Resting up after Christmas

So I'm definitely having a post Christmas crash. Also, I think I may have picked up a cold because my throat is hurting a lot worse than usual and I have some post nasal drip. Fun! I definitely pushed myself way too much in getting ready for Christmas. And now I'm paying for it.


I didn't realize I had the extra bonus of a cold until Steve and I came back on Sunday. I sent Steve to the foodstore with a list. I was planning on making him his favorite chicken and chickpea soup because at the time I thought he was the only one with the cold. I just felt my "normal" CFS symptoms. However, once I sat down in my comfy chair to rest, I realized it was more.  When I got up to make the soup, I was feeling super achy and it hurt to swallow. After dinner, I rested and went to bed super early. I think I slept 10 hours that night.


Monday I was able to rest because Steve stayed home. So he helped me by taking Raven out. I think I stayed in my pajamas most of the day. I tried to ignore the Christmas gift clutter situation and just get some rest. Monday night I also went to bed super early. I believe I was falling asleep in the lazy boy chair around 7:30. I finally got up to get ready for bed at 8. I was sound asleep by 8:30!


Yesterday, I was feeling optimistic. I was definitely getting caught up on my sleep. I still didn't feel great so I agreed that today, since I was still snowed in, was going to be a rest day. However, I somehow managed to finish the laundry, unpack my suitcase, and then before I knew it I felt horrible again. What was I thinking? I went to bed early and hoped I would feel better the next day.


I was so disappointed when I woke up this morning still feeling terrible. I felt so weak, fatigued, achy, and my throat killed. I really wanted to visit with my family today, especially since my brother's family only had a few more days in NJ. As hard as it was to say no, I told them I couldn't visit. I had to stay and rest. Luckily, my family is super supportive and they totally understand. Today I was determined to really rest. I wasn't going to try and tackle the Christmas clutter, or take out boxes to recycling. I was just going to rest.


So this morning I thought I was "resting" while searching online about CFS, probiotics, vitamins, diet, reading blogs etc. You know, trying to find the cure for my health problems. All this did was stress me out. Should I take that vitamin? Oh, maybe I should add that vitamin back in. Oh this person did well on a raw diet, maybe I should try that.


Finally, I closed my laptop. I decided to really truly rest! I heated up some soup and made a salad. I had a relaxing lunch and then I took a nap. After my nap I did some gentle yoga stretches. I stayed in my favorite pose for a while- Viparita Karani (or legs up the wall pose) While I was there I even took my legs out into a V and then I brought the soles of my feet together in baddha konasana up the wall. Then I did some pranayama to try and tame my monkey mind with some meditation. (Pranayama is a Sanskrit word meaning "restraint of the prana or breath". The word is composed of two Sanskrit words, Prāna, life force, or vital energy, particularly, the breath, and "āyāma", to suspend or restrain. It is often translated as control of the life force- prana.)


I was so well rested, I finally had the energy to write a blog post. Although now it's 5:00, and I just realized that I still need to take Raven out and make dinner. I'm going to make myself rest in between. Oh wait, I forgot to unload the dishwasher and my sink still dishes in it. :( I can't do it all.  I must be too calm and relaxed after my yoga practice because I'm feeling slightly less type A. A good thing!

If you are what you eat...

Then I should be the picture of health! I mean, seriously! I eat healthy! I have tried every diet out there hoping it will heal me and give me my energy back. I recently went a whole year without sugar, grains, fruit except lemons, starchy vegetables including butternut squash, potatoes, and carrots, legumes, dairy except ghee, alcohol, vinegar, and caffeine. You're probably wondering, well what did you eat? I ate pretty much the same thing each day: eggs for breakfast with herbal tea, a BIG salad for lunch with protein usually chicken, lots of different vegetables, nuts or avocado, a homemade salad dressing of lemon juice, garlic and olive oil, and for dinner I'd have protein (pork, chicken, fish, etc) with a salad, and a veggie (broccoli, cauliflower, brussel sprouts,etc), and for snacks I'd munch on raw almonds.

Well as you can imagine, that diet got VERY old! I actually loved my big salads and still eat them all the time. But I really was getting bored of eggs. And something about just having a spinach omelette without cheese and toast is not very satisfying. It was also very hard to go out to eat or socialize. If I was invited to a wedding, instead of a clutch, I would have needed to bring a cooler filled with my salad and hard boiled eggs! (Luckily, I never had to do this!)

I didn't just wake up one day and decide to torture myself by cutting out my favorite things such as red wine, chocolate, bread, pasta and cheese. I, like all people who suffer from CFS, researched thoroughly and was constantly looking for the cause of my illness. I was convinced that my problem stemmed from a systemic candidiasis. I took the candida questionnaire and found myself answering yes to a few of the questions (I feel sick all over, was on the birth control pill for a few years). However, there is no accurate test that can confirm this problem. Instead, through diet, probiotics, and antifungals, it will just go away.

Well I originally started on a less strict candida diet, which included some low sugar fruits such as green apples, grapefruit, berries, and some dairy such as yogurt, sour cream, and cream cheese. When I wasn't finding results, I decided to keep going stricter. I researched and found that some people with candida can't tolerate any dairy or any fruit. And so it began...

Well in September, a year after I started this strict diet, I threw in the towel. One of the reasons was because my cholesterol was way too high. Also, I just was so sad about foods that I couldn't eat. So at first I added in some green apples, a little bit of quinoa, some hummus... Oh it was so good to be back. It was fun to add variety to my diet. I still ate very healthy. I continued with my salads for lunch, but also added in healthy homemade soups. I even went out to eat with Steve and ordered something right off the menu (without giving the waiter five alterations to my meal). On my birthday, in early October, we went out and I had BREAD and CHOCOLATE! I was really living it up.

A few weeks after I changed up my diet; I started to feel worse. I was also very busy and not exercising as much. In the summer I was actually taking a regular yoga class, and now I'm back to gentle yoga. Also, in the summer I had gradually worked up my exercise program. I was walking 22 minutes a few days a week. So what happened? Am I supposed to go back to eating nothing but roast chicken and broccoli? Is there really anything wrong with having a bowl of oatmeal? Or is it that I stopped exercising on a regular basis? Or is it beyond my control?

As much as I hate to say it, I mean need to go back to my strict diet for a few weeks. Then gradually add things in one at a time and pay attention to how I feel. I really don't want to do this. After all the chocolate is gone after the holidays, my home may once again be a sugar free zone.

A few of my favorite winter things

One of the things that is supposed to help with having a chronic illness is having a positive attitude. I really try to keep on the sunny side. I find that when I'm focusing on the good and not the bad, I can tolerate not feeling well. So I decided to make a list of things that have cheered me up this cold winter season.

1. Thymes Frasier Fir candle

This candle is the perfect Christmas candle. It's not overpowering. I especially like it because even though I have a fake tree, it makes my apartment smell like I have a real one. Plus, there is something about having a candle lit that just makes you feel all cozy! An extra bonus, the candle is just as beautiful as it smells!

2. Dagoba Organic Chocolate- Eclipse Extra Dark 87%

Okay so this isn't really a specific "winter" favorite thing. But it is something that I can't live without. It is my favorite dark chocolate. I only eat a little at a time with a few raw almonds... heaven!

3. Red Tea Good Hope Vanilla tea
I don't drink black tea anymore, but when I did vanilla was my favorite flavor. I was so excited when I saw this vanilla rooibus tea. It's so comforting! It's the perfect afternoon tea. Plus there is no caffeine so you don't have to worry about it messing up your sleep!








4. Uggs

These are the most comfortable winter boots. I love wearing these when I have to take my dog out in the bitter cold! I like to wear mine with leggings and skinny jeans. Just make sure you take the time to protect them before you wear them! These boots can get easily ruined in the snow!

5. Florida grapefruit

I love starting my day with a half of grapefruit. Grapefruit is so refreshing and tart. This is probably one of the few things I miss about living in South Florida.

6.Ruffled Echo Touch Gloves

Isn't it annoying when you have to take your gloves off to send a text message, change a song on your ipod, or check your voicemail? Well that's why I love these gloves. Not only are they cute and warm; they are functional! No more frozen fingers!! And they are super cute with the feminine ruffle! I have them in purple! Love!

7. Homemade Soup

I have become the soup lady according to my husband. I love making homemade soup in the winter. Soup is so comforting and good for the soul! My favorites to make are butternut squash, lentil, chicken chickpea, white bean and kale with chicken sausage (my husband's favorite) and good ol' fashioned chicken soup. To me having a big bowl of soup and a huge salad of dark, leafy greens is the perfect meal! Also, I freeze my leftovers once the soup has cooled in freezer ziplock bags. This way it doesn't take long for them to defrost.

Lentil Soup and salad of mustard greens and mixed baby greens

 

8. Soap Market Moisturizers

I usually hate scented lotions.
But I love these! They are home made right in Red Bank, NJ and the scents are all natural. My hands are always dry so I carry a small container of Market Body Natural Body Lotion (Oatmeal Milk Honey) with me. Also, I love the Market Body Butter Cream (Almond Milk). It's great to apply at night when you really want to moisturize.

9. Blanket cardigans

You're probably wondering what I mean by blanket cardigans. Well, I love drapey, comfy cardigans that almost feel like you're wrapping yourself up in a blanket. I find them to be very flattering and they work well with leggings!

10. Burt's Bees Beeswax Lip Balm

Just like my hands are always dry, my lips are always chapped. I love this chapstick!! It's all natural and very moisturizing. I always have one in my purse and then I also keep one by my bed so I can put some on at night!

Knitting is the perfect distraction



Sweater Dress I knit for Ruby's 2 year bday gift!



So since the title of my blog is "The Knitty Gritty" I decided to write a little about knitting. I started knitting 3 years ago just when I was in the beginning stages of CFS. I needed a stress relieving hobby. I knew that stress was making my health worse. I signed up for a basic class and started my very first scarf. My first project was a simple scarf, all done in garter stitch. I was immediately addicted. I loved how I could curl up, relax and knit. My husband's lazy boy chair quickly became my knitting chair. Sorry honey! After that first project, I learned how to purl. I believe my third project was a baby sweater for my niece Ruby and so I learned how to do shaping. After that it was a blur of projects where I learned how to knit cables (so easy!), seed stitch (not my favorite), knit a herringbone pattern (hurt my hands), and I recently even learned how to finish a sweater and put it together myself! I clearly fell in love with knitting. I used to knit one project at a time when I first started. Now I think I have 3-5 projects going at a time. It's crunch time where I'm frantically trying to finish Christmas presents. Yesterday I spent 4 hours in the knitting store doing the finishing a ballerina wrap sweater for my niece, Lucia. Even though it's exhausting to be in the store for that long, it's also fun. I love chatting with other knitters and I like having the support!





This is a cable baby blanket that I knit for my sister's baby shower gift. At the time, we didn't know if she was having  a girl or boy, so I stuck with a neutral color. I loved this cable pattern.

 

I love knitting projects for people. Seeing a picture of my other niece, Ruby, in her sweater dress or my nephew, Otis, in his striped sweater makes me so happy. I recently even taught Otis how to knit! It's so much more special to give someone a gift that you have made. And with this illness where I can easily focus on what I can't do, I like to feel productive with knitting projects. It's nice to know I'm capable of creating beautiful sweaters, scarves, hats, ponchos, and blankets for people I love. (and for myself too ;)







This is a cable infinity scarf that I knit for myself last year! I absolutely love it! The best part about knitting is when people ask you, "Where did you buy that?"











You're the type of patient who usually falls through the cracks

I actually had a doctor say this to me. That was very encouraging to hear. Most doctors don't know what to do with a patient like me. They run the basic bloodwork and everything comes up normal. No lymes,  DHEA is normal, etc. So they usually offer me some sleeping pills, Lyrica and pain medication for my headache. The thing is none of that will cure me. They don't know what is causing me to have constant headaches, fatigue, sore throat, body aches, sleeping issues, etc.


I've pretty much given up on doctors being able to help me. I've seen numerous doctors over the past 3 years. Western doctors will tell me up front that I will fall through the cracks. However, holistic doctors always promise they they can help me with their diets and vitamins. I don't know which one is better since neither have really helped me.


Currently, I'm working with a doctor who is also a nutritionist. He had me do a wide range of tests, including an elemental hair analysis. Friday I have an appointment to go over the results over the phone since he's in Florida. I know it sounds crazy to have a doctor out of state, and no it's not because I've ran out of NJ doctors. There was an article written up about this doctor in a magazine with a woman who had a similiar story to mine. I'm hoping he can help me in some way. This is an expensive illness especially when the only doctors who claim that they can help, don't take health insurance.


So I'm trying to feel optimistic today. But part of me is really worried that nothing will change. This will be the last time I'm going to put myself through tons of tests in hope that I will find what's wrong. I guess this means I'm still in the "denial" stage.

Just say no!

Things I have to say no to:
-late nights
-intensive workouts
-wine :(
-shopping marathons


Things I hate saying no to:
-meetups with friends
-yoga
-driving down to see family in Red Bank
-knitting
-subbing (okay maybe I don't hate saying no to this, but it's hard to say no to extra money)


Things I can't say no to:
-cooking
-taking care of Raven, my dog
-food shopping
-laundry
-sleep


It's really hard for me to say no. Finding balance in what I can do and can't do is frustrating and hard. What usually happens is I don't say no to anything and then in a day I'll end up doing way too much. Wednesday I drove to my parents (50 min drive). After I heated up some soup and ate lunch, I took a nap. Then I went down to a bookclub (another long drive). The drive was tiring but it was worth it to see some friends I used to work with. A few hours later, I drove back to my parents exhausted. Then Thursday, I went for a knitting lesson early in the morning and ended up staying in the shop for 3 hours trying to finish a Christmas gift. I came home and ate a late lunch. I took a nap on the couch in the quiet house. Soon after I laid down, my dog was sniffing my face, her way of telling me she had to go out. I took her for a brief walk, went to the market, helped with dinner and packed up my things.  When I sat down to eat dinner, it hit me. My whole body hurt. I was overwhelmed with exhaustion. My throat was killing me, I didn't even want to eat. I started to panic. The thought of driving home at 6:00 pm in the dark was torture. The past two days felt like a marathon. Instead of bolting through the finishing line, I felt like I was inching along like a slug. A beat up slug. I drove home, carried some bags in and collapsed in my lazy boy chair. I couldn't move my legs. My arms and legs felt like they weighed thousands of pounds. I wanted to get a drink of water, but couldn't move. I wondered, what could I have said no to?

A new normal

Someone posted this article on another blog that I read. It's all about the stages of adjusting to a chronic illness. The stages mentioned are denial, fear, anger/frustration, grief/depression and then eventually acceptance. I really like how the writer describes each stage. I also feel like I continually go from one stage to the next.


I wanted to share an excerpt that really spoke to me:


" I love how Bruce Campbell says that acceptance involves the willingness to build a new life.   He discusses a great analogy on acceptance from one of his self-help groups.  The woman wrote an essay, “Welcome to Holland”, where she says that having CFS was like planning a trip to Italy but when the plane lands, you’re told “Welcome to Holland.” 

“Holland!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy.” But there’s been a change in the flight plan. You have landed in Holland. And there you must stay.
The important thing is that it’s just a different place. You must buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would not otherwise have met. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there a while, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
So, welcome to Holland. Along with the patient in your life, you have landed in an unexpected destination. You have experienced the loss of a dream and are challenged to adjust to a different type of life than you had planned. You have probably lost some companionship and, instead, may have taken on new responsibilities. But, like the person in our class, you have a choice to dwell on what you have lost or to seek out new possibilities.

This is not the life I signed up for. I really struggle with acceptance because I don't want to believe that this is how I'm going to be for the rest of my life. Instead, I try to focus on accepting how I feel on a daily basis. Instead of thinking, I'm never going to be able to have energy again. I try to think, today I may not feel well but I will try to make the best of it and hopefully tomorrow will be better.


My faith has really been challenged through having CFS. I am constantly repeating Jeremiah 29:11 over and over again: "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." It's so hard for me to trust and let go of all of my worries and fears. I find myself planning things for when I feel better. I try to plan when I'll be able to have a baby, when I'll be able to go get my masters, or when I'll be able to exercise like I used to. But when I'm filling my brain with these thoughts, it doesn't do me any good. Because then I'm constantly thinking about what could happen and not thinking about what I can do. I need to get used to this being my new normal.


So have I fully accepted that I have CFS? I don't know! I guess it depends what day you ask me!


I highly recommend that you read the whole article:
http://www.fightingfatigue.org/?p=8806

Why is it that I’m more tempted with a job than with chocolate? What’s wrong with me?

So last week I wrote an entry, “So what do you do?” I was trying to convince myself that I’m okay with not working and focusing on my health. (Notice I used the word trying, this is a constant struggle for my type A self.) This morning my phone rang, and it was an unknown number with my area code. Hmm… could it be my hair salon confirming my hair cut on Friday? Could it be one of the substitute callers? I decided to let it go to voicemail. I usually screen my substitute calls. That way I can think more whether or not I want to take the job. Soon after the phone stopped ringing, I saw I had a message. I put it on speaker while I sipped my tea.

Well it wasn’t Fringe Salon or either of my substitute callers. Instead it was a school calling to set up an interview for an elementary teaching replacement position. (either 3^rd or 4^th grade) I was completely shocked because I didn’t even apply or send my resume in! The position is in a district where I worked last year for a maternity leave. My CFS was more manageable last spring and I was really thinking that I was getting over it. This same district didn’t hire me for a full time position this year. I even interviewed with them for a part time position and didn’t get it.  Never mind the fact that I’m annoyed with them, and don’t really want to go through being rejected again, I’m just starting to come to an understanding that I’m not working now. And now, this???

I definitely have a sweet tooth and love dark chocolate. I have some right now frozen in my freezer. The good stuff, Dagoba! I know I shouldn’t really eat sugar, so therefore it sits in my freezer. However, I also know I shouldn’t work right now. So why am I excited and thrilled that they called me? Why am I convincing myself that I can try to manage? I truly miss having a teaching career. I loved going to work each day. However, I will admit that when I worked last spring it was truly difficult at times. My weekends and nights were all about rest and recovery. It killed me to not have the energy that I used to. Teaching is a very demanding job!

So in the end, I decided not to go in for the interview. L Until I have more consistent good days, I can’t think about working full time. What a crappy, harsh reality! Looks like it’s time to get that chocolate out of the freezer.

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.