get busy and this gets dropped by the wayside. Knowing that I want to do it, I should plan for it, but I don’t. On Monday I had a meeting that I needed to be somewhere from 8am-1pm. Then I wanted to go to the doctor, but got sidetracked by something else, and didn’t get back from the doctor until after 7:30pm. By then I was pretty spent for the day.

I guess the real problem is that I don’t treat the things I want to do seriously. Part of the problem with working from home is that the day doesn’t have the structure that working from an office does. Things sort of just slide around. When I worked from an office, I knew that I had X amount of hours when I got home to get things done. I felt some pressure, and that encouraged me to do what I wanted.

Now, the days just sort of slip by. Before I know it, I’m as tired as I get, and I crash. It doesn’t help that I’m tired throughout the day as well. I suppose constant fatigue can get in the way of goals at times.

I am working on getting the fatigue issue sorted out. I saw an ENT the other day and learned that my nose is blocked – so I’m not getting the right amount of air in. We’re trying a nasal spray for two weeks and will see where I’m at, maybe do a sleep study. At this point I would love to have some energy during the day to get things done and feel like myself again. I hate feeling wiped out all the time. It’s gotten old.

Perhaps I should cut myself a little slack.

Done

I’m done. I think I probably hit this point a few weeks ago, when my irritation with everything lasted for days. I woke up irritated.

I don’t really know what it is. Mr. Lyndsy and I have been apart since August 10, but we’ve been apart this long before. That could still be it.

I’m not sleeping well either. But that’s nothing new. Maybe it’s catching up with me.

I can’t string together many non-irritated days anymore. That’s problem.

I know that irritation like this can be a symptom of anxiety. Unfortunately I can’t walk around stoned on Xanax all the time though I should consider it for the next few days until I’m back with Mr. Lyndsy.

I don’t like being irritated by everything. I don’t like not wanting to be around people. But I can’t be nice when I’m like this. And I’d rather not do and say things that will upset people.

Being me is hard sometimes. I don’t think all my pieces work particularly well together. An extrovert that can’t be around people nicely? That doesn’t work.

I have been exhausted lately. So much I want to and need to get done before I eventually get on a flight back to the sandbox but I just want to sleep or lay in bed. I’m tired of being tired.

Ugh.

I guess I have to keep working out

I work out 6 days a week. Sunday is my rest day (right now anyway, that will probably change when I’m back in the sandbox).

What I have discovered the past 3 Sundays is that I sleep a lot on rest days. Like, not up and moving until after 1pm. When we were driving back on our road trip, I slept while Mr. Lyndsy drove.

Mr. Lyndsy doesn’t see anything wrong with this. It is, after all, the rest day. He believes I should take it to rest. I don’t like that I’m doing it. I feel unproductive and tired. He said, “Join the club.” I guess he’s exhausted on his rest days too. The problem is that it’s not like I have much to do. He goes to work and his job is both physically and mentally engaging. I don’t have that.

What dawned on me the other day though is that this is exactly what happened before we started working out after getting back to the U.S. In the sandbox I’m not up until 1pm or even later some days. I’m only up in the mornings for doctor appointments or group meetings. If I don’t have anything to do, it is almost physically impossible for me to get my body moving. Even on previous trips to the US, I wasn’t up until 11am.

Before I considered what was happening on the rest days, I was excited! I thought I’d beaten whatever was keeping me trapped in bed. To say that I’m disappointed is an understatement. I suppose I should be focusing on the fact that working out DOES get me up, but when you’ve got as many medical conditions going on as I do, it’s nice to think you’ve conquered something and can take it off the list.

I still feel fatigued during the day, every day. Some days are better than others. I still think this relates to the lack of quality sleep I have going on. I’ll investigate this when I’m back in the sandbox, but it’s something I can think about and research in the meantime. I may as well go back to my doctors armed with as much information as possible.

My shrink told me that if the meds make me tired, I should let my body rest. But we have since changed the medication and I’m on an extended release form. That should have alleviated the problem of oversleeping. Now that I suspect I’m not getting quality sleep, that changes the equation. At least in my opinion. But what do I know?

I really want to try to work out the best possible scenario for myself. I’m tired of being fatigued. I’m tired of being distracted all the time. I’m tired of not being able to focus. I like that my mind explores loads of different things and makes connections in lots of different ways, but at the same time, standing up and not remembering why is very frustrating.

At any rate, working out is now more important than ever for my health and my life. While I was committed to it before, my resolve is even stronger now. 

Fatigue is a TOTAL DRAG

I know I’ve mentioned before that fatigue is one of the symptoms of fibromyalgia, diabetes, thyroid issues, lupus, etc. Since my thyroid and diabetes are under control, I suspect it’s not them. It could be the lupus. But the most likely culprit for the cause of the fatigue is fibro.

I don’t know what’s going on, but the last few weeks have been *really* bad. I downloaded and app for the AppleWatch that tracks your sleep for you. I figured that I’d have some issues since I know I don’t sleep particularly well – I wake up a lot, I toss and turn (can’t figure out why), but I didn’t expect that it would be this bad.

From the output, my deep sleep ranges anywhere from NO DEEP SLEEP to no more than 45-50 minutes usually. Most people need/get 2 hours of deep sleep.

This wouldn’t be a problem except that deep sleep is the restorative sleep. This is the time your body takes to heal itself. Because my body isn’t really getting a chance to do that, I’m constantly fatigued. I have pain. My brain is sluggish.

I tried using binaural beats to help induce delta waves, but that had limited results. It doesn’t help that right now I’m at a hotel with a crappy bed that’s way too small for me and Mr. Lyndsy to share it comfortably. Perhaps when I’m back in my bed and I have space, the binaural beats will have more of an effect. I hope so anyway.

When I’m back with my own doctors I will definitely be chatting with them about this. I’m sure (read: I hope) they’re all familiar with the necessity of deep sleep. I have no idea what the plan may be to correct it though. I’m not sure that my shrink will want to prescribe any kind of sleep medication since I’m already on an anti-depressant that’s supposed to be addressing it. I’m not also not sure that’s the correct solution since I do fall asleep and I can stay that way for 8 hours. (I think that’s a side effect of exercising 6 days/week.)

I am desperate to find a solution because I’m pretty sure at some point the body just shuts down when it’s not getting the time it needs to heal. At this point I can’t afford to have any more health issues. I have enough trouble managing the ones I have!

This is something I was thinking about the other day. Currently I work part-time from home, but at the point we move back to the United States (if we do), I may have to go back to work full-time outside the home. Right now I don’t think my body could do it. These days I’m not really taxing my body and mind the way working full-time does. Sitting at a desk for hour after hour while typing causes an immense amount of pain in my upper back and arms as well as my lower back. Additional pain will only exacerbate the brain fog.

I have a friend who has been going through the Social Security Disability process. Her doctor said something that has started to resonate with me: Her main job is to manage her illnesses.

At the time she shared that I didn’t understand what that meant. Now I have a better idea. I work out which keeps my body pretty stable and I sleep better when I work out (which isn’t saying much, apparently). I rest when I need to so that my body doesn’t collapse on me. I eat better, which is probably helping my body – giving it more energy for the workouts which are helping me sleep better.

But until I get all, or as many as possible, of my health issues worked out, working more isn’t a possibility. My focus right now HAS to be on getting things under control. They just aren’t right now. I’m working on it, but I’m not there yet.

And that’s okay. These are BIG issues for me. They take time to resolve. There’s just no way around that. Organs are being affected. My musculoskeletal system is involved. My brain is a little fried right now.

So right now, my priority is my body (or, as it is now known, My Preciousss). Once I get my body better sorted, I think many other things will follow.

What was I doing?

Between the lack of sleep on Saturday night and staying up over 24 hours on Sunday (we flew back in time), I was a little wiped out when I got up today. I think I got a decent amount of sleep and it wasn’t terrible sleep. But it just wasn’t enough.

I have spent the entire day forgetting from one second to the next what I was doing. I’d pull out my phone and forget why. Or, I’d pull it out, get distracted by a notification, handle it, and then put the phone down. I slurred words a bunch. I forgot what I was saying in the middle of a sentence.

My brain is done. I think this has happened to me before, but I either didn’t really notice or was too overwhelmed with something else to care. Today it was incredibly frustrating. I should have realized much earlier on in the day that trying to do two things at once was a bad idea. Instead, I continued to try to multi-task. Fail.

I’m hoping a nice restorative sleep this evening will save me from myself tomorrow. I hope this isn’t a new, long-term problem for me. I don’t think I could handle it!