OP- I feel for you so deeply. I have an autoimmune disorder that presents as chronic pain, fatigue and arrhythmia/low blood pressure. I have found some relief from medication, but still have approximately 15 days out of every month where I feel terrible. I have two kids under 6.

All of the above tips are really great- particularly the one about creating a room for your kids to safely play while you rest.

I also highly recommend talking to your children about your illness. I say "My body needs to rest right now." or "I am not feeling well today, so I need your help with _____". I used to feel guilty about that but now I see that both my kids are extremely empathetic, and they are willing to take on additional tasks when needed. They also have learned to play really well independently, which is such an important life skill!

Another thing that has allowed me to let go of some of the guilt- I am really intentional about quality one-on-one time with each of my kids. We do lots of movie nights cuddled up in my bed and craft projects and drives to see the monuments downtown. I make sure that we have happy memories sprinkled in each week, so that when I do miss the basketball practice or I park them in front of a movie so I can lay down, I don't beat myself up over it. I know that when they remember their childhood, they will know they had a fun mama who loved them hard.

Hugs to you. Chronic illness is so draining. Do what you need to do to keep on going- even if that means learning on the help of others!!

Anonymous wrote:I am a SAHM mom to a one and two year old. My husband works very long hours. We recently moved and our new house needs some work, which we are trying to manage with covid and the supply chain issues. This week I was diagnosed with Lupus.

I am just so so tired and sad. I feel like I am failing my kids. I have no energy to do fun or educational activities or even get them out of the house. Our house is still a mess of boxes, workers are here all the time. I want to be able to do Christmas stuff but everything is just so hard.

I'm just so discouraged. Those of you who struggle with chronic illnesses, how do you do this? It's so hard to accept that I can't go at my previous pace.

You aren't failing your kids. But it is a really big thing to accept.

My mother has lupus - she was diagnosed shortly after having her second child. Kids are 2 years apart. My father worked long hours as a physician. I know it was very, very hard for her to accept that she couldn't do everything. As a mother of two kids now myself, I am in awe of how she did as much as she did. My dad was never around on weekdays, ever. And he worked some weekends too. She did everything - and back in the 80s when our weekends were filled with errands like grocery shopping, shoe shopping, clothes shopping, because there was no such thing as Amazon. It helped that she had us in daycare, and that when we were school age we attended the same school she worked at, so our holidays were synced, and she paid her teenage students to babysit us (because after care didn't exist back then). But it was normal to my sister and me. We never wondered why she couldn't walk faster, we didn't resent helping open cans or jars when her hands were hurting, or helping do the grocery shopping when she was hurting too much to push the cart around. It bothered her but it didn't bother us.

So. Don't worry about fun or educational activities every day. You do what you are able to do. Consider, if the finances can afford it, putting them in half day preschool - at least the two year old, and the younger one too when she turns two. Yes, even though you are a SAHM - unless you are morally opposed to it or something. If that is the case, hire a mother's helper. Definitely don't waste your energy on scrubbing bathrooms or other things that exhaust you without reward. Spend 2/3 of your "good" time with your kids, and another 1/3 on yourself, and let people help you (or pay people to help you) with cleaning, cooking, laundry, etc. Your husband's long hours don't preclude him from helping either. Have him do what he can.

I will tell you, it was harder for my father to accept my mother's limitations than it was for my mother herself. She was living it. He was at work all day (and half the night sometimes) and when he was home he wanted to go hiking, visit museums, go to restaurants, go to movies. And we did those things, but never at the pace he wanted to, and from about the time I was 12 my mom grew increasingly limited, and my dad grew increasingly frustrated. He is not a patient person and he never understood that no matter how indomitable her spirit, her body could only do so much. I hope your husband is more understanding. Be honest with him from the start about what your limitations are -- and the fact that they may fluctuate -- and ask him for help when you need it.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Are you local, OP? I would totally come help you out for a day.

Seriously, are you in DC area? Maybe we can suggest places to take the kids that are easy/services to outsource stuff/etc.

OP- no I'm not unfortunately I am an Alexandria native but we moved to the West Coast a few years ago. I am fortunate to have a community here though and I need to get over my discomfort with asking my friends for help.

One tip I have is to really prioritize what is hardest so when you ask for help you know it will make an impact. Because it IS hard to ask. For my friend with chronic illness, her “thing” is cleaning her bathrooms. It wipes her out so much that she takes the rest of the day to recover. So she hired a cleaner to come do the bathrooms every other week. For me, it’s dishes at the end of the day, so I leave them for my husband. It sounds like for you right now outings are really hard, so maybe ask a friend to meet you at a park and help you manage the kids. But the main advice is that it’s okay to hesitate to ask, but knowing what will help makes it easier.

I feel for you. I have Crohn's and had a very bad 6 year flare. I was sometimes hospitalized for two weeks. I tried my absolute hardest to be the best Mom but to do that ended up getting addicted to pain meds so I could work, live and play with my child. I feel sometimes like I gypped my daughter because she talks about remembering me coming home in agony and getting my pills, water and hot pad. We often played quiet games bedside or we snuggled and watched TV. When I felt great, we did everything possible to make-up for the sick days. Now, I have 2 kids and it do a lot more and have more at stake. I take it day by day, listen to my body, manage stress, and know my limits. I wish you the best!