“Will you pass me the…the…” I can’t remember what it’s called. I’m looking right at it. I’ve known its name since I was 3 or 4. I know what it is, I know what it tastes like, smells like, looks like, and I can think of all the words describing these things except its name. The family member sitting across from me is waiting expectantly for what I want but I’m drawing a blank. I can only point and describe it, so I do, “…the red stuff you squirt out of a bottle?” I finally finish.
This was the first time I can remember forgetting the name of something I shouldn’t forget the name of. I don’t remember how long ago this particular incident occurred, maybe 5 years ago. It was confusing to me and a really weird sensation. It’s not like you can’t remember where you put something, or the name of a person you once met and you’re trying to remember something you’ve only encountered once or twice. It’s having a normal conversation and then stopping midsentence because your brain goes blank and there is no word supplied to you for an everyday object that you should have no problem identifying. Things become “white fat in a can” (Crisco/shortening) or “things you unlock doors with” (keys). I’m really good at the game catch phrase. Since the ketchup it happens occasionally, and I had accepted it as something that my brain just does sometimes and I don’t even waste time trying to think of the word for whatever object I can’t remember at the moment anymore. I just go right into descriptions until I remember what it is called (usually by the time I’m done describing it the word comes back to me), or the other person figures out what I’m talking about. I usually attribute my poor word recall to being tired.
Tired. I’m tired an awful lot. I usually try not to complain about how tired I am because I figure I’ve always been tired, even when I have no reason to be, so this must be how most people feel (except the super lucky chipper ones who seem to have caffeine naturally running through their veins) and I’m being a wimp about it so there’s no reason not to do things I should (like go for a run, go grocery shopping, wake up). In high school I attributed my chronic tiredness to early morning seminary. In college, shoot, I was a nursing student. Of course I was tired. But even on summer vacation or a non stressful week with plenty of sleep I still find it hard to feel energetic. At best I’m not sleepy. Given a choice my body would always choose resting on the couch even though I love to move. It’s hard to find the motivation to do it, but my brain usually wins and yells at my body until I comply...but sometimes my body wins, and I stay on the couch. And I’m still tired. My fatigue is not debilitating, I did train for and complete a marathon last month, but it was really hard to make myself run most days. Once I started a run it wasn’t so bad, the hardest part was getting my shoes on and out the door and making myself do it. So many days I just wanted to take a nap instead.
Starting in highschool I developed “crunchy” knees. When I walk down stairs I sound like rice crispies. The grating, or “crunchiness” is palpable if you place your hand on either of my knees and I bend my leg in and out. Along the same lines my joints ache. Hips and knees. Not all the time, but especially after long periods of standing, stressful days, or sometimes for no reason at all. In high school it started with my elbows, but my elbows don’t bother me anymore.
Ever since elementary school I’ve had digestive issues. I remember car rides where I wanted to die because there wasn’t a bathroom available in the next 20 seconds…let alone 20 minutes. I used to get diarrhea frequently so painful I’d nearly cry and I’d have to bury my face in a towel as I sat on the pot. There was never an identifiable food pattern relating to my digestive woes. The pain has eased over the years, the diarrhea is not nearly as debilitating as it once was as a pre teen and teen. I’ve adapted to having certain issues as well as “singing” intestines. After nearly every meal, no matter what I seemed to eat I would get gas that would make my intestines sing-sometimes it sounds similar to a stomach growling. I’ve had people comment on my being hungry, when really it was just gas pushing against and travelling along my insides. It’s embarrassing. If I was going somewhere that was going to be quiet (like church or a class) I had two options: stomach growl because I’m hungry, or intestines singing because I’m not. Peptobismol tablets and simethicone are staples in my medicine cupboard. Sometimes I would take pepto before a car ride or a shift at work if I felt any inkling of discomfort or even if I didn’t, “just in case” because I never knew when I’d be hit with something. My biggest fear training for my marathon was urgently needing a bathroom. Have you seen those pictures of marathon runners in dinky shorts with code brown running down their legs? Oh man. I was so afraid that was going to be me…don’t worry. It wasn’t. My pre run meals I found I did best with turned out to be gluten and lactose free: chex, bananas and almond milk.
About seven years ago my family and I were at Disneyland. I put SPF 50 sunblock on my face. That night when I got home I noticed a light red rash on both cheeks. I thought it was because I had sensitive skin and the lotion irritated it along with being in the sun. I still have the same rash today. I avoided facial lotions with SPF in them, and only used sunblock when I absolutely knew I’d get burned otherwise. Sometimes the rash fades a bit and other times it flares, but it has never gone away 100%. Pretty sure now it wasn’t the lotion.
Starting about 10 years ago I’ve had several cavities (like almost every single tooth that could possibly have a filling does) despite good dental hygiene.
I am sensitive to lactose, but even when I completely eliminate it from my diet (like I did when I was training for my marathon for 5 months) I still had all of the above symptoms.
A week or so ago I saw a friend post something about going gluten free to see if it would help his eczema. My knowledge of gluten sensitivity and celiacs is/was limited, and never something I even thought would apply to me. I always felt so sad for people who couldn’t eat wheat. I did some research (since I also have a rash that just won’t go away-luckily it doesn’t itch and isn’t too noticeable with some make up- I can’t see it in photos) and wouldn’t you know all of the symptoms that I experience that I have just learned to accept as my normal may be attributed to my body hating gluten. I gave myself a half a week to mentally prepare myself for a drastic diet change and get my final gluten fixes (I eat a lot of whole wheat foods and foods containing gluten) and every time I ate something with gluten in it once I came to my hypothesis I felt like I was knowingly hurting myself. It was a weird feeling and I was kind of glad when Monday came. I’m trying not to feel sorry for myself or sad about it (I probably place too much joy in food- and a lot of my favorites are full of gluten) because if it is gluten sensitivity causing my abnormal norms it’s going to have to be a lifetime change. There are still many options and things that I can still eat. And if it really is a gluten sensitivity, I should be feeling better without it and perhaps I will learn to not want it if I know it makes me sick and tired.
Since Monday I started a 2-3 week gluten free trial and have nixed wheat, barley and rye from my diet. I’ve never read so many food labels in my life. In my online reading the recommendation is to consult your doctor before going gluten free and if you have enough symptoms being tested for celiacs since blood tests are less accurate if you don’t have as much gluten in your system, but I’m not consulting a doctor. I probably should, but I’m not. If my symptoms improve after 2-3 weeks this will be a change I’ll have to learn to love and I don’t need a doctor to tell me how I feel. If I don’t see any significant changes I’ll add gluten back and see what happens. So far the biggest change I’ve seen right away is no more singing intestines. It’s been a trip eating dinner and expecting the opera to start and feel no pressure or hear any horrifying whale sounds coming from deep inside. I definitely appreciate that change. I’ve learned MY normal is NOT normal, and maybe there’s a reason for it other than “that’s just the way I’ve always been”. I’m hoping gluten free can bring me there and that the rest of my symptoms also improve. If anybody has any favorite gluten free recipes, you’re welcome to send them to me, or leave them in a comment.