Tuesday, May 4, 2021

living with lyme disease

It is sad and scary to lose my health in the prime years of my life. I have always suffered from autoimmune issues, but in 2020 I experienced health problems so bad I lost considerable quality of life. Lyme disease is insidious. Lyme disease has taken from me, at times...my joy, my strength, my vitality, my will to live...it has wiped the smile from my face and, in the pain of suffering, made me mourn the life I am able to give my children. 

I love my children deeply. But it is apparent to me the difference: the difference of the mother I was "before" lyme and the mother I am able to be "after" lyme. Before lyme we would go on adventures, outdoors, I had energy to do so many things that I just cannot do now. Now sometimes I cannot even read books because the words swim before my eyes, and I sleep all day. That is only on a really bad day. But I still feel so much guilt over it, guilt for what I cannot will my body to do for me as I once did without thought or awareness. 

I wonder what it will be like for my kids to grow up with a chronically ill mother whose health reads like a sliding scale on a downward trend. Will they resent it? Will they remember the times I sat on the floor and did puzzles and drug myself outside to watch them play, or will they remember the times I begged them to leave me alone so I could sleep? Do they see the pain I work through every day or understand the sacrifice it is when I get out of bed? Do they feel loved? Am I keeping up with appearances, or am I letting the lyme win?

Some days are better than others. I have even had a whole week once that was almost normal! But since February of 2021, when my Lyme disease returned after seven months of remission, almost every day has been a fight. I have an headache every morning, starting when I wake up and the only escape from it is sleep. Sometimes it is really bad, what I would call a migraine. Sometimes it is just a dull ache that I have to push through. I also have joint pain, vertigo, sometimes nausea, sleep problems, neurological lyme symptoms...and I just don't feel well. I feel sick every day. 

As someone who has been working on my health for almost nine years now--to be significantly worse than when I started is depressing. I have lost a lot of friends--but I do not blame them. It would be hard to be friends with someone who usually can't hang out, who complains all the time, who is perpetually exhausted and who can't connect much because all my strength that doesn't go to fighting my Lyme disease goes towards trying to make life as normal as possible for my children.  

I try not to be bitter about it. I have two arms and two legs, I have a house and two wonderful children and a husband who has a good job. I am still alive and it still matters to see my children grow and witness their beautiful lives. Even as I suffer I am still grateful for all God has given me. I still know life matters and I strive to find joy, and healing. Yet at the same time I am tired of feeling sick, tired of fighting and tired of using all my strength to do simple tasks. Tired of having nothing left at the end of the day and nothing for myself.

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