All analogies seem to fall short, but let me make this more relatable...Most everyone has had a really bad flu at one time or another, so let me show you as a scale from 1-10.This might be too much information for some, but if you're taking care of someone with a chronic illness, it might give you some insight as to how you can help the person. Some of these stages might overlap and some days are better than others.
10- When you feel so bad, you can't get out of bed- I was only this bad when I had the muscle spasm episode that sent me to the ER.
9- When you feel bad, you can't drag yourself out of bed, except to eat or go to the bathroom or to grab something easy to eat.
8- When you feel bad and lack the motivation to get out of bed because you'll feel worse if you get up.
7- When you feel better, have some motivation to do something, but once you're up for 5 minutes, you have to go lay down because you can't' stand up anymore. This stage was particularly difficult for this type A personality.
6- You're able to get up and do things such as make your own food, take a shower, do some laundry or go to the grocery store, but you can't do more two of those in one day and most of your day is in bed.
5- You still have periods of feeling icky during the day, but in between, you feel well enough to get some things done, but don't have energy to get anything done.
4-At this stage, you have more energy. For example, to get through making dinner without having to sit down halfway through because you have that icky feeling like you're catching the flu. You still have to sit down and take breaks in between chores, but you're able to get 4 or 5 things done in a day.
I think I'm at stage 4. As I said, I feel I've turned the corner as most days I'm feeling well enough to get through the day with some energy. In the last two weeks, I've only had 1 day in each of those weeks where I haven't had very much energy.
It's so nice to be able to add things to my routine and to be able to not have to rely on my husband and daughter for everything. It's nice to be able to have more predictable days and to know that most likely I will feel well enough to be able to go to church on Sunday.
Last Saturday, my husband and I went to Costco. You know how big those warehouse stores are! I was able to walk the whole store with only a short rest 2/3rds of the way through. When we left the store, I was tired, but not the kind of tired where I felt like I was coming down with the flu.
That: is PROGRESS!
Many of you with lyme disease seem to be stuck on symptoms. Many of you seem to want to know what's causing the symptom. Unless it's something you're doing or eating, I don't think it matters. Just try to do something that relieves the symptom.
Some things that help me get through the day at this stage of my recovery:
Migun infrared mat
I wake up and need 30 minutes to get over feeling groggy, so I lay down on my Migun mat, which takes away all of the icky, neuro feelings wherever I might be having them. The infrared mat also helps relieve muscle pain. Link to Migun
Eating- sometimes food in the stomach is what I need to help me feel better.
Infrared Sauna- I'll have to do a whole post on this, but I feel better after being in the sauna. Here's the sauna I use.
Meriva-SR Curcumin- helps with my muscle pain
Rest
Prayer
Helping others- I can't do much in the way of physically helping others, but I belong to several lyme groups on Facebook and there are many new people each week who are looking for help in navigating the complexities of dealing with lyme disease. I'm sharing what I know and what has helped me.
My family -I'm so grateful for them.
Friends- both online and off. I can't say enough about getting in a group on Facebook for those with your particular health problem. They understand what you're going through and help you not only with information, but help you to know that when things are really bad and you're having really weird symptoms, that you're not going crazy. One caution here: when you feel overwhelmed by all the suffering, it's time to not read the posts. That will stress you out and you can't get well if you're stressed and in a negative place.
Here are my symptoms as of today:
fatigue - changes daily, but today it's about a 4
Numbness, tingling in feet are less than last month
swollen pads on bottom of feet near toes- have gotten better
dizziness- only when tired
difficulty finding words (1- 3-4 when really tired)
blurry eyes ( comes and goes)- this symptom drives me crazy
urgency (2)
light sensitivity (negligible)
noise sensitivity (1)
startles easily (2)
muscle pain - less than last month
aching forearms-haven't noticed any
muscle weakness (5)
high pitch ringing in the ears/low pitch ringing - high pitch comes and goes, but less than last month
98.6