Thursday, January 12, 2012

Things I Miss

In being sick for such a long time there are some things I discovered. I miss things. Not physical things but life things. Here are the things I'm missing after 3 years of dealing with Lyme and co-infections.
  1. Making my own decisions. Oh sure I make hundreds of small decisions a day but in reality I've had much taken away. I had no choice but to give up my nursing career of almost 20 years. I miss the adrenaline rush and I miss helping people. Decisions should be mine.
  2. I've had no real choice in my treatment plan. Even now, my LLMD tells me what she thinks is best, I may get a choice on which path but reality is if I don't do this, this disease might kill me.
  3. What I feel I can and can't do on any given day. Somedays I feel well enough to venture to a store. Other days, putting on socks exhausts me. I don't get to decide that. My body does. I'm merely there to cooperate with it or suffer the consequences of poor self care.
  4. Keeping a facade. Lyme patients have to have a facade. In a sense it keeps me sane because for a few moments I get to be normal and like everyone else. People look at me and say, "You don't look sick." Sometimes I am grateful for that. If I sit and think about the magnitude of this disease and what it's done to my family, life and relationships I can get very depressed. But my kids and husband need me and if I spend every waking moment crying I'm not much use to them. They do see me cry and struggle and see me at my most raw moments. But there is still life to live. My facade is holding up just fine thank you.
  5. I miss thinking. Lyme fog is awful. Cognition is non existent at times. I live my life by sticky notes and wonder some days if my thoughts will make it from my brain, down my arms and onto the keyboard or paper. If it does-will it make sense? What did I forget today? I'm still volunteering at church and in the homeschool community (by computer mostly) because it keeps my brain active and people still value my opinions (I hope). It makes me feel like I'm still contributing in some way and that my brain still has a few active cells left.
  6. Playing. I miss playing ball and running (any physical activity really) with my kids and being able to go see their activities.
  7. Traveling. Anywhere.
  8. Being spontaneous. Not that I was every really spontaneous. Those that know me know I am the well planned out girl. But sometimes it would be nice to just get in the car and go without having to worry about when the next dose of medication is due or to take the kids out for icecream instead of knowing that the trip will be too much for me. With being spontaneous comes planning ahead. I can't do that either because I never know how I will feel.
  9. I miss my hobbies. Gardening especially. Digging in the dirt is very cathartic and meditative for me. Growing the food is providing something for my family.
  10. I miss being trusted. Trusted to know that I was/am ill, trusted by my doctors, trusted by family and friends to know that I am making the right decisions for me at this very moment.
At this moment, it's all I can do.


Anonymous said...

Hi Bev, have you ever connected with DeeDee at Fiddledeedee (her blog's name, I'm sorry, you'll have to Google it- I can't access the address from this device). She has Lyme and experienced many of the symptoms you are living with ( at least according to what she has written). She's a 40++ year old homeschooling mother of three and may give you some glimpse of light at the end of the tunnel. Good luck with everything-
Shelayne in Nova Scotia

Fiddledeedee said...

Bev, I'm the Fiddledeedee in question. :) Shelayne is one of my sweet readers, and she knows that I've been in treatment for Lyme for the last year. Our journey sounds very similar. Please know that you're not alone. Feel free to contact me so that we can share knowledge, commiserate, or simply know that we're not alone. God bless you.