Lyme Disease and Chronic Illness change people. You don't want it to, and try to stay the same person you were before everything surfaced, but you aren't the same person. Its just how it ends up.
Before crashing and getting sick 9 years ago, I was an outgoing and active person. I loved people and staying busy, I didn't like staying home and wanted to the go, go, go lifestyle. I typically over did it and did too much, like a lot of this society. But that's how I liked it, it was fun. Once I got sick it slowly changed, I tried to keep up with that lifestyle, but it was so hard and it was making my health decline and negatively progress faster, which made it hard to function going at that speed.
Now 9 years later, I feel like a completely different person, for the most part. I have learned to slow down and not to commit to so many activities. I am home a heck of a lot more than I ever was before. And I get worn out doing the smallest things. When I had 2 years of remission I was able to have a more active lifestyle with out so many consequences, but since relapsing I have had to step back again. I am still able to do a lot more than other times in my journey- I am currently working 50 hours a week, getting my kids to and from school and sporting events, etc. Just doing that all basically sucks any energy I have out of me. Which means not much left to do anything fun, or even keep the house clean. Its embarrassing, but there isn't much I can do about it.
An example was last night- This week has been really hard, its even my off week, AKA drug break, but its been extra hard for some reason. Last night (3rd night in a row), I had to get my daughter to softball. I can not for the life of me get that poor girl there on time. Between getting off work, making dinner, feeding the kids and driving there, its a lost cause. I need to try and prep better but that takes energy, and I don't have it. Anyways, we got to the field (late of course) my daughter ran over to be with her team and my other daughter and I went to find a place to sit to watch. It was a really hot day and we had to sit in the direct sun. It didn't take long for me to feel really sick, light headed, sweat like crazy, and I was worried I would pass out. I was feeling really faint. Just sitting there in the sun and heat was too much. I wasn't doing anything or using any energy, just sitting there with my daughter. It's just kind of ridiculous to me that I can't even sit and watch a softball game with out ill effect. Of course the heat was playing a huge role in it, but it is still really frustrating. I was praying I was going to stay upright and I wouldn't pass out, freaking my kids out and causing a scene. Another example is as I write this blog post, I keep taking breaks because my eyes keep going blurry and doing strange things so I can't really see what I am typing. Something that has been happening a lot in the past couple weeks. Yesterday I couldn't get my right eye to focus all day.
Just a lot of little things (although I am told often, they aren't little things) that have added up to big things over the years. I feel like crap, I look like crap, am basically a walking zombie that just wants to sleep all day long.
Which brings me to my next point. Going out and being active when you are invited to things causes mixed emotions. I really, really want to be invited to things. I don't want people to stop inviting me because I am struggling, I do really want to be involved still. But, sometimes I have to cancel or back out at the last minute because I am feeling terrible. I don't want to and hate having to, but sometimes I just can't push myself hard enough, especially after long work hours. Or sometimes its a battle with in my own head. I hate who I have become. I was recently invited to a graduation party for a family I haven't seen in 8 years. I really want to go and see them, its been too long and I think of them often. But I am also battling the thought of going because I am not the same person they remember. I don't feel well a lot, I don't look healthy and people see that and even tell me that sometimes, and its really embarrassing to see people when I have changed so much. I am not me anymore in a lot of ways and I don't like presenting that to people that haven't seen those changes. It can be awkward.
I don't want the disease to win, it shouldn't completely take who I am and who I want to be. I typically push through even when its a really hard day and I feel terrible, because I don't want it to completely change me. It is a battle for sure, but we can't let the disease beat us. Always wear your invisible crown friends. Some days we need it more than others.
