I’m in the same boat. I use all my strength just making it through the workday and when I get home I am exhausted and in pain and I cannot do anything else. It’s really hard to get motivation but I am letting my life pass me by which sucks.

I understand exactly how you feel. It is a valid feeling. It feels like we are trapped in a never ending cycle. Idk about you, but it can definitely be the chronic fatigue as well that is also holding us back. I always feel so tired. The only thing that really pushes me to try is knowing that eventually I will make it to a place in my life where I’m doing something worth while in my day that motivates me to keep going. I want to be an archaeologist and eventually a professor. I want change the world, even if it’s such a slight effect I leave on it. What also motivates me is SO. Someone to vent to and someone to share your life with who knows to help you out when needed is the best thing for us, although, not an option for everyone. I also am motivated (or gaslighted) by the fact that there are people worse than me living their lives all the same. Whatever works (e.g. motivation from loved ones or spiting the world and yourself), life carries on. Everyone reading this, YOU GOT THIS!, you’re not alone :) just remember that :))

Currently I basically do nothing all day while my partner goes to work to support us. I am unable/not allowed to work because if I did I wouldn’t get my health insurance and I need that to survive all my conditions. It’s a horrible dichotomy: choose between living well with money or living well with medications.

I do whatever I can in bed ... got a mobility aid for out of the house... everything is a struggle

When I was working I rested when I came home then on the weekends I made it a point to do one thing productive in the house and 1 thing fun . Some days I could do 2 or 3 of each depending but I played it by ear and definitely did 1 of each even if it was just take a shower and sit in my car at the beach or a bench in the mall. I made a packed with my girl friends to go out dancing once a month that was so hard I would sleep and rest all day to get ready.

I miss work. I used to be a total workaholic. I’d work 60 hour weeks happily. Of course, I was 26 and I didn’t know that the pain wasn’t normal. Shortly after hitting 30, by body decided to start attacking my lungs to get my attention. Unfortunately, the er drs kept calling it anxiety and sending me home, despite my daily cough and my low lung capacity. This did bad things to my body, the coughing turned to puking, I lost too much weight too quickly, I couldn’t keep water down, I needed help walking. My mom decided I needed to go to the hospital, they had to give me 2 liters of fluids before I could give them a urine sample. Two nurses had to walk me to the restroom, one decided to check my O2 saturation and surprise, it was too low. I was immediately put on O2. The dr at one point decided to do a ct to rule out a pulmonary embolism, and found a heck load of inflammation. (She definitely saved my life) They told me and my mom that it looked like lymphoma, and I was like “ok, cool.” Meanwhile my mom is just bawling, cause she actually has her wits about her. I was just too tired to care. During all of this illness, I’d been attempting to work(food service, way fun). I’d worked the morning that I was admitted to the hospital. Unfortunately, I haven’t worked since. But my lungs are better! I was on O2 for a year, I’m still on the meds to keep my body from attacking my lungs, but finally at a lower dose. (Interstitial lung disease, btw) We’ve been trying to find out why my joints hurt so much and what caused my lung disease, well my research finally paid off cause hEDS research reads a lot like my medical history. Unfortunately, I don’t have an answer for you. I have no motivation to do anything. I’m in too much pain. I’m either at a Dr appointment, the chiro, physical therapy, psycho therapy, running errands where I won’t have to walk much, or at home in bed. My pain level has gotten ridiculous in the past several months and all I have for it is edibles when I get above a 6.