In some ways, it seems so long ago when I first began getting sick and having intense pain from Lyme disease. It’s hard to remember details of those difficult days, pain and fatigue can do that to you.
One thing I clearly remember is the love and care my family showed me when my health was declining.
It wasn’t just my husband and children but also my parents and other extended family members. I realize how chronic illness can negatively affect relationships and especially a marriage so believe me I know how blessed I am.
When my symptoms were at their worst my whole life was impacted. I couldn’t keep up with my daily routine and most of the time I didn’t even realize it.I was in severe pain all the time and was completely wiped out with fatigue.
I was sure I had early onset dementia, I missed doctor appointments, didn’t know what to buy at the grocery store and couldn’t remember anything, including conversations that took place 5 minutes ago. I didn’t recognize where I was when driving on roads I had traveled for over 10 years. It was a very scary thing.My husband recognized that my health was declining and went into action mode.
He helped me figure out what I needed to do each day, encouraged me to make specific doctor appointments, helped in the evening with the kids, dinner, and cleaning and he prayed with me and for me.
Now please don’t get me wrong, not everything got done. Dinner would often be prepared processed meals or take out. The house didn’t get a good deep scrubbing and only the really important things got done.
I know this was a really hard time for my husband, after all, watching your spouse’s health deteriorate while not knowing why can be just as difficult as being the one who is sick.
I really didn’t think much about it until the other day when I read an article about someone’s experience with how they had been treated badly by family and friends when they shared the news of their illness.
While I didn’t realize it at the time, my husband showed great love and care for me and has continued to do so through my illness even as he was later diagnosed with Lyme and coinfections.
He believed me when I explained my pain and fatigue. He rallied our children together, made a chore chart and encouraged the children to help Mommy as much as possible.
My children were young but they helped as much as they could. They would get things for me, helped care for their new little brother, rubbed my neck, made me soup, and prayed for me.
When I finally got a diagnosis of Lyme Disease we didn’t know what that meant at the time but we were relieved that there was a reason for my declining health and felt that now we could address it and I would get better.
I remember telling extended family and friends who were also very supportive.
My extended family was empathetic and encouraging. They listened, they hugged me, they told me they’d be praying for me and that they were sorry I had to go through this. They asked me what this meant, what the treatment was and what my symptoms were.
They continue to be supportive and loving even still. I can’t visit as often as they’d like and sometimes I wouldn’t be able to make a special lunch we had planned but they’ve always been patient and supportive.
Close friends responded the same and have always been supportive and caring even though they didn’t really know what I was going through.
There have been those along the way who say that Lyme disease really isn’t that bad because after all so and so’s child had it and went on antibiotics and they’ve been just fine.
There are also those that continue to tell us that we focus too much on Lyme disease and it’s really not a big deal. They tell us that they’ve been bitten numerous times through the years and have never had problems.
Sometimes I hear that a spouse or parent is the naysayer or gets angry because their loved one “acts” sick all the time. Most of us have already experienced this with a physician or two and I’m sure many of us have heard, “well at least it’s not cancer!”.
There will always be “those” people in our lives who are not compassionate or supportive. There will always be those who don’t believe that our illness is real.
I’m hopeful that the more information we get out about Lyme & tick-borne diseases, about what it’s really like to live with it; how it affects a person, their job, their relationships, their life, that just maybe people will be more understanding and caring to their loved ones and maybe our doctors will believe us.
Sometimes loving others comes in the form of being there, asking questions, listening and helping out even when you don’t understand. We should all learn to love one another and appreciate those who love us.