As many of you know I was diagnosed a couple of years ago with Lyme Disease. I've actually been struggling (and living) with it for over 6 years now, but for the first 4 1/2 or so it went undiagnosed (you can read more about that journey here , here and here).
The last couple of years since my diagnosis have been tumultuous, difficult, and full of ups and downs. There has also been a lot of beauty and goodness, but as far as my health goes it has been HARD. In reality, they have been a couple of the hardest years of my life thus far. Living with nearly constant pain, as well as a myriad of other symptoms that inhibit my daily life, is exhausting both physically and emotionally.
For those of you who will say "but you look so healthy and happy!" that is the result of the fact that Lyme Disease has no outwardly noticeable symptoms, combined with my tendency to put on a happy face in times of struggle (a habit I am learning to let go of). And I AM happy a lot of the time. All of the photos you see of our adventures, beautiful places, and smiling faces, are still honest and true. Life is never just one or the other, and moments of deep frustration, pain and sadness, can be followed in quick succession by moments of pure joy. Being a human is so complicated!
Over the spring and summer I had been feeling a lot better, and was on an antibiotic cocktail that seemed to be getting the disease under control. There were a number of months there where I was starting to feel like myself again (although never 100%). Then this fall my doctor decided to start me on some new drugs because I had sort of plateaued in my progress, neither getting better or worse. Starting new antibiotics or medications almost always comes with some steps backwards, and this time was no different. This is part of why treating Lyme disease is so hard: if the treatment is too aggressive it can make symptoms and inflammation worse, requiring a break from the treatment, in order to go back to the same treatment that may just make it worse again. It is a constant seesaw of ups and downs, and a balancing act that can be extremely frustrating.
So this is where I am now. Feeling a lot worse again, my feet and ankles so swollen and achy that you can't see my ankle bones, and my toes like red, shiny little sausages (a gross but apt analogy). Some days I wake up and it feels a little better (usually aided by a TON of ibuprofen) and some days, like today, I can barely hobble to the kitchen from our bed and I want to cry for the pure frustration and pain and humiliation of that.
The hardest thing about this (besides the actual, physical pain) is the toll it takes emotionally and spiritually. Plans I had made are no longer possible because I literally CAN'T do them. Goals set, of being active, attending yoga classes and staying healthy, have to be set aside or amended. Planning for the future is hard because I have no idea how I will be feeling tomorrow, never mind a week or a month from now. It is discouraging and frustrating, to say the least. Logically I know that it will get better, and that this is just another step in the process of healing. In my heart and mind though, it's hard to believe that sometimes, and I often feel very hopeless and self-pitying about it all.
That being said, I can still see the positive growth that has come from this experience: All of the things I have learned, and am learning, about myself and others.
About how to be an honest, vulnerable, authentic person in the world.
About not masking pain and fear with anger and pride.
About how to ask for help, and how to communicate what I need, and not to apologize for that.
About accepting that help gracefully, in whatever form it may come.
And about forgiveness, compassion, and kindness towards myself and others.