Sometimes you just have to laugh..

I didn’t sleep well last night. I woke up at 3:30 and never fell back asleep. I woke up thinking about Christmas gift ideas and then I had a hard time shutting my brain off. So I knew when I got out of bed this morning around 6:30, today was going to have to be a chill day at home. Plus it was a rainy, damp, chilly day which is when my fibro body aches and fatigue are worse. I started my day by going to gentle yoga. It was hard to get there because part of me just wanted to stay in bed, but I was so glad that I went. We did some gentle stretching poses to help prepare for backbends. Most of our poses were done using the chair. On my way home from yoga, I stopped by the knitting store so I could pick up yarn for a Christmas gift. After that, I was beat! I just wanted to curl up on the couch. I have a confession to make, I didn’t even change out of my yoga clothes (before you say, “Ewww. ..gross!”, remember I went to gentle yoga.. I didn’t sweat at all). After heating up a bowl of lentil soup (leftovers from last week), I took a nap. Besides taking my dog out for quick walks, I pretty much stayed in and rested today. I watched some tv, emailed, knit, read, and snuggled with my dog. Even with all the resting I did, I still feel like I did too much.

Hopefully, I’ll sleep better tonight. Sleep is so crucial. When I don’t sleep well, the little energy that I have is minimized even more and my symptoms (headaches, body aches, sore throat) get worse. So frustrating! But that’s just my reality. I have days where I just need to veg out and rest up in my comfy yoga clothes and slipper socks and drink lots of tea. It’s just funny because not once did I think that at 31, I would be going to gentle yoga with all the grandmas, knitting, and then taking a nap. I guess sometimes you just had to laugh and make the most of what life brings.

“Make the most of yourself, for that is all there is of you.” Ralph Waldo Emerson (Thank you Good Earth tea!)

Transforming Thanksgiving leftovers into something new

I consider myself a “foodie.” I love trying new recipes and different cuisines. I used to eat whatever I wanted when I was healthy. I never was a person who dieted. I pretty much just ate healthy for the most part, but definitely enjoyed my wine, bread, cheese and chocolate.  I have tried out a variety of diets since I’ve had CFS—no gluten, no dairy, no sugar, Candida diets, raw diets, etc. I’m not sure if any particular diet really helped. I do know for sure that there are certain things I should avoid, such as caffeine, alcohol, gluten, and sugar. Sigh!

Cooking can be very exhausting especially on a day when I have to do errands. So I love, love, love leftovers.  I especially love to recreate my leftovers into something new and exciting. Today I took some leftover turkey from Thanksgiving and transformed it into a tasty salad. I found a recipe on realsimple.com  for a Turkey Waldorf Salad. I changed it up a bit to fit my diet. I do this often with recipes. I’m still trying to avoid things with many ingredients and things that contain sugar. So instead of using mayonnaise, vinegar and sour cream, I used 0% fat greek yogurt with a splash of lemon juice. I was very pleased with how it turned out! Also, I added dried cranberries for a little extra color and flavor. The dried cranberries I get are from Whole Foods and they are sweetened with apple juice which has less sugar than Craisins! This will also be a great salad to make with leftover rotisserie chicken!

Turkey Waldorf Salad (Serves 4)

Ingredients:

·         Few tablespoons of Greek Yogurt (I prefer Fage Total 0%)

·          Splash of lemon juice

·         Celtic sea salt and black pepper

·         1 cup shredded roasted turkey (or chicken)

·         1 celery stalk, sliced

·         1 green apple, cut into ½ inch pieces

·         2 tablespoons chopped toasted walnuts

·         1 tablespoon dried cranberries

·         1 small head of red leaf lettuce, torn in pieces  (or I just used Earthbound Farms mixed baby greens)

·        
Directions:

In a medium bowl, mix the turkey, celery, apple, walnuts, and cranberries. Add the greek yogurt, lemon juice, Celtic sea salt, and pepper to the bowl. Mix it together and taste it to see if you need more or less of anything. Then place some lettuce on a plate and place some of the turkey mixture on top. Enjoy!       (Also, I used the leftover turkey salad mixture for my husband's lunch the next day..  I toasted two slices of bread, put a little mayo on,  and then a scoop of the turkey salad. I hope he likes it as much as I did!)

Steve-- you are the best thing.. that's ever happened to me!

So what do you do?

This is a question I used to love to answer. Instead of just saying 4^th or 5^th grade teacher, I would go on some long rant about how I love to challenge the minds of nine and ten year olds, helping them to fall in love with reading and find their voice as writers. Now I dread this question. Even though I have decided right now that I’m not going to work full time (for health reasons), I still want to say that I’m looking for a job. That’s better than not working at all, right? It would be easier if I was staying home and raising a child because then I could just say I’m a stay at home mom. But somehow I can’t exactly say I’m a stay at home mom for my three year old black lab.  I’ve even had people comment how I’m lucky that I’m not working. Lucky? The grass isn’t always greener, I want to say.  I just smile and nod, and think I wish I was working. Why are we so obsessed as a society with work being the thing that defines us? This is something I struggle with immensely.  I feel like I’m being lazy and I should be contributing to society in some way. It seems so selfish to be home focusing on my health. But the truth is, if going food shopping is exhausting, I really am not healthy enough to commit to a full time teaching job right now.  This breaks my heart! I recently even turned down a replacement third grade position because I knew deep down I’m not ready to work full time. The truth can be so painful!

So what do I do? No, I don’t sit and eat bon bons all day while watching soap operas. I try to keep as busy as I can without being too busy. Recently I started subbing in some local schools. The most I’ve worked so far in a week is two half days. The great thing about subbing is I can work as much or as little as I want. I already decided that I’m not going to work this week because with Thanksgiving coming up I need to conserve my energy. Also, last week I had a terrible bout of insomnia and I’m still recovering! I wanted to have some part time work so I can get out of the house when I’m having better days and break up my week. My husband works extremely long hours and I do get rather lonely. Also, having a chronic illness can be rather expensive because most of the doctors that I work with don’t take health insurance.

On days I don’t work, I usually try to plan my day with some activity and some rest. I have an ongoing to do list. However, I really need to prioritize my list and realize sometimes things have to wait. If I need to get food and do laundry, then I have to say no to other energy sucking activities like organizing my linen closet or cleaning the refrigerator. Planning is key. If I know I’m meeting up with a friend at the mall for lunch and some shopping, I won’t plan to get anything else done that day and I will plan to have leftovers for dinner. Luckily for me I have many restful hobbies that I enjoy, such as knitting and reading (and now blogging), so I’m not forced to just lay on the couch and watch tv all day! I also always get outside for little bits of time when I take my dog Raven out to play fetch or take her for short walks. On most days, depending on what I have going on and how I’m feeling, I will try to get in some light exercise. Right now I’m slowly working up my walking stamina. Also, I go to gentle yoga once a week and ideally practice a few stretches each day. I really never find myself getting bored at all!

So although, I’m sad that I can’t work right now, I try not to let it get me down. I try to make the best of my current situation and dream about what I’ll do when I’m healthy again. I look forward to going back to teaching when I know I’ll have the energy that it takes to do the job well.  I would love to go back to get my masters degree and become a reading specialist, or study nutrition and teach healthy cooking classes for children. Or maybe I’ll go another direction and get certified to teach Iyengar yoga and help people that are suffering with chronic illness through gentle or restorative classes. There are so many things that I want to do. And it’s frustrating to be trapped in a sick body! In order for any of my dreams to come true, I need to focus on healing. I need to try and live a stress free life. (if that’s even possible) I need to be kind to my body and rest when it’s exhausted. I need to stop worrying what people think and do what I know is best. I need to put my health first. Because if I don’t, I probably won’t be able to achieve my biggest dream of all….becoming a mother.

Professor Hyland, now fully recovered from CFS, states, "I think the inspiration with CFS is that you can get better, but you need to be careful and manage your lifestyle. Once you start, then you know that you are on the road [to recovery]. You have setbacks, but you do get there in the end. I feel that I am lucky to have recovered, and my message to those who haven't is 'don't give up hope'. You have to work at getting better.”

Read more in this article:

http://sciencecareers.sciencemag.org/career_magazine/previous_issues/articles/2004_06_10/noDOI.15456566522747237753

Why now?

I have wanted to write a blog about what it’s like to live with chronic fatigue for many years. There were numerous times over the past three years that I came very close to starting one. My hesitation was me. I was holding back. It wasn’t that I was too fatigued to write, maybe some days that was true, but it was more than that.

First of all, I know I’m not the best writer. So I worry about that. My first blog post I must have revised countless times and had my husband check it.  I still don’t know if it’s perfect, but I clicked ‘publish post’ and there was no looking back. Even though I taught 5^th grade language arts for 2 years and writing was always my favorite subject to teach in 4^th grade, I don’t consider myself a good writer. Maybe my writing is good enough to be a model for 10 year olds, but is it really good writing? I definitely am not the writer in my family. School always came harder for me; I’ve always had to work really hard to succeed. Anyway, I know writing a blog is more about writing from the heart, and that’s what I’m trying to do. I will try to be less obsessive and critical of myself. Didn’t I always tell my students that if you write from your heart you can’t go wrong?

Secondly, I am a little scared. What will people think? Will they think I’m just complaining? Will they believe me? What will they think? Will they even read what I write? It’s hard to share something so personal. I was a little nervous about putting myself out there and exposing all of the things that are going on in my life. It’s also embarrassing to admit what I’m  struggling with, even though I have no control over how I feel physically.

Lastly, if I write about it, then it becomes more real. I struggle daily with accepting that this is my life. I miss my old life so much!! I was so happy!! When I first got sick, I was in my 6^th year of teaching. I was one of those crazy people who loved my job. I worked extremely hard and put everything I had and then some into my career. (Looking back, this was part of my problem) A good day in my old life would consist of working out, lunch with a friend, shopping for hours, drinks and then a late dinner out with my husband, watching a movie or tv and maybe going to bed around 11 or 12. Now a good day is doing some gentle yoga, working on my knitting, reading, watching my dog run outside and play fetch, cooking dinner for Steve, actually eating together (something we rarely do because of his crazy schedule), curling up to watch a movie and going to bed around 9:30 or 10.

Even though it took me a while to get this whole thing started, I’m already glad that I did. Even if no one reads what I write; it’s therapeutic. And who knows, hopefully, I can reach out and help people who are struggling with the same frustrating illness or help others understand more about CFS.

But you don't look sick...

I was subbing today when one of the third graders asked me, “Are you tired?” I paused before answering. Oh no, he knows! My mind was racing. Did my under eye concealer wear off revealing the bags under my eyes, showing that I didn’t sleep well despite Ambien? Can he tell that I’m dragging as I walk around the room? Sure I’d rather be curled up on the couch with a good book and a cup of vanilla rooibus tea. I know I’m not my enthusiastic self, but I’m trying.  I’m trying! I’m here, aren’t I? I wanted to say, Buddy, you have no idea!

Instead I said, “Why do you ask?”

Bracing myself for his reply, he said, “Cuz I’m tired.”

“Oh, you are. Well school is almost over,” I stated. Phew!

When I meet people for the first time, they probably have no idea that I’m sick.  I take time to look presentable. I put on some makeup to look more awake. I put thought into what I wear.  I believe that if you take time to present yourself in a way that’s put together, then you’ll feel better. Most of the time, this does help. I also try to walk around with a smile on my face. I make small talk with the cashier at the food store. I stop and talk with a neighbor when I’m walking Raven.  It definitely takes more energy to be as outgoing and socialable as I used to be. What used to come so natural to me takes effort on my part.  I get exhausted after a long social event where I have to be “on.” If I acted how I really felt, I would probably come off as bored or not interested, which isn’t the case. But what is my other option, keep to myself by staying in my house all day, lounging in pjs? Sure, I do have days where I crash and need to do that. But If I did that everyday, I think I would become miserable and would start feeling worse. I need to fake it til I make it, in some respect.

It used to bother me when people who knew I was sick, would say, “Oh you look great. Are you feeling better?” I know that sounds terrible to say that I’m annoyed by a compliment, but I viewed it as they didn’t believe me. I thought that if they say I look good, I can’t be sick, right? I now know this is completely wrong. And I’m glad that they weren’t coming up to me telling me I look like crap. That would definitely be worse. I got over it and learned to say, “Thank you.”

In the end, it’s probably a good thing that I don’t look how I feel.  Although, I can’t hide how I really feel from the people who really know me. (Not that I would want to) I think this is because I can relax and be completely honest. When I visit my parents and I don’t feel well, I don’t feel weird telling them I need to go lie down and take a nap. My mom and I are really close. We talk daily on the phone and she can instantly tell what kind of day I’m having simply by how I say hello. But even she will say when she sees me, “You look great. Do you feel great?”

So does that just mean you're really tired?

I’ve been living with Chronic Fatigue Syndrome for a little over three years now. It’s a very frustrating illness mainly because many people don’t understand what it means. I know many people are tired, but CFS is much more than just being tired. No, I'm not just lazy or depressed, my body hurts and is constantly fatigued.

The best way I can describe how I feel is to think about the flu. On my worst flare up days, it feels like I have a bad case of the flu. I have absolutely no energy. It is exhausting to fix breakfast. My whole body hurts and is weak. I will have a bad sore throat and a migraine like headache. My legs and arms will feel like they each weigh hundreds of pounds and even doing simple things like drying my hair is exhausting. On these days, I need to rest as much as I can. Bad days can last for a day or two or up to a few weeks or months.

On my best days, I feel like I’m just getting over the flu. I still wake up with a headache and feel unrested. However, after breakfast and showering, I may not feel as achy. So then I will be productive: food store, maybe some restorative or gentle yoga, and some cleaning or laundry. Then it will hit me like a ton of bricks. My body will be back to feeling weak and achy, my throat will starting hurting again, joint pain will flare up, fatigue will worsen.. etc. Then I’ll suddenly have to lay down.

I can't remember the last time I woke up without a headache. I can't remember the last time I had energy all day. I can't remember the last time I felt like myself. I used to be such a high energy person- a bubbly, hardworking teacher, very sociable-always going out to happy hours or shopping after work, and tough workouts at the gym including weight training and kickboxing. I feel like I'm trapped in the body of an elderly woman, not a 31 year old!

This illness affects me in some form each day. The thing is I can rest and sleep as much as I want, but it doesn’t make it go away. But stress and doing too much makes it worse. So it’s a fine line of deciding what to do, and what not to do.  Listening to my body and trying to balance my life does help me control this frustrating illness as much as I can.