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My Body, My Choices

Bodies are complicated things. No two are alike and the different combinations of things means that even when there are similarities in diseases/symptoms, how they interact with each person can vary wildly. However, that doesn’t change the fact that what we each have going on affects how we deal with the world. And each of us individually knows our bodies and interactions better than anyone else. I want to share what MY body is like and how it affects ME every day. I figure I’ll just start at the top and work my way down.

MY BRAIN
Problem
: My brain isn’t wired to function in a neurotypical society – ADHD, depression, anxiety, insomnia
Effect: Working in traditional 9-5 jobs without flexibility is a nightmare. Without medication, I have trouble focusing for any length of time, I am easily distracted, and often forget what I’ve just said or just been told. I grew up believing that to be loved and accepted, I needed to accept that things were my fault, that monetary success was THE key to happiness, as is thinness and conforming to beauty norms. My depression and anxiety feed off this and send me messages, every day, that my inability to be neurotypical means I’m a failure. That my physical ailments, over which I have little control, have left me in a position where I will *never* be successful or happy. I take two antidepressants, an anti-anxiety medication as needed, and a medication for the ADHD so I can focus. I also have trouble falling asleep – my brain races and will not let me fall asleep, no matter how physically tired I am.

MY FACE
Problem: Deviated septum, maxillary sinus blockage, turbinate hypertrophy
Effect: Inability to breathe well through my nose, chronic sinus infections, poor quality sleep. Sleep is when the body and brain have a chance to recharge and heal. Because I can’t in oxygen, I get crappy sleep. Crappy sleep means I don’t heal. Additionally, it makes running and other cardio exercise difficult. I just had surgery to correct these problems, but I am still in the recovery period.

MY IMMUNE SYSTEM
Problem: My immune system mistakes my healthy tissues for invaders and attacks – Lupus, Hashimoto’s thyroiditis, Type 2 diabetes
Effect: Probably the biggest and strangest thing is that I am basically allergic to the sun. I develop a rash on my face which eventually feels like it’s on fire if I don’t remove myself. Repeated sun exposure also leads to rashes on my arms. The sun is a source of Vitamin D which gives us energy. I have to take a supplement to get to normal levels. More annoying than being allergic to the sun is the constant fatigue. The thyroid regulates a ton of the body functions through thyroid stimulating hormone. My body thinks that my thyroid is an invader and attacks it, causing pieces of it, with the hormone to dump into my body. This causes all sorts of fun problems like menstrual irregularities, fatigue, feeling too hot, not being able to cool down once I get warm. I’ve had to alter my diet to avoid overloading my body with sugar which can cause fatigue and brain fog. Lupus also causes small joint pain in my fingers and toes.

I’m pretty sure that the root of many of my problems is Lupus, which should have been diagnosed when I was younger. It causes reactions to antibiotics that appear allergic, but aren’t. I had such a reaction at 4. I think had it been diagnosed, I may have been able to get treated earlier (instead of starting last year) and I may have been able to avoid the thyroid issues and diabetes. There is also some concern that my kidneys are being affected.

MY MUSCULOSKELETAL SYSTEM
Problem: A developmentally narrow spinal canal and nerves that don’t fire appropriately – Spinal issues and fibromyalgia
Effect: Widespread body pain that comes when it feels like and stays as long as it likes. This includes pain in my upper back, shoulders, wrists, hips, and knees. It can be triggered by stress, food I consume, and trauma (like surgery). Because my spinal canal was small, when I herniated discs, I was in extreme pain as they pressed on nerve roots. This led to two back surgeries, the second of which was a spinal fusion in the lumbar region of my back. I still have some lumbar issues and have pain on certain activities. Additionally, a complication of that surgery was that I woke up with foot drop, the inability to pick up my foot. Bad physical therapy further damaged my leg. This led to a tendon transfer, which gave me the ability to pick up my foot, but has probably caused hallux rigidus in my big toe so that it doesn’t have the range of motion it used to. I also have nerve damage so I cannot feel most of my big toe on my right foot or my second toe. I also have joint pain in the metatarsals of my right foot. I take an antidepressant to subdue the widespread body pain and occasionally other medication for acute joint pain. Fibromyalgia also causes stomach issues like IBS. I have to very careful what I eat lest I have a horrible stomach reaction.

MY REPRODUCTIVE SYSTEM
Problem: Irregular menstrual bleeding and hormone issues – uterine polyps and endometrial hyperplasia, PMDD
Effect: From about 2002 until I had my uterus removed this year, I had irregular menstrual bleeding. This was prolonged periods and/or heavy periods. Sometimes I bled 20+ days/month, another time I bled straight for 90 days. This is challenging to deal with mentally and physically. Never knowing when you may start bleeding and how strong it may be makes planning things difficult. I would go to the bathroom at work to discover that I had ruined yet another pair of pants. Additionally, I have PMDD, which is essentially PMS on steroids. It affects people different ways – I get slammed with major depression and anxiety. I hoped that having the hysterectomy would lessen the effects, but that hasn’t been the case.

So you’re thinking, okay, but what does that really mean in terms of your life? Best thing I can do is run you through a typical day.

11:30am-1:30pm: Wake up. Feel bad about having slept so late and letting the day get away from me. Think about how I will never really be a financial contributor to my household if I can’t manage to get up earlier and be more productive. However, body is wiped out and still doesn’t want to get out of bed, even though I am awake. It usually takes me 20-30 more minutes to get up and moving. Also, I probably didn’t go to sleep until 3am or 4am and woke up several times in the night, so even though I’ve slept many hours, I’m still fucking exhausted. I do not feel refreshed.

I drag myself out of bed and take my thyroid medication. It needs to be taken 30 minutes before I eat anything else. I then think about what I’m going to eat. My stomach is usually pretty sensitive when I wake up, so I debate for a while what I can eat that won’t make me feel sick. Sometimes I eat, sometimes I don’t.

I hop on the scale to see where I’m at and how my body is processing what I’m feeling these days. Lately I’m down in weight because the surgeries ruined my appetite. Regardless, I see my stomach in the way of the numbers on the scale and reflect how fat I am. Now not eating anything doesn’t seem like the worst idea.

Since I’m still tired, I get back in bed with my laptop and check email and social media. Since I currently do direct sales and work from home as a lawyer, I handle those emails. Unfortunately, I get distracted by 17 other things and can’t remember what I started out doing. Eventually I remember, but beat myself up for getting distracted in the first place.

Mr. Lyndsy comes home for lunch and I feel bad that I haven’t made him lunch, done the dishes or anything else related to the house. I know that after the surgeries I’m not really supposed to, but since I’m the one who is in the house all day, I feel responsible. I do know that he’s an adult and can handle making his own lunch, but like I said, I feel bad that I’m home all day, making very little contribution to our finances, so I *should* be doing more around the house.

I see doctors pretty regularly, especially since I currently have some surgery complications and follow up, so I throw clothes on and head outside, praying the sun is hiding. It’s gotten cooler here now, but I get warm with a lot of movement, so I hope I’ll be okay. During the warmer months though, simply getting from the apartment to the Uber makes me hot and I take hours to cool down. This takes longer if I’m out grocery shopping or moving a lot. My body is usually in some form of pain at this point as well. Sitting for any length of time causes lower back and hip pain. My stomach may be aggravated as well, so I’ve probably made several trips to the bathroom. These days though, I can’t tell when I need to poop, so it happens after I’ve started experiencing some type of stomach discomfort.

Once I’ve finished whatever I’ve been out doing I am usually worn out. I started the day exhausted and fatigued and nothing I’ve done has lessened that any. I am grateful to get home and crawl back into bed. I wait for Mr. Lyndsy to come home. He is usually home around 6pm, which is our dinner time. I realize I haven’t done anything to prep dinner. He’s also usually pretty tired, so we end up not actually making anything and either ordering out or eating something like a sandwich or just crackers. Yesterday, for example, I ate yogurt for breakfast, pineapple for lunch/dinner, and rusks and cookies for a later dinner.

Mr. Lyndsy usually falls asleep around 9pm. He’s up early and since he also sleeps poorly is pretty constantly fatigued. By this point in the day I feel pretty bad about myself. I have done nothing to contribute to the household. I’m tired. I’m in pain with a sinus headache, body pain, I feel too warm. Yesterday was a banner day because I was also emotionally done. The PMDD was in full gear, exaggerating all of the usual depressive and anxious messages about my lack of self-worth and inability to provide value to the world. This is when I start to serious consider that perhaps I would be better off not living anymore. I hurt all the time, I don’t provide value, and there doesn’t appear to be an end to it. Why live like that? Is that really living? Maybe it’s time to just let go.

That may seem like an extreme reaction to you – after all, this stuff isn’t my fault. I don’t make my body attack itself. I don’t control the wiring in my brain. The problem is that I remember I lived a different way. At one time in my life, I felt like a fucking rockstar.

I USED TO BE A BAD ASS
In my last semester of law school I worked as an extern at a large prosecutor’s office. One of my professors was an adjunct faculty member and he was a senior deputy prosecuting attorney assigned to their homicide division. He encouraged me to do the externship and work with him. At the time I didn’t have any interest in practicing law, but 4 credits not stuck in a classroom sounded like BLISS.

Well, it was the perfect match for me. The prosecutor was so impressed with the work I’d done as an extern that he convinced the elected prosecutor to hire me for a job that didn’t actually exist. He was prosecuting a quadruple homicide at the time and it was a capital murder case. He wanted MY help with it. Yes, me. A 24-year old who just graduated. To put it into context, he hated trying cases with anyone. He only did it if the office made him. So, that’s a massive compliment to me. The elected prosecutor agreed.

For the next three years I worked a ridiculous number of hours on the case. I was a full-time graduate student during 2 of the years. I know at one point I worked 28 days straight, probably 10 hours per day. Otherwise I maybe didn’t work on Sundays. I worked alongside local police and fire departments, the state patrol crime lab, leading DNA experts, and an ATF task force.

And I wasn’t just an errand girl. Yeah, sometimes I ran and got coffee and lunch. But after the jury returned its final verdicts (guilty and for the death penalty), we chatted with them. Turns out some of the evidence they found most compelling was evidence I’d uncovered through research or things we discovered because of an insight I’d had. (For example, by reviewing photographs of the defendant, I realized that some of the injuries on his neck weren’t scratches, but were ligature marks left by someone pulling on his chain necklace. The necklace was sent for DNA analysis and the DNA of one of the victims was found on the chain.) Don’t get me wrong, it wasn’t that I’d single-handedly done anything. My boss is a master in trial. He had the vision, I just helped him execute it. He’d tell me he wanted the evidence presented in a certain way, and I found a way to make it happen. After it was all said and done, he said he couldn’t have done it without me.

AND NOW
I can barely get out of bed some days. I have trouble focusing long enough to read a book and follow it. I can barely do 8 hours awake, let alone 8-10 hours of work and travel. I fight the demons in my head most days. I don’t feel like I add value to the world.

There may come a time when I decide I’ve had enough. It will be at a point where it’s clear that things won’t change or will only get worse. People often think that a person’s choice to end their lives is a rash decision. At least for me it wouldn’t be. I know what I was and what I am now. I know what feels like living and what doesn’t. No one else gets to make that call for me. Also, there isn’t anything that someone could say or do that would affect my decision. I live in this body and mind every day. I know that when it’s done, my energy will return to where it came from for someone else to use and change the world. That’s okay with me.

My nose is full of… stuff

Last Sunday I finally had the septoplasty, turbinate reduction, and maxillary antrostomy. For those playing at home who aren't doctors - the cartilage in my nose was crooked, the bubbles that humidify air when we breathe in through our noses were too big, and the openings to my cheek

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When to make a change

Sometimes I like to torture myself by thinking about what I’d be doing with myself if I felt well enough to work like a normal person. If I could be doing anything, what would I do?

I do direct sales. I picked what I did because I like the products. However, I think I’m a shitty salesperson. I hate feeling like I’m pressuring anyone into anything.

What I’m thinking about now is whether to give it up. I’m not really making money at it, but that’s probably because I’m not really working them. I’m not looking for new customers for the products. You can only sell to your warm market for so long.

I don’t know if it’s that I don’t know how to do it or because I’m not committed to the sales part of it. For my main company, I love the product. I live in it. But for some reason it’s not translating into sales well.

Do I give it up? I’ll have to hustle to even be able to do that, but should I move on that course? Did I just put myself in a weird position because I’m not around the product all the time? It’s hard when I can’t go to vendor events because I’m just not in the country.

Ugh. Being an adult is such a crock of shit sometimes.

It’s also never a good idea for me to make decisions when I’m not feeling particularly well. I just want to give up EVERYTHING when that happens.

Part of the issue is that I’m focusing on getting my health in line right now. That is, without question, my number one priority. Without my health being as good as possible I’m just kind of miserable. Feeling like that makes doing anything fun really hard. Being tired makes doing things hard.

I guess I shouldn’t make any decisions until I’ve exhausted (see what I did there), every possibility for making myself feel better. It’s like not going grocery shopping when you’re hungry.

Thanks, friends, for listening while I ramble.

I hate doctors: Part 76,589

Y’all know about the troubles with my uterus, so I’m not going to go into them again, except to add that this summer I had a 90-day stretch of bleeding WHILE ON PROVERA. Yes, you read that correctly – NINETY DAYS.

And for funsies, 10 of them were of the “how am I still alive to bleed anymore” variety. So yeah, that was fun. I was good and kept going to the gym, but not without nearly destroying a ton of my workout pants.

Anyway, I’m desperate to get rid of my uterus. It’s been the bane of my existence since 2002. I “became a woman” (God do I HATE that expression) in 1995. That means that for 7 years things were fine, and for the last 15 they have been absolute shit. Just complete and utter shit (not unlike Trumplestiltskin).

I figured, what with 90 days of bleeding, the doctor would agree that shit is really fucked up and it’s time to just get rid of the damn thing. At a minimum I expected that we’d at least follow up and make sure that the endometrial hyperplasia is gone (that was my diagnosis after the D&C).

Well, there’s a new head consultant in town and he doesn’t think the endometrial hyperplasia is a big deal. Uh, what? That seems like something we should follow up on since it causes an increased risk for cancer (not a huge risk, 1%, but I’d still like to just make sure).

Not only will we not follow up on that, he just wanted me on more drugs to deal with the heavy bleeding. Hormones haven’t really worked for me in the past (see above re: 90 days of bleeding while on progestin), so I’m not sure why he thinks that would fix things.

We went round and round about the Mini Pill or an IUD, neither of which I want. So then we chatted about a hysterectomy. We chatted at length. “You don’t want kids?” “No, I don’t.” “What if you change your mind?” “I won’t.” “Well, hypothetically, people can change their minds.” “Yes, I agree with you. But I’m me.”

I explained all the reasons I don’t want my uterus: My body can’t sustain a pregnancy, I’m like quadruple high-risk (diabetes, thyroid issue, lupus, age), I have mental health conditions that are heritable and I have NEGATIVE interest in passing them on, even if the chance is slim.

He went on to tell me that it could be a complicated surgery. Yes, thanks, I get that. I’ve had a SPINAL FUSION.

My favorite part was this exchange:

Doctor: I cannot make you take treatment you do not want.
Me: That’s true.
Doctor: Similarly, you cannot make me do a treatment I do not want to do.
Me: That’s also true.

So we hit an impasse. I didn’t want what he offered and he didn’t do what I think is best for my body.

I got so frustrated I cried.

This guy could not let go of the fertility aspect. Even though he asked me at one point, “You’re 36, don’t use contraception, and you’ve never been pregnant.”

HOSTILE UTERUS, DUDE. GET WITH THE PROGRAM.

Seriously though, this was a waste of an hour of my time that I am not going to get back. He HEARD me but he damn sure wasn’t LISTENING. I have had major problems for FIFTEEN YEARS. YEARS, my friend. And that’s enough?

The fact that I’m telling you how much it impacts my life to bleed heavily and for extended periods of time isn’t enough. I made him well aware of the list of other conditions I have. Did not matter.

Ultimately he passed me off to another doctor to talk about an endometrial ablation. I left unsatisfied because I was pretty sure that wasn’t the answer. Some research later, it’s definitely not. I’ll still meet with that doctor and see if I can convince her of the validity of my choice for a hysterectomy.

If she can’t help me, then I’ll talk to someone else. And if they don’t work, someone else. I will go until someone is going to fucking listen to me and UNDERSTAND where *I*, their patient, am coming from.

 

 

 

My fibro isn’t Lady Gaga’s fibro

Lady Gaga has fibromyalgia. I’m sorry for her. Having fibro sucks.

And apparently people are now talking about fibromyalgia. This is GREAT. A lot of people, doctors included, don’t think fibro is a real thing. They think it’s all in the mind or some bullshit like that. It’s not. Functional MRIs can now show us that fibromyalgia is a real thing. In case you don’t believe Lady Gaga, here are 15 other celebrities who have it.

What concerns me about Lady Gaga sharing her experience is that people are going to hold her up as the model for fibromyalgia, and compare the rest of us to her.

It’s not fair to say, “Well, Lady Gaga swings from a trapeze while singing during her shows and she does shows all the time. Why can’t you come to a party?”

That’s not how chronic illness works.

First of all, fibromyalgia is characterized by three main things: widespread musculoskeletal pain, fatigue, and localized tenderness. How strong each of these is and how often they affect someone depends on the individual. There are an estimated 5 million people with fibromyalgia, so you’re basically looking at 5 million different cases with different symptoms.

Second, a lot of people with fibromyalgia have other chronic health issues. That’s right. As if having fibromyalgia wasn’t crappy enough, we get hit with more. Take me, for example. I have lupus, Hashimoto’s thyroiditis (which may be an expression of the lupus), anxiety, depression, Type 2 diabetes, IBS, and chronic back/leg pain (after a spinal fusion that went kind of wrong). All of these affect my “activities of daily living.” So even if fibro isn’t kicking my ass on a given day, something else probably is.

Third, medical things aside, we’re all VERY different people. We have different expectations for ourselves, different lifestyles, and different life situations. Lady Gaga and Morgan Freeman and whichever other celebrity has fibro are all in a completely different place financially than I am. They may have help to do things that I don’t have – someone to clean their house, someone to do their hair, someone to drive them places. Us normal fibro sufferers have to weigh the costs of our actions against our plans for the day and week. If I know that I have to do laundry, wash dishes, and vacuum, I know that I’m not doing much else that day. Those individually cause pain. Together they’re a nightmare.

So yay, fibromyalgia is getting some attention. I just hope that people do research on it and don’t just assume that it’s the same for all of us. Because it’s not.

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Feeling like a burden (Spoonie Life Complication #3)

A few months ago I got stressed out which led to a horrible back spasm. I tried to fall asleep, but was kept awake by the pain. It was so bad I actually had tears in my eyes. I couldn’t find any position in which I was comfortable. I hemmed and hawed about whether to wake up Mr. Lyndsy. I posted about it on social media – asking whether it was okay to wake him up.

Overwhelmingly the answer was “Yes! Wake him up!”

But I still didn’t do it until a time when he might have been up anyway. (Obviously he wasn’t awake since I had to wake him up, but it was after 7am when he’s usually up.)

Once up he put some ointment on my back to try to soothe the spasm, but it didn’t help much. A little while later we headed to the doctor to get some drugs that would actually help.

Mr. Lyndsy was upset I hadn’t woken him sooner. People online were surprised I didn’t wake him sooner.

Here’s the thing, I constantly feel like a burden already. I didn’t want to be EXTRA burdensome by disturbing his sleep.

Spoonies, even those with the most supportive partners, often feel like burdens because we can’t do all the things we think we should be able to. Some of us can’t work full-time like we used to. Others can’t help keep the house clean or cook. These things make us crazy. We try to do what we can, even to the point of hurting ourselves, but we rarely feel like it’s enough. (Occasionally this is made worse by outsiders who add their commentary about how bad they feel for our partners, having to pick up the slack.)

We try to be as un-needy as possible all the time. We minimize pain we’re having or hide it altogether. We just don’t want to burden those we love.

So when something happens that we believe is going to be an additional pain in the ass, we’re indecisive about what to do. Can we manage on our own? How much should we try before we go to our partners? What’s the pain point that we really just can’t take it anymore?

That’s where it has to get before we’ll reach out. Especially if our partner is doing something they really enjoy, like sleeping or playing video games or out with friends.

It all comes back to the fear that one day we’ll be too much for someone. One day our partner will hit their breaking point and that will be it. So rather than push it to that point, we do everything we can to be as self-sufficient as possible. Because we believe we’re already a weight on our partners’ backs every day.

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A Food Challenge

Mr. Lyndsy left yesterday. After 40 fun days in the US he’s back in the sandbox. And I’m here. Without him.

However, he made our separation interesting. He told me that while we’re apart, I should work on eating better. I’ve got the working out thing down, but the next part is to change my food habits. This means eating fresher foods, avoiding processed foods, things high in sugar, and not too many carbs (especially the simple ones).

I know he’s right about this. That doesn’t mean I want to do it. Because you know, M&Ms, cupcakes, soda.

However, to not focus on us being apart and how much I absolutely LOATHE it, I decided it would be fun to see his reaction after I’d been at the gym for a month without him seeing me every day. It’s hard to see changes when you’re around someone every day, but a month? That can be quite a long time when you’re putting in the work like every day.

Eating better just ups the chances that the changes will be that much more dramatic. Which makes it exciting. Of course, I am NOT a patient person so when I hop on the scale tomorrow I’m going to pissed that I haven’t lost 10 pounds after just one day of healthy eating.

Yes, I know that’s irrational. But you should know that about me. I still believe unicorns.

Anyway, here’s to healthy eating for like 32 days. I’m looking at it sort of one day at a time. Because right now I’m hungry and all I can think about is candy.

FEED ME THE CANDIES.

I mean, I’m thinking about pineapple. Yeah, pineapple.

*I picked this picture because it made no sense. A pineapple just sunbathing on someone’s lawn??*

 

Layer by Layer

I’ve been working really hard this summer to try to learn as much as I can about my chronic health issues. As I’ve peeled back different things, I’ve learned more. One thing I believe I’ve learned is that I have ADHD.

Yes, I know, I can’t diagnose myself. No, I haven’t been diagnosed by a doctor yet. No, I wasn’t diagnosed as a kid.

It started with a Facebook post.

What struck me was “I literally cannot recall the words that just came out of my mouth.” That happens to me with alarming frequency. It also applies to text messages and instant messages on FB/Google. I’ll type things and have no idea immediately after that I wrote them.

However, it had never occurred to me that this was something that happened to other people. I always thought it was weird, but that was it. So I posted it and asked if it was really an ADHD thing. I was told it is.

Which led me to do some research on ADHD. It was then that I learned that I have a LOT of the traits: Inability to finish projects I start; delayed start on any project that involves a lot of thinking; impulsivity (mine is spending and eating); finishing people’s sentences when I can’t wait for them to do it. There were others, but these were the highlights.

I thought back to when I was a kid as well. I was never diagnosed, perhaps because I was always a good student. I LOVED school (until I hit high school). But, I was always a chatterbox. If a teacher didn’t re-direct my behavior I talked to other kids who were still working. In high school a Spanish teacher offered to just give me a B if I didn’t talk to anyone else in class. When something didn’t interest me, I didn’t deal with it. I stopped being a great student in high school because I was bored with school. High school was also when I developed a dislike for authority figures and was defiant.

I’m tired of being the person who doesn’t finish projects. I’m tired of being the person who can’t compete in direct sales because of my inability to make plans long-term for myself or follow through on them. I hate that I’m not controlling my spending and how it affects things I want to do.

I am REALLY tired of being distracted all the time. Of forgetting what I set out to do when I stand up. Of getting up to get water, and finding 30 things to do on the way. I want to be able to focus on things. I want to remember important things I need to do.

I won’t see my shrink again until September, but that doesn’t mean I can’t work on things in the meantime. I’ve borrowed books from the library on ADHD that include coping behaviors so that I can start NOW to do what I can to make things better for me. I have a planner that’s broken down into hourly segments so I can put myself on a schedule so I get things done. I’m using an app called Habitica to track my To-Do list so things don’t get forgotten (like paying bar dues). I’m going to start posting my goals where I can see them so I remember to do them. I’m very “out of sight, out of mind” and that’s a detriment.

I want better for my life. It’s going to take a lot of work on my end to come up with workarounds. But I’m tired of feeling like a failure, so whatever work it takes is worth it. I’d appreciate any positive thoughts you can spare and wishes of good luck!

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.