This is my Lyme disease

I am awakened at 6 am as my husband hands me my first meds in bed to start my day.

This is my Lyme disease.

I take the 3 pills and drink the glass of antimicrobial herbal drops that he has sweetly prepared for me. If I'm aware enough, I feel gratitude for this amazing medicine. These meds work to kill the lyme and co-infections and dissolve bio films, without destroying my gut in the process. Half an hour passes and I mindfully set positive intentions for the day. This helps override the sick fluish feeling in my body and mind. It helps give me the nerve to pull myself out from under the covers and face another day. If I don't do it, sometimes I want to barf with the fear and dread of facing this all once again. Then I take more meds, do some gentle energy exercises, clean up the bedroom, and head downstairs to the kitchen.  Carrying as many empty glasses as I can from the day before.  They tend to build up on the night table!

I drink warm water with freshly squeezed lemon juice to alkalize my body. I take iodine drops in water to support my thyroid. I make and drink either a glass of freshly juiced green juice and/or a green smoothie. I take fish oil. I take about a dozen other supplements to support my body... My dear body, fighting so hard against these illnesses. I prepare and eat a nutrient dense breakfast too because I feel light headed without a little bit of solid food in my stomach. This whole process takes about 3 hours. I hate it when I have a rough night and sleep in a bit because it throws off the whole thing.

This is my Lyme disease.

I tidy the house, maybe pay a few bills on the computer, answer some emails, make phone calls. My head is clearest in the morning so it's the best time to do anything where I need to actually think. Or not mess up my bank account. ;) Or stand up feeling relatively stable. I sit to meditate on my meditation cushion in front of the gas fireplace. I can't sit too long so eventually lie on the floor to finish. I can't regulate my body temperature very well so the warmth of the fire during the cooler months is essential. Upon finishing, I stretch in a few easy yoga poses.  Then I go for a walk, if I'm well enough and the weather isn't minus 30. I walk slowly, but at a better pace than I have managed in the past. I walk anywhere from a few minutes to 30 minutes on an awesome day. Bad days, the pain in my body becomes too great. I get a massive headache and my entire self hurts like it's full of arthritis and I'm 99 years old. Plus I get a feeling of nausea to go with it as a bonus.

This is my Lyme disease.

I return home and prepare another antimicrobial cocktail for ingestion 30 minutes before lunch. I carefully count the drops of each herbal addition. It terrifies me to mess up and put in too many as an error of even one or two drops could make me extremely ill. Yet I despise messing up my counting, becoming unsure if I've overdone it and having to toss the whole glass down the sink. A dosage lost. This stuff isn't cheap and we're not exactly made of money right now.  I'm very tired at this point but ensure I prepare and eat a nutrient dense lunch plus a few more supplements along with it. I need to fuel this exhausted body with good stuff so it has a chance of keeping going. 

I go to bed as early as noon, sometimes managing to stay up until 1pm. My head is spinning and I welcome the opportunity to lie down with relief. But sometimes I resent it too. This is it for the day. I need to sleep now, but I won't feel as good as I managed in the morning again until tomorrow.

This is my Lyme disease.

I drag myself out of bed between 2:30 and 3:30 pm. I sleep and wake at these times every single day but that fact doesn't help my body want to get up. I feel cranky and hungover. This is normal. I get up to take more pills and hydrate with water. I greet my children as they come home from school. I'm happy to see them but am in a bad mood.  Must force myself to be cheery with them. It's fake and I don't always do a good job of it. I hate that.

Depending on the day and if I feel up to it, I may look in the fridge and begin supper prep. My kids know they must leave the room, get off the first floor of the house. I have intentions in my head as to what I'm doing but it's a big effort to make my hands do what my head wants. And my head is full of fuzz so I have to fight each thought through that too. I can't talk to someone at the same time. I can't parent. I'm exhausted and working too hard without anyone around. 

At 4 pm, I make more meds to drink and take more pills. Dinner is usually around 5 or 5:30. A big basket of supplements gets carted to the dinner table so I can swallow more pills throughout the meal. I'm so tired afterwards that I go to bed to rest. The kids and hubby clean up. Hubby takes kids to any activities and deals with other stuff that comes up. Despite how bored I am, I usually can't do much in the evenings as I feel too gross. I can't think well enough to do anything that requires brain power. I can't play games with the kids or read to them or hang out with them because noise is too much, patience is too much, parenting is too much.

This is my lyme disease.

My kids used to ask us for playdates but I can barely cope with parenting them. They don't ask much anymore. They used to ask to help me in the kitchen, but I can barely handle myself in the kitchen. They don't ask anymore. They used to ask me to play games with them, now they ask if I need them to leave the room. They don't ask to go anywhere or do anything because they know the answer will be no.

This is life growing up in a family where your mom has Lyme disease.

I try to do something to detox in the evenings even though all I want to do is curl up in bed in a foul mood. But I don't want to curl up in bed either. I am so beyond bored with curling up in bed. I make it, usually by hanging out in bed, until 9 pm and take more meds in water. More pills. Sometimes stuff that disrupts my sleep and gives me nightmares. After all this time trying to heal, I still hesitate to take it, staring at the capsule before I swallow it... like that might make it gentler on my body. By this time of night, my face is pitch red, burning hot and blotchy with the exhaustion of the day, fighting these bugs, herxing. I feel disgusting but mostly ignore it. Helps my sanity to pretend everything is sort of normal. 

I spend the nights sleeping a fair bit. What a blessing. It wasn't like that for a long time. I'm up several times to stagger to the bathroom. Holding the walls and bed frame for support as I go. I wake parched with a dry mouth and lips, and drink the water always beside my bed. I wake with sweats and chills. Itching like crazy sometimes too, although not as much anymore. So grateful for sleep. So grateful to not be in terror with brutal symptoms at night like I used to be.

I pray. I'm grateful. To be so much better than I was, to be healing ever so slowly. To have people in my life who love me and treat me as me, not the disease. To have been able to have my kids before I got sick. For me to be so far along in this journey that I am able to pretend to forget I'm on it for moments here and there.  Not sure if it's because of how much better I am or how much practice I have at pretending.  Probably both.

This is my lyme disease.

I'm living a dream compared to how sick I was 3 years ago. When my body hurt so badly I couldn't hug my kids, and I would lie in bed 20 hours a day. Mostly in agony. Scared, exhausted, fighting the biggest, darkest fight of my life. Freakish symptoms appearing randomly, constantly. Never really knowing what to do but try to hang on another hour, another day. There are so many out there suffering worse lyme symptoms than I have had, and yet others battling different diseases and life situations beyond the suffering I can imagine. Wow, it's a lot.  I never knew it could be so much.  I'm deeply sorry that it can be.

I know without a doubt how precious life is. And I will know that and be grateful for it every day for the rest of my life. I  am out of my mind tired from this fight, but so pleased to be alive.

This is my lyme disease.