COPING WITH NEUROLOGICAL LYME
Chronic neurological Lyme is a debilitating and overwhelming disease to cope with because it affects every part of your life. I believe that it is essential to educate yourself about what you are dealing with and come up with strategies to manage the disease to the best of your ability. Everyone has different ways of coping with their circumstances. I came up with a list of suggestions that have helped me to cope with my own daily struggles.
Build a Support Network
If you have or suspect you have Lyme disease, first of all, I want to tell you that you are NOT crazy and it is NOT in your head. Do not let anyone tell you otherwise. If your doctor doesn't believe you, refuses to consider the possibilities, or tells you your condition is not real, look at finding a different practitioner. Ask around and find someone who is compassionate and is willing to really listen to what you are saying. Never give up finding the treatment strategy that works for you. There are several options available for conventional, alternative, and combined therapies.
Secondly, know that you are not alone. Although you may not find tangible access to support groups and resources for people with chronic Lyme, there is support out there. You could start by contacting a local Lyme organization to get more information or seek out online groups for support. With online resources and social media, we have easier access to finding people who share our experiences with chronic disease. It has been very important for me to build a support network of people who accept me and share similar struggles so that we can support each other through the hard times and rejoice together with our triumphs. Having someone to lean on and walk this journey with you makes a huge difference. Additionally, do not be afraid to ask for help. If you attend or belong to a church, it is a great place to receive support and assistance when you need it. Something as simple as a phone call, prayer support, or a meal can lift the burden on your heart when you realize that someone cares about you. I am very thankful and blessed for the support of the body of Christ who has come alongside me and my family through the years.
Plan Ahead
When you are struggling with chronic conditions such as Lyme, you may be overwhelmed by the pain, weakness, and neurological problems that have disrupted your daily life. Medications, supplements, and other therapies can take up a lot of your time and be overwhelming as well. Your stress level escalates when you are just trying to make it through the day.
Having a consistent daily routine and planning ahead will reduce the stress in your daily life and keep you occupied so that you aren't overly focused on your situation. Start out by making small goals for each day. If you are having difficulty keeping up with housework and daily tasks, talk it over with your family to come up with a plan. Those who are married and have children can ask their spouse to help come up with a chore plan or list for everyone to contribute to keeping up on basic household duties. I find making "to do" lists and designating certain days for specific tasks helps me to stay on top of my housework. I will sometimes make lists for my kids so that they know what is expected of them and they can help out with chores.
If you are taking a lot of medications, supplements, or doing several therapies you can make out a schedule and use pill boxes to keep everything straight. Planning ahead is also excellent way ease the stress when traveling, celebrating holidays, and going on outings. In these situations, you can put together a list of what you will need to cope with your situation while away from home, figure out what medications or treatments you will need to take with you, and prepare foods in advance for your specialized diet. Planning ahead will make things run smoother when you are at home and out in public.
Write it Down
Keeping a journal is a great way to express your feelings and cope with your daily struggles. When you chronicle your journey and what lessons you have learned from your suffering, you will look back and realize how far you have come. I find that by using a journal and writing things down, I feel a release in my spirit and it helps me to get through the day. I also make it a daily habit to focus on the positive aspects of my life by listing what I am thankful for. No matter what obstacles we face, there is always something we can be thankful for. An attitude of gratitude is not always easy but it helps us to refocus our minds on momentary joys.
Dietary and Environmental Changes
Changing your diet and the environment around you can help improve the inflammation in your body and reduce some of the symptoms/triggers you are experiencing. You can research recommended dietary strategies on your own or consult with a nutritionist or practitioner that specializes in Lyme. You may notice that when you change your diet by eliminating certain foods, you will have temporary side effects as your body adjusts to the changes. Strategies for improving your home environment can include reducing the amount of chemicals you use, eliminating fragrances, reducing EMF (electromagnetic frequency) exposure, changing your household lighting, and removing any potential mold or other possible health hazards. When you are struggling with conditions such as Lyme and have EMF sensitivity, it is recommended that you remove wireless internet or WiFi from the home and replace it with a computer modem. If you have no other option, you can shut off the WiFi when you are not using it. I would especially recommend doing this at night when you are sleeping. Some people unplug their microwave or get rid of it in order to reduce exposure to radiation and EMF's. We have tried a few recommended strategies to reduce the EMF's in our house. After discovering our cordless phones were carrying strong frequencies throughout our house, we eliminated them all together. We replaced our fluorescent lights with traditional bulbs because fluorescent lights are brighter and emit stronger frequencies. I dim the lights on days when my sensitivity is more prevalent. Table lamps can be useful in minimizing the brightness in the home environment.
Create a Place of Refuge
It is crucial to have a place of refuge to go to when you are struggling with neurological Lyme and related conditions. This should be a peaceful place to get away from the noise and chaos so that you can take time to rest and recover. The place of refuge should be a quiet, safe, and comfortable environment that has appropriate lighting for light sensitivity.
I have two places of refuge at home. One is my bedroom. I have it set up a serene environment for relaxation and recovery. We have removed all electronic devices such as TV's and computers for a more peaceful atmosphere. I keep our radio/CD player, lamp, and alarm clock away from my side of the bed to reduce frequencies where I rest. I also use specific devices in my bedroom for EMF sensitivity. My second refuge is outside in the garden. In the summertime, I try to spend at least an hour a day grounding outdoors. I do this by removing my shoes when gardening and sitting/laying in my yard. There is something about the earth's magnetic field that has a healing power on the body and also reduces the harmful effects of EMF's. I have found natural grounding to be much more effective than any devices. When you are spending time outside, you have an increased risk of exposure to ticks and disease; however, I am willing to take that risk because of the enjoyment I experience as well as the health benefits of being outside.
Live in the Moment
Chronic and neurological Lyme is a challenging disease to manage. It is way too overwhelming to think about the future and worry over all the "what if's." In order to cope with your daily struggles, you must take everything a day and sometimes a moment at a time. I am very grateful to be on the other side of the most debilitating aspects of battling my condition; however, when I come down with a virus or am doing a specific treatment/detox, some of the old symptoms will come back. Although I may become upset about temporary setbacks, I take a deep breath and remind myself that I've been through this before and will make it through again. Then, I rest in the knowledge that God is with me and will take care of me through this difficult moment. I focus on God's mercies that are new each day and tell myself tomorrow will be different. If not, God will be by my side to get through the next day as well.
Trust God in the Hard Stuff
"I waited patiently for the Lord to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the Lord." Psalm 40:1-3
When you are facing a seemingly impossible situation where your world crumbles and your body breaks down, you may come to a point where you are at the end of yourself. You then have the option of falling into the pit of despair or clinging to the one constant in your life, the Rock of Salvation and Hope. As everything else fades away, God and your faith may be all that is left. Remember that His love is real, His promises are real, and He will never fail you or forsake you. You might be angry with God and think to yourself how could a loving God let this happen? Tell Him how you feel. Tell Him you are angry, hurt, and in despair. Tell Him you don't understand why you are suffering. He already knows how you feel, and He still loves you. He has been down the road of suffering, pain, and loneliness. He did it for you. He knows more than anyone what it is like to suffer the unthinkable and to be alone. He wants you to dive into His loving arms, cry out to Him, and tell Him you can't do it on your own. God may seem to be doing things backwards, but he is in the business to lift up the broken and weak so that He can shine in their lives despite their tribulation. Take a deep breath and jump into the beautifully terrifying sea of faith. The loving arms of a God bigger than all of this will catch you and lift you up. He is waiting to show you that He loves you no matter what your circumstances are.
The path of physical and emotional healing involves spiritual renewal and forgiveness. Our mental attitude has a tremendous impact on our physical wellbeing and overall healing. When we are hurting deeply, it may seem impossible to change our attitude, but with faith and the help of our loving Creator, we can do it. God can take these ugly circumstances and build something new and painfully beautiful out of it. You will take a tremendous step in this process by choosing to forgive. Forgive those who hurt you and those who didn't understand. Forgive the medical professional that misdiagnosed you and was insensitive to your pain. Forgive yourself. Most of all, forgive God for seemingly letting you down and allowing this to happen. When I decided to choose forgiveness over anger and hurt, it was difficult for me but I gritted my teeth and took a step of faith. I reached for the miraculous gift, the freedom of forgiveness only found in the grace of God. I believe that forgiveness in itself has tremendous healing power. Learn to forgive, to let go, and trust God in the hard stuff.
FINDING HOPE
Although my condition has improved through the years, I had to come to terms with the fact that I may never fully recover this side of heaven. God only knows what my future holds. I have found that He has used my circumstances to speak to others, and I will do whatever I can to make the best of all that God has given me. It is my desire to do His work through my joy and through my suffering. At the same time, I will never give up hope for full healing and recovery. If it is God's will, I will just praise Him all the more for restoring my life and healing my body.
Whether you have neurological Lyme, a mysterious condition, or an untreatable illness--no matter how bleak things look or what your circumstances are, don't give up hope. Hope is what makes each day worth waking up to and each breath worth living for. Rest in God's love for you. Trust in His promises and His hope. He may not give guarantees for what we want but His promises are true, and they are worth clinging to and living for.
"We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us." Romans 5:3-5
This the 2nd part of an article on Neurological Lyme for my "Voices of Lyme" series. For more information about Neurological Lyme and its impact, check out my 1st article here: http://dzehm.blogspot.com/2015/03/the-voices-of-lyme-voice-of-suffering.html?spref=fb
RESOURCES
The information in this article is not intended to be expert advice or offer diagnoses/treatment for Lyme disease. It is based on my personal experience and the experiences of others I know.
For more information about chronic Lyme, my testimony, and the testimony of others, you can read these blog articles:
About Chronic Lyme: http://dzehm.blogspot.com/2012/12/chronic-lyme-disease.html
My Story: http://dzehm.blogspot.com/2012/11/enduring-winter-my-battle-with-lyme.html
Nancy's Story: http://dzehm.blogspot.com/2014/10/the-voices-of-lyme-voice-of-hope-nancys.html
Logan's Story: http://dzehm.blogspot.com/2014/12/the-voices-of-lyme-voice-of-youth.html
Sally's Story: http://dzehm.blogspot.com/2015/02/the-voices-of-lyme-voice-of-battle.html
Judy's Story: http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html
Maggie's Story: http://www.burlingtoncountytimes.com/life-style/reality/living-with-lyme-disease/article_f7b435cd-8471-51e5-8bf2-27a3da1943ad.html
Celebrity, Yolanda Foster: http://lymedisease.org/news/touchedbylyme/lyme-fog-wall.html
For more information about help and support for chronic Lyme, visit ILADS website:
ILAds.org
For more information about Lyme disease and treatment information:
http://articles.mercola.com/sites/articles/archive/2013/09/04/lyme-disease.aspx
This article shares treatment strategies for Lyme as well as information regarding EMF's and the healing process:
http://articles.mercola.com/sites/articles/archive/2012/02/05/dr-dietrich-klinghardt-on-lyme-disease.aspx
This article describes how impairment of methylation, a detoxification pathway, contributes to the recovery of Lyme and other chronic conditions that are difficult to treat:
http://suzycohen.com/articles/methylation-problems/
The movie, Under our Skin, profiles chronic and neurological Lyme. This documentary has helped to raise awareness about this disease. Here is the link to watch it online:
http://underourskin.com/film/
No comments:
Post a Comment