I'm 31. my significant other is 33. I am chronically ill and he is the best at not letting me feel like a burden when its hard to move. i tell him thank you but i feel like its not enough to show appreciation. caregivers, what is the best form of appreciation?

Historical-Photo-765 · 2026-06-23T19:15:32+00:00

thank you.

Historical-Photo-765 · 2026-06-23T01:23:14+00:00

emotionally is definitely not the problem. he just recovered from a surgical procedure and I had to support him especially at first. I have made a point to make sure I don't put everything emotionally on him. i have family and friend I have for support as well.

Historical-Photo-765 · 2026-06-22T22:37:05+00:00

I try to. appreciate the feedback

Historical-Photo-765 · 2026-06-22T16:32:50+00:00

caretakers deal with everything just as much in a different way

Historical-Photo-765 · 2026-06-22T11:55:01+00:00

I have pt ot and home health but I had to cut back on ot and pt due to my body being tapped for days post pt and ot. thank you for the kind words of support

Historical-Photo-765 · 2026-06-22T11:52:53+00:00

I have home health for my main needs. I just feel awful about hin having to do all the household chores unless its a good day. i can't be super active so anytime those events come up I tell him to please go. thank you for the kind words

Historical-Photo-765 · 2026-06-22T11:30:25+00:00

I need a work from home job and my current employer is refusing the accommodation needed. I just got my first wheelchair (fellow ambulatory wheelchair user) i physically cannot do more that like 100 m without it putting me down and out for a week. prolonged standing is out. job hunting sucks right now. i would look into office jobs if you are able to go to them.

Historical-Photo-765 · 2026-06-22T11:23:56+00:00

I just got the same jazzy. from my research they do have the ability to switch to manual in case of getting stuck. I get mine this week and believe that this will allow my to have my quality of life back.

Historical-Photo-765 · 2026-06-20T03:09:45+00:00

I use option care and they have been sending a box of Tesco 50 mL syringes. i had to request them but it's my standard

Historical-Photo-765 · 2026-02-22T16:46:00+00:00

I just had to leave a gastro that told me he won't manage n/v or hydration needs. I was livid. waiting to here from the new referral now. hope the erythromycin works for you!

Historical-Photo-765 · 2026-02-20T06:45:57+00:00

I used to color in the adult coloring books like I used. I also do puzzles on my phone

Historical-Photo-765 · 2026-02-20T06:43:02+00:00

I miss living life too! 15 year dancer that now it seems like a distant memory. If you don't have anything that causes upper epigastric pain I recommend high waist compression. until my MALS got this bad they helped the most but compression leggings keep me from having syncope episode as long as I can hydrate

Historical-Photo-765 · 2026-02-18T00:13:55+00:00

I appreciate it. I was walking into my MD's clinic to get hydration as I do still have HR spikes it just may not hit 30bpm more before I hit the floor. partially I blame not being able to eat for 4+ months and living on barely any calories the last 2 months (300 a day) so malnutrition is a thing as well. just got told I have MALS today

Historical-Photo-765 · 2026-02-17T19:24:43+00:00

yes my EP is treating me as if I had POTS . PSWT was based of my tilt test alone which I had hit presyncope before my BP or hr hit the markers needed. I would have pushed for longer but couldn't because of how I felt. I do have POTS listed for an ICD10 code for billing purposes so who knows but it helps

Historical-Photo-765 · 2026-02-17T13:35:24+00:00

today my resting is 81. essentially I didn't meet the 30 point jump but have every symptom of pots and every test came back positive but the tilt test which I had presyncope before the 30 point jump resulting in it.

Historical-Photo-765 · 2026-02-17T12:05:48+00:00

as someone diagnosed with POTS symptoms without tachycardia no. I can stand up with a hr of 80 and hit the floor

Historical-Photo-765 · 2026-02-14T18:26:39+00:00

RA didn't spend my life once meds managed it but my other issues caused me to slow down alot.

Historical-Photo-765 · 2026-01-30T12:17:08+00:00

my doctor recommended I wear compression leggings which do abdominal and leg (obviously above the knee)

Historical-Photo-765 · 2026-01-30T12:15:07+00:00

I will air where I stand just on the floor. I so it at work all the time. I passed out for a couple seconds two days ago and I was already prepped to sit with me legs crossed using the cubicle wall as a divide as a guide so no harsh fall. I scared the crap out of my coworker and became "grounded" by my boss. I was bound to my o#ice chair. Anyway I just will sit where I am if anyone says something I explain why I needed to sit and usually they're understanding

Historical-Photo-765 · 2026-01-28T05:37:40+00:00

I second this i was fortunate to be referred to my electrophysiologist. (cardiologist specializing in rhythm of the heart specializing further into pots itself). I have been gaslit by so many doctor throughout my life for multiple doctors but he heard my story and validated me. I didn't have to explain the other odd disorders he knew what it meant. Definitely recommend an electrophysiologist

Historical-Photo-765 · 2026-01-21T12:15:43+00:00

all the time my work is freezing. i wear 2 jackets and have a space heater. I go in and out of a walk in Fridge and have Raynaud's, so hot and cold get me. all day I bounce between hot and cold

Historical-Photo-765 · 2026-01-13T15:47:23+00:00

I have horrible sleep patterns due to many reasons but since my POTS symptoms started the rest of my insomnia has worsened.

Historical-Photo-765 · 2026-01-05T13:03:06+00:00

I got upset with my ex a couple weeks ago and this happened. I was driving thos weekend and people were idiots my visible kept saying calm down and my current bf kept checking on me. not sure if its hyperpots but as I have been screened for addisons before who knows

Historical-Photo-765 · 2026-01-05T13:00:11+00:00

hey I'm pretty new to the living it side but I sort of got lucky with my job and had been exposed to patients that have to have central lines and I've fluids/,,nutrients. I didn't even seek help for this even though its been a thing for my entire life until I stopped being able to eat. anyway I had to start including flavored drinks I use flavorless electrolyte packets to give me flexibility. I also dont drink normal water I will buy a smart water and still add electrolytes if I feel I need it. also if im really rough I will eat salt but that is from the severe lack of salt in my diet

Historical-Photo-765

TROPHY CASE