Normally I try to post about lighthearted and/or humorous things on this here blog. I like being lighthearted and/or humorous. It makes me happy. However, since this is my blog, every once in a while I get to deviate from the norm. And today I am going to complain slightly.
Ok, more than slightly.
I'm overall a pretty upbeat person. I've been working on it even more lately - breathing deeply, taking in the moments (be they positive or negative) and really trying to expend energy in a good way. It's working for me. I have seen growth and improvement. I like it. But every day, to some degree or another, I battle this invisible, silent ick factor that this week is really getting my goat. (My goat's name is Gertrude, for the record.)
I have Chronic Fatigue Syndrome (CFS for short). Or myalgic encephalomyelitis (ME for short). It's the same disease, and it has about 10 different names (literally). It's closely related to Fibromyalgia, but slightly different in some of it's symptoms and manifestations. They both suck. (That's the nicest thing I can say about it/them.) Everyone who has CFS feels differently on their worst day, and on their best. Really, I'm blessed, because some of the time I can do my day to day things with not a whole lot of backlash. I have to take more naps than the average Joe (although nap really isn't a good word for it, as sleep doesn't really come easily for someone with CFS). And I have to build in time for when my brain totally blanks out on me (I mean the kind of brain blanks that have nothing to do with having Facebook open too often). However, I realize that there are people who have it a lot worse than I do. I get that. And I am thankful.
The flip side of that coin comes when the hard days (or weeks or months, as it varies) kick in. When I lay awake every night for more than 2 weeks straight (literally). When I can't rest even when I lay down during the day. When my throat and mouth hurt SO badly that I can barely drink and/or swallow water, much less tea or food. When my muscles are so sore that it feels as if I have had the flu for two weeks and then taken a spill down the stairs on top of it and am bruised from head to toe. Or when I have to spend all day in the bathroom, lying on the floor beside the toilet with my blanket and pillow because I don't have the energy to go back and forth.I'm hot almost all of the time, but my hands and feet? Freezing. (Just ask poor Bri about that!) I catch *everything*. And if there's been stress involved recently? Forget about it. I'm down for the count. Or if I have a panic attack, it takes me days - or even weeks - to recover. If I'm sick sick on top of the CFS? Have mercy.
Truth is, even on my "good" days, it's hard. I'm tired. Tired is too weak of a word. I *hurt* from being tired. Like physically. I always have a sore throat. I almost always have a headache. I'm almost always behind, because even if I sleep for a few hours (4 is a LONG time for me), I don't feel like I've rested at all and I still can't concentrate or focus. The housework is almost always behind, and I have very little energy to spend on anything "extra". And if we do something fun or physical - like bowling, or going to the park, or staying out late the night before - I am toast for the next two or three days, and that's if I was on par before the outing.
I guess the most frustrating thing about this illness is that people don't get it. They don't get that it's a real thing, that it's serious, that it really is something that people have a lot of problems dealing with. It's not just 'being tired'. (Man, I wish!) If I say I'm tired, it's a whole different meaning than when Melanie says she's tired. (If I could bottle that energy....) I wish I had a unique way of explaining it that would make sense and make it as clear as it can be, but I fall short. I wish it was as easy as just 'resting for a while' to get better. Or that I could just 'take a break' and 'get right back to it'.
There's no cure for CFS. There's really not even any *treatment* for CFS. There are some treatments for the symptoms of CFS, but even that is so hit and miss that it frustrates the medical professionals as well as the patients. This disease doesn't manifest itself the same in any two people, ever. While some of the symptoms are the same across the board (there are some that you have to have to eventually (and I do mean after a long period eventually) come to this diagnosis), they're not the same extremity or longevity in any two people. My list of symptoms is long and icky. And it's not the same as anyone else, although there are documented studies on the connection with all of them to CFS. It's a confusing puzzle.
The good news is that there are some things that I can do. I can rest (or try to). The further behind I get, the more difficult it is to ever gain it back. I can watch what I eat and drink and how I take care of my body. I'm learning lately more and more certainly that The Cow and I do not get along - beef and dairy are just not my friends, period. Sugar? Bad things happen. Tea has TONS of good qualities that people with CFS and Fibro need - there are studies that show this over and over again. (Good thing for me that I love tea!) Water, water, water. I am trying a new sleep aid called melatonin. I've tried it before (many years ago) and it didn't do much for me, but the disease and our bodies change so much over time that I'm giving it another go (so far, not great - but I'm willing to give it a few days). I really should do yoga more, but the work of starting it sometimes makes it more of a bad thing than a good. Starting any physical activity sends my body into a tailspin, but if I can get past the original working-in phase, it would do me a lot of good to stretch out my muscles, which almost always feel cramped and tight and sore. Some of it can be helped by making good choices. Some if it cannot be helped no matter what I do.
I found a thing a while back that sort of explains it better than I ever could. It resonated with me. If you want to try to understand it but can't quite get the day to day 'hard' of it, this may help.
Brian is very supportive. Melanie is, too. I know they don't "get it" all the time. (Who does?) But they love me enough to try.
I guess that I am asking for a little patience and understanding. Maybe a little more knowledge and research. And gosh - wouldn't it be great to have someone figure out what makes this disease tick? That would rock.
Thanks for reading. Sorry for the long and not all that positive post. I promise I'll get back to my regularly scheduled foot-in-mouth or tongue-in-cheek writing soon. I hope this helps bring it into a little more perspective for you though, and that you'll bear with me while I navigate this particularly hard cycle. I'd sure appreciate it! :)
