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.
* Art by Maranda Russell
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
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.
* Art by Maranda Russell
I think the title is pretty self-explanatory as to what the video below is about. Just wanted to share. It is a part of my life, a part of who I am.
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!
“Painful Descent”, an expressionistic picture representing the downward spiral into chronic pain that many of us suffer.
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
- Sleep problems
- Pain in joints
- Muscle aches and muscle weakness
- Chronic infections that are hard to cure
- Sore throat and ear pain
- Severe headaches
- Constantly swollen lymph nodes
- Nausea and IBS symptoms
- Constant flu-like symptoms
- Mental fogginess
- Chest pain
- New or worsening allergies
- Sensitivity to noise, light, odors, foods, chemicals, medications, heat and cold
- Irregular heartbeat
- 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?