Do you ever feel burnt out by your medical needs?

[Arty]

Yes, especially when you have to schedule your life around your medical needs. It can be overwhelming.

[alyssa-silva]

I know what you mean. It absolutely can feel that way. Do you have any ways to recharge?

[Kel]

Oh absolutely! After a hospital visit in 2022, I had to take a break from seeing doctors for a bit because it was so much. I still do this to this day if I don’t have to see the doctor. SMA can be so draining especially with air travel. For every day I would say schedule rest, it’s a must! You might not think that you’re doing a lot, just existing with SMA can be a lot! Also do the best you can with things and know that sometimes SMA can be tough. The sooner I embraced SMA and allowed it to be what it is, it felt better. Once, my Bipap got messed up on vacation and I had terrible anxiety so my mom treated me to a facial so I would definitely recommend something like this too! Sometimes SMA just gets ya, and that’s ok. 🧡💜 One minute by minute.

[alyssa-silva]

So so true. And I’d love a facial if I didn’t have a tube taped to the right side of my face. 😆 I wonder if I could get half a facial for half the price hahahaha.

[eric-ovelgone]

I feel like that almost every day of the week anymore. Day starts with me waking up with a terrifying thought …what if attendant can’t make it in this morning? What if they get sick, car accident , issues with family members ? What do I do? Attendant arrives…check schedules. Known days be out, who can fill in? How long will they need to recover from surgery ? Can I find help for that many days? Need hoyer lift…been bugging coordinator since December …now need new prescription . New wheelchair ready…can’t get through to Numotion to setup delivery date. Next week crazy but chair keeps randomly stalling. Do I need attendant here? Better call coordinator . Attendant yelling at me because forgot to get shampoo …is it time to order catheters ? Can’t run out…no one in state sells them if run out. Time to reorder spinrasa? Not yet…don’t want to order too early. Have not been to Hopkins in like a year…do i have to schedule that? MDA clinic only open Monday before am dressed…nearly impossible to get there and cancel if ten minutes late. Got regular doc appointment coming up…how going to get blood test. State nurse needs to schedule appointments …must be this week …nurse with agency has mandatory visit…must also be this week . Why haven’t i heard anything about the financial forms filled out for another year of attendant care? Crap…am over by fifty bucks in checking account for keeping attendant care due to deposit…need to tell dad to go to bank. OMG.. someone whom shall not be named is telling me I need to be more proactive about my self advocacy …can i gouge their eyes out? Sigh…no…i don’t have the strength .

[alyssa-silva]

I absolutely understand where you’re coming from. I feel this. Hang in there. if you ever need to vent, we’re here.

[susana-m]

All of this sounds very familiar. It’s not so much dealing with SMA, it’s how it never actually ends. There’s no vacation, there’s no time off for you or your caretakers. It’s exhausting.

Like Arty said, scheduling your life around your medical needs, defining your life by the medical parameters in existence? It can suck the joy out of life.

Alyssa asked about recharging. This is what works for me, your mileage may vary.

I go to nature. It sounds like a tiny thing, going outside, meditating by a tree, watching the bees, getting a little sunshine or moonlight.

It helps.

There are studies showing an improvement and blood pressure simply by looking at a tree for five minutes. Did you know that you can get a free pass to any state park? For you and a companion?

The other thing is being of service. Being useful to others in some way, shape or form.

The idea of work is tricky on a lot of levels, whether you’re dealing with physical exhaustion, or losing access to services and financial support if you make too much money (haha!). Whether it’s writing on a forum like this, or being a counselor or volunteering for phone work or drawing watercolors, I don’t care what it is, but you have to do something that isn’t defined by disability.

There’s some trial & error but figuring out your version of a timeout looks like pays off in the long run.

And, while you’re figuring it out, you can vent here.

We got you.

[alyssa-silva]

I have similar ways of recharging, too. The beach is my favorite place to refuel. Unfortunately, I live in New England, where it’s too cold to sit by the ocean half the year, but I live for those moments in the spring and summer. Sometimes, though, I’m just too tired to get there. 🤪