I had a really bad day this week.
Clammy, cold skin, twitches and tremors, faintness, vertigo, pain, and so on. The next day I was very emotional, tears dripping through my makeup on my breaks at work. I kept calling my partner for help, but she didn't know what to do. She told me to come home, but I wasn't going to leave work.
I still don't know if either of those miserable days were due to Lyme disease or other things. They certainly were major exaggerations of feeling badly.
So what was I to do? I was at work, feeling sick as anything, feeling desperate and humming with pain and misery. On Tuesday, my legs were wobbly and throbbing and I could hardly walk. On Wednesday, I felt that there was no point to life and I could hardly stop crying.
But I did it. Not everyone is well enough to (some people with Lyme are bedridden, for example), but a lot of us are well enough to do at least a little bit of living every day. I am so proud of myself for pushing through the pain.
I was talking to my good Lymie friend K. the other day--in fact, my only Lymie friend in all my life--and I realized something. She is on disability, she is an intelligent twenty-eight year-old with no college degree and no work experience, and almost every day, she goes to the infusion clinic for her IV drip and goes to specialists for her many health problems, which are largely a result of the Lyme disease.
I felt for her so much. I'm not saying she has a miserable life at all; she has a loving husband, supportive and generous parents who are also sick with Lyme, she is lovely and sweet as anyone I've ever met and she has many talents and lots of potential.
But that's the part that worried me, the fact that she is so talented and smart. Because once you're on disability, I think you basically stagnate. There is no one to impress, nothing to prove except that you're actually very sick. No hope for a raise or work that you'll find engaging and consuming. Nothing really to consume you at all.
This is exactly why I am glad I'm not on disability. Without it, life is difficult. I have to struggle through my illness to get through the days. I have to fight off and prepare for the worst of the symptoms, the unbelievable pain and fatigue.
But my life is full, too. It's full of people, activities, ideas, and maybe most importantly of all, hope. A future. So I put up with the terrible symptoms, miss engagements once in a very rare while because they are too much to handle, and most of all, feel carried away on a current of pride every time I push through and show up, succeed, prevail.
I think K. knows that her life could be so much more. I have so much faith in her. She's quite ill, sometimes as sick as me and sometimes worse, but she is a brilliant starburst of kinetic energy, wit as sharp as the edge of a knife, a hapless smile, hope flickering like fireflies in a jar.
So K., if you're reading this, please know that I love you and I am sure of you. I want you to be a happy person. I want you to succeed, to know that the Lyme hasn't gotten you in the end. I want you to push through your symptoms whenever it's possible to do so, to get that education you desire, to become what you want to be, to be with whomever you want to be, to feel the world uncoil at your fingertips. I'll be there for you every step of the way.
Clammy, cold skin, twitches and tremors, faintness, vertigo, pain, and so on. The next day I was very emotional, tears dripping through my makeup on my breaks at work. I kept calling my partner for help, but she didn't know what to do. She told me to come home, but I wasn't going to leave work.
I still don't know if either of those miserable days were due to Lyme disease or other things. They certainly were major exaggerations of feeling badly.
So what was I to do? I was at work, feeling sick as anything, feeling desperate and humming with pain and misery. On Tuesday, my legs were wobbly and throbbing and I could hardly walk. On Wednesday, I felt that there was no point to life and I could hardly stop crying.
But I did it. Not everyone is well enough to (some people with Lyme are bedridden, for example), but a lot of us are well enough to do at least a little bit of living every day. I am so proud of myself for pushing through the pain.
I was talking to my good Lymie friend K. the other day--in fact, my only Lymie friend in all my life--and I realized something. She is on disability, she is an intelligent twenty-eight year-old with no college degree and no work experience, and almost every day, she goes to the infusion clinic for her IV drip and goes to specialists for her many health problems, which are largely a result of the Lyme disease.
I felt for her so much. I'm not saying she has a miserable life at all; she has a loving husband, supportive and generous parents who are also sick with Lyme, she is lovely and sweet as anyone I've ever met and she has many talents and lots of potential.
But that's the part that worried me, the fact that she is so talented and smart. Because once you're on disability, I think you basically stagnate. There is no one to impress, nothing to prove except that you're actually very sick. No hope for a raise or work that you'll find engaging and consuming. Nothing really to consume you at all.
This is exactly why I am glad I'm not on disability. Without it, life is difficult. I have to struggle through my illness to get through the days. I have to fight off and prepare for the worst of the symptoms, the unbelievable pain and fatigue.
But my life is full, too. It's full of people, activities, ideas, and maybe most importantly of all, hope. A future. So I put up with the terrible symptoms, miss engagements once in a very rare while because they are too much to handle, and most of all, feel carried away on a current of pride every time I push through and show up, succeed, prevail.
I think K. knows that her life could be so much more. I have so much faith in her. She's quite ill, sometimes as sick as me and sometimes worse, but she is a brilliant starburst of kinetic energy, wit as sharp as the edge of a knife, a hapless smile, hope flickering like fireflies in a jar.
So K., if you're reading this, please know that I love you and I am sure of you. I want you to be a happy person. I want you to succeed, to know that the Lyme hasn't gotten you in the end. I want you to push through your symptoms whenever it's possible to do so, to get that education you desire, to become what you want to be, to be with whomever you want to be, to feel the world uncoil at your fingertips. I'll be there for you every step of the way.
