Hidden Hardships and Invisible Illness

Originally posted on April 30, 2012:

This entry will talk about all the things I deal with internally (mentally and physically) on a daily basis. It may contain explicit (more so gruesome details about my bodily functions) material. Parental discretion is advised. 😉

  •  First off, people hide things more than we would like to believe. People hide bad things like abuse, pain, and guilt, and they hide good things, like achievements (in order to not be made fun of), good grades (so they aren’t called a geek, and the joy of life/being pregnant (so they won’t be judged).

   Personally, I hide my pain. I’m an 18 year old, married woman, and I have Fibromyalgia. I always thought Fibromyalgia was an “old person” illness. Contrary to popular belief, it is most common in women of child-bearing age and beyond, but can also occur in teens, children, and men of all ages.

I am in pain all the time, 24/7. No breaks, no time-outs. For those of you who don’t believe or understand I will post a few links at the bottom of the blog, about understanding this pain. I’ll do my best to explain how I feel on a daily basis, but it’s hard to express. I’ll do a timeline.This is based on a typical day/night, some are a little worse, some are a little better.

  • Wake up: The night before I didn’t get a very restful sleep, unless it was drug induced by muscle relaxers or prescription pain-killers. I woke up at least 3 times, getting out of bed every time. I finally drag myself out of bed, with stiffness and pain in my jaw (from clenching/grinding my teeth in my sleep) back, neck, elbows, and knees. On top of the stiffness and aching joints, my skin hurts. There are many different kinds of “hurt” and when my skin hurts it burns. My skin sometimes feels like it is on fire, with the lightest brush of my hair or my shirt on my neck or arms. When it isn’t burning, it’s tender. When someone wants to rub my back, sometimes its nice, but sometimes its completely unbearable because it literally feels like the top layer of my skin has been ripped off and my flesh feels raw.
  • This brings us to the afternoon: Around lunch, I scavange to find something to munch on, because I can’t eat big meals. I eat about 5 or less small meals a day, when I’m not snacking. Some days I just snack all day because if I eat a big meal, I’ll throw up. I always have to keep in mind what to order at restaurants, because if it comes back up or goes out the other end, I could really be in for it. Usually, spicy/greasy/acidic foods are a no-go, unless I have taken medicine prior to eating. I have diarrhea at least once every couple of days, sometimes up to 5 times a day. I’ve recently discovered that sweet tea from the Golden Arches is out of the question, since I get diarrhea following a tall cup of that.
  • Evening/Night: Probably when I feel the worse, but obviously that’s when people are the most active. The evening is when you go on dates, hang out with friends, visit with family, and much more. If I woke up around 8 a.m. I am probably beyond exhausted right now. However, it usually doesn’t stop me from going out and about to see people and go places. By now, my skin is very tender, my neck is aching pretty badly, my feet are starting to throb, sometimes my eyesight gets blurry, I have a headache, and I’m just very tired.

As I lay down to go to sleep, I have problems getting comfortable because my skin is hurting and my back and neck ache, so it’s hard to get in a good position to sleep. I lay there for a good 20 minutes before I can actually fall asleep… but alas, I’ll wake up in about 3 hours to begin the cycle all over again.

  • Mentally, I go through quite a lot, too. There are sometimes I just forget. I could have a big appointment or maybe a bill, but I will forget. I have lists everywhere. In high school, I forgot my locker combination constantly and I would just “blank” on what class I had next. I try not to let it get to me, and I always try to be positive. When I’m in a lot of pain, I still try to be nice and happy. However, sometimes I just get snappy or whiny. Then sometimes little things will bother me and I’ll say something I regret, and later that day I’ll apologize like a mad-woman, when it really may not have been a big deal. I always feel bad when I talk to others about my problems, because I feel like I’m putting a burden on them, so I usually just keep it to myself.
  • It’s hard to explain, and also very hard to understand. There is no blood test, imaging test, or clear-cut test to prove you may have this disorder. Some people don’t believe that what I have, Fibromyalgia, is a real disease/disorder/illness/whatever you may call it. I’m living proof that it’s real. Treatment for it is (how my rheumatologist described) 1. Good sleep 2. The right medications 3. The right exercise. Obviously if you’re worn out and tired, you won’t want to exercise. Or if you’re exercising, you might not sleep because of the amount of pain you’re in. In that order, is the treatment. If you can get good, solid sleep (even if it’s helped by medicines) you move on to Step 2. Medciation. Treatment for FM is Cymbalta or Savella. Those two are the only FDA approved medications for Fibromyalgia. After you can get some solid hours of sleep and the right medications to help your daily pain, you move on to exercise. Low-impact exercise is the best. Consider walking, swimming, yoga, Tai-Chi, etc. if you have FM and need to get your daily amounts of exercise in.

Please, for the sake of being my friend or for the sake of others around you who may suffer from Fibromyalgia, read up and educate yourself. That alone will show us you care enough to want to know how we feel.

In closing, I want to say… Just because it looks like someone isn’t in pain, doesn’t mean they aren’t. I’ve gotten fairly good at hiding my pain, just because I don’t want to burden others with my problems. Just because someone doesn’t look like they’re hurting doesn’t mean they aren’t suffering inside. This goes for many different illnesses and diseases. You can’t see depression, but it’s real. Just a few disorders that are “Invisible Illnesses” are depression, Fibromyalgia, arthritis, Ehlers-Danlos Syndrome (my best friend has this and I will post a link to educate yourself about that, as well), Lupus, dementia, heart disease, and even cancer. Please educate yourself and others on Invisible Illnesses!

Fibromyalgia

Ehlers-Danlos Syndrome

Depression

Invisible Illnesses

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