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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. 

4

The Kid I Cannot Have

I recently decided that I do not want to have kids. I resent that I had to make that choice.

You may be wondering, “If she resents it, why did she make that choice?”

My 35th birthday is in a couple of weeks. The statistics about pregnancy after that age are readily available and definitely not positive.

But that’s not why I don’t want to do it.

Mr. Lyndsy has pretty great genes. He’s 35 and in good health. He broke a vertebra in his back and an old ankle injury gets him sometimes, but he spends his days in activities with kids who are twelve years old and does pretty well. He still plays sports. His father is in his 60s and still VERY active. He’s smart. He’s funny.

I’m smart. I’m funny. But that’s where the good stuff ends.

I was born with a bad back, or so said the neurosurgeon who fused my spine. Even now I still have back issues, just located in a different place. I have chronic pain in my foot from the nerve damage and tendon transfer.

I have Hashimoto’s which causes my body to ebb and flow through periods of almost manic energy and then into a state of fatigue. I’m lucky to have an endocrinologist now who was willing to treat it with medication, but it took going through three doctors before him.

Even with the Hashimoto’s treated, I have to contend with fibromyalgia. Random flares of body pain and bouts of fatigue so oppressive I don’t want to get out of bed. When you do finally get out of bed to do something, brain fog kicks in and you can’t remember why you up in the first place.

Of course, that’s not the only reason I don’t want to get out of bed some days. Depression and anxiety also like to jump into the fray, further knocking me down. The commercials that say depression has a physical component aren’t kidding. The body aches and fatigue are on top of feeling like your soul has done a round with Mike Tyson.

Diabetes can be a result of lifestyle choices. But sometimes, when your body is under attack from a bunch of other shit, diabetes gets you anyway.

For shits and giggles my kidneys leak protein. They aren’t supposed to. We do not yet know why it happens.

Perhaps my favorite is that I seem to be allergic to the sun. Prolonged sun exposure (as little as 30 minutes) results in a butterfly rash across my face and bumps down my arms and into my hands.

I have walked on the edge of the ultimate blackness. Been in that place where dying seemed like a much better idea than living. I managed to walk away from the desire, but my kid may not be so lucky. And it hurts because I know that all of my love wouldn’t be able to save him or her from that edge.

I don’t want that for my kid.

I had 15 doctor appointments in one month. I had blood draws for probably 40 lab tests. I spent a lot of time going to and from the hospital for those appointments. I have spent 9 nights in the hospital. The place where you’re supposed to get healthy, but health is impossible when you can’t sleep because someone is coming in every hour or so to make sure you’re okay.

I don’t want that for my kid.

There’s a long ass list of foods I don’t eat anymore because they upset my stomach. I can’t eat some of my favorite treats, unless I’m willing to risk an explosion of diarrhea at the worst possible time.

I don’t want that for my kid.

Standing, walking, and sitting cause pain. Running is out of the question. Sports don’t happen. Theme parks require sunscreen and a hat, and even then my face feels like it’s on fire and my arms look like something out of a sci-fi movie.

I don’t want that for my kid.

So I won’t have one.

I feel like I’m making the choice any good parent would make.

That doesn’t mean I like it.

I resent the hell out of it.

But it’s the choice I have to make. For my kid.

 

Is winter over yet?

The short answer: No.

I’ve been in hibernation virtually and in real life for a while now. Got off Facebook for the most part, stalking Instagram but not posting much, skipping out on local events. The thing is, I’m tired. #spoonielife is hard. A lot of my time recently has been taken up by doctor visits. Since early March, I’ve seen a rheumatologist, gastroenterologist, nephrologist, endocrinologist, psychiatrist, and orthopedic surgeon. I’ve had vials of blood drawn for 40 different labs, 2 24-hour urine collection samples, a regular urine sample, and a fucking stool sample. I am determined to figure out what the hell is wrong with me – my stomach, why I’m so fatigued, the pain in my back and foot.

There’s been some progress and some stagnation.

Progress
The rheumatologist diagnosed me with fibromyalgia. I’d suspected that for a while, but knowing that I’m not fucking crazy for thinking it is particularly delightful. Unfortunately, he wouldn’t give me any meds for it due to some kidney issues.

That turned out not to matter because I went to see a shrink to deal with the continued despairing thoughts I was happening. Those led to anxiety. I couldn’t deal with it anymore. I just wanted to cry all the time. I couldn’t deal with it anymore. The depression was killing me. The shrink is nice and is definitely invested in helping me feel better. She put me on Cymbalta, which will deal with the mood stuff, but is also used to help he chronic widespread body pain associated with fibromyalgia. There aren’t words that would accurately convey how happy I am that the fucking pain is mostly gone. It was making me insane. She also gave me something to help me sleep better.

I found a new endocrinologist because the last one was a raging fuckhead. The new one listens to me. He was willing to put me on thyroid medication to see if it would help with the fatigue (since I’m doing everything else I can to try to treat it). He didn’t think it would, but I feel differently. At least he was willing to try. He’s got me on a new diabetes medication which he said might help with weight loss. I’ve been doing some on my own anyway since my diet has changed, but I’ll take the help I can get.

My stomach issues have pretty much been resolved! I’m no longer running through stores and malls, praying I don’t shit my pants! The pain in my upper right quadrant is gone! The price I’m paying for it though is a restricted diet. I suppose I can start adding things back in to see what’s bothering me, but it’s almost not worth it. I don’t really miss the foods I’m no longer eating (apples, pears, soda, legumes, gluten). Sometimes I indulge, but it’s usually a pretty minimal indulgence. I bought a candy bar since I was feeling deprived, and I just didn’t enjoy it. I’ve definitely hit the point that if it’s going to make me feel like shit, I don’t bother. (Damn you, ice cream!)

Stagnation
My back still hurts. I had a spine doc look at my back MRI but he didn’t see anything in it that would be the reason for my pain. That frustrated the hell out of me, but he said that he thinks it could be the sacroiliac joint. Great. Something new. He referred me for physical therapy, but it takes a while to get in, so I’m going to wait until Mr. Lyndsy and I are back from our summer away. Hopefully that works. If it does, he said we could talk about steroid shots or a possible fusion. After my experience with the lumbar fusion, I’m not keen on fusing anything else, but we’ll see.

I have had continued foot pain as well. That’s frustration since I am traveling with my mother to London and Paris in June and I know we’ll be walking a lot. My foot despises walking, which blows since that’s pretty much its reason for existing in my life. I had an MRI done of my foot. It was ridiculous uncomfortable since I can’t really point my foot and my knee was rammed into the top of the machine. It also didn’t tell us much except that I have inflammation at the base of my second toe. Great. Fucking great. The ortho thinks that it’s probably referred pain from my back (which other doctors have ruled out after looking at my back MRI), but he’s going to do a steroid/pain relief injection at the base of the second toe once it’s been approved by the insurance. I hope to God that fucking helps because otherwise I will cry.

My Achilles tendon is still giving me problems as well. The shockwave treatments don’t seem to be helping. I think the last one made it worse. I have one more scheduled and unless they think more will make a huge difference, I think I’m going to quit doing them and find a way to just live with that pain.

All of this is to say that I’m not dead. I’m just trying to take some time to take care of myself, s my hibernation will continue a little while longer. I’ll be leaving my job at the end of this month so that my health is all I’m focusing on. I’m going to use our 2-month trip to the US this summer to relax, get in a good head space, and try to help my body as much as I can. When I get back I’ll figure out what to do about making money to pay my stupid fucking student loans. I hope by then I’m feeling a lot better.

Making a List

I just read an article online about increasing dopamine levels (in turn making you feel better). It included things like avoiding addiction, sleeping well, exercise, and taking supplements. The article said that making lists and checking things off helps increase dopamine because of the sense of accomplishment you get when you complete a task. Before anyone gets their panties in a twist, I  know it was an internet article about science. It’s accuracy may not be real high. However,  I do think there was something to what I read, particularly the part about making lists and checking stuff off when you get it done.

I’ve been making lists recently because I swear I can’t remember shit if I don’t. It’s a horrible thing, not to have my memory be what it used to be. It’s like this fog descends over my brain and I lose all ability to remember stuff.

I recommended it to a coaching client who normally feels anxiety about making lists. Instead of feeling the joy of seeing things checked of, she could only focus on the things that were left undone. I suggested that if she saw the same things left undone over and over, that perhaps they weren’t that important to her to do. I think that changed her perspective only it a little bit.

I think there is a lot to be said about feeling a sense of accomplishment for even routine things. Routine things take up loads of time. As we’re crawling into bed at night completely exhausted, we wonder where our day has gone. It’s things like laundry, grocery shopping, and paying the bills that eat up our time.

For someone like me, with chronic health issues, all of those activities is a real energy drain. I had so much pain in my back earlier today that I thought I might have to go to the doctor. It’s subsided now, but I had to lay down for a while to get it under control. I read a book while I was resting, but that doesn’t mean that the time was a waste, by any stretch. Since I couldn’t do anything else I needed to do, like finish unpacking or more laundry, I used the time to do something else that’s important to me. I feel a *little* better about the time spent laying on my back.

I think tracking everything I do during the day and then crossing it off will make me feel better about my illness. Some days it’s hard to et out of bed at all, let alone do all the stuff I need to do around the house and for work. I’m hoping that if I can see everything I’ve done (without focusing on what remained undone), I’ll not feel like a lazy bum. Also, if I make a list of what needs to be done the following day, before I got to sleep at night, I may be able to remember all of it a little but better!

What about you? Are you a list maker? Does it help?