Currently as I write this on October 15, 2016, I feel very angry and frustrated once again because my Lyme has reared it’s ugly head again. Throughout the summer I have been feeling well. This is surprising since I have not been as restrictive on my diet and went off the path a bit. But once the weather started to change, my body started to suffer once again. I was caught off guard because I actually was beginning to think that Lyme was part of my past. Three days ago I woke up with a headache that nothing could get rid of. I felt as if someone was twisting all of the muscles in my shoulders, upper back, and neck into knots. I have to remind myself once again that this may be an illness that I will have to live with forever. Chronic diseases are isolating, frustrating, and affect all facets of a person’s life. I have immediately started to go back to my Lyme Diet and hope that this will help. However, most people who have Lyme will tell you that the colder, damp, weather is very difficult for those who suffer from Chronic Lyme Disease. I have recently been re-tested through IGeneX and meet with my New York Doctor this coming Monday. I will have to see what my blood tests reveal. I do know that my Epstein Barr is quite active in my body currently and that is something that there is little treatment for.
I often feel sad because I can’t be as active with my two young boys as I would like to be and I don’t want them growing up remembering their mommy as being sick. It feels sad when you are lying in bed and hear your children downstairs laughing and playing with their dad, and you can’t join in the fun. Or when my husband takes them places alone because I am not able to go. My husband is a lifesaver as together we try to minimize my illness as much as possible for the boys and he takes over all the physical activity of their lives that I am not able to do. I try the best I can to put on a happy face for them and muster up as much energy as I can. When I am having a good day I take them out and do fun things because I never know when I will be able to do that for them again. I often wonder what it would be like to be a healthy mommy I know this to be true for so many people who suffer from Chronic Lyme Disease, and how difficult it is when you have young children.
I can still work, which I am extremely grateful for. I love what I do for a living and I can’t imagine what I would do if I could no longer practice psychology. I am grateful that I received the treatment when I did before it affected my mental abilities. Some Lyme suffers are not as lucky. I am told that now that I am receiving the proper treatment I will not have to worry about the disease progressing. If I do what I need to do to take care of myself, I should not decline. I have a hard time finding balance with work, as I always want to do new things. I continually try to focus on my self-care, which is essential with having Lyme Disease. I am trying to look at the optimistic side of things and envision the rest of my life with me finally having energy and vitality that I have been lacking for the past four plus years. I will not give up that vision because I believe that it has to be possible.
One of the biggest things that has kept me going besides my children, husband, friends, family, and work is my spirituality. I truly believe that this journey happened to me for a reason. I always try to look at the deeper meaning behind my illness and use meditation, prayer, and self-help spiritual books on a regular basis to assist in my recovery. The reason I am writing all this now is to help other people, and I believe that I may have contracted this illness to help other people. That feels very promising and optimistic to me, which is much needed in a world that is often filled with pain and fatigue.
In a very strange way, this disease has also made me feel grateful. I feel grateful that I have the money to see specialists and can afford to buy the medications, supplements, and organic healthy foods that are part of my recovery. And I feel grateful that I can still function mentally, I can walk, this has not affected my heart, I have not suffered neurological damage, I can get out of bed, I can still laugh, and that I am alive. Many people with Lyme Disease have had all of these things taken from them.
Many people are not aware of the psychological impact of Chronic Lyme Disease. It has been researched extensively and many people with Lyme Disease suffer from Major Depressive Disorder and various Anxiety Disorders. I have now made this a specialty in my practice in order to help others who have Chronic Lyme Disease. It is so important to receive psychological counseling when you suffer from Lyme. Lyme is a lonely disease. People often do not have empathy for something that they can’t see and something that is still not fully understood. People get tired of your sickness. They often do not understand how you can have good days and accomplish so much, but then find yourself having several days of being bed ridden. Most people cannot understand how one day you can do almost anything and the next day you are down for the count. And because many people who suffer with the extreme pain and fatigue of Lyme Disease continue to push forward, people often don’t understand how much it takes to get through any given day with this infection. Overtime, many who suffer with Lyme learn to live with pain, keep their mouths shut and thus, it becomes a very lonely existence. Pain and fatigue become the new normal.
There is also a great deal of anger and frustration associated with this illness. Anger and frustration over the fact that so much damage can be caused by a tick bite. Anger and Frustration that it can take years to finally be diagnosed and receive proper treatment, and then having to accept the realization that you may never fully recover. People are often made to believe that all of their symptoms are in their head, when they are actually very real. It is also infuriating that the CDC does not truly support Chronic Lyme Disease and that there is little research being done to help those who suffer. It is also an ongoing concern over the cost of treatment to care for yourself once you are diagnosed and there is little funding to aid in buying supplements that can make a world of difference in your recovery.
Psychological treatment can help with all of this so the Lyme patient can finally feel validated. Counseling can be a place to talk about your feelings, feel validated, and learn coping skills to help assist you through the many bad days of Lyme. Also it can be helpful for Lyme patients to participate in support groups and seek the services of a psychiatrist who can prescribe psychotropic medication to alleviate the severe symptoms of depression and anxiety.
So in summary, I urge all of you to be the CEO of your own health care. Do not accept the opinion of one doctor. Listen to your intuition. And if you would like additional support in dealing with the psychological issues of Lyme Disease, please contact Dr. Cynthia Edwards-Hawver and Associates, LLC at 570-575-3765 to schedule an appointment. I also encourage you to visit my website at www.drcynthiahawver.com.
I wish you all the best in your treatment and please do not give up hope.
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