UPDATE Chronic Illness

[namasteak]

UPDATE
Well no wonder I wasn't feeling better. I have ankylosing spondylitis not RA! Apparently I'm in the 10% of people who don't have the b27 gene so my old rheumatologist never caught it since he never ordered an MRI...just dismissed the low back/hip pain as age/motherhood 🙄

New doctor started me on a muscle relaxer, prescription NSAID and a monthly shot. Plus prescription for water physical therapy ! So hopefully I feel better soon.

That said we have hired a house cleaner and are working on easy go to meals/looking into delivery services.

Thanks guys ❤️




If you have a chronic illness, what things do you do to make life easier? Its been 9 months since I was diagnosed with a few autoimmune diseases (April 2023) l and they aren't well managed so I am struggling to keep up with the bare minimum life stuff and parenting. It feels like I'm back to newborn survival mode =( 

Hopefully my new rheumatologist helps find a treatment plan that works but for now I just need to make things easier. 

[quesyrah]

Having a partner who carries half the load is the biggest. He also does more than his fair share when I’m having a rough go.

Are there any specific things you are struggling with? I might have more useful suggestions.

[ssmjlm]

Communication was key for us. When I was in the thick of figuring out what was wrong, I really just had to tell DH that I was at X% and he filled the gap.

It helps that E is old enough to help, so we were pretty upfront with what was going on.

Like pp said, is there something specific that you need help with?

[luckystar2]

It was tough in the beginning. I have RA and it started when dd was around 3 maybe? So stuff like picking her up was a challenge. Thankfully she was over her super clingy mommy attachment at that point. But dh had to do more stuff like that. Dh started a new job that required a decent amount of traveling when things happened. He ended up switching jobs because it was definitely a challenge for him to be completely away (he also didn’t love the job anyways!). We probably would have been one and done anyways but RA definitely put a stop to having more kids. So just having 1 young kid to deal with made things a little easier at least.

Meds helped and for the most part once that was figured out I was mostly flare free. I had a few and then trying to reduce meds caused some. But I was eventually able to completely come off meds and not relapse. I think I came off meds maybe after being on them about 10 years.

[namasteak]

quesyrah ssmjlm Everything. I'm just so damn tired all the time and any day I either have muscle pain (fibromyalgia) or joint pain (RA) or both. I also have plummers disease (a hyperthyroid issue that is actually well managed right now). 

DH is AMAZING and does all the chores but he is approaching burnout between work & doing so much around the house .

If keep waiting for a good day so I could do some freezer cooking to eliminate the food stress and we are planning to use some of our tax refund to have a scheduled house cleaner to eliminate a lot of the chores.

Socially is just not good right now because Ive had to say no to enough things that I'm not really invited to much anymore.

I think I just needed to vent and feel less alone in struggling to feel somewhat normal.

[namasteak]

My new rheumatologist took so much blood for testing last week I had to stay at the office to eat a snack and drink juice before they would let me leave. Most of it came back already with good news (normal thyroid levels, no lyme or lupus) but still waiting on some other results. I'm hopeful that he can help but its hard not to wallow when everything is a struggle.

[rhian]

My partner is the one with chronic illness that is mostly well managed now. I'll echo what others have said about communication, especially if things are sometimes fine and sometimes flare up. We typically split household/childcare responsibilities pretty equally, and my default is that I don't think about things that are his responsibility. But I am happy to step in and do more if he lets me know that he's not feeling well, but I need to know that.

When things are hard, just lowering standards a little has helped. Our house gets a bit messier than ideal, we eat more frozen food or takeout, our kid sometimes watches a little more TV than we prefer, but we've just come to terms with that being what's realistic for our lives.

The ability to outsource some things is also helpful if you're able to do that. We have a house cleaner, we do takeout or pay more for easy to prep foods (e.g. frozen foods, pre cut vegetables, etc), and are planning to hire out mowing/yardwork starting in the spring. At times we've also had a babysitter come for a few hours on a weekend to help us get caught up on things or rest. I know we're fortunate that we can afford to do all of that. But as others have said, if there are particular things you're struggling with, maybe you can prioritize where to spend a little extra money to make things more doable for you.

[abs]

I’m sorry. I gave basically every AI disease there is I think. Sjogren’s, RA, and Hashi’s are the big 3. Honestly what helps the most is water, exercise and routine. I have to walk daily and lift light weights 3-4 days a week. If I skip more than 2-3 days I get all crunchy in my joints and end up in pain. It’s taken a lot of trial and error to find out what works. In the meantime give yourself grace. It honestly to me sounds like you are dealing with some depression. I’d talk to your PCP and see if that is something that needs to be addressed.

As others said communication is key. I have periods where I feel great and take on as much as I can and others where just making it through the day takes a huge effort. My H is great and does what I need no questions asked.

[namasteak]

abs I'm medicated and in therapy. Thanks for checking on the mental health too <3

[namasteak]

I think I just needed other people to reassurel me that its ok to outsource more. It feels weird since I'm a SAHM of kids who are in school but it would definitely reduce the mental load.

[abs]

namasteak ok good!

I think AI diseases are a huge mindfuck. Like you look in the mirror and feel like you should be fine but then your actual body feels like it’s betraying you and is at least 96 years old. It’s super confusing. If you have the means to outsource more do it and don’t think twice! Anything to make your life easier will ultimately make you feel better.

[momof2]

I have five AI diagnoses. It is not well managed. Honestly, if you can afford outsourcing, do it. Don’t worry about the fact you are a SAHM. Outsource!!

My situation is even more complicated because I have a child with profound disabilities. We still have to changes diapers, give baths, brush teeth, get dressed, etc a teenager. I basically cannot do 90% of the physical labor for her.

Things we do:

1. Outsource some cooking. I have someone 2 days a week that does some limited kitchen clean up and cooks dinner those two days. She can also prep for future meals — like chop the veggies I will use for future recipes.
2. Maid service every two weeks. No one in my family is scrubbing bathrooms.
3. My husband does lots of the physical labor.
4. I do my physical labor in very small increments. So, I might load part of the dishwasher, lie down for 5 minutes, come back and finish.
5. Someone does our yard work — we do none of that.

[rhian]

I was posting at the same time as you before. Can you and your H brainstorm a list of super simple meals (vs trying to wait for a good day for freezer meals)? E.g. mac and cheese from a box (I sometimes throw in some broccoli to cook with the pasta to add a vegetable), sandwiches, scrambled eggs and toast, pasta with a jarred sauce. Sometimes I find that half of our food stress is just trying to figure out wtf we're going to eat, and having a list of options makes it feel more manageable. At times, we have made a physical list and posted it on our fridge.

And no shame in outsourcing if you can afford it! It doesn't matter that you are a SAHM. Chronic illness can be so hard because it can look like everything should be "fine" even if it isn't, and it's totally normal to need more help while dealing with health issues. E.g. if a SAHM had cancer, everyone would think it normal to outsource what possible. This is similar ... yes, you are a SAHM but you are dealing with more than a SAHM who does not have chronic illness. Everyone's situation, needs, and resources are different - do what works for you and your family.

[namasteak]

Chores are definitely a struggle. DH does a lot (all dishes, most cooking and the laundry) but there is so much one person can do. Our 8 & 10 year old alternate chores - 1 swiffers and the other picks up dog poop every day and they do the toilets on the weekends. But that still leaves a lot of chores to be done. I would really like for a good chunk of our tax return to go toward that.

DH & I both love cooking and have always been big on freezer cooking so we need to work on readjusting our expectations of meals. I used to be able to push through and cook for a day every couple of months but not lately.


The reassurance here has been so helpful, thank you <3

[jamaicam]

You have my sympathy. I have MS so I get the tiredness.

One of the big things that helped me was going to therapy. I had 6 sessions paid via my employment and they were very useful. She helped me to understand that it isn't my fault, that I can say no to things with no guilt and that I am worth putting first. The last was particularly hard for me - I would use all my energy on my kids and not save any for myself. So for example, I'd take them to their activities and then be too tired to exercise, but exercise is really helpful. So she helped me to get that right in my mind.

I have also learnt to ask for and accept help. I have some great mum friends whose kids do similar activities to mine and they help a lot with the drop off etc. I try and pay it back in ways that I can which don't use my energy - so by making phone calls for team events, joining committees that meat only via zoom, finding and ordering what my kids need on amazon for sports and ordering for their kids too. That way I don't feel like I am a burden but I am able to take part in the way that I can.

Another huge one for me which is related was choosing where to spend my energy. I may want to cook a nice meal, watch my kid play football, clean the house and go to the supermarket on a weekend. I try and prioritise and say I only have x amount of energy, what is the most important of those for me to spend it on. So I will watch my kid play football, order pick up from the supermarket for my partner to pick up, sit on the couch and fold laundry while directing the kids on what cleaning up to do, and order take out for example.

it is hard but with support, you will figure it out.

[macmars45]

I have cerebral palsy and epilepsy. Our DS(7.75) is autistic and needs lots of extra everything.

We outsource cleaning. EOW on Thursdays the house is cleaned. It's the best thing we pay for.

We outsourced snow removal twice this winter. But we also have a snowblower to make it faster for H.

I communicate with H when I know I'm going to be extra tired (like going back to work while still recovering from covid this past Monday & Tuesday). But also just in general. H carries a big load and I am so lucky to have him as my partner. He does most of the physical stuff with DS because dealing with 65 lb kid during a meltdown is really hard one handed, for example.

[namasteak]

Update in OP

[beerlover]

namasteak, my brother has ankylosing spondylitis also. Diagnosed in high school. His has been very well managed with his medications and I almost never hear him talk about any issues with it. I hope the same will be true for you eventually!

[loira]

I'm glad you found some better answers! I hope you start feeling better soon!

[abs]

namasteak I’m so glad you got better clarification and a good plan! No wonder you still felt so awful. I hope this helps!

[namasteak]

So far I've noticed an improvement! Not pain free and energy is still super low but I'm happy with anything at this point.

[jg183]

I'm glad you got answers and hope that helps. I was diagnosed with fibromyalgia until I finally got an MRI that showed I needed a spinal fusion and that was the reason for my numbness and pain

[midwestmama]

namasteak , I can't remember the exact name, but I believe I have some sort of spinal issue which causes chronic back pain (lower back & hips). A chiropractor diagnosed it (I went to a chiro as I was having chronic back pain in my 20s), and he refers to it as "spondy." Usually it's not too bad, but some movements/activities cause me to have pain/discomfort. I go to a chiro once a month now for adjustments/maintenance.

[namasteak]

Feb 21, 2024 20:32:15 GMT -5 midwestmama said:

namasteak , I can't remember the exact name, but I believe I have some sort of spinal issue which causes chronic back pain (lower back & hips). A chiropractor diagnosed it (I went to a chiro as I was having chronic back pain in my 20s), and he refers to it as "spondy." Usually it's not too bad, but some movements/activities cause me to have pain/discomfort. I go to a chiro once a month now for adjustments/maintenance.

Spondtkoisthesis?

What I have is an autoimmune disease - basically my immune system attacks the spine causing inflammation & is a degenerative joint disease.

I will talk to my rheumatologist about a chiro though - I saw one during all my pregnancies and she was very helpful!

[namasteak]

Feb 21, 2024 20:24:11 GMT -5 jg183 said:

I'm glad you got answers and hope that helps. I was diagnosed with fibromyalgia until I finally got an MRI that showed I needed a spinal fusion and that was the reason for my numbness and pain

So glad you have answers too! I know MRIs are expensive but I'm surprised drs don't offer them more often because they really do help diagnosis things!

[icedcoffee]

I’m sorry you’ve gotten such a run around. I hope things improve from here.

[pugz]

I'm so glad you got a corrected diagnosis! My uncle had the same thing. My mom and her sister have M.S. and Crohns (my mom has both, sister just has M.S.) Their dad had an AI disease too. So neither myself or my siblings have developed one but I always worry about it in the back of my mind. I am past the age my mom developed them though.

[Jalapeñomel]

I have a different type of spondy, and it’s well controlled right now. Hope you can get some relief!