Question for Sick Mommies

I have a very good friend with RA and lupus. Her youngest is 9.
He knows when she's really sick and he knows how to help around the house. He can do laundry (if she sorts it), dust, vacuum, etc.
She has days that she can't even get out of bed. She depends a LOT on her husband and her son.
I think it's ok for your kids to know you're having a bad/off day.
It will teach them helpfulness, compassion, caring.
I think you might need to reevaluate pain med options if you're in debilitating pain.
Good luck!

So sorry you are going through this. With autoimmune diseases on the rapid increase, more and more women are facing this. I work with a lot of people with lupus, fibromyalgia, rheumatoid arthritis, MS and more. I have several colleagues who used to have anemia as well. That's more of a daily constant, where the others are subject to flare-ups so you never know what's coming - which makes planning anything so impossible.

You are trying to deal with pain management, which is the first thing to do. But what are you doing for anti-inflamation? You mention vitamin supplements, but what is the absorption level and what is the "delivery method" for getting it into the cells? With the scientific breakthroughs in epigenetics and the discovery of an all-natural peptide that is key in controlling gene expression (so that damaged genes are able to switch on and off properly), plus the boosting of immune system functioning, there is so much you can do. You're going going to be "cured" of the condition, but if you are free of flare-ups and pain, that's 99% of the battle.

I have a friend with lupus who is able to teach all day, one who was anemic but has 5 kids and teaches preschool (never gets sick even with all those coughs and runny noses), several with RA and MS and other chronic pain conditions who are all managing pain-free. There's probably more you can do and I would be happy to direct you to some more resources - it would help if I knew what you are already doing. Feel free to message me.

Your family/Husband needs to help you.
And if not, you may need to hire a Nanny or something.
You can't do this/manage this, by yourself.
And you need to tell your kids, Mommy needs help.
They need, to know.
When you are not feeling well.
Tell them "The Doctor says Mommy needs to rest...." or something.

This is not the same: but when I was pregnant with my 2nd child... and my Asthma acted up my whole pregnancy with that pregnancy. My Asthma was flaring up a lot, and I had a hard time doing anything... I told my daughter who was only 3 at the time, that "Mommy needs help.... my Asthma is bothering me, I cannot run around.... " etc.
And she understood.
I didn't 'burden' her with it, BUT she knew.... Mommy's energy level was not, at the norm. And that, I could not, run around etc. And she was very.... adjusted to it. I told her "The Doctor said I need to rest sometimes.... " and she understood. I told her I need to take care of my body too. And she understood.
She understood.
And I also told her, what my inhaler was for, and where to get it, if I needed it etc. She understood.
I didn't tell her "I'm in pain..." I just explained to her, that Mommy has a health concern, it is called Asthma, sometimes I have a hard time breathing, but I have medicine, and I need to rest etc." And she understood.

You need to explain to your children.
You need your Husband to help you somehow.
And if you have family in your town, they can pitch in.
Or, you need to hire some Nanny or something, to help you.

When I am sick, there have been times when I've been in bed all day. Did the kids notice? Um, yes. I was there for an emergency but not much of a mom!

That sounds tough. If it's chronic. I think you tell them what's happening. Why should they not be able to know about your pain? That would seem cruel. Tell them.

I am in a similar boat with three chronic illnesses including one that is progressive. I simply can't function on narcotics so some level of pain is pretty much my constant companion. I get some relief from prescription meds and acupuncture (which also helps my nausea).
My younger daughter (7) knows that I have good days and bad days. When I am having a bad day but am not sick enough for the ER (moderate pain and nausea but no vomiting), we do more indoor activities like playing board games, basic crafts, or watching movies. I actually keep a box of inexpensive things from 5Below or the dollar store just for times like these.
They really just want to spend time with you and care less about what you are doing than the fact that you are doing it together.
I know that it is tempting to try to catch up with chores and errands when you feel well, but this is counterproductive. To preserve my energy and minimize the risk of overdoing it, I try to arrange chores and errands differently than before:
We moved into a smaller space so there is less housework to do.
I approach meal time differently. If I feel well, I may make a pot of soup or something similar that we can have for several days. But often, I use the meal starters from the produce sections to make a quick stirfry that will serve as dinner for my daughter and leftovers for her school lunch.
I can't carry heavy grocery bags so I make smaller trips (1-2 meals worth) a few times a week or ask someone to go with me.
I wash some clothing less often (jeans, sweaters), do smaller loads to avoid strain, and again, I will ask a visiting friend to put a load of wet clothing in the dryer. It used to feel rude or embarrassing to me to do this, but I find it this more helpful than the casseroles people were bringing by sporadically.