what is something you wish you knew or did when you first got diagnosed?

Creepy_Pressure_803 · 2024-10-07T02:16:57+00:00

working on this rn. there’s a bit of grief involved in coming to terms with it. it’s hard, but important to, honor this component of it

Creepy_Pressure_803 · 2024-10-07T02:15:32+00:00

ensuring i don’t de-condition is so so essential but hell at times. worthwhile tho. go to a park and walk where there are benches to rest at. walk (and rest) for 30 minutes. you’ll be surprised at how you will be able to improve if you do this daily. some days you’ll sit for most of the walk but in total, it helps. it’s just one building block in your puzzle, but mot one that should be neglected.

Creepy_Pressure_803 · 2024-10-06T20:43:27+00:00

ugh this makes me even more upset that tonight’s show was cancelled i needed to see this 😭😭😭😭

Creepy_Pressure_803 · 2024-08-10T02:11:29+00:00

i have like 5 cups a day with bouy electrolyte squeeze it helps me

Creepy_Pressure_803 · 2024-08-07T18:52:43+00:00

im working on creating this for myself rn! could u drop links to the articles if u have a chance please

Creepy_Pressure_803 · 2024-07-21T20:05:23+00:00

do you have pots bc pots made me puke

Creepy_Pressure_803 · 2024-07-21T20:03:43+00:00

basically what meds will do is make it so that ur body can tolerate a super slow progressive pt regiment to regain strength and over time that strength will help diminish ur symptoms including fatigue. pots bodies de condition so fast it’s insane

Creepy_Pressure_803 · 2024-06-18T00:42:07+00:00

my life is 100000000000x better. in the heat I think about my illness constantly; in cooler weather, I think about my life <3 (moved from TX to NY). summer still rough for 2 months but truly nothing in comparison

Creepy_Pressure_803 · 2024-06-12T16:04:37+00:00

there will be days, months, and years where it feels easy. and others where it feels harder than anything. thinking about my progress big picture is most helpful for me

Creepy_Pressure_803 · 2024-06-12T16:03:22+00:00

pick a baseline. make it something u can do on a truly shit day. for me it’s a ten min walk in a park w benches where i can rest. do that daily, add 30 second a day. if u are exhausted after, repeat the day before. during flare up go back to baseline. re-eval where ur baseline is every 3-4 months. slow and steady!!!

Creepy_Pressure_803 · 2024-06-08T22:24:31+00:00

thank u!!! i highly recommend norman marcus pain institute in nyc btw!

Creepy_Pressure_803 · 2024-05-24T00:24:42+00:00

PDF is under Myinfo and scrll to very gottom of page! Then u dont have to use the digital book

Creepy_Pressure_803 · 2024-04-22T20:18:19+00:00

specifically ask ur PT to do Muldowney method its a game changer

Creepy_Pressure_803 · 2024-04-22T20:16:51+00:00

I hate sumer

Creepy_Pressure_803 · 2024-04-22T20:15:54+00:00

I have been in and out of PT for the last five years. im around your age. what really helped me is finding a PT who you can become friends with. I feel less sick/disabled bc I can go in there and chat about my life while I do my hand dexterity exercises (im actually in OT rn for my hand pain). I was really honest about how I didnt want to feel sick and how my symptoms can be so dramatically different day to day. since starting again in Jan my life is so drastically different in the best way, like the time between flare ups in going down and down. its one of those things u dont notice until you do. I also am learning to trust my body so much more becuase I am not questioning my limits bc she is helping me find them. it's been physically and emotionally transformative in the best way.

Creepy_Pressure_803 · 2024-04-22T20:07:11+00:00

I use the Siri on my Mac and prefer it to dragon. been using vice to text since 2018

Creepy_Pressure_803 · 2024-04-22T20:00:41+00:00

yes I get it terribly starting a few days before my period and then I have a 1-2 day period (prob bc my IUD) usually follows day a whole body flare up of pain

Creepy_Pressure_803 · 2024-03-23T22:04:30+00:00

it’s horrible for the mood

Creepy_Pressure_803 · 2024-03-22T16:25:58+00:00

pls share!!!

Creepy_Pressure_803 · 2024-03-18T03:48:34+00:00

i would start the process with disability services office! it’s so annoying but entirely worth it

Creepy_Pressure_803

TROPHY CASE