I suffer from ME/CFS and I want to share 5 things that helped me come out of the bed bound phase.
Hi, my name is Tracy Hagler and this is a picture of me and my precious daughter Ashlynn. ME/CFS, POTS & Fibromyalgia came roaring into our lives almost two years ago. I was a nurse when I came down with this illness. As hard as it's been, I’ve had to learn how to accept and manage my illness in order for me to be here for this beautiful princess you see in the picture. This illness truly has taken a toll on every aspect of our lives but we try to remain as positive and hopeful as possible.
I have the type of ME/CFS that comes in cycles. I have relapses and remissions (remission does not mean full recovery, remissions are a time when my symptoms are milder and I can manage and enjoy life inside my energy envelope without having severe crashes). I have been severely sick, bedridden and unable to eat for months at a time and I have also had periods where symptoms were tolerable and I could get up and make it to my daughters ballgames, go to the grocery store and make it to church. Symptoms are very unpredictable and my ability to do things can change daily. Here are a few things that helped me to manage this illness.
1.) I learned to listen to my body. If it was telling me not to get up, I didn't. The harder I tried to fight this the sicker I would become. I found that if I just laid there and rested, that my body would start healing. At this point in the illness my body was completely rejecting any exertion or stimulation. It took months of being bedridden but good days and remission did come.
2.) There were months that I was bedridden, unable to move or barely make it to the bathroom. It felt as if I had taken double rounds of chemotherapy, had the flu times ten, orthostatic intolerance, blurred vision, fever, shortness of breath, severe sleep apnea, tachycardia, an inability to eat, my skin would burn, pain in my muscles and soreness in my spine. For months I didn't know if I would continue living. Now that I have been through a few of these episodes I have found the number one thing that helped me through was God and fellowship with him. The other advice that I would give during these severe relapses is to take it one day at a time. I would try not to think about the fears that I had or what might happen in the future. I had to take those thoughts captive and just do that day. I would find something to take my mind off the suffering. Sometimes I would be unable to even look at phone screens or hear noise of any kind because it would cause me to get sicker. If you are in this phase of the illness, really the only thing you can do to help yourself is to not do anything. I had reached a point where I had improved enough to be able to watch a movie, read and listen to music, so that's what I did. I would try to find enjoyment and laughter in the small, simple things in life. Most of us have lost a lot of earthly things, our health, our jobs and even our ability to function, at times, and this is a huge disappointment and it takes time to be able to grieve appropriately. I continued to give God my grief, my fears and my thankfulness for all that I could still do. I relied on him even when the situation looked hopeless. God still heals and restores. He helped me not to lose hope. I realized I had no control over tomorrow, so I left tomorrow to God.
3.) If you are like me, you probably had no medical help to figure out why you were so severely sick and you basically had to rely on your own research to educate yourselves. While this can be great in many ways, at times it can also cause harm. I tried to avoid looking at the statistics and I also avoided reading or listening to anything that said I would never recover. This is a spectrum illness which means that there are different levels of severity and disability. Some people may be mildly affected, others moderate and some severe. We all have different symptoms. No two people are the same. What worked for you may not work for me. I also have POTS and fibromylagia but others may not have this and only have me/cfs, therefore, our treatment plans and medications would be completely different. There are some very positive things on the internet but I have found that there are also some very negative things too. I would always try to find and listen to recovery stories and positive stories so that I didn't lose hope.
4.) I tried to find my baseline energy envelope for the phase of the illness that I was currently in. I taught myself how to stay within that range by listening to my body and symptoms. If you have had this illness for any amount of time you have experienced the push and crash that is often times called PEM or post exertional malaise. This is the nightmare of this illness. I remember, after being bedridden for months, when that first week of a remission actually came and I was able to wash my hair more than once in a week. I was so thankful! The next week I was strong enough to wash a load of clothes and then the next week I was finally able to go to the grocery store and drive again. During week one if I did anything more than wash my hair it would send me back to the bedridden phase and it would cycle through all the phases again. This is why it was so important for me to listen to my body and my symptoms. It was a key component to help me work toward remission. Sometimes I wouldn't get up and do things, even when I felt like I could, for fear that I would crash and become bed bound again. I soon learned that when my symptoms decreased that this was the time to get up and move some. A simple walk through the house was building my muscles and my strength back. Each week I was getting better and able to do a little more. The key for me was to do some activity but not to do too much. My energy level changed from day to day and week to week. Some things I could do last week, I couldn't do this week and vice versa. There were times that I didn't have any indication that I was over doing it and I would become sick. That was super frustrating but I told myself that I wasn't going to lose hope even if I was disappointed. I listened to my symptoms and realized that they were often warning signs that I was doing too much, not always, but most of the time they were. I learned not to push through them because it almost always resulted in a crash.
5.) ACCEPTANCE. Acceptance was so important for me. This didn't mean that I had given up on my healing or recovery. This just meant that I had accepted where I was and I had accepted my limitations. For months after I got sick, I refused to acknowledge my illness and my limitations. I thought that if I accepted it that it meant that I had given up. So I stayed in turmoil and disappointment about the situation. I spent so much time trying to fix it and trying to find a way to get better. My family was affected, not only because I was sick but I was consumed in trying to fix this illness. I ignored my limitations and made myself more ill in the process. I worried myself crazy about what people thought and if people wondered why I wasn't working or why I wasn't at church, or why I couldn't volunteer to do concessions at the ballgames, or did they think I was just being lazy. When I was in remission, which is the only time people saw me, I appeared on the outside to look normal and healthy. No one seen my bedridden phases or the horrible suffering that I was going through. So I would try to live up to what I thought others expected. These people may not have even had any of these expectations of me. That's why it is so important to take these thoughts captive and not let them take up residence in our hearts. Some people might actually have had these thoughts toward me but it was only because they didn't really understand. I had to realize that they are human just like me. They may never understand and that's okay. I had to let go of that. I've always been a very outgoing and hard working person. I was determined to go back to work but I quickly realized that my body's baseline energy envelope was 70% less than what it was before I got sick. I was unable to do some of the things I used to do. If I tried to do certain things, my health would deteriorate. I quickly realized that I had to learn how to manage this illness and do it, in order to be here for my children and my husband. I believe every symptom associated with this illness is due to a malfunction in the autonomic nervous system which involves everything automatic. Our breathing, heart rate, immune system, blood vessels, circulatory system, body temperature, digestion and urinary system. With this illness it is usually physical and mental exertion that causes symptoms to flare. Most of us are safe if we stay in the aerobic phase of exertion but once we go into the anaerobic phase of exertion that’s when it can become dangerous. All of this slows us down and causes once simple tasks, to become difficult. Having limitations hurt my pride and my self worth in the beginning.
I found that if I could find a baseline energy envelope for whatever phase of the illness I was currently in that this was key for me to improve. Sometimes that was walking through the house for only once that day, other times I could go to the grocery store. Wherever I found myself, I tried hard to accept it. I stopped worrying myself with what others thought. I did what was best for me and my family. I no longer pushed myself in order to please others. I found, most importantly, that this illness can be managed and that it‘s okay to set healthy boundaries with others. I let my yes be yes and my no be no. I no longer fret about the things I can’t do but I try to dwell on all the things I can do. There are so many things I can’t do during a relapse but there are so many things that I can do during a remission period. I‘ve come to realize that my self worth doesn’t come from my performance, my accomplishments or even in what I can do. For me, my worth comes from knowing Christ. He is the one thing that has always been steadfast. If it wasn’t for him I don’t think I would have had the strength to make it this far with the illness. He has been a fortress and a safe place for me in the midst of a treacherous storm. And I’m still here and I’m not giving up!
I also realize that some people with this illness never have remissions and I pray fervently for you and your family. This is so heartbreaking and I couldn't imagine not ever having a remission. Please know that you are not forgotten. Encouragement and prayers are going up for everyone who suffers with this horrible illness. You are strong! You are a warrior! If you can make it through this you can make it through anything! Healing, remissions and recovery are possible! I'm striving for recovery! Please know that this is not medical advice. This is only my experience and may not help everyone.
I can do all things through Christ who strengthens me. ~ Philippians 4:13
Later I will be posting some information on some newer research and studies that I believe breaks down how this illness works and also medications that help and why they help.
*This blog was created to be an online community for women to find encouragement. Here you will find Bible Study on life, faith through health challenges, marriage, prayer and mental health. You will also find a splash of information on chronic illness, me/cfs, pots, fibromyalgia, EDS, supplements, functional and naturopathic medicine, as well as diet and healthy eating tips.
*If you would like to receive emails and be notified when a new blog entry is posted, please sign up below.
*Please feel free to leave comments or questions, so we can uplift and learn from one another. Leaving a comment will not sign you up for email notifications.
*Disclaimer: Any health information that is given on this blog is for informational purposes only and should not be used as medical advice. You should always consult with your Doctor or Mental Health Provider before making any changes to your diet, medications, supplements or exercise routine.