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.
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”.
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.
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.
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.
Having CFS/ME really sucks sometimes. On Tuesday I went to my traction physical therapy appointment for my bulging disc in my neck and they asked me to do a few minutes of really easy, simple exercises that should have been a breeze. Instead, here I am, 35 years old, looking fairly healthy and fit, and yet, I had to constantly take breaks from even these few little stretching and postural exercises. It makes me feel like I’m really living in an 80-year-old body.
It is embarrassing as well, because I fear the judgment of those who see how little I am actually able to do. I worry they will just judge me as lazy or think I am just being difficult, which is entirely the opposite of my personality. I’m the kind of person who goes out of their way NOT to cause trouble or slow things down. I often wish other people really understood how crippling chronic fatigue syndrome can be. For instance, all my adult life I ALWAYS took a shower every single day and washed my hair. Now, I’m lucky if I can find the energy to wash my hair every other day, even though my OCD traits are going crazy at the change in my lifelong routine. Even typing these blog posts requires frequent breaks.
Sorry if this post seems a bit whiny, it just sometimes hits home over little simple things, how much my life is affected by my new physical limitations, and it is hard to accept.
Hello everyone! So today I’m sharing a book review vlog video I made yesterday. For anyone who has Chronic Fatigue Syndrome, Fibromyalgia, or similar chronic illness, or who has a special interest in those subjects, this book might be something you would want to check out! If you have already read the book, let me know your thoughts!
Today’s subject is inspired both by my personal experiences with health issues and the experiences of others I know or have known that suffer from Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis). Although I myself have not been formally diagnosed with CFS, my doctor has ruled out many other autoimmune conditions and it is looking more and more likely that CFS may be the culprit. Of course, this post is one that many others who have an “invisible illness” will be able to identify with. Please remember that just because someone doesn’t look ill on the surface, doesn’t mean they aren’t suffering or fighting a tough battle.
So, what do you think of when you hear the words Chronic Fatigue Syndrome? Do you call it the “Yuppie Flu” like so many others have in the past? Do you think these people are lazy, faking it for attention or all hypochondriacs? I hope not, but if you do, maybe some facts might change your mind. For instance, did you know that fatigue is actually just one of many symptoms of CFS? In fact, you have to have multiple symptoms to even qualify for a CFS diagnosis. Here is a list of some of the symptoms of CFS that afflict most sufferers to one extent or another:
Incapacitating fatigue for no apparent reason
Extreme fatigue after exercise or exertion
Pain in joints
Muscle aches and muscle weakness
Chronic infections that are hard to cure
Sore throat and ear pain
Constantly swollen lymph nodes
Nausea and IBS symptoms
Constant flu-like symptoms
New or worsening allergies
Sensitivity to noise, light, odors, foods, chemicals, medications, heat and cold
Hypotension, possibly fainting
Depression and anxiety
And those are just SOME of the symptoms! I personally have experienced all of the above symptoms, some worse than others, but I am still one of the lucky ones with CFS. I can still get out of bed without fainting and I can still walk and do some normal activities on good days. Some people with CFS can’t climb a flight of stairs to the second floor of their home and some sufferers almost never leave their bed or home (especially those who have severe hypotension and fainting).
Also, for those who think this illness is all in the head, did you know that there have been reported outbreaks of CFS in communities where hundreds of people came down with it all at once and suffered severely from it for at least 5 to 10 years? This research leads scientists to believe that at least some cases of CFS are actually caused by a virus that really messes up the immune system for some reason. Although some CFS sufferers do eventually feel better, only a small percentage will fully improve and never have symptoms again. There is also no tried and true treatment so far. Treatment options currently used include antidepressants, stimulants, exercise, nutrition plans and various other alternative approaches. Although some of these treatments do help some people, there are still many CFS sufferers who have found nothing that helps them. Perhaps that is why the suicide rate for those with CFS is high compared with many other physical ailments.
So, after reading all that, has your view of CFS and those who suffer from it changed at all?