Thoughts on Summer

I love everything about summer. I love warm weather, sitting in the sun, swimming in the ocean, grilling out, shopping for seasonal fruits and veggies at farmers markets, and being able to wear flip flops. I grew up in a small beach town in NJ. My summers consisted of long days at the beach. When I was old enough I would ride my bike to the beach, stay there for the whole day, come home and shower, and go back to hang out at the boardwalk at night. I even picked a career (teaching) where I knew I would have my summers free so I could be a complete beach bum. That's not exactly why I decided to be a teacher, of course, but it was a big plus!

However, one thing I never realized about summer when I was healthy is that it's a completely exhausting season! Since I've been sick, the number of beach days I enjoy each summer has definitely decreased. (and not just because I live further away, although that does play a part) First of all, there's a certain amount of beach stuff that needs to be carried-- cooler, chair, beach bag, and occasionally I'll bring an umbrella. If I'm going by myself to meet friends it's exhausting to carry all of those items. (When I go with my husband, he carries everything for me. Now if only he loved the beach as much as I do...) Keep in mind that it's hard to find parking close to the beach. I have to lug my stuff from my car to the boardwalk to buy a badge, and then walk all the way down to the perfect spot on the beach. I usually take a break in between. Also, walking on the sand is hard and tiring. Of course it doesn't help to have the sun beating down on me at the same time!
Once I'm settled in my perfect spot, I can relax in my beach chair. I love sitting in the sun and going for a dip in the ocean. When I was healthy I could stay at the beach ALL DAY. By all day I mean, arrive at 10 am and leave at dinner time, around 5 or 6 pm. There is no way I could stay at the beach that long now. (Admitting this makes me so unbelievably sad!) Now I usually stay for a few hours because sitting in the sun seems to suck the energy out of me at a much quicker pace!

As much as I love the beach, these past few summers I've become more of a pool girl. My parents have a pool at their house. It's a short walk from their house to the pool. Plus I don't need to carry as much stuff. I just usually bring my beach bag filled with a towel, sunscreen, book, ipod, snack and a water. A much lighter load than my beach day necessities! The other benefit to the pool is it's easier to go for a short bit. When I drive 30 minutes to an hour to get to the beach, I don't want to just stay for an hour or two. However, if I'm staying at my parents I don't feel bad about just going over to the pool for an hour or two. A big plus is that the bathroom is close by and CLEAN! Beach bathrooms are the worst! The pool is definitely more convenient for me although in my heart I'm still a beach girl. There is something so relaxing about watching the ocean waves crash on the shore.

Of course, there are times when even going to the pool is tough. Earlier on this week, I was down at my parents to spend time with my brother, sister in law, niece and nephew who were visiting from IL. I just returned from my trip to Maine so I was not feeling good. I stretched my limits a little (actually, A LOT!) by making the trip because I don't get to see them often. Soon after I arrived on Monday, my mom and I took the kids, O and Ru, over to the pool. I quickly used up my energy by putting on sunblock, going in the pool, playing with the kids and just being in the sun.  After an hour or two, we headed home for lunch. I just wanted to eat my salad and then crash. Of course, since I was in a wet bathing suit, I needed to shower off before I could fix my lunch. After showering, I went down to fix my lunch. After I ate I realized it was only 2 and I was ready for bed. My nephew was asking who wanted to go back to the pool after lunch. Normally, a much more energetic, healthier me, would have said, Hell yeah! Okay maybe to my nephew I'd just say, Heck yeah! But I needed to rest. So I said I couldn't go.

I definitely struggle with accepting my health issues during the summer. I hate that I can't be out as much as I'd like to be. I don't feel bad about resting on the couch when it's a chilly day in January, but when it's a sunny, 80 degree day in July... I just want to be outside!

Sometimes it's just the little things...

When I'm having  a bad day, even these things are tough:


1. Email


2. Meal planning and making food lists


3. Writing blog posts


4. Uploading pictures on Facebook or Flickr or Ravelry


5. Knitting


6. Getting ready- shower, drying my hair, makeup (On really bad days I sometimes have to take resting breaks in between or I don't even bother with doing my hair or makeup)


7. Long phone conversations or visits with friends


8. House stuff- making the bed, laundry, sweeping, doing the dishes, unloading the dishwasher. Luckily I have help with cleaning every other week!


9. Taking my dog out on short walks


10.Yoga stretches


And yes today is one of those days which is why my blog post is short! I was upset this morning when I saw my husband took my keys into work because that meant I couldn't drive our car. Who am I kiddin'? I can't go out today!

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.

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

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.