*Originally published 6/28/13*
I've been off school for a couple weeks now and I've felt good. The day after school ended, I immediately felt better. There was no stress and all I did was sleep and lounge by my pool. So far I have been to 2 concerts and have done pretty well after them. I actually hung out with friends, too!
My friend Jenna, who also has Lyme, came over and we hung out for a whole day! We ate gluten-free pizza and relaxed all day. It was nice, because if one if us was feeling funny we would tell the other one and compare notes and take breaks. We are going to be getting together with some other Lymies in the area soon.
Within the last couple of weeks my Teens With Lyme Facebook group has grown tremendously. There is now almost 50 teens in it. Some of the stories people have are terrible. Some people don't have anyone to believe in them while some don't have the right treatment available to them.
No one should be punished because a stupid little bug bit them. People should not be denied the right treatment just because someone tells them they are faking. Unless you live through Lyme, you can't tell us how we feel. If we are jumping up and down one minute then laying in bed crying another-- that's not seeking attention or faking-- that's the disease at work.
One thing I am having difficulty with is being gluten-free. I am having trouble finding things to eat and I find myself starving all the time. I also have problems pacing myself. I push myself too hard too often. I went to a concert Saturday, had a sleepover Sunday, spent the day in DC on Monday and went to another concert Tuesday. Needless to say, I've been feeling kinda bad the last two days. So it's good that I went to the doctor yesterday.
My doctor thinks I'm getting better, so I'm staying on the antibiotics. He also thinks I might have sleep apnea and I am having a sleep study done. I am in pain all the time and I have extremely bad posture because of it. I asked him what to do about it, I thought maybe physical therapy. He said I should swim. That would be easy since I have a pool and its not too hard to swim. The problem is, it takes a LOT of energy, and creates a LOT of pain. Everyone always says you have to exercise; being active is supposed to help me us sleep at night. How do they think a chronically ill person will be able to exercise? I haven't really been able to do physical activity in over a year. It's really frustrating, and I wish every day that I could exercise, but it is just too difficult for my body at this point.
I love my doctor and my family and friends for trying to understand. But only those suffering truly understand what Lyme does. It's good that people don't always understand, because it means they don't have Lyme and hopefully never will. I wouldn't wish this on anyone. You're not really living if you are living with Lyme. You are basically a zombie going through human motions.
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