Obviously my chronic illness bothers me. There’s no denying that I’m constantly angry, frustrated, or depressed because I am almost always in pain. But last night I realize what bothers me the most about this whole thing.
I always feel so weird complaining, like maybe I don’t have the right to complain because I don’t have a diagnosis. I read other chronic pain blogs and they all know what’s wrong with them. I can empathize with the pain, but I feel left out because I don’t have a word for what’s wrong with me. I feel like I don’t have a place or a group to belong to, as strange as that sounds. Ironically, I’ve always felt like I never quite fit in anywhere, so naturally it has to be the same way with my illness.
There are whole communities devoted to people with Lyme Disease, corners of the web for people with Thoracic Outlet Syndrome, and even a place for moms with chronic pain illnesses. Undiagnosed.org is empty. It’s just a placeholder for something. Am I truly alone out there?
I still have to get yet another round of blood work for Lyme Disease done. I might do it tomorrow morning, as long as I can find someone to take me (I hate going alone), and as long as it doesn’t interfere with going to the beach (yes, I’m that bad at finding excuses).
Maybe it’s the gloomy weather, but today it’s a lot harder to deal. Maybe it’s because my legs hurt, reminding me that I’m not as healthy as I was a couple of years ago. Maybe you can’t tell from the outside, but I feel like shit. All I want to do is fall asleep and ignore everything else for the rest of the day — including Mike, who I’m supposed to hang out with later.
Maybe, instead of working on web projects, I’ll channel all this blah into something productive and WRITE. I miss writing. That would be nice.
I found you on 20SB.net
I’ve been chronically ill for 8 years, and until a few months ago I didn’t have any guess at all about what was wrong with me. I completely know how you feel, and I’m so sorry. I don’t feel like I have any words of wisdom that won’t amount to me leaving you some 5,000 word blog comment, but you’re not alone.
I recently joined an online community for people with “invisible disabilities”, people with all sorts of chronic pains are on there and I would hope you’d find some people you could talk to.
This is the site
http://invisibledisabilities.ning.com
This is my profile
http://invisibledisabilities.ning.com/profile/FaithMcKay
I could kiss and hug you right now! Today’s been a rough day, and I think this comment totally made my day. Thanks for the links, I’m headed there right now.
What have you been diagnosed with?
Hi Elizabeth, sorry for the slow reply, it didn’t email me that you replied (i just came back to your blog to see if you’d updated and saw this comment)
I’m so glad that my comment helped some
“diagnosed with” is sort of not really true. There aren’t tests to say that I have this, it’s more that I have all the symptoms, and they ruled out any other possibilities. Which is lame, but true.
I have what (in the USA and some other countries) is called Chronic Fatigue Syndrome, but that is the dumbest name ever. It’s not JUST that I’m fatigued. In some other countries, very much in the UK, it’s called ME (Myalgic Encephalomyelitis / Encephalopathy). The reason for the stupid name is that some people don’t believe it exists because most of the symptoms are not those which can be proven, and there’s no blood test that says you have it. A lot of people with CFS go on through their lives with barely any symptoms, unaware they even have it. Others are bedridden. One of the main characteristics, which helped them go “yep, that’s what you have” is the up and down patterns of it. Some days, I feel relatively ok. And then I’ll have some kind of physical or emotional stress, and my body breaks down.
For instance, on the day I found out my dad died, I had been fine. I had gone grocery shopping and was planning to go the library. My sisters stopped in, told me what happened, and basically my whole body hurt within twenty minutes. It was ridiculous. If I were to go for a jog, I’d probably spend the next few days laying in bed, exhausted. I have to take it easy on myself, which is not something I’m particularly good at, heh.
Actually, someone had suggested I had CFS after I’d been ill for about a year, and I didn’t look into it and was really offended at the suggestion. I felt like they hadn’t been listening to all my symptoms, I wasn’t JUST tired, heh.
The idea that I probably had CFS first came to me one day when I was too sick to get up and move around and decided to watch a documentary on netflix. I had no idea what it was about, the title just sounded interesting (I Remember Me) and I thought it was about mental illness. I started watching it and was completely shocked that they described me! If you have netflix, it’s available to watch instantly, and is actually really interesting. It explores people who have CFS, misconceptions, but most interestingly it talks about the history. It really is quite interesting. http://www.imdb.com/title/tt0293270/
I’ve been known to talk too much. Just so you know.
Don’t worry, I talk too much too! And sorry about the lack of email alerts. I’ve been too lazy to go hunting for a plugin.
But you should be able to subscribe now and get updates when there are other replies. (Hooray for not being lazy!)
That is a pretty dumb name, since it doesn’t accurately describe the problem. But at least you have a name for it. Are there any medications that help you? I take Tramadol when I absolutely can’t stand it anymore, because it hits me very hard and once I’ve taken it I’m just about as good as a stoned cucumber.
I’m sorry to hear about your dad.
To be honest, I don’t really have a diagnosis either. I have the issues in my back that are “labeled” as cervical herniation, but the rest of it? The doc says we’ll call it fibromyalgia only because he can’t figure out WTF it is. Yep, his exact words. I love my doctor
. He still thinks it’s either Lyme disease or Lupus, but I don’t “fit” either category.
I live on Vicodin and coffee, with sleeping pills (Restoril now since I have no insurance and Lunesta is too expensive) every night, and Flexeril for the days the Vic doesn’t cut it. Oh, and Ativan for when the emotional stress of the pain sends me over the edge. But I HATE being a zombie…
And there IS a site for undiagnosed chronic pain – I have it bookmarked on my old computer. Give me a month or twelve to find it.
The worst, I think, is knowing that I should be exercising/doing some sort of physical therapy – because while it hurts like hell, it does help build you up. I just DON’T have the energy or the stamina to do it. So instead, I sit here beating myself up for not doing what I “need” to do to feel better… even though I can’t.
I hate being a zombie too, which is why I rarely take my Tramadol. My new rheumatologist said I could take two up to twice a day. I was like, “yeah right” lmao
I do feel as if I need some kind of anxiety and depression meds, because it’s to the point where I just can’t handle much anymore. Although I did go to the rheumatologist yesterday by myself!
Sounds like your doc is pretty cool; at least he’s able to admit that he doesn’t know. I had doctors saying the most ridiculous and sometimes horrible things to me because they didn’t have a clue otherwise. Hopefully that period of my life is over!