For starters my day is off tilt from most people's because I need a good 10-12 hours to be rested. My body craves sleep, the fatigue with Lyme will kick your booty. Ridiculous right? But from the moment I get up I have a lot to get accomplished. My two most important things are; 1. Getting in the calories I need to keep my weight up because I have an insanely fast metabolism. 2. Getting in 2 or 2.5 liters of water. It is SO crucial to stay hydrated. These in itself are harder then it seems because I have to almost constantly be consciously remembering to eat or drink all day.
So next, my day has a LOT of supplements, Physical Therapy, Vision Therapy, Detox baths, Medicines, Electrolytes etc that have to be meticulously planned. Some things have to be taken at certain times of the day, others have to be done with food or without food etc. Pretty much my whole day upon waking is going from one thing to the other.
Not to mention all the regular things in life we do. That includes errands, jobs, taking care of pets etc. That all has to be fit into my day no matter how much energy I do or don't have.
Lastly, you have to calculate in Doctor's appointments. I have a nurse that will come, get vitals, do blood work, give me an IV, etc. I also have days when I have to see a doctor and that takes up a big chunk of my time. On the flip side I spend a lot of time researching and reading up on things to better my health, so that lumps into this because I spend easily an hour a day on that alone.
I just thought it would be good to clarify that being sick is truly a full time job. It's easy to think that people who are sick lay around all day with NOTHING better to do. That can not be further from the truth. I am always taking something, doing something, or gaining energy to move. I obviously do have down time, but down time is a double edged sword. I have a very anxious mind, so I need to stay busy just to keep my mind busy & off the pain. If you don't stay busy at least on the surface you can't help but think about the pain and it can consume you.
When I do find time to do things I enjoy like spend time by the pool, or sit outside to read, it basically means I have to take 50 things with me to do in the process so I don't get off track. I need to remember to take out this supplement, that medicine, and a timer has to be set to go in at a certain time for whatever next is scheduled. So there isn't really a worry free period where I can just say "who cares for 3 hours what I do." Probably the only real down time I have is at night if I have insomnia... but at that point there isn't much fun in being awake at 2am!
I'm sure I left something out in all of that, and it may come off as a complaint, but it isn't intended to be. Right now I know my job is to fight with all I have, and that means taking impeccable care of my body. If I have to operate like a robot and do all these things then I will do it. I am 100% committed to getting well, and I am happy to do anything. Don't get me wrong, some days I get so tired of it, and I just want to throw in the towel because I feel overwhelmed..But who doesn't have those days? Overall, I'm not angry that I have to do these things, but it is important for people to understand it so I had to put it out there. Any kind of chronic illness takes a lot out of a person. It's not a walk in the park to have your life dictated by a disease.
So if you have a loved one who is battling a chronic illness, then give them a break. Don't make assumptions on their day until you have lived it yourself, and always ask if you can help. People have assumed that I should be doing more, reaching out more, remembering more things etc because I just "lay around all day." True, I do have the TV on all day and my phone with me all day, but untrue that I am sitting beside it every waking second. True, when people ask me what I'm doing I usually defer to saying "nothing" or making it seem like I'm just relaxing, but untrue that it means I am doing only that. It's easier to say I'm watching TV then try to explain I'm trying to choke down my daily vitamins but I'm having trouble because I'm too nauseous to do it. I suppose it's my fault when I omit info, but I also speak to my friends to ESCAPE the life I'm in at home, so I'm not in the mood to chat about supplements.
This was long.... but I hope it made sense. I have a board by my bed with the things I do daily. Mind you, there isnt enough room to fit them individually so a lot of spaces have a few things combined or left off.. It's truly madness. However, I do recommend these cute boards for any fellow Lyme warrior. It helps organize life a bit :)
(It's horrible quality, but you get the picture)