Depressing Health Update

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I went to the doctor today because my ear is still killing me and I’ve been running a fever for several days. Turns out I have another middle ear infection…this has to be about the sixth one in six months. Boy, am I getting tired of this. Not much I can do either, since I have tried many “alternative medicine” cures for ear and sinus infections and have went the whole ENT and allergy specialist route, only to find that nothing really works. In the end, I feel like it is just my own immune system working against me.

The doctor also said that she suspects the mouth sores I was dealing with might have been related to Coxsackie Virus (or Hand, Foot, and Mouth Disease). Adults don’t catch that illness nearly as often as kids do, but it can happen, and with my autoimmune issues, I guess it wouldn’t surprise me to find out I did get it.

So, I am on ANOTHER course of antibiotics. Something that depresses me to no end because I fear with all the antibiotics I have had to take lately that I may end up developing C Diff again, which caused me to be hospitalized for almost a week a few years ago. Needless to say, I am not in a good place physically or mentally and am just tired of it all. This chronic illness shit sucks.

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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.

Psychiatrist Visit Anxiety

Today I see my psychiatrist again. These appointments make me nervous because there is always worry that my meds might get changed and I might have a bad reaction to another one, like I did the Cymbalta. I also often wonder what to share with him. I want to be as honest and open as possible, so I get the best treatment, but I also sometimes have a tendency to overshare or over-explain things that might not be pertinent.

I figure the things that I should share with him most this visit are my “episodes” of rage and paranoia the past couple months, even though they only lasted a few days to a week each. I have actually had a couple “episodes” of feeling almost hopeful and optimistic recently, so that is good I think. It was really odd that during one of these times of having at least a few days in a row of feeling pretty good, I had one of the worst days I have had in a while, where I was so horribly depressed and so full of despair that I sat on the couch holding a bottle of pills and wishing I could take them all and maybe not have to wake up again, but of course, I know that wouldn’t be the right thing to do. Especially to my husband. Oddly enough, the very next day I was back to feeling fairly decent overall.

I also always wonder how much to address my physical problems with the psychiatrist. After all, he isn’t a doctor who treats those conditions, but those conditions greatly affect my depression and anxiety levels. When the physical pain is extremely bad for a few days in a row, that tends to bring on a kind of despair that is hard to cope with. It blackens my view of my entire future and makes me honestly feel sometimes that life isn’t worth living if you have to be in this kind of pain. I probably should take my Tramadol (opioid pain killers) more during those times, but I am afraid of becoming dependent on it if I take it too often.

Well, thank you for listening to me overthink things as I always do lol.

My Future Fund (supported by art and book sales!)

Recently I have been having quite a bit of success selling my artwork and I am so thankful! It means the world to me to know that people love my art and want to support my creative efforts! I do have something special I am doing with the proceeds I get from my art and I wanted to share that, so that if you are purchasing my art, you will know how you are helping me in multiple ways.

As many of you know if you follow my blog regularly, due to worsening chronic mental and physical health conditions, it has been hard for me to work outside the home for a while. I am hoping to get my SSDI benefits at some point in the future, but it can take years for that to happen due to backlog. I in no way feel bad for going after these benefits since they are not charity or welfare, but instead are the very benefits I paid into for years. I think it is ridiculous how long many of us have to wait to get a real person to make a decision for benefits we worked hard for over many years.

Due to my trouble working, I constantly fear that were something to happen to my husband, I would eventually end up homeless once the little bit of life insurance ran out. It is a terrifying thought that haunts me every single day. I am not guaranteed eventual approval of my SSDI claim, nor do I have any way to know for sure when I will find out since I am still waiting for a hearing date to even be scheduled.

So, I figured that instead of simply living in fear every single day without taking any real action to plan for the future, that I could take small steps to try to do what I can to provide any measure of security for myself. I have decided to start saving every bit of money I get from my art sales and book sales, to hopefully help build a nest egg to provide a little extra help if someday I need it. I have also been adding extra cash here and there that I manage to save to the “future fund”.

Flaking Out Due to Sickness

Yesterday I was supposed to go to therapy, but I was feeling really sick and ended up calling off. Whenever I have to do that, I always end up feeling bad, like it is my fault that I have these health problems and often have to cancel appointments or activities.

Honestly, nowadays I don’t even schedule much of anything outside of medical appointments because I would rather not plan anything than have to feel like I’m letting myself or others down if I’m too sick, depressed, or anxious to go. It really isn’t a fun way to live, and it frustrates me. I often feel like I’ve almost given up on living a normal life and that saddens me.

On the plus side, I am fortunate to have a supportive husband and still have a place to live and food to eat even though I am too sick to work a regular job. I really don’t know how people like me make it without support, especially since it can often take years to get any help from disability. If I had tons of money, I would spend it helping out those who are in similar predicaments, whether they struggle with autism, mental illness, physical illness, or a combination of all of the above like me.

Psychiatrist Says, “Have More Fun!”

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Yesterday I had the most fun I’ve had in a long while. Being chronically ill doesn’t allow you to do much that is just pure fun and silly, especially when being unable to work also makes you chronically poor. However, yesterday I pushed myself a bit and my husband and I went to a local family fun arcade. We played video games, pinball, and silly carnival-style games. It was a blast. By the time we were done, I was sore and exhausted, but it was worth it. Even though I woke up feeling like I had been run over today (after sleeping about 13 hours), I wouldn’t change a thing.

At my last psychiatrist visit, the doctor encouraged me to “have as much fun as possible”. I guess he could tell that it was sorely lacking from my life nowadays and it seemed like he was pushing it as a possible antidote (or at least a brief reprieve) from the crippling depression I deal with every single day. Because of this, my husband and I are making an effort to find little ways to include more fun and silliness in our lives. It may not “cure” anything, but it does help improve my mental outlook at least a little bit.

* Art by Maranda Russell

Negativity

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Sometimes I worry that I come across as too negative or focused only on the bad on this blog. It is really a fine line to walk, because as someone who is chronically ill, constantly feeling sick, and dealing with several mental health issues, it can often feel like the negative in my life does far outweigh the positive. Most of the things I used to love to do (hike, play tennis, roller skate, go dancing, etc.) are now virtually impossible for me. I haven’t been able to work in a couple years and even when I did, I was constantly in trouble for missing work due to health issues. I used to find a great deal of meaning in being a foster parent, but there is no way I could handle that anymore either. I feel like I’ve lost SO MUCH that it is hard to cope. I’ve always struggled with anxiety and depression, but since becoming sicker and sicker physically, the levels of those mental issues have skyrocketed.

I want to be honest on this blog above all else. Even when it hurts and even when it is ugly and dark. However, I don’t want to give the impression that there are never good moments in my life. There are times my husband makes me laugh uncontrollably. There are days when I do feel well enough to go out to eat or browse through a bookstore. Sometimes I get to watch a tv show I’m addicted to and excited to see. I still get to paint and play with art materials. My crazy cats continue to be crazy and adorable. It isn’t all bad, and I am grateful for the good times, but most days are a struggle and I don’t want to lie about that either.

* Art by Maranda Russell