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?