It started with getting sick with a horrible flu. Down for days and hating the havoc on your body. Canceling last minute because you can't get out of bed. Having your family eat cold cereal and dreading homework time. You take the forced break, which isn't really a break, nonetheless you catch up on shows, watch movies you haven't seen or love, maybe do a marathon. I believe I finished a book, started a new novel and caught up on much needed sleep.
Then it was being sick for longer than a month. Talk about annoying. You feel like you miss out on so much. Everything gets behind. The house is a mess, children are running wild and homework is barely kept up. Children are now eating quick fixin meals and scooping Nutella while mom is in bed. Chores are put on hold and kids dance around toy piles as if they are bonfires of joy from not having to pick them up for now. Your husband starts to feel the stress of taking on extra at home... That is if he is home and not traveling.
Then you stay sick for the holidays. That's right. December is a busy month... There is the attending plays, parties, school performances, award ceremonies, taking children to their holiday activities. Oh, let's not forget making and delivering holiday goodies to schools, friends and neighbors or having to shop for Christmas lists and birthdays. Then there is visiting the sick, helping those in need at this time of year, calling others to connect during this busy time of year so we can have a moment to cheer each other on. Don't forget decorating the home, wrapping presents, planning events and entertaining children on a dreaded two week break... ( ok, for me that is not a fair statement. I enjoy my kids home... Just not when I'm sick!) Imagine all this and tons more I forgot to mention and your are still sick. Even worse x10. You just can't do it. At all. What you do try to accomplish you barely succeed and mostly because someone else did it for you. You show up late to everything, come bundled up and wearing earmuffs to everything because the cold is too much for your ears. Can't see very well, everything is so bright and you hiss when your sunglasses have to come off. Holding a thought, participating in planning or having any contribution to conversations is horribly skewed by massive migraines and horrible foggy thinking. Your entire body aches and it's NOT the flu. You're not contagious and life must go on so you trudge through hoping no one will judge.
Then the holidays pass and there is peace. Kids are back in school, things slow down. But not when you are sick. You still have a kid on vacationed, holiday damaged, let's put away the decorations and plan a new year month to go through....and you are sick. So much pain that you beg the doctor for pain meds. You give in and take them because no one knows why you are still sick and in pain. The pain meds help. Emotionally they help a lot. Having the edge filed down makes impact not as painful... But the pierce is still there. You sleep.... For days, weeks, all of a sudden the month is gone. Time to get off the pills.
February, the lovers month. Imagine my husbands stress level by now. I still can't. I don't think I ever will. Lucky me gets to lay in bed and rest while others take over for me. The pain is so intense you start calling it manic pain. It seriously drives you mad. You yell at your kids, you yell at your husband, you yell at yourself. You yell at the dirty laundry and the dishes with dried food. You cry. You cry after every bout of yelling because it's not you and you can't stand it. You don't like what you are turning into. This is the month I got the first call... It's Lyme, let's send you to a specialist.... Seriously the very next day I got the comment, "oh, I know someone who has died from Lyme disease." Thanks, that helps...
The next month rolls around and you are given a slight break from the pain by a weird anomaly that is quite a miracle! Doctors office calls and tells you based on results it's not Lyme. Not enough antibodies showing up. Great, but not great. Thank goodness it's not Lyme. That would be horrible! Time for tertiary care, you know as in Mayo Clinic or UCLA. Still sick still frustrated not knowing what happened to me that shoved me to the ground and has kept me there just taunting me with pain... Every... Single... Day.
Now it's getting ridiculously absurd. I am quite useless in my mind to my family, friends and church calling. I seek other doctors for second opinions with everyone of them wishing they could figure it out and help me in someway. They see the desperation and despair. They hear my short story and all recommended Mayo. I call and the wait is THREE months away. I am about to lose it. I emotionally cannot deal with it another day and every doctor visit is weeks in between. Now I have to wait longer? I did lose complete emotional control for a few days. I was begging and pleading with the Lord to help me find a diagnosis. So when another doctor asked why I was not seeing the infectious disease doctor I was recommended to I laugh hysterically. You mean the one who's assistant told me the relayed info that I didn't have Lyme and my case wouldn't be seen? Yeah, that one.... I am now questioning him... He says you have Lyme. I panic. WHAT? I thought I was safe from that.... Well, then I decide to get the opinion of two Drs. But MORE waiting.
Months have gone by and finally a confirmation of Lyme. I'm over it now and just want the fix. Treatments properly done are way too expensive for an average family. My heart sinks. At least I can try to treat the disease here locally and be on the road to good health. I feel uplifted. Hopeful. Most of all relieved that this will all be coming to an end.
Treatments were rough the first two months, I'm not going to lie. But I had things covered. Meals, rides, donations... I had delegated everything. I focused on myself getting better. When the third month came around I lost a lot of support. Mostly my fault... I completely underestimated the second part of treatments.
This is where I find it all became more and more difficult to keep my hope up. Frustration set in because I wasn't getting better. What I had feared with the "band-aid" treatments was coming to life. I wasn't getting better. I was out of bed mostly, but still dealing with total body pain, insomnia, brain fog, heart problems, nerve issues and just the most debilitating fatigue you can imagine. I start to get angry again. Short tempered and pleading for relief.
I still cannot adjust to this new me. I feel sometimes it won't ever get any better than this. If I go anywhere, do anything, besides rest... I am down for days. Total pain and bitter from the consequences of trying to be normal.
I accept this is my trial. I accept me. I will not accept this disease. I can't give in to believe that this is as good as it is going to get. Our marriage is fighting it. Our kids are fighting it. Our families are fighting it. Our deerest friends are fighting it. Even people we don't even know are fighting it. Yet here I am wanting to quit. It sucks. It sucks so bad, (and I hate that word.) I am always putting on a smile, a show, a facade of normalcy and it sucks. Inside I am falling apart. I can't bare it anymore. I ask God to take it from me... To give me some hope. To give me a break from the pain. From the crashing for days afterwards. From the feeling of incompetence and inadequacy. I want to step outside my body for just a minute to remember what it feels like to be normal again. To not have the desire to quit everything. (Nothing suicidial.... My TWO "happy" pills take that from me at least.)
I spend many hours in anger from the pain. It is maddening. No relief. None. Someday's are better than others, yes, this is true. But not what I thought it would be. The part that gets me the most is knowing what this bacteria is doing to me... And what it is causing my body to do. It is an autoimmune disease. The Lyme bacteria doesn't want to harm its host... No, I'm keeping it alive. However my immune system cannot reach to where the bacteria spirals itself into. Nerves, muscle, bones, cells.... My body knows it's there and attacks it... But it's hiding. So in the proces my body attacks itself over and over with out end. This is where my symptoms come from and where my frustration lies. My already damaged immune system will slowly destroy my body until it gets every last one.
Having this knowledge is good and bad. I try to overcome it thinking it's all in my head. This holiday weekend has proved one thing to me. It's not all in my head. (Well, technically it's all over my body, but you know what I mean.) I had a boost of hope and perseverance and I took it head on! I gave my self rest days, made it easy for me, and didn't do a whole lot. It didn't matter. I still did something. Yesterday was my eye opener. A very frustrating eye opener. I need to get this figured out. I'm not who I was before.
I need to raise the money. I need to try a better chance for me and my family. I have to.
In the mean time, I need to keep holding on. Taking it one day at a time. Letting myself cry and not holding it all in so much. Being strong all the time is actually making me weak. I need to get rid of the anger towards this disease. I need to move forward and live life to its fullest. I know this is a bit "corny" but our locally spawned band that hit fame big has a few songs that keep me going. One is my ring tone on my phone. One helps me release my demons and move past the pain. Being a person of faith, believing in Jesus Christ, I know I'm not alone in this. He has felt everything I have experienced and more.
In the end it is comforting to know that I someday will be free from all this... Especially when a cure is yet to be found. So many claim it and it's just not possible. I have lots of other avenues to try from the so called, "I'm cured from Lyme disease". But not one of them yet have been without a product behind them begging to be purchased. Fundraising brings those people out. It's a fact of fundraising life!
I have another day ahead of me now and not a wink of sleep. I'm sure later I will crash again... Just not on my family's time schedule. So is life.... For now.
Until then, here is to overcoming the demons my disease has created in my life and to being who I was meant to be. Drowning myself in service helps.... Just not with the house if you happen to stop by, (just keep that in mind!)
Love you all... Many times over!
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