My normal

People have asked what my normal day is like. Or they ask me how i am doing? etc

With Lyme disease nothing is normal, and nothing is predictable. The only thing that is predictable is that I will have some degree of pain every day.

At my worst:
I slept poorly, waking often in pain, or not being able to fall asleep because of pain. When I did sleep it was not restful, but rather a lot of tossing and turning. I wake up long before I am ready, sick to my stomach and nauseous. I take antiemetic medication while still in bed, and try to muster up the strength just to get out of bed and make it to the bathroom. Sometimes the urge to go speeds the process up, other times it can take up to an hour to gain the strength and motivation to get up. On these days, i do not get dressed as I just don't have the energy. Once up I spend some time in the bathroom. My stomach is so messed up from treatment that it is necessary to spend some time here first thing when waking up. After I am done in the bathroom I try to eat. Some days I am unable to do so, and can maybe only get a little meal replacement shakes down. Within 10-30 minutes of eating or drinking I have to return to the bathroom and that pattern will continue the rest of the day. I will not be able to take my morning medication until many hours after I have woken up due to nausea. My pain levels, on a bad day, will fluctuate from 7-unbearable. I will take pain medication to the point that I have a hard time doing anything but functioning. It sucks, but the alternative is much worse. I will probably not have the appetite for lunch, and I won't snack. I will force liquids down throughout the day. This helps filter out toxins and keeps me hydrated. I will spend the entire day on the couch, or in a warm bath, as that is all I will have the energy to do. I will force some food down in the evening, as my nausea normally is not as bad in the evening as it is at the start of the day, so I will eat as much as I possibly can. I will get back into bed about 8 to 10 hours after waking up. I will watch tv in bed, take more pain medication, sleeping pills and try to get to sleep as soon as possible. On a bad night I will not fall asleep for 8 hours after getting into bed (and no this isn't me just sitting in bed watching tv the whole time. I will often turn the tv off and lay in bed, unable to sleep for 4-6 hours.) Then this starts over again the next day.

On an average day average:
I slept alright the night before. I wake and have a mild stomach ache and mild nausea. I visit the bathroom first thing in the morning. I then go for a 30-yard walk to get my muscles going. I return to the house and try to find something that sounds good to eat. I won't have much of an appetite and eating will be a chore. I will get full very quick and often times will start to sweat while I am eating. I will then take some time to rest on the couch. Then I might run (run means drive my car to the store, but jog to go get groceries) to the store, or pharmacy or get on the 4 wheeler and take the dogs on a run. Going to the store is really a challenge for me, and if that is what I do (which I try to only do once every 10 days) then it will zap most of my energy, and i will have not much mental and physical strength left for the rest of the day. I will eat a light lunch, and a normal dinner. I will have pain that ranges from 5-7 hovering more around a 7. My energy will be low and I will tire very easily. I will get into bed 10-12 hours after I get up, and fall asleep within 5 hours.

At my absolute best:
I will have got a good 10 hours of sleep and have no nausea when I wake up. I won't have much of an appetite but will be able to eat an average breakfast. I will try to get some things done that I need to do. None of it will be exerting, and none of it will last too long. This could include mowing the lawn (on a ride on lawnmower), changing the oil in my car, cleaning my room, giving my dog a bath, or things of similar exertion. I might be able to do some fun things like go shooting, or fishing. Lunch and dinner will be average. I will still get into bed no later than 12-13 hours after I woke up, but I should be able to fall asleep within 2-3 hours. My pain will range from 4-6 throughout the day, and I get headaches every day no matter what.

My average days comprise 70% of my life, my bad days will be about 10+% and my best days will be less than 10% of the time. I never know if tomorrow will be a bad day or a good day, so that makes planning hard, so I just don't plan on doing anything I can't do on an average day, and if I am having a bad day then I change my plans to fit accordingly.

When I am actively treating the Lyme, my good days go down to about 1% of the time and my bad days increase to more like 20% of the time. This is due to the stress on my body from the treatment. So I have SOME control over how frequent my bad days will be, but it is a double edge sword. If I am not treating the Lyme then the bacteria are multiplying, but I have more good days and vice versa.

How do you hold down a regular job when you don't know what tomorrow brings? How do you date, have a family, plan trips or jobs, etc? Answer...you cant.

My Fork

So here is a quick update for those who care (analytics show 4 people read the blog so that is about 4 more than should care).

I have stopped all oral antibiotics. They destroyed my stomach, killed my appetite, and i was losing weight. I was a pregnant female with morning sickness, but mine was worse, because even after the nausea leaves i NEVER craved ANYTHING! Also there was no end, it wasnt like in 9 months it would all stop.

 Lyme pain + headaches + no appetite + stress + low blood sugar + nausea + no food in all the world sounding appitizing + (no antibiotics = no killing of the bacteria) + lessening hope + depression = scary things looking like better options.

Here are the options (or next steps) the way i see them:

1. 1. Intramuscular antibiotic treatment (which i am currently doing with many of the above problems, but the addition of a super sore ass 4 days a week)
2. 2. IV antibiotics to the point i either kill the lyme or kill myself.
3. 3. Yield to the theory that after 3 weeks of antibiotics you are healed and whatever pain you have is damage from the lyme, and then make a choice:
1. Become a hard-core pain killer addict so that i can enjoy life and try to function as a "normal" human.
2. Become an insane stunt double, like the stunts where death is probably.
3. Become a reality TV star doing ish that could kill you (partly in hopes it does) while still entertaining society
4. Move to a country where euthanasia is legal and get signed up.
5. Euthanasia myself (cheaper than option 4)
6. Figure a way to be a martyr for the cause

If i cant make progress on antibiotics, and/or this is what i am stuck with, then to hell with this awful life. I WILL end it. People arent supposed to live in pain like this.

I had somebody ask me, "What keeps you going, and at what point are you just done?"

I had to think about it for a while. I never had a set number of years that i would allow before i just gave up. But i came up with it, and it answers both questions. My best friend is all that keeps me going. (And  my faith in God obviously) If it werent for her my life would be so incredibly hard, and hopeless. So when she, Moki, my dog passes then i better be done with treatment, otherwise we are going out together. She has about 12 years of life left, and that is way more than enough. If i am not in remission by then, then it is time to stop being a drag on society.

Pray for a cure. We need a cure! What we have doesnt work in all people, and it doesnt work well enough!

Lyme Awareness Month 2015