Today's disappointment is brought to you by the letter "F." F as in Fibromyalgia. Or fucking fibromyalgia as I usually refer to it. Some days are better than others, obviously, but lately I've had more bad then good. Maybe it's the stress of being out of work. Worrying about bills and money and job searches. The stress of not being able to keep up with everyday household chores because I'm in too much pain & too exhausted. Maybe the fibro beast who has been chasing me for the past 18 years has clawed its way closer and finally has his fucking hands around my throat.
Some days the beast has you by the scruff of your neck with an annoyance of pain and aches and other days... well... he's got you by the short hairs and you can't seem to get away. The pain is all consuming, overwhelming and, well, disappointing. My disappointment is nothing compared to the disappointment I see in my son's eyes. He'll be 10 in August and while he's an amazing, bright, wonderful little guy, he doesn't understand the fact that I'm sick all the time. Or that plans change in a blink of an eye when all of a sudden I feel like shit. Or that I can psyche myself up to go somewhere but the minute we get there, I'm ready to come back home. And why should he have to understand that? It's not fair. It's ridiculous that he should even be expected to understand what I have to go through on a daily basis with all the many, many health problems I have. Why should a 9 year old have to get his mom water because she literally can't MOVE from the bed or the couch? Why should he have to deal with this? He didn't choose this.
Today has been a very rough day and he's once again disappointed that I'm unable to fulfill a promise I made to him to possibly get him to the game store to exchange some things. There were lots of tears (on my end) and feelings of inadequacy. Now, I know I'm very, very lucky to have the support system I do at home because I know a lot of people with fibro or other debilitating illnesses who are on their own or live with someone who makes life very difficult for them to get the rest and help they need. My son just came in and hugged me and said he was sorry for getting upset earlier. I know I'm very blessed to have him and Jason in my life.
What is the most frustrating is that I can do all the things I'm suppose to do. I can take all my doctors recommendations and follow them to a tee. I can take all the drugs my doctor wants me to that are supposedly "helpful" to fibromyalgia patients and still, STILL, feel horrible all the time. There's no cure for fibro and it's frustrating as hell. We need a cure. May 12th is Fibromaylgia Awareness Day and we need to spread the word about this nasty, vile disease.
Thanks everyone for letting blow the dust off my blog and vent a little. It's been a rough few months lately. I promise my next post will be more uplifting LOL