This entry would fit under my Be Brave, Be More Compassionate or Be Healthy entries just as well, but this goal’s title always makes me smile and I can use a smile right now.
Sjogren’s syndrome. I was diagnosed in 2006, I think. It’s an autoimmune disease that can cause dry eyes, dry mouth, joint pain and fatigue, among a wonderful assortment of other uncomfortable symptoms. I’m having a flare right now. The joint pain is better today but it was hellish yesterday. It felt like there were hot coals in my wrists, my feet felt broken in every joint and my elbows had apparently been replaced with rusty wire hangers. Not fun. The fatigue is still with me.
Ahhh, the fatigue. I don’t know how to describe it to those who have not had it. It’s caused by the weird antibody actions of the disease and the disordered sleep it causes. I feel heavy, as if I am moving in syrup. Little things like picking up my cup of (useless) coffee seem like insurmountable quests. I am on the verge of tears because I have a busy day at work, in which I have to walk around looking at potential new work spaces and take minutes for a board meeting. The fatigue seeps into my brain. It can make it hard to speak clearly when it’s really bad. It causes both cognitive dysfunction and depression. It is veryvery not entertaining.
I have a further problem. I don’t trust myself. I think that I am exaggerating my symptoms, being dramatic, in a word, faking. I’m sure this stems from growing up with a mother who took our sickness as a personal insult on her healthfood ways and sent us to school unless we had vomited up an organ. An important organ, at that. Spleens didn’t count. (OK, she wasn’t quite that bad but she did approach our sicknesses with the assumption that we were exaggerating, or so it felt.) She also did not allow any complaining. I remember when my sister had hepatitis. We went on vacation and she slept in the tent the whole time. My mom is an amazingly stoic woman who once sewed a laceration on her finger together at home rather than bother with going to one of the two hospitals within 15 minutes of our suburban home.
SO, ever since diagnosis, I’ve felt sure that I didn’t really have Sjogren’s. The dry eyes, dry mouth, joint and muscle pain, rashes, vasculitis and fatigue were probably due to allergies or stress, right? When I moved out of my last living situation, things got better, probably due to less stress, better sleep and better nutrition and self-care in general. So a flare like this is more shocking because less frequent. It’s also pretty hard to deny. I cried in my car in the parking garage yesterday afternoon because all the turns between me and home were overwhelming.
Today, desperate, I did another search online and found a really informative patient education article. It made me realize how cruel I am being. I have almost all the symptoms, a positive rheumatoid factor and the elevated cryoglobulins that may relate to a more severe presentation of the disease. Why am I treating myself as if I am a sneaky liar? I force myself to stay at work and type when I’m in pain and can’t take most meds because of the blood thinners I’m taking. I don’t get proper sleep. I make excuses about why I don’t do things when the fact is that I sometimes can’t do them. I refuse to admit that I don’t have the same amount of energy as other people. I treat my body with contempt when it doesn’t respond as I would like.
Perhaps this is the correct place to put this entry. The word languid is certainly preferably to the word fatigued and the word lazy is no longer acceptable. Part of this entry could fit under my 4 Day Win goal, too, as it was the Body Whispering attempt yesterday that allowed a lot of this to coalesce into concepts that I could understand. The truth is that I am terrified that the syndrome will progress and leave me unable to work, unable to do all the things that I love, that I will become a bed-ridden invalid who isn’t any fun. That sounds silly, I suppose. But not being fun is not being ME in some ways. What about me and Mr. Man? What about getting older? I’m scared down to my tired achy bones.
I will try to be a little kinder. I’m contacting people who have the syndrome or have worked with patients to see what’s worked for both flares and on an ongoing basis to lessen fatigue. At least I’m not hiding from myself anymore. It’s a start.