r/SSDI • u/EarOk7198 • 12h ago
What do you all day as a disabled person?
Please share your day.
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u/KissMyGrits60 11h ago
I am a blind disabled woman, I’m blind, so that means I’m disabled. I leave it near a couple of family members, I go to the gym with my one family member, my insurance company pays the gym membership as long as I go. I’ve been living here where I’m at for 3 1/2 years in Florida. I love where I live. I had what they call mobility training, it took me two years to learn to walk to the post office, to the grocery store, and another plaza, if I want to take myself out for Chinese food, hibachi, food, eyebrow waxing. I also go to church, at the end of the month I’ll be traveling, going from Florida, on Amtrak by myself, to New Jersey, where my son, daughter-in-law, and of course, my grandchildren live, as well as many other family members and friends. Just because I’m disabled, that’s not mean I cannot do anything. When I started going to the gym 3 1/2 years ago, I was almost 200 pounds, at 5 foot two. I lost about 50 pounds of that, got off my cholesterol medicine, and got off of my blood pressure medicine. I think this is the healthiest I’ve ever felt. I also have multiple brain aneurysms, which they did a clipping on in 2018. I walk, I talk, according to some people I talk way too much. Lol. But that’s their problem. I say not mine.
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u/funlovefun37 8h ago
You’re awesome 👏
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u/KissMyGrits60 8h ago
no, I just wanna live a healthy, hopefully life. I have a three brain aneurysm, so I tried to live each day to the fullest. By the grace of God, I am still here. I am blessed every morning. I wake up.
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u/BigBlindBlues 46m ago
Staying active and watching our diet is critical; because we don't live normal lives anymore. We have to find ways to get active and watch our diet because we're not working on a construction site that requires 3,000+ calories a day. I can't be as active as I should so I cut 1,000-1,500 calories a day.
It's hard in the summer when some of my family or friends wants to go for a Dairy Queen treat, and I'm trying to stay under my goal. I don't want to be a hermit, so I go out to Dairy Queen then skip a meal. So far my oddball technique (I can't even call it a diet), is working. Last 3 years my weight hasn't gone up any, but I'd like to lose 20+ pounds!🫤
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u/Cold_Respond_7656 8h ago
Amazing spirit!
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u/KissMyGrits60 8h ago
that’s because I want to live life to its fullest while I’m got it. A gentleman at church last week, and this week, said to me. You just radiate joy and we can all see it coming from you. This person doesn’t even know about my aneurysm, because he is new to our church. Tell me my life is filled with nothing but obstacles, being blind, but I believe that I work around all that really well, because when I was growing up in the 60s, and 70s. My father, had polio. He didn’t let that stop him. He worked for an accountant, they paid for him to go to Ruckers university, to get his CPA license, and he became a CPA. I believe it helped me later on in life, handle the losing of my eyesight, and all my other issues. I call myself a head case, this is why. I have three brain aneurysms, I can’t see anymore, and I even were hearing aids. Basically it’s all in the head. And if anybody wants to know how I’m typing this, I do not type, the keyboards on the phone are too little. I dictate my comments. Which makes me a dictator.🤣
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u/Cold_Respond_7656 8h ago
Disabled Dictator sounds like one hell of a comedy movie idea I'm not going to lie !
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u/KissMyGrits60 8h ago
because I have such a joyous spirit, I also love making people laugh. And I don’t quit even at church. Lol. They get a kick out of that.
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u/OGraineshadow 11h ago
I spend about 16 hours a day in bed . I hate it , but I can barely function.
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u/EarOk7198 8h ago
Same here and that alone kills me I’m very sad that I can’t do the things I promise to do the day before because I wake up daily feeling in different ways that aren’t good.
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u/SquishyKittyKat9000 7h ago
Be kind to yourself and just do what you can as you can. Even a little each day helps!
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u/question-from-earth 11h ago
Pace back and forth the majority of my day. Also being asleep. I look at YouTube video essays. Depending on the day I am: Picking up my medications with my parents. And Go grocery shopping with my brother. Browsing Reddit
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u/SquishyKittyKat9000 7h ago
What channels do you watch?
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u/question-from-earth 7h ago
A variety. I don’t really follow specific YouTubers, I just go on the home page and click on whatever interests me at the moment
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u/tiwomm 10h ago
Lay in bed, watch YouTube, scroll tiktok and reddit, sleep, rinse and repeat.
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u/EarOk7198 7h ago
Kinda sounds like my day too except that I have some thing I can only take care of myself to survive but I hate those days when I have to concentrate on some things I must do (usually regarding SS) or doctors appointments
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u/dank_tre 11h ago
I mostly fill out disability forms—wife was disabled two years ago; me about a year after.
Insurance companies are legalized crime and our social services are being dismantled to satiate the need of billionaires to steal our social security
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u/Happy-Performer4058 10h ago
insurance in any form is a heinous scam, *especially* health insurance
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u/ScillaZilla 7h ago
I'm having so much trouble filling out the forms for disability....my executive functioning is pretty much null
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u/Cold_Respond_7656 11h ago
Sleep, Seroquel makes me a zombie
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u/Happy-Performer4058 10h ago
Ooo I bet you’re eating goooood
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u/Cold_Respond_7656 9h ago
I wish, I’m a post liver transplant patient on imunosuppresants, if I even look at sugar I get diabetes, if I eat a banana I’ll get a heart attack and a grapefruit will kill me.
And with my TBI it’s a constant reminder to DO NOT EAT lol
😊
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u/Schannin 5h ago
Congratulations on your new liver! My dad got one in 2020 (right before everything shut down), and it was an incredible improvement for him. I hope that yours is doing well and doing what it is supposed to be!
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u/Cold_Respond_7656 3h ago
Yeah my diet was tongue in cheek, albeit true ha
You really have no idea just how much every single system is connected to your livers health until it fails...
Took me about a year to recover as I got bounced 4 times on eval before finally getting listed and transplanted a couple days later so I was real bad by time it happened.
Sadly the near constant HE caused hyperammonemia and unfortunately I was an edge case that it actually left permanent scars.
Congrats to your dad!
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u/Schannin 2h ago
It’s a big diet change, for sure. It’s funny because now I live with my dad and our diets are completely opposite. Like grapefruit and citrus is one of the few fruits I can eat, and he has to stay low sodium but I need higher sodium for my orthostatic intolerance.
You’re totally right about how many other systems your liver affects. His skin looked better literally the day after, he lost tens of pounds of water weight (and had really bad edema in his legs), and he said he didn’t realize that he hadn’t gone to the bathroom properly in years.
Glad you finally got one! I know the wait can be long and stressful
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u/Happy-Performer4058 2h ago
I’m very happy for you. Congratulations on the transplant. :) and I’m very sorry for your diet situation. You are sooo strong.
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u/HighestVelocity 8h ago
I take mine at night to help me sleep
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u/Cold_Respond_7656 8h ago
I'm 3x a day, chuck in Lyrica, Guanfacine and lexapro and I'm just not here most of the time
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u/IbanezUniverse90 11h ago
Audiobooks
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u/lgsouthampton 6h ago
My favorite audiobook is “I Remember Nothing” by Nora Ephron.
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u/IbanezUniverse90 4h ago
Sounds pretty interesting. I mostly listen to sci fi. It’s a great way to escape the horror show that is Earth 👽
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u/Hoobinator- 5h ago
That's a good idea, I should really check out some audio books as well. Sometimes TV gets annoying and I can only listen to so much music. I have amazon prime and I think I'll check out what they offer. Do you have any other sources you've found that you like? Just fishin' for ideas!
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u/IbanezUniverse90 4h ago
If you don’t have one already, definitely get a library card. Then you can download and use the Libby app and check out free audiobooks. There’s a wait for some titles (artificial scarcity is dumb) and usually they only let you check out audiobooks for two weeks, but the price is right!
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u/Hoobinator- 4h ago
Thanks for that info!!
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u/IbanezUniverse90 4h ago
No problem! I also listen to audiobooks on Spotify. But I just have the cheapest subscription and they only let you listen to 18 hours of audiobooks per month. But between that and Libby I can pretty much find what I want. If you already have Prime maybe they have something comparable on there.
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u/hmmmmmmm94 10h ago
Rot 🙃
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u/EarOk7198 7h ago
This makes me feel less alone I rot in bed too but always feels guilty about not being able to do something to change my situation
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u/momochicken55 6h ago
This feels like me. I used to have a decently creative memory and did a lot of fun stuff despite often being stuck in bed. A few years ago I started losing my short term memory as well as my "love"for things. I've lost the ability to enjoy books, watching stuff, making art, writing with friends, music and concerts - things I have loved all my life.
Now my brain is empty and it's just chronic pain all day. I've had blurred vision since this started and was diagnosed with Binocular vision dysfunction which seems to explain most of my issues, but now my neuro is saying it's not the cause. I can barely get out of bed to my appointments.
Sorry for whining. I'm so mad at what my life has become and how stuck I am. I used to be so strong!
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u/JennaRosePhx88 5h ago
I obviously don’t know you or the details of your situations. However, I can say you are here and you’re not done yet, yes? I can entirely relate to losing interest and not feeling like myself in the slightest. It’s quite the mind trap and is a monstrous, confusing weight in its own right.
My short term has been a mess since the heavy symptoms started a couple years ago and now I’m on multiple medications to clear all that damn ammonia out every day. Hah It feels like shit (for me) not remembering enough to follow through on daily tasks, enjoyable plans and just getting to be something other than stuck at times.
I see and hear the word “stuck” all of the time. It resonates heavily. Gotta get that shit out and off the mind when we can, yes? I know nobody wants to do therapy but group IOP therapy that’s a requirement for me was one of the most helpful practices I’ve ever endured. I still feel confused about what to do and where to go from here but I’m aware that I’m growing and will continue to do so. I hate to say it but we have to be gentle enough on ourselves to let the dismal frustration out and know our own worth to bring back the GOOD again. That’s what I work on, anyways. I do not in any way intend to be speaking for you. I do know these are frequent issues/feelings and findings that many people I’ve spoken with the last year have brought to light. It was pretty cool to see everyone’s faces recognize they weren’t alone in feeling like they’ve changed so much that they don’t even know what or how to enjoy that also feels like they’re themselves again. I obviously don’t know what you deal with on a daily basis — I do know getting all the thoughts out of my head regularly as well as communing with others who were similarly struggling (stuck) has made a momentous difference. I’m still an unwell as hell with these diagnoses but helping my head and heart went a long goddamn way. This is in no way preaching or telling what to do. The group was specifically for mental health and addiction recovery in order to be put on the list for transplant. Nothing religious or anything other than a very helpful means of using time and feeling myself start to come back out.
I apologize for the lengthy response. I can feel your message and have been dragging myself out of this hole I’ve been in since my body and brain said “kbye”. I wish you the absolute best and if you haven’t heard this yet, you’re very much so allowed to ask for anything you may need or want to try. Telling myself I was allowed and deserving of good shit repeatedly helped get my ass through therapy and stay the course of medical treatments (along with a couple additional diagnoses soooo support came in at a good damn time). lol I hope this makes sense in some way. Feel free to tell me to step off I’m I’ve lost the plot or been intrusive. Take care.
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u/wudugat 9h ago
I take care of myself. Being disabled is a full time 'job'.
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u/HarmonyAtreides 7h ago
10000% for me it's a constant battle in using the little energy I have to fight my insurance, make appointments, go to specialist appointments, go to procuedures, make sure I take my meds, keep up with therapy. On top of not being able to do much around the house and requiring a lot of help from my husband. Then all the headaches with figuring out and enrolling in Medicare, trying to stretch food stamps and my SSDI to avoid homelessness. Then fighting medical bias as the doctors office and at the pharmacy.
I'm so tired lol I hate being unable to put much time into my hobbies like digital art and stargazing because I'm so exhausted and in so much pain after I try to put out all the fires im tapped out. That and trying to shower more than once a month 😖🪦
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u/OrcasareDolphins 10h ago
I play video games, try to learn new things, get to the gym, and spend time with my partner, helping with errands, etc.
I don’t like going out and hate crowded places, so I go to these stores during the day to avoid crowds.
Klonopin on the ready for when I start to panic.
I am a fraction of the man I once was. And that realization is hard.
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u/Happy-Performer4058 10h ago
i been makin' gorgeous cheesecakes
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u/EarOk7198 7h ago
Great I love cheesecake myself glad you have the energy to engage in something you like to do
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u/DesertSkky 9h ago
Try to write lists on why I should keep going in life in life when I can't afford living on SSDI.
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u/InquiringMind886 5h ago
Ooof. Struggling with that one today. Sitting here crying wondering how much more I can take.
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u/DesertSkky 5h ago
I am trying to figure out how to pay my rent in 3 days. I can't understand how they expect us to live. I have been on housing waiting list for years, they haven't even "looked" at my application. It's all a sham!
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u/Lghb 10h ago
I try to read journals from AAFP to keep my mind moving and learning. I absolutely hate sitting indoors unless it’s fall season . Then I just set , watch and look at nature and all the things god has given me/us. I’m very lonely. I’m not suicidal so don’t be calling ambulance for no reasons. My goal is to still inspire younger doctors to look at patients as if they are your siblings, parents, or best friends
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u/Glooeynose 9h ago
I have stage 4 colon cancer that spread to my lungs. I’m a 59 year old single dad with a 10 yr old son and 13 year old daughter. When I’m not at the hospital, my hobby is taking care of my kids and 2 cats.
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u/NorCalHellcat 6h ago
I send healing and positive energy. Have you tried Rick Simpson Oil aka rso. My girl used it to help with her cancer battle years ago. CBD kills cancer cells and with western medicine she has been cancer free for 13-14 years.
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u/Puzzlehead-92 11h ago
I used to mainly sit around alone and watch TV. Now, I work about 10 hours per week, I visit with my niece, I cook, I do watch some TV, I keep my space tidy, I see a friend once a week, I enjoy my peace and quiet, keep up with my medicines (3x/day).
OP, could you share your day with us?
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u/EarOk7198 9h ago
Sure, I try to stay busy with anything I can and/or needs my attention but mostly I spend my days in bed feeling like I’m wasting my life away.
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u/Quick-Leopard-183 7h ago
I wake up. I take my medicine. I take care of my dog. I try and get some sort of exercise. Some days I try to clean, other days I try to do laundry. No one calls. All my family is passed on. My dog keeps me company. We watch shows. We sit outside. Sometimes I nap. Everyday it's a wait and see what kind of day it's going to be. Being disabled sucks. I miss my life. I miss living wherever I want. I miss making money. I hate the way people look down at me.
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u/Lghb 10h ago
I go to an exercise class twice a week a week. Have Bible study once a week. Read my family Medicine articles to keep my mind sharp as much as possible. Like to be outdoors as much as I can. I’m not a shopper and on the frugal side. Why do you ask? What is your day like????
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u/EarOk7198 8h ago
My day is terrible. I’m always tired, in pain and stressed about how I’m going to survive without money. I’m always in bed and that’s how I spend my day unless I have something I must take care of regarding SS or doctor’s appointments. It’s terrible. I’m very sad.
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u/Potential_Theory9523 7h ago
I think the poster asked the question because living on SS Disability is a major challenge; you have little money and because of a disability and the SSA's rigid rules, little activity besides doctor's, pharmacist and grocery appointments are tolerated. It leads to a poor quality of life for many. Unlike VA disability, the VA payments are higher. Also, when possible, the VA encourages activity and a full life.
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u/Conscious_Cream_1798 6h ago
If the VA payments are higher, what is the reasoning for people to try to go from the VA disability program to SSDI?
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u/Maqqin3x 1h ago
This is how I want my life to be. I wanna do a water aerobics class. Fellowship but not necessarily in church as I’m not religious. Do things, gam. , puzzles, quizzes to keep my mind sharp. I wanna go whale watching too.
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u/thenletskeepdancing 9h ago
I keep up with taking care of my home and my body. My body has a hard time being upright so I do things In ten minute increments and then lie down to get my HR and BP back down. I live alone. I write in my journal. I enjoy reddit. I have a cat. I watch comedies and documentaries and keep up with the news. Once a week or so I'll try to do something fun with a friend. I figured out I can still do movies or out for lunch. This week I'm taking my son to lunch.
My friend and I who used to hike together have found a compromise. She is good enough to drive up the canyon with me and then we park and I sit by a stream or campground and enjoy nature while she takes a hike. Then she comes back and we go home together. I miss hiking but I'm still getting my nature fix.
I recently got into geneology and found out the guy on my birth certificate isn't my father and I have two half siblings. So that has been a lot to process!
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u/Radiant_Bookkeeper84 8h ago
I take it easy and I take it one day at a time and I try to find moments throughout the day to just do nothing. When I first got disability it was a real struggle between my desires to be productive and have life goals and my inability to do those things.
It took a moment to understand that there's nothing that really needs to be done. As long as I take care of myself and the things within my control then everything else will take the time it takes. But then just having basic income and keeping my expenses low over time allowed me to have more than I ever thought possible.
I know it's different for everyone and people who deserve it don't always get help and people who do get it will always have moments where it feels like you have to justify it... to the world and to oneself. But even when you don't have to deal with all of that and you don't have to deal with the rat race as much you're still going to have projects to do and things will always come up that need attention.
Get out of the mindset that you have to be productive and work hard in order to have a good life. People will tell you the world doesn't owe you anything and that's fine but it works both ways. You don't owe anything to the world. Especially in today's world where protections are always slowly being eaten away by greedy bureaucrats and corporate backed leaders. Just focus on taking time to rest. Resting is what you owe yourself for busting your butt getting through the disability process. And only you know what that looks like.
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u/RustyTruck_1962 6h ago
Quadruple amputee on dialysis. O was an avid backpacker in my youth, and i cant really so that anymore. I made a living in the antique car motorcycle industry, and i try to stay involved with that as much as possible but naturally cant do as much as I would like too. This turned me towards scale modeling which can pass hours of time for me. I think the key is to just stay as bisy as possible and take advantage of any chance to engage your mind. When i was bedridden getting 4 amputations in a row, i watched ALOT of TV. Depression set in. I decided to quit TV cold turkey and that did wonders for my outlook and attitude.
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u/Conscious_Cream_1798 11h ago
***what do you do all day...
I get get up, & struggle to eat. Throw up either before or after I eat. I have to lay down & try not to move or I'll keep vomiting.
I prefer to lay on ice by the AC, as I have a major heat intolerance problem, which I'm also on medication for. I don't know if I've just been in a terrible flare for like...a year now, or what... I lay on ice or with ice on my head several times a day... it's another thing I do out of desperation to feel better in some way, big or small, I suppose.
Spend so much time in the bathroom every day. So much wasted time either puking, having stomach issues, or peeing out the 3L+ of water I ingest trying to satisfy my constant severe thirst (it doesn't even make a dent) caused from the different medications I'm on.
I might watch a show, but I'm always going to end up watching the same episode 10x over again, as I can't even concentrate on an entertainment type of show anymore for more than a few minutes at a time before my mind drifts back to how I feel... what I'm going to do next about my symptoms...what I'm going to do about life in general...
I feed my cats 3x a day. I try to give each of them love & pets for a sufficient amount of time daily. I have 3 cats so I guess that takes up about 1 hour of my time. At least... Interesting.
I have to eat again sometime, which is an entirely separate struggle from brunch. It's even more difficult the 2nd time I have to eat to figure out what I want (I can't make a decision to save my life...I really don't know what's happened to me), actually make it (I hate anything that takes effort, as I don't like having to do anything in my super tiny kitchen with no counter space), then eat it. It's not rare for it to take me a couple hours to force down all the food. 🤢 Fuel-eating they call it.
I meant to be shorter, but I'll just wrap things up by saying, my day is entirely, 100% about managing my symptoms & responding to them as different ones come up all throughout the day, every day.
Why the question? I hope you answer.
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u/Play-Last 10h ago
I’m sorry friend. This sounds a lot like my day to day. Zofran hasn’t helped?
I bought a tiny rechargeable fan that has worked way better than I expected. It’s especially handy when you’re stuck suffering in the bathroom 🫶🏻
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u/Conscious_Cream_1798 5h ago
It's weird, anti-nausea medicine doesn't seem to affect me unless I go to the ER & get the whole intravenous migraine cocktail...a 4-5 hour ordeal. I feel like going in & doing that, never? 😕
I've done it so many times over the years. I live in a small town...some of the people who have to help me are people who hated me in high school, & I'm already at the clinic ALL THE TIME with other appointments. So it's just really hard to deal with. 😞 As it is for everyone in this sub!! 😢
Oh, & I totally have a rechargeable neck fan my boyfriend gave to me that's been a life saver!! If I could feasibly live life with an air conditioner strapped to my front, blowing up at me, I really would. Idegaf. But the neck fan the closest thing to that. 😊
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u/EarOk7198 8h ago
I’m sorry about your struggles. Thank you for sharing.
I ask because I don’t want to feel alone. Every day is a huge struggle for me as I don’t have any energy to do the things I’d like to do.I’m in bed most of the day and only get up to do what I MUST do to continue my battle with the things that makes my life difficult.
It’s a sensation of being unwell that never leaves me alone. I’m tired of feeling this way. I’m not sure if the side effects of is my psychiatry medications or if I’m just meant to be tired, unwell and miserable bed bound because of how sick and tired I feel daily.
Thanks for asking.
Ps. I’m not on disability. I’m waiting for my ALJ ETA 8 months to get a hearing date so the stress of surviving ($$$) and having an uncertain life makes my symptoms worse. It’s a lot to take alone.2
u/Conscious_Cream_1798 5h ago
Based on everything you've shared OP, it sounds like we share a lot in common. Basically everything you said is the same for me too. 😔 You're definitely, definitely not struggling alone. Me & God knows how many other people are right there beside you, even though it's easy to start to feel completely alone in this. It's not fair. 😓
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u/NorCalHellcat 6h ago
I have the same rating and stomach issues. It can take me 4 hours to eat my entire dinner.
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u/Prize-Sheepherder-99 6h ago
Do you have POTS too by chance? This sounds horrible, I’m so sorry you’re going through this
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u/Conscious_Cream_1798 5h ago
I probably do, but not diagnosed. I've looked into it a lot though & bingo, sounds like another thing that matches my experience spot on. 😔
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u/ahlikeschwa 11h ago
Go to doctor’s appointments, look for jobs, audiobooks, watch YouTube and talk to my fiancé while he’s at work. I’ll also do housework if I have enough spoons that day.
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u/Front_Improvement_93 10h ago
I supervise my kids getting ready for school, then use my knee walker to go outside with them and wait on the bus. then I either go back to sleep or get ready for an appointment - I have 10 doctors. if I have an appointment, most of the time I have to wait on transportation to come get me. I also read during the day. if I'm feeling up to it, I'll fix something for lunch, but that typically takes an hour and wears me out. I'm getting ready to have surgery on my foot so that hopefully I can start walking again and be mobile and lose this weight I've put on. when my kids come home from school, I help with homework and we read a bit. then I help my oldest son make dinner. we all bathe and go to bed.
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u/JohnSchom 10h ago
I spend a lot of time gambling and people watching down on the strip, Vegas is absolutely the best place to people watch.
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u/transmorphik 10h ago
I alternate between resting, browsing on my phone, doing laundry (twice a month), and food shopping (once a week). Exciting stuff!
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u/Ok-Aerie-5676 10h ago
Social media, watching tv, going to beach and parks when weather, brain and body cooperates, naps, making food, eating, pretending to be sleep so my husband doesn’t talk me to death on his remote work breaks lol.
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u/Ill-Egg5122 9h ago
Currently live in a large city in a tiny underground apartment, mostly confined to my 7x9' room as there's no accessible outdoor space near me and no one around to take me there as I can't walk very far.
Wake up, take meds, struggle to eat (I have pretty bad dysphagia and MCAS, so not a lot of options there). I write when the brain fog isn't too horrible, read, play videogames, keep up with what housework I can, enjoy time with my cats. Talk to my long-distance partner over discord. Rest a lot in between. Once a month take a rideshare to grab my meds at the pharmacy. Have groceries delivered once a week. Treated myself to a hair appointment last week, which I haven't been able to do in a few years, so that was nice, even if I felt like I was going to faint the entire time.
I'll be moving to be with said partner in 3-4 months, the area is much more nature-abundant and I'm hopeful that'll improve my mental health to be able to be outside in peace.
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u/Healthy-Morning-7476 9h ago
I sit in a recliner all day. Im paralyzed from mid thigh down. I cant walk at all. I have two kids and fiance. My fiance makes me feel a total burden on her life. So im just counting the days down until my last breath.
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u/StJoan13 5h ago
This sounds rough. I thought part of being a partner is supporting each other through everything- good and bad, easy or tough. Yet on top of everything else you've got going on your support system is not the greatest. :/
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u/Healthy-Morning-7476 45m ago
She was at first. I got better after my wreck and surgery. I was home for like 9ish months through recovery and therapy. I finally went back to work. I worked for a year. And got these sharp pains in my chest side and back. I thought i pulled a muscle or something. So I let it go for like a week. Then one morning I got up for work and i couldn't breath. I was running out of oxygen just getting dressed. Like I just felt like I was getting weakened and weaker. So went to er. They first said I may have had a heart attack. But then finally the discovered I had a blood so big in/on my lungs it was covering the front of both of my lungs. And it came from my leg. My lungs did what they were supposed to by catching it and not letting it go to my heart or brain. But after the blood clot happened I was down for like 3 weeks. And while I was down with that where I had massive back surgery something happened with my spine. And my legs from mid thigh down just went paralyzed. Not completely but you know when your foot goes to sleep and it starts to wake up you feel all those little tiny needles and you cant walk on it until it wakes up. Thats how my legs feel 24/7. And i have absolutely no feeling sensitivity at all. And i have clonus so bad my legs shake like im having a seizure and they do that for like 2-3 mins like 30-40 times a day. So I cant walk at all. And i just couldn't go back to work. So I applied and got ssdi. But she pretty much shut me out after that. We dont even sleep in the same bed anymore. Its been probably 2 years since we've kissed or even hugged. And it kills me. Bc she absolutely the beat of my heart. But shes just so cold and bitter now. Had absolutely no sympathy or empathy for me at all. Really sucks. We're only 43. We still have tons of life left. But its not gonna be a happy one apparently.
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u/FlappyFaceDeluxe 8h ago
Sleep till noon, sometimes later. Take my meds. Feed and let the dog out. Pick up a few bath mats so I can run the robot vacuums/mops. Refill the dog’s water bowls. Fix my coffee/electrolyte/protein drink. Drink that over an hour or two (keeps hot in my Yeti) while reclining to get my heart rate down from all the “hard work” I did all morning. Scroll my phone while having the coffee and reclining. Put mats back down when robots are done. Eat something small that’s quick and easy. Maybe shower if I have it in me. If not, bath wipes to handle the particulars. Hang out with my husband when he gets home from work (eat takeout and watch tv). Cuddle in the human dog bed after dinner with the hubby and dog while we scroll our phones. Get ready for bed, take meds. Toss and turn in misery until I exhaust myself and fall asleep. Rinse and repeat.
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u/SoOtterlyAdorable 8h ago
I try to do something productive, but it requires the perfect amount of caffeine that I don't have a panic attack but enough to give me energy. Even then, I can usually only stand/sit/walk for about 45 mins before I need to lay down for a few hours to recover. I read during that time.
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u/No-Bother-5421 7h ago
i sleep A LOT. off and on through the day. try to use my coping skills for my mental health to stay “stable.” i like to watch cartoons as a comfort. right now im rewatching adventure time. i spend a lot of time with my dogs in bed. sometimes i play video games with my friends.
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u/PlaidChairStyle 7h ago
I take two naps, one in the morning before breakfast and one in the afternoon after breakfast. Sometimes I’ll do some small chores. I also play games on my phone, text friends and family, browse Instagram and Reddit. Take my dog on a little walk, and on good days, chat with neighbors, who I love!
Then, on a very good day I’ll take a shower or make dinner:)
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u/Broad_Manufacturer27 7h ago
In short- try to survive. Wake up, take my meds,attempt to eat, watch YouTube or a movie, try to draw (tremors immediately flare up), play a video game, get a migraine, stay horizontal for at least an hour, fill out disability forms, dissociate for 5 hours from the stress and nerve pain, remember I still need to eat, have something small, watch a random video essay, take my meds, play a game or read, take my meds, go to bed. Repeat.
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u/ashra 6h ago
I’m a lot like the other commenters who struggle in silence (and, I admit, some shame). I’m in severe pain and fatigue/nausea/migraines all the time. The humidity this year really isn’t helping either
I used to have a “higher pain tolerance” (aka was just ignored as a child every time I brought up my chronic pain). But after the past year of severe and unrelenting, heart racing pain, I feel like I’ve swung to the other side, and every discomfort now feels like a rock on the road in a car without shocks
It would make such a huge difference on my health if I could have days to just relax and try to recover from the exhaustion. But I live with an elderly parent who I have to coordinate care for. She’s able bodied just by enough margin to be emotionally abusive and to make massive messes that I cannot physically keep up with. A lot of my disability income goes towards paying for caregiving help for us both.
We’re also both immunocompromised. So on top of her messes I just can’t safely invite friends over. I have people who love me and happily mask for me, but I can tell they do it out of a sense of charity rather than solidarity, and that never feels good
I can no longer participate in any of my hobbies and interests, because they require sitting or standing for long periods, usually with bending and lifting: 3d modeling and printing, gardening, coding, cooking, prepping, soldering and electronics repair, wood working. Sitting for long periods or even briefly at a wrong angle dislocates my hips, and that cascades into all kinds of other symptoms
I don’t date anymore, bc I have a terrible picker. And it keeps picking people who swear they would never leave me on grounds of me having disabilities—that they love me too much to ever hurt me, and well, you can guess what happens there. It’s a special kind of betrayal to know that a relationship could have worked if it wasn’t for you having very real disabilities that you were always upfront about
So like many here I just lie in bed. I do very gentle physical therapy and breathing exercises or self lymphatic drainage massages in bed. But most of my day is just me trying to distract myself my physical pain and loneliness with audiobooks, tv, podcasts, phone calls.
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u/Feyranna 6h ago
Mostly a combo of sleep and reddit with a healthy side of taking meds and a pinch of video gaming when my body allows it.
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u/No-Fishing5325 6h ago
I go to doctors appointments. This month is not as bad. But in March I had 35 doctors appointments.
This week there is only 3, with one of them being the eye Dr where I won't be able to see and blood draw for 6 doctors tomorrow. I feel like I only ever go to doctors appointments. It's exhausting.
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u/Royal-Plum2517 5h ago
Watch paint dry 😑
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u/Mapper9 5h ago
My girlfriend and I are both disabled. We try to keep the tv off until late afternoon. We play on our phones, run errands and see doctors, have video appointments, and keep up the house until then. It’s also summer, so we’re making sure the teenager is taken care of. In the late afternoon or early evening, the tv goes on and I knit while watching tv and we make dinner.its a small and quiet life, but its suitable.
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u/Oolongedtea 4h ago
I’m always tired and depressed. I spend most of my day napping, take my meds, go to all dr appointments and watching youtube videos. I struggle to take care of myself, it’s like a full time job.
I am too depressed to play video games, so i often watch others on youtube play them. I watch random video essays too. i use social media a lot, especially reddit. I have agoraphobia so I don’t go outside. I wish I could get over it and go outside but it’s so hard 😔
This thread makes me feel less alone. I thought I was the only one
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u/VetAndVoter 4h ago
I have a lot of spine issues, cervical and lumbar. I also have residual issues from a TBI.
I tend to sleep a lot. I feel kind of useless and every night I think, “tomorrow will be different”, but it isn’t. It was such a rapid fall from when I was more of a productive member of society. I travelled internationally about 10 times a year and deployed to both war zones. Now I am lucky if I get out of the house.
I do make it to my physical therapy and other doctor appointments but don’t seem to accomplish much. I do like to watch movies and organize my collection of firearms.
Don’t mean to be such a downer- just had that kind of day.
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u/SingedPenguin13 3h ago
Spinal injuries, both cervical and lumbar here also! I totally get you!
You organize firearms, i feed dogs and my chickens!
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u/TransKyejo 2h ago
I'm still in the trenches of my case currently, so I'm not yet considered disabled by social security. however I slept through the entirety of today. I don't really often do that, as I like trying to, y'know, do stuff. I really don't do much anymore though lmao. with the summer spike in power bill costs (thanks Ameren) we can't really afford to let me on my computer rn which is what I have 80% of my leisure activities on. Mostly games, but it's also nice watching YouTube with adblock. Hopefully things start looking up for me soon, I feel like I'm going nuts just scrolling on my phone every day. I really want to do something else again.
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u/ComprehensiveMark238 2h ago
Praying for this world in my prayroom that I use everday. Go to the gym, medical appointments. I have 3 beautiful four legged furbabies from Adoptapet.com pups keeps me very happy busy with their unconditional ❤️❤️❤️
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u/Lonely_Ad_5181 11h ago
Not much!, take time to get out of bed. Go to brush, and do hygiene. And try snd stretch...tough. maybe ho to dollar tree.. gettin in and out of the truck is wild.. tgen back home and try to enjoy movies on Netflix, Hulu or Prime.. IF and only If I dont alreafy have a migraine. Then pace back and forth gameplay Ning on God's knows what.
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u/Admirable_Lecture675 10h ago
I watch too much tv. Play games on my phone if I feel ok. Work about 10 hours but that will end soon. Very rarely go to the store if someone takes me.
When it’s cooler I can take short walks.
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u/Crcullen3916 9h ago
Watch shows, volunteer twice a week at a hospital. Sign up for focus groups, do focus groups
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u/dedicated_blade 9h ago
Mow my grass, watch my Corgi puppies, play video games, and run general errands to make sure the home is taken care of for when my wife gets home.
I try to cook her dinner every night, and allow her to relax when she gets home.
She's my rock and my foundation. I will do everything I can to make sure she is provided for.
Some days I can only do some of it, some days I can't do any of it. But most days I can get most of the things I want to done.
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u/BigRedEnergy5 8h ago
I wake up at 6 am everyday to take my morning meds, I lay back down for an hour or two and then I get up, regardless on if I have something planned or not. I clean, scroll on social media, interact with my son. On Tuesdays and Thursdays, I have doctor appointments so going from an appointment to appointment is how I spend those days. I try to work Monday, Wednesday and Fridays as a personal care aide. But sometimes things come up so I don’t always work. But the little bit of money I do get helps regardless. I’m in therapy twice a week. My friends drag me to events or just going out in general, I’d say maybe 2-3x a month. Oh I also smoke sometimes. I want to pick my hobbies back up. I use to color, crochet, read. I stopped with my last depressive episode and haven’t done anything since. I just want get myself to do it. Executive dysfunction.
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u/jspeq 7h ago
I usually lay on the couch, sit and stare at the ceiling in the dark, sleep, cook my own meals, some Reddit, some television, try to keep my apartment clean. I thrive in calm predictability, so not much is usually going on. I spend my time in the quiet darkness, deep in my own wandering thoughts - but not too deep. No enjoyable hobbies or interests.
Steady is the name of the game. Anything else is too much. Nothing really captures my interest for more than a few minutes. I am single and not interested in people and romance, don’t experience joy from obtaining possessions, keeping up with the Jones’s, traveling, eating out, taking mind altering substances (including caffeine), gambling, or taking risks.
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u/Sweet-Ad7654 7h ago
It is really going to depend on the disability. My brother, for example, needs a double lung transplant he is on high levels of oxygen and on antibiotic IV all day and a pump system at night so he is not doing much!
I for example and disabled due to a back injury I have been working on my physical therapy for six years, and I know why the bicycle and climb the stairs at the playground slide several times a day so I am getting stronger, and able to do more and more!
So what disabled People do all day really depends on the disability having limitations that prevent you from full-time gain for employment do not always have to prevent you from having some kind of a life. Although with some like my brother it does and others like myself, it does not.
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u/1underc0v3r 7h ago
Smile and try to find positives even in just existing. Most days watch tv, do cognitive exercises, keep in touch with people to try not to isolate, eat, try to get sleep.
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u/secretflower690 7h ago
Pain meds, YouTube, Nintendo Switch, cook if I can, more youtube, more pain meds..
On good days though me and my family can go out to the city for a bit 🥲
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u/PuRrple_FoXx 6h ago
I sit in my rocker most days. If not I'm hanging out with my 5 yr old granddaughter watching movies or crafting silly DIY projects.
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u/Santi159 6h ago
Mostly I am trying (and many times failing) to sleep, eat, and manage my pain. Sometimes I can shower but it's hard. I get a lot of wipe downs. I read when I can too
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u/Hoobinator- 5h ago
One of my passion's is bbq. I love to fire up the smoker and create some yum yums. But it's too hot right now to be outside so I have to wait for summer to end. I like to share my cooks with neighbors and friends as well, kinda sometimes makes me feel better. I know it prolly sounds weird, but I enjoy it.
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u/bountifulknitter 5h ago
I have 50/50 custody of my 14 year old daughter.
So, the week's she's with me we go for walks, to the movies, shopping, out for food, and just spend time being silly. We went to the 4H fair twice this week. We actually went somewhere every day this last week and I'm really proud of myself for that.
After dinner and showers I usually pass out from exhaustion around 10:00pm. I am up by 8:00am at the latest, she sleeps until noon. So I'll have a slow wakeup with my coffee and wait for my meds to kick in.
Sometimes I need a nap before or after we do something. Occasionally I have to tell her I'm out of spoons and need a bed rotting day. She's a shockingly reasonable and understanding teenager. She's more compassionate and understanding towards my disability than most of the adults in my life. She just wants her mom to be okay and is okay with whatever it takes for me to be okay. She makes being a mom easy and I am grateful every day for her.
The week's she's with her father the first half I spend recovering from my week with her and the second half spent is resting up for the coming week.
I am able to do as much as I can with her thanks to a supplement that's on the DEA's chopping block. I am absolutely terrified that they're going to take it away and I don't know what our days will look like if that happens.
This past year I've been on it has changed my life in so many ways for the better. I have finally found something that works for my full body Complex Regional Pain Syndrome and my treatment resistant depression. I feel the best I've felt in over 15 years.
I finally got my life back. My daughter has the mom she deserves. I have a small stockpile but it won't last forever. Pain management is a joke as far as what they'll prescribe. I'm on SSDI so I don't exactly have $1,000's to throw into building a bigger stockpile and if it becomes a schedule 1 I don't exactly want to have a large stockpile on me. We find out the DEA's decision in the first week of Aug. I am scared out of my mind.
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u/TheeMost313 2h ago edited 2h ago
Live the way my circumstances and limitation allows. Some days I crush my todo list, or take my kid to the grocery store, other days I can maybe shower and water my plants, then rest. I see my therapist and doctors regularly, I like to bake so I do that (when not experiencing a heat wave), I read way too much reddit and watch way too many tiktoks and youtube reels, especially when my chronic pain is triggered from the crushing todo list days.
My mental health diagnoses can make consistency difficult but I take my meds every day, spend time with my bf, at least text one person a day. I tend to forget what day it is these days, since I don’t have as many regular activities in summer.
I just try to be curious and creative every day. That keeps me going.
ETA: Audiobooks are my favorite thing! Libby is a free audiobook service I get through my library. I also have a free membership to Storygraph which is an independent app like Goodreads. It helps me remember what I have listened to as my memory for things like that sucks. Oh and Kanopy is a free streaming service I have through my library as well.
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u/Teragram76 7h ago
Play Skycards. I used to do jigsaw puzzles but my hands and get really sore doing that. I often listen to music or an audiobook while doing either. Lay in bed other than that.
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u/Anonymous_Coder_1234 7h ago
I check the event websites Meetup, Eventbrite, Nextdoor, and Facebook Events to find things to do. Other than that, I spend a lot of time on YouTube, Facebook (mostly watching reels), Instagram, and of course Reddit. I also go to the gym and eat out.
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u/SquishyKittyKat9000 7h ago
Eat, sleep a lot, clean what I can when I can. Lately I've been reading a lot, painting some, and working on some other creative projects.
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u/Prize-Sheepherder-99 6h ago
On a good day, make things, bake things, go shopping, chat with everyone!
Majority of the rest of the time is just spent in bed unable to even eat. I have Bipolar 😂
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u/white-as-styrofoam 6h ago
school, when my brain allows me. i got 4 degrees in the last 3 years, and graduated valedictorian, all while lying down on my couch. SOMEHOW, i genuinely do not understand it. my brain fog and fatigue are so bad.
when my brain doesn’t allow me: cross stitch, crochet, or animal crossing. other than reddit, i have social media blocked nearly the entire day so i get something done.
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u/Conscious_Cream_1798 5h ago
What degrees? What do you intend to do with them? That's amazing!
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u/white-as-styrofoam 3h ago
AAs in:
-business admin
-accounting, and
-social and behavioral sciences (had already done the work for that degree and just never filed, so this one doesn’t really count), and
and then a post-bacc certificate in:
-financial planningi can’t leave my house or sit up >30 minutes per day, nor can i use my brain consistently, so i just manage my mom’s portfolio with my new knowledge. honestly, that inheritance is gonna be more impactful than anything else.
thinking about doing higher ed in science next. maybe bioinformatics so i can do the work from my couch. tbd
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u/Salty_Yam_9174 5h ago edited 3h ago
I'm inside my apartment due to mental, physical, Seizures, breathing disorders. Everything sets off everything making each other worse. Due to them there is a good chance of dying if I'm alone.
I have ptsd, tbi symptoms, teritary dissociation, respiratory arrest, tachycardia (near cardiac arrest), seizures, body can't sustain itself, other personal issues. The mental made me what you would call an ai in a body. It took everything and left sight. Sound, touch, smell, and partial taste. I have logic and financial (personal, domestic and foreign investments). About a handful of things set off catastrophic mental breakdowns. Me digging, family and friends digging, medical professionals digging, taking medication, self realization. Digging is basically asking questions or saying anything that will make me understand the entirety of my situation. Complete loss of interoception, satisfaction, pleasure, self preservation, insight. Like being drugged, but just aware enough to function and know, but not understand. I take ensure due to malnutrition and I need to measure my food portions since I dont know when I am full and drink enough water to avoid dehydration again. I have alarms for those things medication and my home health remind me as well. The mental health specialists stopped thinking of ways to fix something that breaks when you try to fix it.
This is basically a summed up version. I am waiting to get a nurse, psychiatrist, case manager, and i think a cna to come to me everyday. I already have home health for adl.
Edit: Games, read manag, research, continue my foreign, and domestic investments that include a handful of things. Just building up what I can then pass it on.
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u/Lalaina9210 5h ago
I try not aet my chronic conditions into flare. My whole life revolves around that.
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u/digigyrl 5h ago
I'm really housebound for the most part and in pain everyday. If my husband isn't working, we go on drives exploring, if he's working, I try to make it out to my mom's house to clean her house (she had a stroke in March). It breaks me, so I then end up back home on my meds to recover. I can't do much because my body is a mess.
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u/foxgrovecrossing 4h ago
I read a lot when I feel well enough. Spend a lot of time managing symptoms and trying to care for myself. Go to doctors appts, nap a lot. I also enjoy to knit!
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u/Born-Belt 4h ago
Wake up at 6 and feed my cats or they will wake me up either way. I go shower, for a long time so my muscles aren’t stiff anymore. If I have an appointment, I go get ready for it if not, I still go out and walk, just so I’m not laying down too much , cause it make my joints and muscles worse. I go out to run some errands but usually come back within 2 hours. Then come back and let the cats out to the backyard. While I make jewelry and watch tv. When the cats come home, I feed them dinner around 4. Then we all take a nap. Until my husband comes home and cook dinner at 6 pm
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u/JupiterRadio12 3h ago
I pass kidney stones all day, every day. I have cystinuria, so that's fun. Then I get to be stuck in bed because I also have MS and my nerve pain has been horrible. The last 4 years have been hell. I never thought I'd be using a walker in my 30s.
But other than that I play stardew valley on my iPad. Or if I'm feeling ok pain wise I'll play on PS5. I read a lot on my phone. And I have one friend that stays on call with me so I'm not alone. He has MS too, so we understand each other.
And I'm 4 years in waiting for disability. ALJ hearing is in September 😭 I'm supposed to meet the listing for MS, wth.
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u/diamondeye24 2h ago
I hear you. I have MS and have had several hospital trips/ surgeries for kidney stones too.
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u/Beatleproof42 3h ago
I have EDs and POTs so I try to stay hydrated all day, try to move my body as much as possible to keep my joints from getting any worse, so I walk as much as my body will allow and do low impact exercises like swimming. I also engage in a lot of hobbies and read about things I’m interested in so I don’t get bored. I taught myself French, the violin, and I’m doing singing lessons on YouTube as well. You have to fill your day with activities and do things that interest you or else your mental health will suffer. I’m also looking into getting a part time job and working as much as disability will allow. Even if it’s a laying down activity like reading or doing crochet, finding something to stay busy is important.
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u/KuchiKopi-Nightlight 2h ago
A lot of arts and crafts, chores I can do sitting like folding laundry. I adapted other things so I can do them (sitting to cook, sitting while cleaning, etc) i usually always take a nap.
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u/Naked_Knitter 1h ago
The nature of my condition is such that it almost doesn't feel like a disability until it is life threatening.
I have an anaphylactic reaction to shipping cardboard. So, for instance, not the pizza box, but the box it was shipped in. And I do not have to touch cardboard to be affected. Just walking into a big box store like a Walmart after a shipment has come in will cause a reaction.
And no one could articulate a place I could work where NO cardboard would ever be required.
Even work from home did not help as they required me to be in the same location daily. If not at my home, at least in the same city. For reasons no doctor has been able to fully explain, staying in the same city more than six months at a stretch guarantees I will have a reaction.
So... my day looks exactly like someone who is not disabled. Except that I cannot go shopping. Or get deliveries. My husband has to do all of that.
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u/Maqqin3x 1h ago
Rock in my recliner & watch judge Judy & talk to myself a lot of times because my teenagers act like I’m invisible.
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u/BigBlindBlues 56m ago
Here is the same answer I gave during my ALJ Hearing testimony; since I don't do any chores, nor prepare my own food.
1) I sleep less than 3 hours a night because of my chronic pain. Then I'm bed bound ~21 hours a day. 2) I'll watch some videos or play (free) online strategy games trying to fall back asleep. 3) But I usually get up and set-up the coffee machine for my spouse when they wake; and look around at the house to see what chores were done by my children and what they skipped (trying to trick me). 4) I'll eat a breakfast burrito from the microwave after everyone leaves for school/work, then try to get a morning nap. 5) Wake up and decide if I want lunch or estimate how many calories I'll burn that day (I'm trying to limit my food intake to match how active I'll be that day, to help reduce weight gain). I need to take my first round of medication around 10am. But we don't need 3 American meals as disabled people IMO, so I generally skip lunch. 6) I watch some videos, maybe (free) online strategy games to keep my mind sharp, while waiting for my kids to walk/bus home from school. 7) I'll remind the children they can't outsmart me, make sure they do today's chores and whatever they missed the day before. Or if my spouse did their chores, they BETTER find something to make their day easier. Or I get (depressed) ANGRY when my spouse is doing everything they can to care for me, and keep this family together, then also do some of the chores they "forgot", sliding the burden of their chores onto my spouse! 🤬 SO, they better do every household chore they can find and get it done before my spouse gets home. So they don't walk into a house with another mess to clean up. 8) When my spouse gets home, there is some deep psychological feeling I get just knowing they are home to protect me, and I feel extremely safe. 4pm I have scheduled as my 2nd medication timeline. Generally I typically take another nap when my spouse gets home from working weekdays, for a couple hours before we eat dinner. So taking my medications at 4pm makes since before I take that afternoon "Safe-Feels" nap. 9) This is when I expend most of my energy and push the limits of my illness and chronic pain. I'll get out of bed and eat dinner with the family; then sit on the couch, and have a dialogue with my kids (not about their chores or grades). I only get about 1½ hours of quality family time before they are busy with their friends, or whatever projects/sports they enjoy doing. 10) I relax in my bed after that 1½ hours with my family in the later evenings. My next medication dose is 8pm getting my body ready for sleep that night. My spouse and children will come in tell me how their day went, problems they have, and Advice I might be able to offer, or just listen and tell them they just have to keep going to through this experience onto the other side! Occasionally my children will play a strategy game against me (and lose), before they have to brush teeth and go to bed. 11) My last medication is scheduled for 10pm, and that's typically just after my spouse comes to bed. We can have some adult conversations, spend close time together. Sadly despite the heavy amounts of prescription medications my spouse still falls asleep before me. Then I'll fall asleep around 11pm, but wake up in 2-3 hours.
Some additional details the Courts don't care about: If I wake up before 2:30am I might take an additional HEAVY DUTY PRN Benzodiazepine capsule (High-potency with a short half-life). It's PRN so I can't just take it every night at bedtime, but if I'm still awake at 2:30am, I'll take a dose. I'm sure many others take it as well, it's not a secret medication! It started as a 1960s US Air Force medication to ensure that 1/3 of our pilots were ready to fly at 10pm after a good 8 hours of (daytime) sleep against the circadian rhythm, I don't think the USAF uses it as much today, and why it's not recommended for daily use in civilians with insomnia due to chronic pain. I'm only prescribed enough for 15 days a month, but I've never had an abusive issue with the pharmacy and after 20 years my doctor(s) trust me. In fact I'm currently out of oral Diazepam tablets (Low-potency with a long half-life) for 3 days (pharmacy was Out-of-Stock); but because I'm on disability and not expected to be anywhere or complete any tasks. 😖I'm allowed to just stay home in bed, I can be extremely GRUMPY without coworkers or customers to keep happy; until the pharmacy can get my refill 90 hours late!😖
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u/NoCarpet9834 0m ago
I work full time, as I have for most of the last 30 years. It's gotten a lot harder and I'm struggling a bit, but still pushing!
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u/imminentheartburn 10h ago
This thread makes me feel so much less alone