“But You Don’t Look Sick”

That’s the refrain I hear all the time, and it’s certainly what other people think.

I’m not pregnant, so my doctor’s appointments and therapies aren’t considered a matter of survival as they are for my pregnant co-workers’.

I don’t have a limp, a cast, a wheelchair, a cane, or some other obvious mobility impairment, so my join pain isn’t considered devastating to my daily comings and goings or ability to do my job sitting at a computer for hours on end.

I look tired, but that gets many “wait ’til you have kids!” responses if I dare mention it or try to explain fatigue.

To anyone else at the gym, in a waiting room, or in the grocery store I look normal and functional.  My CFS and joint pain/autoimmune disease is sometimes as debilitating as all those conditions above, but I must live up to the expectations of all the other “normal” people each day.

It’s confusing and hurtful to see and hear others brush off what is a real issue for me.  Daily life for me and for all the others suffering from chronic pain and disease is barely manageable at best and almost stifling in its complexity, frustration, and pain at worst.  Not to mention, the pain causes depression and anxiety, and may also prevent adequate sleep (a real and aggravating issue when one also has Chronic Fatigue Syndrome).

I used to be the best in school.  I still had to fight with chronic infections and with the pressure I put on myself, but I studied extremely hard to make sure I aced exams and completed homework.  In fact, in my years of study I only missed one reading assignment the week of midterms.  I devoured books, both for class and at my own leisure.  I could remember movies and made lists of the ones coming out I wanted to see.  I met friends for coffee or meals frequently, and actually didn’t have to cancel.  I made sure my room or flat was clean, did my laundry in a timely fashion, and kept my living space functioning.  That was all when my chronic condition was mostly due to colds and the occasional knee popping out of its socket–things that were regular, but isolated incidents.  I had CFS at the time, but it was more manageable at the time and uncomplicated by an inability to sleep at night.

So, you’re right.  I don’t look sick.  I probably look quite “normal”–I’m either in a workout outfit that’s clean and well cared-for or a work outfit comprised of slacks, a button-down, and jewelry.  I usually have makeup on outside the house when not at the gym or on a hike, and I make sure that my nails don’t get too scruffy and that I bathe regularly no matter how poor I feel.  I don’t eat out, so you see me eating fresh foods I take hours to prepare myself because I have to.  You see me walking on my lunch break and working out in the gym because my back does better with movement, and because the more I walk the less I feel the fire in the joints of my feet.

So on behalf of those who also must go through great lengths to function at a percentage of what you do: listen to us, have compassion, and understand that each person has his or her own battle which is ongoing.  That person who uses a handicap parking pass and walks into the store may be having a good day, but may not be able to walk very far to accomplish small errands.  That friend who has to cancel plans or doesn’t want to go out may be fighting depression or pain.  That coworker who looks fatigued all the time but has no “excuse” because he or she doesn’t have any stressors of note may be fighting a chronic condition.

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Essential Oils

Okay, hear me out.  I know I can come off a a bit of a hippie, but just hear me out before you run screaming from the co-op-loving, organic-eating, essential oils-hawking, kale-adoring girl.

I’ve been veering away from traditional medicine for a while now after so many specialists have failed me and prescription medications haven’t worked.  Pilates, strength training, massage, and movement are much better treatment options for me.  So when a friend gave me an information session about essential oils I was curious.  I see the massive displays in stores, and I’ve heard about ADHD/ADD symptoms lessening significantly when oils are diffused or applied.  Okay, I’ll try it.

I bought a starter kit, and my husband and I immediately felt more relaxed that evening when we used the lavender oil in the diffuser.  I coupled that sometimes with a stress-away blend, and I honestly do feel less stressed.  I also tried copaiba, which is a dietary supplement.  This one did seem to make me feel less pained and irritable in the month I took it consistently, and there was a noticeable uptick in my aggravation when I stopped it.  (I think this is pain-related.  Perhaps I don’t realize my pain is higher on a given day when I think about it, but MAN, is my mood different depending on my pain level.)

I’m branching out into blends and other topically-applied oils like vetiver to boost my mood and energy.  I keep rosemary at my desk for a little boost when I’m tired (since I don’t drink coffee except for a few ounces on very special occasions).  I got a sample of an essential oil pain relief cream which has peppermint and other cooling ingredients, and I was amazed that I got immediate relief.  According to my FitBit, I had the largest chunk of deep sleep I’ve had since updating my tracker to monitor sleep.

If you are at all interested in finding a more homeopathic way to treat pain or illness, I would encourage you to investigate essential oils.  While I haven’t had the dramatic results I was hoping for (save the cream), I think I’m happier when I make a conscious effort to incorporate them into my daily life.

Allergy-Free Chocolate Cake

Gluten-free, vegan, processed sugar-free, soy-free, and corn-free cake with frosting!

 My husband recently had a birthday.  The first summer we were together after about 9 months of dating I took it upon myself to bake him his very first homemade birthday cake.  It was strawberry, and as per usual, I decided to go the hard way and handmake everything–no gelatin, jams, or other pre-made helpers for flavor.  Nope.  I needed to make the strawberry puree on my own, and at the time all I had was my hands, a spoon, and a strainer.  No hand blenders, Vitamixes, or food processors for this girl!

He loved that cake, and so after these past two months of his support with my diet I decided to try to find a cake that would work with what I was allowed to eat.  I felt it was some small way to repay him for all he’d done for me.  And, as he’s a bigger chocoholic than I am, it needed to be chocolate.

This is the recipe I used, and OH BOY.  The batter on its own is delicious, and as it’s egg-free, you can consume it straight out of the bowl if that’s how you prefer to roll!  The cake itself is dense and fudgy, and it has more of a brownie consistency.  The recipe makes enough for two 9-inch cake tiers, but with the absence of traditional flour or egg it doesn’t rise much.  For an impressive cake that’s of a more normal height, I would suggest doubling the recipe.

The frosting seems a bit marshmallowy in flavor to me.  Fluffy, not too sweet, easily-spreadable, and delightful!  Below makes enough for two cakes, in my opinion, but it may be just right if you double it as I indicated above.

 

Allergy-Free Chocolate Cake

Ingredients:

2 cups brown rice flour

1/2 cup tapioca flour

3/4 cup unsweetened cocoa

1 1/2 tea. baking soda

1 1/2 tea. xanthan gum

1/2 tea. sea salt

1 1/2 cups boiling water

1/2 cup prunes

1/2 cup dates

1/2 cup coconut oil

1 cup dark agave nectar

2 table. apple cider vinegar

1 table. vanilla

1/2 to 1 teas. dry instant coffee

Method:

  1. Set oven to 350 F and grease two 9-inch baking pans.  (I used coconut oil spray here.)
  2. Combine the prunes, dates, and boiling water and let soak.
  3. Meanwhile, combine the two flours, cocoa, baking soda, salt, baking soda, and salt into a medium- to large-sized bowl and stir to combine well.
  4. In a blender, combine the prunes/water mix, vinegar, coconut oil, agave, vanilla, and coffee.  Blend until smooth.
  5. Pour the wet ingredients into the dry and stir to combine well.  Batter will be sticky and fairly stiff.
  6. Evenly distribute the batter between the two tins, and spread as evenly as possible to fill the tins.
  7. Bake for 25 minutes.
  8. Pull out of oven and let cool in tins for approx. 10 minutes.
  9. Flip onto baking racks until cooled completely.

 

Allergy-Free Chocolate Almond Frosting

Ingredients:

2 cups vegetable shortening

1 cup arrowroot powder

1 cup agave nectar

4 tea. vanilla

2 tea. almond extract

1/2 to 3/4 cup unsweetened cocoa

Method:

  1. Add all ingredients to a mixing bowl and whip with a hand mixer until well combined and fluffy.  Add more of the extracts or cocoa powder to taste.
  2. Optional: garnish with slivered almonds in the middle of the layers with the frosting or vegan chocolate chips for a little texture.

Fitness

I often compare my fitness to my past self’s or to others.  It’s something that I cannot get past, even though I know I shouldn’t think about what others are able to accomplish.

I recently had a garage sale, and getting ready for it meant two things: 1) going through each nook and cranny of the house and 2) sorting items into toss, sell, or donate piles.

I had to do the sorting bit a little at a time.  I can’t just go all day as I used to.  I remember marathon packing or organizing sessions in college and as a kid, but my body doesn’t give me that kind of stamina anymore.  This is something that all chronic disease and chronic pain sufferers and specialists reiterate over and over again: pace yourself.  It’s often hard for me because I get “in the zone” and become so focused, but I’ve done my best to hold myself back from overexertion.

The hardest bit was actually sorting everything.  Making decisions about plates, bakeware, and old clothes as easy-peasy.  However, facing my college and postgraduate notes, articles, and books was extremely difficult.  I had to leave my PhD program so suddenly for such a difficult reason beyond my control, so that work feels very unfinished.  In addition, I look at my notes and articles, and I realize I don’t remember any of it.  None.  Nada.  Zip.  I recognize the names of works and characters like Sir Orfeo or Roland, but I can’t remember the details.  I know Sir Orfeo is the medieval incantation of the Orpheus of classical myth, but other than that…  I remember marching in Roland and that it’s of French origin, but what was the war and who were the characters?  It’s so hard to face the reality that my mind isn’t as it was in college or as a kid.

I understand and am thankful for the fact that my Chronic Fatigue Syndrome symptoms and chronic pain aren’t as bad as others’.  I’m not bedridden, and I can function usually without OTC painkillers or even prescription-strength.  But my mental and physical fitness seems to pale in comparison to everyone else’s around me.

I suppose the best I can do is just continue doing what I’ve been doing.  Go to my appointments, treat myself kindly, and eat as well as I can.  I can’t let comparisons to others weigh down my estimation of myself.  (Though, this is so much easier said than done, in my humble opinion.)

I also need to redefine “fitness” as it pertains to me.  I can’t remember social graces like thank you cards, if I’m in pain or fatigued I don’t register emails or texts, and I get overwhelmed easily.  I have to make my peace with that and hope friends and family understand.  I can’t remember things I’ve read or movies I’ve seen unless they’re ones I’ve experienced many, many times.  I doubt myself a lot because I sometimes can’t remember work processes, and so I ask questions.  I cannot expect to keep up with the brilliant academics on my Facebook feed who are at conferences and working in postdoctoral positions.  I cannot expect to be that Regency-era lady who is excellent at timely correspondence.  It’s a constant struggle to make myself believe this is okay, and it’s normal for me.  I’m doing as well as I can, and that’s all I can do.

Exhaustion

This week has been difficult.

Each day of the week save alternate Saturdays and Sundays I got to a different treatment.  Acupuncture, massage, Pilates, the chiropractor, and now also personal training (for glute and leg strength to help stabilize my core and back).  It’s completely exhausting, and it makes me feel pressured for time just about consistently.  I commute to work, am there for 8.5 hours, commute to treatment, get my treatment, and then commute home.  Most days I am out of the house for a full 12 hours.

I have found that working full time is the biggest source of this exhaustion, which makes sense looking at the duration of each day at work.  However, I find that it’s the emotional effort that takes its toll the most.

I have to make sure I’m out of the office right at 4:00 in order to get to whichever practitioner I’m seeing that day before rush hour traffic is too heavy.  I have to plan my little hourly walks in order to prevent more-than-usual back pain later in the day or week.  I have to consistently be the odd one out who is eating her packed lunches while everyone else noshes on birthday cake, pizza, or potlucks.  I attempt to share my joy in perfecting a new recipe only to get strange looks because I guess I am now that girl.  I have hardly any social life, as my appointments take up the bulk of my schedule outside of work, so I make a rather dull conversationalist.  It’s lonely and frustrating.

I was less aware of this when I was in college and at university.  I suppose I could hide it better.  Going from class to class, my day was broken up.  If I couldn’t take the stairs that day (I had knee issues in college, and my kneecaps could pop out of place randomly causing extreme shooting pain), no one took notice.  Any arrangements I’d made with the Disability Services Office and my professors were private.  I could take pain medications without feeling on display–what college student or researcher doesn’t pop a Tylenol once in a while?  It was no matter that I was living in the one-story dorm on campus, as it was for upperclassmen only, and I was friends with most of the others who chose its substance-free environment.

And as a side note, who isn’t a little different in some way as a college student?  Those who mattered to me (and who still do) were the ones who loved Harry PotterDoctor Who, and Latin, and those are the people I was around more than anyone else.  If they noticed, they didn’t care, and if they didn’t it was thanks to the fact they weren’t next to me 8 hours a day.  My tribe didn’t ever make me feel out-of-place.

My tribe these days is filled with my coworkers.  While some of them are amazing and supportive, the rest are cordial but not close.  Any mention of anything wrong with me or in my life–anything different–is looked down on and avoided by others if possible.  It doesn’t mean I don’t see the eye rolls or the vacant expressions when I have to request fruit at the ice cream social or not take on extra work in order to make sure I’m out of the office for an appointment.

Working with a chronic condition takes so much more than just those 8 hours.  I haven’t mastered it yet, and I’m looking forward to a day that is simply routine instead of a physical and emotional struggle each and every minute.