CFS#1

CFS#1

By on May 23rd, 2013

Ok, Well here I am 2 years into this journey of Chronic Fatigue Syndrome. My husband keeps encouraging me to blog about this journey and experience. I have been reluctant because I want my site to be positive, uplifting and inspiring. I want people to grow closer to God through my photography and see His beauty and majesty in nature, not hear me complain about something that is so not fun and such a challenge. It seems very self-absorbed.  Also being from the old school, blogging is new to me and it is hard for me to comprehend that anyone would want to take the time to listen/ read about my struggles.  However, I have to listen to my husband because he loves me so and I will try anything to get well.  Even if this blog helps only me with my own struggle by getting it down on paper, I guess that is worth it.

So, here we go.  A bit of history first. In August 2011, I started not feeling well, hot flashes, fatigue, mild fever, not sleeping well, aches and pains. I honestly thought it was pre-menopause or an extended case of the flu. So, after a few different doctors and lots of tests later my doctors told me I have an auto-immune disease. What in the world is that? Auto-immune diseases are where your immune system is not functioning properly and it attacks the good cells in your body. There is an entire list of them like Multiple sclerosis, Lupus, Sjogen’s syndrome to name a few. They weren’t sure exactly what was going on, but my immune system was not functioning normally and it was attacking my body, i.e. thyroid functions in particular. What could be the cause? Well, it is hard to know with these things, but for my case there was the perfect storm brewing.

First, Epstein Bar Virus. Yes, like most people I had Mononucleosis in high school 1989. However, I had a very bad case and the doctors at Mayo clinic told me it could pop up again in the future. I didn’t believe them though because I had never heard of anyone having Mono twice. Then in the winter of 2011,Februrary, I have breast surgery, the only problem with that is I had been fighting off a sinus infection and had a mild fever. The doctors told me they would put me on an antibiotic drip and it should be fine. And it was as far as we could see. I recovered fine from the surgery, yet slower than normal. Sinus infection cleared and I was good to go, yet my energy was still lacking.  I started work at a preschool in August and that is when my problems began and the chronic fatigue disorder was kicked into full gear. The trauma of surgery, infection and working with 3 year olds and germs, my body revolted. After a few months of struggling with why I wasn’t getting well, my doctors did and Epstein Bar virus test that came back positive. 95% of people have this virus dormant in their blood system. When it is dormant the test will show a number of less than 1 like a .6 for example. My blood work came back at 3.86, off the charts. My thyroid numbers came back in the normal range, yet it was swollen to the point that it looked like I had a snake wrapped around my neck. Ultrasounds showed that I had a number of nodules that were growing. One had to be biopsied for cancer, however at this point we knew it was not cancer. All the research my wonderful husband has done and doctors confirmed that it is just the auto immune disease attacking the thyroid and if we can get my immune system functioning properly everything else will take care of itself.

That is where the struggle began. It is comforting to know what exactly is wrong and now we just have to fix it. Right?  You know you don’t have a life-ending disease, yet what is the road to recovery? How does this happen, what do we do next?  The road to recovery is slow and long. There isn’t a pill you can take or radiation that will make you all better. There are no quick fixes. The doctors wanted me to rest 3 times a day for 30 minutes. How do I do that with two little children? Resting isn’t in our daily routine of school, sports, ballet, homework, home cooked meals…. The food is an issue. We can’t just go to fast food or eat frozen meals. We have celiac, dairy, soy and nut allergies, so cooking all alone is in itself a full time job for me.

How do I get well? Well, it is easy, put yourself first! Easy right? Get on a schedule, rest 3 times a day, clean eating meaning no sugar, no carbohydrates like bread, pasta, no desserts, no alcohol, no dairy, no cheese, no yogurt, eat lots of veggies, slow, gradual exercise, up your vitamins and you are good to go. Piece of cake! Yeah Right!

Problem 1, putting yourself first. Here is my first problem, I call the personality flaw. Research has shown that people who get auto-immune diseases tend to be people pleasers, care givers, servant type personalities. Those who seek approval or self-worth from serving others. Unfortunately, this is me to a T. How do I change my personality? This is so ingrained into my being that I do it without even know it.

Problem 2, resting 3 times a day? Lay down for 20 minutes flat on your back and meditate. This would be a dream if I didn’t have young kids and a husband with dietary issues, cooking, cleaning…

Problem 3 clean eating- This for us wasn’t a problem as we really eat clean with all of the allergies in our family. However, one thing that I found that really helped was cutting out any sugar I would find in my diet. I find that when I eat more of a Mediterranean diet, I feel better. More olives, avocados, nuts, salads and vegetables rather than breads and pastas.

Problem 4 gradual, moderate exercise. The difficulty with this is exercising without raising your heart rate so you won’t have the post exertion malaise in turn making the fatigue worse. What does that mean? How do you do that? How do you monitor your energy? When your body doesn’t tell you until it is too late.  It is the oddest thing to me. I will feel OK and have a “normal” day not thinking or feeling like I have overdone it and then the next morning I can’t lift my arms. I can’t brush my hair and my legs are so weak I feel like I am going to fall down when I stand up.

How do you function like this? How can I care for my family when I can hardly make it through the day. The good news is from everything I have read, I fall in the “high functioning” group of people with auto-immune diseases. The problem is you look fine, you look healthy but people don’t understand why you can’t do things.  Why you wake up and can’t go to Church, why you can’t help out at school, why you cancel on going out with the girls because you have had a hard day. It changes everything and can be very isolating. But I am learning to slow my life down and assess those things that are truly important. That is all for today.

 

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