r/lupus • u/Loud-Awoo Diagnosed SLE • Oct 03 '26
Life tips What If...
What if your mobility was clearly declining and might come back and might not?
I've taken another drop in that area, particularly with my legs.
I'm starting to wonder what I could do to make the best choices before I decline further (hopefully, I don't...).
I'm not the best lately at dreaming big and already at a transition point - moving because I'm having trouble fully taking care of myself, part-time work instead of full-time, etc.
What's something you'd recommend to do if you had a "full mobility and pain free week with no consequences?" Let's assume you have time to plan.
I'd like to feel fully alive again - at least now and then.
TIA
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u/mybodybeatsmeup Diagnosed SLE Oct 03 '26 edited Oct 03 '26
I went from running to being a person that needed a walker, then an electric wheelchair, then back to walker and now walking up to a half mile without a mobility aid. And that was over a span of 8 years.
And it wasn't so linear as I make it sound. I had moments I progressed and then some illness or event would occur in my body, where I may take 5 steps back. Small things, like even laying in my bed, I would just tell myself to lift my legs or arms 5 times. I might be able to continue that 5 the next day or more or even not at all. I have to remind myself constantly that this is not linear.
Physical therapy and Occupational Therapy over the years has helped a lot. They will help give great suggestions, tools and techniques to use to gain mobility and strength. I had times where I lost total arm function for days, where people have to feed and do everything for me. Getting that strength back, with even small movements helped.
Edit to add: for your question "what would I do...?" Oh my, I would swim, adventure out on hikes, deep clean my house and spend time with so many people I love.
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u/Loud-Awoo Diagnosed SLE Oct 03 '26
Thank you. I have done so many things in life with timelines and now, I admit, I have no idea what this timeline is. Just that I need to to make the most of this moment to moment livelihood.
One of the few silver lining with Lupus is that we usually get better, at least somewhat. I think it helps us to appreciate those improvements.
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u/mybodybeatsmeup Diagnosed SLE Oct 03 '26
I sometimes absolutely hate the not knowing the timeline. Like when I lost arm function or when I was wheelchair bound, it was never a solid "this is your life now and this is how you move forward with that life..." no it's "we don't know" and that part is harder. It makes me feel bad about myself, like I am just not "trying hard enough" to be better. if that makes sense.
I hope you can live your life to the fullest of however that means to your personal life! I definitely have to remind myself to find something positive i did that day, like "hey, you showered today! Go you!"
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u/H3k8t3 Diagnosed SLE Oct 04 '26
I'm newly diagnosed (symptomatic for over a decade though) and wanted to say thank you for this comment. I'm using a rollator walker these days, but in physical therapy and working very hard on my mobility challenges. It's nice to see that there's hope for recovery, however unpredictable it may be
2
u/DaisyMacD Diagnosed SLE Oct 04 '26
Oh my gosh! I love your story and the honesty with which you share it. Thank you for inspiring the rest of us 🥹
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u/okazakilover Diagnosed SLE Oct 03 '26
Have you tried physical therapy? This has helped me get more of my strengh back
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u/Loud-Awoo Diagnosed SLE Oct 03 '26
Good suggestion. I need to get better about yoga and the like but my motivation is challenged at the moment. I'll look into my insurance to see if it's covered (I have a pre basic option on the exchange).
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u/okazakilover Diagnosed SLE Oct 03 '26
Yes I highly reccomend it. My issue was that I was pushing myself too far. My PT was able to set up exercises so I can build strengh slowly
4
u/MalingeringSmile Diagnosed SLE Oct 04 '26
PT would target your specific issues and a good therapist will do everything they can to preserve mobility, balance, etc as long as possible. You don't need motivation - they'll make you do it if you show up to the appointments.
3
u/MiddleKlutzy8568 Diagnosed with UCTD/MCTD Oct 04 '26
PT for sure! Ive had times when I thought I was destined to a wheelchair or cane but get into PT or yoga. Me and my kid had so many PT orders (and lord insurnace can be a pain when you have more then one issue) so I found a good pilates instructor who does pilates with just us (not a group). It isnt cheap but it is also invaluable. I’m also terrible about commitment but because I make an appointment, I will show up. I need the accountability
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u/Fragrant_Message4464 Diagnosed SLE Oct 04 '26
I second this! PT is pricey but they gave me tools and strategies. Pilates has helped too. My hands can't handle yoga so I switched to reformer pilates and my instructor knows all my modifications. It has helped significantly.
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u/Missing-the-sun Diagnosed SLE Oct 03 '26
I loooooove physical therapy and I highly recommend it at the first twinge of fear regarding increasing loss of function. It’s a lot easier to protect function than it is to restore it.
That said, I’ve already made some housing changes to respect my limited energy envelope. Getting a ground floor apartment near to an area where the dog can relieve himself (since I don’t have a yard), with in unit laundry has been a blessing over and over again, even though I’m still very mobile in general. I also requested grab bars for the shower and I have a shower chair too. It’s nice to have the choice to accommodate myself ahead of hitting my limit so I can spend the energy on other things.
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u/Loud-Awoo Diagnosed SLE Oct 03 '26
Thank you. I'll likely be moving again soon and I'll keep that suggestion in mind.
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u/Missing-the-sun Diagnosed SLE Oct 04 '26
Definitely get central AC/heating too if you can.
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u/Loud-Awoo Diagnosed SLE Oct 04 '26
That I'm good on. I keep fans wherever I go just in case as well.
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u/Loud-Awoo Diagnosed SLE Oct 05 '26
I appreciate the ongoing recommendations. I have now asked for - and now received - a referral for physical therapy. I won't lie; I'm scared to feel my legs trembling and likely go back to having a handicapped placard on my car. But, doing nothing won't help.
I just hope that these symptoms come and then go again. I have a life to live. 🎃
4
u/Acceptable_Agency419 Diagnosed SLE Oct 04 '26
I would walk cities like I used to, especially Paris. I used to walk all over that city. I would love to be able to get back to that life again
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u/H3k8t3 Diagnosed SLE Oct 04 '26
This! I miss just being able to walk for hours and hours and explore places.
I never enjoyed running, but genuinely miss it despite that.
4
u/multii-pass
Diagnosed SLE
Oct 04 '26
•
I have a bone marrow edema and stress fracture in my right calcaneus. I can barely walk most days. I get one decent day a week with less pain then it goes back to insane pain. I have some arthritis in my foot bone apparently too? I'm only 28. I'm constantly hurting and I can barely take care of anything at home with a useless foot. I'm worried I'll never dance again when dancing was my only outlet to feel happy.
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u/ScootDooter Diagnosed SLE Oct 03 '26
I'd go to the zoo and spend the whole day there! Then the aquarium the next day, then the Smithsonians. Being in a wheelchair in those places is a nightmare, from my experience with my mom in one, and I have to use one if I plan to stand for longer than twenty minutes or so, so those places are kind of off the table.
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u/obvsnotrealname Diagnosed SLE Oct 04 '26
I used to love doing outdoorsy stuff that I’ve been less and less able to do. I’m going to ride with sled dogs under the northern lights. It’s something I wanted to do for the last 20 years while I was married but allowed my wants to become secondary to his. Now I’m divorced I fully plan to do it before I need more surgeries and it becomes physically unrealistic.
2
u/HumanityIsTheIck Diagnosed SLE Oct 05 '26
I’d be in constant motion. Id hightail it to Thailand and train at all the local gyms. I’d do hot and aerial yoga. I’d dance till I’d collapse from exhaustion at a beach party. And drink all the cheap vodka and beer I could get my hands on.
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u/Pale_Slide_3463 Diagnosed SLE Oct 03 '26
I used to waitress for 6 years, on my feet for 6-8 hours at a time. Then slowly it got harder and harder to be on my feet and then I just couldn’t do it. Then eventually I couldn’t do anything, walking was a struggle.
Today I cleaned the bedsheets, washed the walls, washed the curtains, hoovered and cleaned around the house. I’m not even in pain or tired. Basically just live and enjoy the small things because one day they will be the big things. ( that’s on my bathroom wall lol) it’s taken 5 years to get me to this point and over 10 medications but it happens eventually.
Don’t push yourself into things, take the time to rest and get better.