Taking oral antibiotics is all I have experienced thus far, and when I first started I was okay with that. IV antibiotics are killer.
Our home consist of 5 kids, a police officer husband who works straight nights and 4-5 side jobs on any given week, did I mention 5 kids? All which are involved in at least 2 things. Grades ranging from 9th down to 4th. Me, the homemaker, peacemaker, chef, chauffeur, school bus, personal shopper, nurse, mediator, etc......Not a lot of time left in between to get better. No real downtime. Me laid up means sacrificing time with my family with my friends. Most importantly, with my children. I had gotten to where I would push push push through everything and then rest when no one was looking or around. I've always been a very planned-out meticulous gal, and I was loosing control of that too.
Flagyl. A 2week antibiotic that will leave a lymie a hot mess. (As if we needed any help with that.)
ABS-SOOO_LOOT-ly no alcohol. Severe reaction that will land you in an ER. Not even any in your food or mouthwash.
"What? You can't go two weeks holding onto the wagon?" you ask.
Yes, yes I can, but this was Thanksgiving. This was family, and me cooking, Macy's parade in the background, some wine with the parents. Good times. Those that know me, know I really like to cook and entertain, and this year I couldn't do anything except lay for 2 weeks.
Flagyl is a cyst-buster. I told you last time about the 3 forms. (If you missed it, go back and read the post before this one for better understanding.) Cyst form doesn't hang around long and so when and if you happen to catch that cycle it has to be treated full hands on.
Within hours of taking I started herxing. My legs locked up on me. I needed help just to make it a few simple yards to the restroom. I had to lay in a hot tub of water to get muscle relief and needed help getting in and out. I could not lift myself up. The crying, or better yet, the wailing. I had already been placed on arthritis medication weeks before this started for the joint pain. (Yes, I'm still on. I have arthritis now. One of the many results from having this disease.) This part is hard for me to talk about. Really hard. I'm a prideful person, and I hide a lot of what happens here at the house when I'm having a bad day. See, you will probably never see it. I still wear my smile, push through to do what must be done for my family, keep a clean home, a nice yard. I am at my children's functions and sporting events. You will even look at me and pass judgement saying to yourself, "She looks just fine. I don't understand how she can be so sick." Or other words similar to that. You will talk about me behind my back. Then there are those who will just never understand or even take the time to. None of that matters. That is your battle. This is mine.
Here comes the ugly. (pausing to regain composure so I can continue typing)
I got so bad that my husband had to go remove the potty from his fathers boat and make me a place beside the bed just in case I couldn't make it 4 yards to the bathroom. Pride officially stripped from me.
My drinking glasses did and sometimes still do had to have a straw on them and be in plastic. The weight of a simple glass was just to much to lift.
How was I going to celebrate my favorite holiday? Cooking was out of the picture. I can tell you exactly how I celebrated it. Hiding tears. I fully expected my parents and brother's family to at least come here. Bring it here. What did I get? I got an invite, that if I felt up to it I was welcomed to come there. "There" isn't that far away. It is only about a 15 min drive from my house. So, why did I have to go there??? Why didn't they want me around? Why didn't they care? Have I disappointed my parents again? Were they ashamed of me? What didn't they get about the fact that I was sick and could not do for myself or for anyone? Did they think I was faking this whole thing? I couldn't go take a piss without help for crying out loud! I was so hurt. So shunned.
Well, I'm good at putting on my mommy mask. Mom's know what I'm talking about. My husband went to our local BBQ joint and got us a smoked turkey, my girls learned to cook a few side dishes while I sat in a chair and gave instruction. I reclined on my couch and we all ate in the living room picnic style. It ended up be such an intimate Thanksgiving for the 7 of us. My husband and kids rallied around me. We watched the UT vs A&M football game. (We are a family divided.) We made memories and they gave me joy. I still went to bed that night feeling sorry for myself. I laid there and cried as the holiday came to a close. I waited and waited for maybe at least a phone call or a text wishing me a Happy Thanksgiving or a "We're going to come bring pie over and visit." from my parents. I got nothing. I was hurt deeply. I didn't understand what I did to deserve it. I was the elephant in the room no one wanted to talk about. As long as I was out of sight no one had to deal with it. They were in denial and it was trickling down onto me. I didn't need the added stress or depression on top of everything else. I found myself back on the forums again. Reading posts from others who spent their Thanksgiving very similar to mine.
I tried to understand. I tried to wrap my mind around it all. I needed my family. They will be my life raft for years to come. I don't remember exactly how or why, but my parents eventually started talking more about my disease with me. Dad asks very little because he gets choked up. Mom has thrown herself into understanding it all the best she can. As hurt as I was by their actions, they were not to blame. Ignorance was to blame. It took me a bit to finally get it, but we come from a family of -if you don't talk about it, it will go away. (hence the elephant) It was their way of doing just that and with me hiding what was really happening what else should I have expected? The more I talked about it, the more I made them understand, the more they read, the more they heard, the more they realized it wasn't going to just go away. I was just as wrong for not giving them the ugly truth of it all. I was sugar coating because of my pride. There is still so much that no one has seen except my husband. Times where I can't even speak and all he can do is hold my hand while I seizure. Times where we speak with our eyes or a nod.
I now have such a supportive family. Supportive friends. My aunt even is constantly sharing whatever she hears or sees. I have a rarity as a person infected with Lyme. It's such a scary and and unknown disease so it is easier for everyone to not indulge in becoming more knowledgeable on the topic and as un-thankful as I was last Thanksgiving, I've never been more thankful for how far we all have come.
Lights will guide you home.
And ignite your bones
I will try
To fix you
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