Category Archives: CFS
By admin on January 21st, 2014
You never want to wish anyone ill, however, my family have all been sick this winter with pneumonia, bronchitis as well as the flu. Being the one with the auto-immune system issues, I assumed I would be right along with them, sick. However I have not! What?! How can this be? What joy this brings to my heart, not that they were sick, but that they were sick and I didn’t fall sick as well. How is it that the one with the compromised immune system was able to not catch all of these viruses from the sick people I was cleaning up after? I am shocked, amazed and very thankful! It is an exclamation that my body is getting stronger, my immune system has to be getting stronger. After three years with Chronic Fatigue I am seeing some improvement. What have I done? What do I think helped?
First and foremost, I have worked on my mind. When you are sick it is easy to wallow in your sorrow and self pity. Why is this happening to me? Why am I not getting better? Why is this taking so long? Instead, I made my mind turn to positive things when I wanted to think negatively. Making time for meditation, prayer and singing to lift my spirits. Instead of focusing on things I couldn’t do that I love like hiking, rock climbing, playing tennis, I turned to the things I could do. I specifically focused on something that gives me joy, photography. Opening myself up to doing something that pleases only me. It is not for production or for the approval of others. It is for the pure joy of doing it. We all need to make more time for whatever it is that fills our souls and bring joy to yourself.
I also got a Fitbit. If you don’t know what this is, it is a small thing you clip on your pants and it calculates how many steps you have taken, how many calories you have burned and how many miles you have walked. It then has a computer program that keeps track of your progress. On the program you can add your eating, sleep habits or patterns,weight or anything else you want to keep track of. Anyone who has an auto-immune system issue has the “crash” factor after trying to workout or even just plowing through your day. The Fitbit for me was my alarm system. Because your body isn’t going to tell you when you have done to much, the Fitbit is a way to help you track it. This has been huge for me. A normal healthy person should take 10,000 steps a day. After a few months of using my Fitbit, I realized for me not to have the “post exertion malaise” I needed to keep my steps between 5,000 and 7,000 steps a day. If I had a busy day with the kids, or a day when I was standing a lot, I made sure I only did 5,000 steps. This has helped me to exercise and slowly increase my steps without the crash. I think this is a huge part of why I haven’t gotten sick this winter. It is important for those with CFS to increase exercise gradually or you will be doing more harm than good. For me, it has been three years and I am now able to walk 1 mile at a fast pace without the crash. It is slow, but it will help you heal. Also, with this though is resting. When I would walk for exercise, I made myself lay down on my bed for 20 minutes right after. It was hard to stick to this because I always have so much to do. But resting is a must! Allowing yourself to truly rest, clear your mind, meditate and let your body recover from walking.
Finally, vitamins. I have been taking 200mg’s of CoQ 10, B complete, 10,000 mg’s of D, Protandim and coconut oil. For me, these seem to really help. As I stated in my previous blog post that I did cut out all sugars. I think this is also a key because we don’t realize how much sugar is in processed foods. Sticking to meats, veggies and if I want something sweet, dark chocolate chips. Being strict and staying on this schedule, over time is helping me get well. Over the holidays when I did eat sweets, I was amazed at really how bad I felt the next day. It really feels like you have the flu. So, for me cutting out sugar was huge.
So for today, I am happy, I am encouraged and I am making progress however slow it may be.
By admin on December 1st, 2013
December 1 2013,
As you can see I have not really gotten into blogging on my CFS. Today though was an unusually bad day and I wanted to blog about it. I woke up feeling terrible. It is Sunday and I was really looking forward to going to Church. It is the first day of Advent and I was going to make wreaths at church with the children, go to church and then have lunch with my parents. After a night of no sleep and a month of not going to church due to one child having pneumonia and the other child having bronchitis. I am worn out. I so miss going to church and having quiet time to pray and listen and be in community and take communion. Today though, once again, we were not going to make it and it just broke my heart. I know God loves me regardless of if I make it to church or not, but I miss it desperately. I am so thankful that we have Seacoast Church, our old church from Mount Pleasant. They have a live on-line Church service every week, so we can still worship and have a message. Today, I cried. Not because we couldn’t go to church, or because life is hard. It really isn’t compared to most. I cried because having CFS is so isolating. No one seems to understand or get it. I know God knows. My heart breaks because I so want to be of service to the Lord and I can barely make it through the day. My heart longs for my life to have purpose and meaning for His kingdom, yet some days it is all I can to do exist. I could gripe and complain, but what good would that do? I think that is why I haven’t wanted to do a blog. What would I say? I am having a hard time? So what? So are the thousands of people in the Philippines who have lost everything in the tsunami. Or those who’s lives were destroyed by the tornadoes and storms that hit the mid-west. Who am I to complain when I have a loving God, loving husband, all my needs provided for me, two beautiful children. Who am I to complain? Shame on me.
I think the hard part is staying positive in the midst of your daily struggles. We know that there are people out there who have it worse than you. There will always be people who have it worse and those who have it better or easier. However, that doesn’t change My reality? How do I change my reality? How can I have joy in the midst of physical pain? How can I have an attitude of thankfulness when I look perfectly normal, yet feel so sick? When people think I am fine, yet don’t understand why I can’t do things, make it to church, travel for the holidays, have a job, volunteer and give to the community or be more involved at the kids’ school. They see me as lazy. Our culture says, ‘Produce, be productive, climb the ladder of greatness. Have more, do more, give more.’ I’m not even in the game. How can I be thankful for being sick? I am thankful for so many things, but how can I see my illness as a blessing?
I know God uses everything for good for those who love him and seek him. It is just so hard to see how I can help others see Him more clearly when I can’t “do” anything. I pray and yes I know intercession and pray is a powerful tool used by God and the Holy Spirit. But there are days I am too tired to do that. I know life is a journey and there is a chance to learn from every opportunity and I know I will learn much from this one day when I am able to reflect back and see how far God has brought me. But for the meantime, it is hard and I am sad. I am sad for my husband who is having to pick up the load of all I am not able to do. I am sad for my children that I can’t play with as much as I would like or do things with them that my heart desires, but my body just won’t let me do. I hate the word tired. So, I will be blogging on these questions as I go through this journey and we will see the good, the bad and the ugly! That’s all for today.
By admin 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.