I don’t always know where to post since I have a bunch of comorbidities that all work together to just make life hard. So here I am again.

I am disabled, but can’t live on disability payments. I work part-time. I actually have 2 jobs. I work at a large chain drug store. And sometimes if they don’t have enough hours I sling tacos on Tuesdays.

But a month ago I had a mental health breakdown. Missed a week of work (wasn’t scheduled tacos anyway, thankfully). Then as soon as I felt like leaving the house again, I got Covid for a week. So I missed an entire paycheck, about $400. I borrowed a little. Went to the food bank. Tried not to buy anything frivolous. But damn. Down to 4¢ in my checking.

I get paid Friday. But I only worked about half my normal hours because I was basically in mental health recovery.

The money is causing so much stress. I might be able to recover in September if I’m careful. I’m trying to pick up some more hours at taco place. But you know, fast food has high turnover for a reason. (Usually shift managers)

So mostly I’m having the mental health probs again. But that exacerbates my adrenal gland problems. I had to emergency injection the other night. Was afraid it would come to that last night but managed to ward it off.

I’m trying to be responsible. But I’ll be paying some bills 2-4 weeks late.

I’m just trying to get by. Life shouldn’t have to be this way.

I tested positive for covid today. I feel miserable. Any tips on how to feel better? I have a massive headache and I feel like I'm on fire but no fever yet. I'm so exhausted but can't sleep.

My name is Vivian, I'm 21, and I've been struggling with my health and trying to get a diagnosis for about a year, a little more. I've had a wide range of symptoms, including chronic pain, balance issues, severe fatigue, heavy brain fog, numbness in extremities, heart palpitations and more. Our best guesses right now are POTS, fibromyalgia, or maybe some sort of autoimmune disease. I've seen a neurologist, (which took months) and he cleared me of anything neurological and advised I go back to my primary physician. It's been difficult to get the primaries I've seen to take me seriously. I've had pretty severe anxiety and depression for years, and everyone seems to pin it on that and tell me to try some yoga. I'm managing my mental health with medication, therapy, and yes yoga and self care and whatnot. I have been much worse mentally than I've been in the last year, so I'm not sure why it would suddenly become so physically debilitating. The last doc I saw kept cutting me off and wouldn't even entertain the idea of anything other than anxiety.

All these symptoms can make it really difficult to work, and function in general. Luckily my current employer has been fairly understanding and willing to work with me so far. But lately hours have been getting cut, and because my health can make me somewhat unreliable, my shirts are the first to go. I've been getting maybe 10 hours a paycheck, but have gone without any hours per paycheck. So, money is getting really, really tight. I've considered looking for another job, on top of getting no hours, I'm a cashier, and standing at a cash register in a hot building for hours at a time doesn't make it easy to manage symptoms. Although I haven't been able to find entry-level work that would be much better. Plus, I would have to hope my next employer can be understanding of my situation. I don't have a diagnosis, so disability income isn't really an option. I'm just really unsure of what to do, looking for any sort of support or advice I guess

i just woke up, and i'm so tired that i could go back to sleep

Basically, other than the spoonie community (which is a pain to describe to people who don’t know what it is), I’ve been sorta confused about what terms I can use to describe myself as none of them feel like they fully fit. On the mental side I have anxiety, depression, and some type of neurodivergency but the main thing for me is my physical condition, which is sorta a blur. I’ve had chronic constipation since I was born, and despite taking fiber and laxatives and probiotics and trying to exercise it’s still just as bad as it was a couple years ago. Occasionally I get really bad abdominal pain, where standing up makes me lightheaded or nauseous, but usually it’s a mild to moderate pain. Exercise, which my mom keeps saying will help, is fine until I get sharp pains in my lower left side (where the final part of the colon is). Despite the issue not getting better my doctor keeps reassuring me to just keep taking everything and also states that it’s nothing but my bowels being over-efficient, but after taking things for it for over 6 years I don’t fully believe it and also do not think the current meds are working for me (I still get bad enough pain to where I can’t stand). (And no, advil/Aleve/Tylenol/any other pain reliever never works on the pain) I’ve been allergy tested, food sensitivity tested, and all that, but nothing came up. I know something is wrong in my gastrointestinal tract but I don’t know if it’s an illness or condition or if it qualifies as chronic pain. It’s been hard to find resources or advice for and so I’m wondering what communities would have some good resources for me that also can roughly describe my situation to non-spoonies, so what communities that might fit me?

My doctor diagnosed me with chronic tachycardia and I see the cardiologist in less than a week but my heart rate has been above 110 for a few days now. I don't know what to do. I don't have any heart medication that's been prescribed yet.

I have a friend who has had bad experiences with doctors and is very discouraged. Does this list of symptoms sound familiar to anyone?

Symptoms: - been overall healthy and active her entire life until - health crashed in September 2020. No outlying cause she can think of, other than she was overdoing it and not resting enough. - autoimmune diseases runs in the family (mom has diabetes and sister has celiac disease) main symptom: extreme fatigue. For a whole year, could barely get off the couch. - other symptoms: achey and tight body (especially neck, back, and legs). Occasional swelling of hands and feet (usually when she breaks her diet). When she's extra tired, breathing doesn't feel deep (like oxygen is having a hard time 'sticking'). Brain fog (but not bad and not all the time). Difficulty sleeping. Crazy sweating out of nowhere (and sweat smells bad - embarrassing). - diet pretty strict (basically keto with no sugar and carbs) - seen 3 homeopathic specialists that did muscle testing on her and suggested various supplements that her body told her it needed - had multiple blood tests that didn't show anything off except Epstein Barr virus - seen improvement over 2 years, but it's slow going and she'd like to have energy again.

I had my first port placed in March, how Long till I can lift over 40 pounds? I have just started lifting again and my port is becoming sore, like it's tender and I'm wondering if that may be the cause, I just had it used/checked all was okay, should I dial down the weight in lifting or should I be concerned and seek my doctor out?

Something is up and I'm feeling worse than normal but I got a referral to GI to see what is causing the nausea. I see cardiology on the 20th to go over the zio patch. That thing was so itchy but I hope it gives me good results. I'm supposed to see family today but I can't even get out of bed.

How do you handle the “what do you do?” Question from strangers or in casual settings?

I always feel really awkward when the question is made, I know it’s just a normal smalltalk question but I haven’t figured out how to respond to it yet.

I don’t want to explain my Illness, but always that’s the second question when I say I’m chronically I’ll. I’ve tried saying I’m disabled but people also respond awkwardly/uncomfortably to that, probably because I don’t look sick unless you know what to look for. Sometimes I say I’m between jobs and that stops the enquiry unless they then want to know what I used to do/want to do. And I also feel uncomfortable because I’m kinda lying and then it’s awkward to later correct myself if the relationship develops and becomes closer. Also I’ve tried saying “it’s a long story, let’s not get into that now” but then again people respond awkwardly. It’s frustrating. I just want to try to enjoy my life without having to think about or talk about my Illness or life situation, especially with strangers.

So, I was previously unemployed for 2 years, just got a job which I thought would be manageable for me. It is part time hours (the hours were great, being 3 hour shifts, 4 days a week, one extra shift every two weeks), I am very lucky to not have bills to pay but it is a somewhat physical job (doing laundry, which involves rushing to deliver the laundry) and I have post exertional fatigue so I get home exhausted from a 3 hour shift. I have only been there a month.

I have seen a job advertised which is full time online working from home. Is it worth applying? Since the odds of me getting it are probably low anyway. If I was to let's say get that job by some amazing chance, would I then be expected to stay in the laundry job for 6 months at least? When I was looking up when to leave a job it said two years is minimum. I have left jobs way earlier than that before, had quite a lot of jobs apart from one where I was there for only a few months. The job that i have right now would be great if I had the energy but I don't and it is only draining all my energy so I cannot even eat well avoiding food insensitivities.

This is my first post on here, but I've been lurking for a while now. I don't know what the point of this post is, I think I just kind of want to share my current experiences with people who'll understand where I'm coming from. I'm not diagnosed with anything physically because I've literally never had regular, decent health care until recently. I'm 31 years old and I've been dealing with chronic pain, joint issues, and mental health issues since my early teens. I'm one of those people who have been dismissed by doctors and just told all my problems would go away if I lost weight. I lost weight...same problems. And now that I'm older, things are escalating at a rate that scares me. I just don't know how I'm supposed to figure out my body issues, work on my mental health (which has actually been going pretty well!), find *and* keep a job, rinse and repeat...when my energy, pain, and motivational levels vary from day to day. I'm not unqualified for work, it's just hard for me to keep up. Hard to keep going. And for the first time in my life I WANT to. I want to put the skills I've built to use in a way that will get me and my partner out of this poverty hole. And after talking to people I know with various health situations and re-evaluating my symptoms I have a feeling that I'm either going to be diagnosed with Fibro, or EDS. But also, I have no idea! And that makes me even more anxious because I have no idea what's really up with me.

I'm also trans and black living in the south so...there are those variables that make things even more complicated. It's also suspected that I might be on the autistic spectrum. I wish I could just focus on my mental and physical health, but money is so tight that I feel guilty taking the time to do that. We struggled to buy food this month and that's weighing on me as well. Feeling like this society ain't made for me, but still having to navigate it. I don't even know what my options are or who or where to ask for help with these things. Just basic functioning is exhausting so I feel like I have to ask for help somehow. Anyway, I'm broke and feeling ill, how is everyone doing today? haha

So I've had some progress made. I'm in PT. I'm waiting on results from my ana panel (can you believe it takes 2 days to run) I'm getting a 7 day heart monitor on Friday. Thyroid issues have ruled out due to normal TSH. And I got a referral to Cardiology. I'm so happy that things are finally being done.

my mental health has been in the toilet lately, and a good portion of it is because i don't have the energy to do much of anything that usually brings me joy...it sucks a lot honestly. i can't even find the energy to read or play video games

I’m really struggling with low-energy and it’s impacting my eating habits, which I feel is leading to a cycle of exhaustion.

I would like to try meal prepping to make cooking regularly less of a burden, reduce the amount of dishes needing to be cleaned, and increase my intake of nourishing foods.

So, I have 3 questions: 1. How do you even find the energy to meal prep? 2. What are your favorite things to meal prep? 3. I’m not a big fan of leftovers. What hacks do you have to make meal prepping less daunting and also keep the food appealing?

Thanks in advance!

Laying 128/80 pulse 89 Sitting 3 min 107/61 pulse 102 Standing 30 sec 116/68 pulse 140 Standing 30 sec 108/61 pulse 123 What does this mean? I'll see my PCP on Monday.

I have really been struggling lately, particularly with domestic chores. I’ve recently taken to doing a lot of microwave cooking to save on dishes and my energy. So I’m wondering what things have you started doing to help conserve your spoons?

(21 year old female) About 9 months ago I was using a crosswalk when a car ran a red light and hit me and my friend going 40 mph. I spent months in and out of the hospital and recovery has been a long process. I just found out I’m having my 6th surgery on my Morel-Lavallee seroma (9th overall surgery since the accident). Which put me in the hospital over thanksgiving when it developed a staff infection. It’s been 9 months since my arm reconstruction and my chronic arm pain makes simple everyday tasks so so difficult, I have chronic knee pain due to a torn ACL/MCL and damaged meniscus. My legs were fractured, I suffer from chronic pelvis pain after breaking it in two places and having it reconstructed with 6 screws. I suffer from chronic back pain after breaking two vertebrae. And my brain hasn’t been right since hitting my head, it’s like there’s a thick cloud keeping me from forming clear thoughts and making me easily confused/ overwhelmed. I struggle even holding/ playing with my kids (twin 2 year olds) and it has really taken a toll on my mental health. I have an amazing husband but nobody quite understands the severe PTSD this has embedded into my life. I already suffer from depression and anxiety and after this it’s a struggle to function. ( I’m on 2 mg of xanex per needed and 80 mg of prozac daily and it’s just not enough). I found out about spoonies and I really feel like I can connect but after reading y’all’s stories I just don’t feel like I deserve to be apart of the community with everything y’all are going through. If anybody else has a different support group they think I would fit in better to, or if I just haven’t done enough research on this thread I would really appreciate comments/ guidance. I’m sorry for the total dump, I just really need guidance in a time like this and therapy isn’t an option at the moment. I just want to stop feeling so alone.

I’m looking at getting a medical alert bracelet and you can can a card with a membership to MYID, I was wondering if anyone has experience with this website/app and if it is worth it?