Vacations: A Harsh Reality of Chronic Illness

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Over the weekend my husband and I took a short vacation to Louisville, KY to celebrate our 15th anniversary and spend some quality time together. I did have a good time, but I must admit that I dread and sometimes even regret vacations just as much as I look forward to them.

Why? Simple. Chronic Fatigue Syndrome. Vacationing when you have CFS sucks. Big time. Planning the vacation wears you out. Packing wears you out. The travel wears you out. Even though I don’t do the driving, I am still exhausted by the time we even get to our destination. Often, as soon as we get to our hotel I immediately have to lay down for at least a couple hours to recuperate, even if it is only a 2 or 3 hour drive as this one was.

The main excursion we planned was to the Louisville zoo. We had never been there before and both my husband and I love animals. Luckily, it wasn’t a huge zoo, but by the time we had toured about half of it, I was in really poor shape. I had to sit on each bench we came by and rest. I even had to make do with the floor a few times and just collapsed. I was nauseated, felt like passing out, developed a migraine-like headache, and felt extremely overheated, even though it wasn’t that hot out and I stayed hydrated. Heck, most of the buildings were even air conditioned. THIS is what living with CFS is like.

I didn’t get to see much of the rest of the zoo. I was too busy looking for places to rest and recuperate for the trek back to the car. My legs ached so badly and felt so weak that I feared they would give out on me multiple times. My entire body felt like I had been run over or slammed into by something big and heavy. Somehow I did make it back to the car (after resting many, many times on the way there), and then we went directly to our hotel so I could recuperate for the rest of the day. I didn’t even have the stamina to go out for dinner a few hours later, so we ate at the hotel.

I went to bed early, hoping I would feel better in the morning, which didn’t really happen. The next day we visited a cool indie bookstore I had wanted to go to, but I was almost too tired to even enjoy that. We went and found a place by the Ohio River to sit and watch barges pass by, which was peaceful and relaxing. During the drive times to our locations, I curled up with a pillow and laid my seat back to doze.

By the time we headed back for home, I was too exhausted to care about much of anything. When we arrived home, I went almost straight to bed, even though it was only 5pm. The next day (Labor Day), my hip and back were so sore (with a pinched nerve thrown in), that I spent most of the day laying in bed watching a Lake Placid marathon on the Syfy Channel. Any form of movement was excruciating.

All of this makes me wonder if vacations are really worth the trouble. It also makes me wonder if maybe sometime soon I will need to get a motorized chair to even survive simple outings like this. I hate to give in and do that, but my worsening symptoms make it an almost certain possibility eventually.

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Life Update: Weekend Trip, Nerdy Interests, Depression Lifting

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This weekend I am going out of town with my husband to celebrate our 15th anniversary, but I wanted to write a short post first just to let you all know how I’m doing. Fortunately, my depression has let up a little bit, and I think having this weekend to look forward to has helped. Everyone just needs to get away now and then and do something different.

I have been highly into toy collecting and comic books again lately, which I’m sure you have noticed if you follow my Instagram or watch my nerdy YouTube channel. Whenever I am able to lose myself in special interests like these, it also greatly helps my depression and anxiety. I suppose that is the Aspie side of me kicking in. I can always tell when my depression is hitting its worst because one of the first things that happens is that I lose all interest in the things I normally love…which is especially hard to deal with when you have Asperger’s and your obsessive interests are so much a part of your life and coping skills.

As far as art goes, I’ve still been into doing mostly sticker collages (like the one pictured above) and other kid-inspired art. I know many people think art is “bad” if it looks “childish”, but I have always aspired to be as creative as children naturally are. Saying that my art looks like something a child did is actually a roundabout compliment to me lol. If interested, you can see my recent art on my above mentioned Instagram account.

Tonight I am hopefully going to visit the comic book store and then play some trivia at a local Italian restaurant with some other nerdy types from a local meetup group. Then it is off on our trip!

Family Issues and Ex-Pastor’s Wife Resentment

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So I am going through a couple things right now. For one, my already strained relationship with my mother seems to be going farther downhill. To get a bit of the backstory on our relationship, you can check out this post. Anyhow, ever since I confronted my mother about the past, I could feel her slowly backing away. She now lives in another state and at first she would call me once or twice a week and would call back within a day if I called her. Now she doesn’t return my calls for a week at a time and it has been three weeks since she last called me, even though she said she would call me in a few days the last time we talked.

I can’t help but feel a little snubbed and like I am slowly being phased out of her life, which doesn’t surprise me now that she has remarried and doesn’t need me so much anymore. This has always pretty much been the pattern when she gets a man in her life. I stop mattering as much. Honestly, there have been times I’ve considered going “no contact” because the little bit of contact we have now only tends to make me sadder, and the more I feel put aside and ignored, the more I hurt.

I’ve also been dealing with some pent up resentment I didn’t even realize I had about the years I spent as a pastor’s wife. For the first 11 years or so of our 15 year marriage, my husband was a pastor. In the past few years we have kind of drifted from the faith and become agnostic, which is a huge change from what our lives used to be. However, I just realized when having a conversation with my husband the other night, how much being a pastor’s wife for so many years deeply bothered me.

For one thing, I constantly felt judged by the congregation and compared to previous or other pastors’ wives that the congregation knew. I was not old-fashioned. I was not meek and submissive. I did not want to teach, play piano, or lead anything. It just isn’t my personality. My social anxiety makes leading anything a horrifying thought for me, but yet, I found myself almost forced to sometimes be in these roles I hated. I was pretty much forced to teach at times, and while I loved the kids, I felt panic at the responsibility. No one helped or trained me, I was just thrown right in. At one point, I had a panic attack and burst into tears about my fear of teaching in front of the head pastor, his wife, and my husband and yet none of them seemed to take it seriously and pretty much just patted me on the shoulder and said I would be all right. But I wasn’t. Even when I found out I had autism and tried to explain to the head pastor why that made social things so hard for me, his response was that everyone has those problems. But no – everyone does not!!!

My husband now realizes how many mistakes he made by pushing me. He is sorry and has genuinely apologized for putting pressure on me and making me feel like I had to do things that made me anxious to the point of sickness. He realizes now that he learned that behavior from his own parents who pressured him constantly about being involved in church and often tended to ignore his feelings if he didn’t want to do something. Like most people, he was acting out the unhealthy patterns of his family as an adult and unfortunately, I got the brunt of it.

Waterfalls and Baby Snakes

Yesterday the weather was absolutely beautiful. There is something so magical about the first day of the year that is warm enough to wear shorts! Or maybe that’s just me… Anyhow, since it was so lovely out, my husband and I took some sandwiches to a local park for a picnic and then took a short hike to a waterfall.

Along the path we found two baby snakes! They were so adorable! Unfortunately, we didn’t get a good picture of either of them, but I found this picture online that is pretty much exactly what they both looked like (although one was much tinier, maybe a newborn):

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I’m pretty sure they were some species of garter snake, but not sure. We did get a picture of the small waterfall:

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It is amazing how spending time in nature can really elevate your mood. I’ve heard nature described as a natural antidepressant, and I would have to say I agree in many ways.

Being Too Clingy and Possessive

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I can be a bit possessive, especially when in a close relationship. I’ve always been like that. Even as a kid I would get jealous sometimes if my friends had other friends or wanted to do stuff without me. I’m not sure why, but I am easily prone to feeling left out or threatened by outsiders. However, I know this dynamic isn’t exactly healthy and I am trying to learn to let go a bit and not be so demanding by monopolizing anyone, specifically my husband.

It may be my autism, since I have heard it is typical of autistics, but I don’t make close relationships easily. I usually only have one or two truly close relationships at a time, and I can definitely be guilty of being clingy or insecure about those relationships. For the past 16 years, my closest relationship has been my husband (as it should be), but my husband is a bit different from me in what he needs socially.

Socially I only need those one or two people, although it can be terrifying if those relationships are threatened, since it is so hard for me to connect with others and build closeness. My husband on the other hand seems to desire more social interaction and the chance of making more friendships than I do. He wants to feel a part of things more than I do, as I am more of a homebody.

So, I have been working at letting go some and not feeling resentful or frightened by him reaching out for other friendships. It is still hard sometimes and honestly there is still a big part of me that thinks he should need absolutely nothing else in life but being with me…but I know that isn’t realistic or healthy. Does anyone else out there struggle with issues like this?

My Poor Husband…

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Sometimes I feel truly sorry for my husband. From what I have read and been told by psychologists and psychiatrists, he has a rough road to travel. Asperger’s can be extremely hard on intimate relationships. Bipolar can be extremely hard on intimate relationships. Long-term chronic pain and chronic illness can be extremely hard on intimate relationships. PTSD can be extremely hard on intimate relationships. And my poor husband has to deal with them all on a daily basis…

Of course, when we married fifteen years ago, I didn’t know I had any of these conditions or that I would develop some of the others. I did already have chronic foot pain and issues with depression and anxiety, but nowhere near as bad as I have them now. Nor did I have a true understanding of what was causing the symptoms I sometimes experienced, whether they be mental or physical. I wish I could have warned him, but I simply didn’t know myself.

On the positive side, he has definitely been a trooper. He always steps up to the plate and is there for me and willing to do anything he needs to do to take care of me and help me through the confusing mess that is my mind and my body. If anyone in this world has shown me the meaning of true love, it is him. And I am thankful.

Just a Big, Black Hole

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The last couple days have been rough. You ever felt like you were a giant black hole of emptiness and need that sucks the joy and positivity out of everyone and everything around you? If not, you are lucky. If you can relate, I’m really sorry to hear that because it is a terrible, horrible, no-good, very bad feeling. Luckily, I do have a loving, compassionate husband who was there for me to hold me and make me feel loved even when I feel the most unlovable. I also have good online friends who are always willing to lend an ear when I need to vent or get something off my chest, and that means the world to me (you probably know who you are if you are reading this).

Today is pretty nasty weather-wise, so we might be snowed in a day or two if we get as much snow and ice as predicted. Luckily, I am feeling a bit better mentally and am just enjoying watching the snow fall while my kitty cats cuddle around me and my husband watches Star Trek. I hope you all have a great weekend! Thanks for putting up with me!

* Art by Maranda Russell