u/Jealous-Concert8456

Its so fucking uncomfortable i hate it so much

I am luckier than most, and I feel the need to start with that - I was able to get from bedbound to mild under the right care, and I can work again with very extensive accommodations. The kicker is I work in home health - Im the caregiver when working, and the one being cared for on my days off, but i find the trade-off worth it because 90% of my job is companionship (thank you management) and it brings me fulfillment.

Now that that has been acknowledged - to be severe/very severe is life threatening, and to be mild is still to be severely ill compared to the healthy population. Even at mild, you have to be so careful, because the nature of this illness means if you don't stay within your limits, your body will decrease them for you, and if you push too hard, you can go from mild to severe within weeks.

I feel like most of us are or were very ambitious people. I find that so sad. Im angry at the lack of funding for research on me/cfs and treatments. Im angry that so many of us have to navigate on our own. Im angry that most providers lack understanding and suggest the very things that will make us worse. Im angry that many of us wait years to decades for the correct diagnosis and that so much of the decline people with this illness experience is preventable.

Im angry that im 21 years old and a small fraction as functional as my healthy peers. Im angry that the financial demands of this world give me no choice but to barely survive. Im angry that even though most of my work only requires me to sit and talk with patients with a few brief changes in between and sometimes some light cleaning, that when im at home I can barely leave my bed most times and can't take care of myself. Im thankful I can occasionally see friends if we just hang out at their house or go out for coffee but am upset that I cant hike anymore and cant do group functions or be more fun. Im upset that I have to ask for help and need accomodations. Im scared of becoming severe again. Every time i go into PEM im scared it'll be the episode that does me in. Im scared that I wont be able to pursue my passions in the medical feild because I'll have to choose between work or school.

I feel very lucky to be able to do the things that I can, but im still grieving everything ive lost. The grief never goes away. The fear never goes away.

Title pretty much sums it up, I've had such a passion for writing, singing and music in general since I was a very little girl, I'm 21 now but hey, I dont think its too late to try, at least as a hobby. It'd be nice to start getting connections and make friends with people who are just as passionate about it as I am. Any advice is appreciated :)

Title pretty much sums it up, I've had such a passion for writing, singing and music in general since I was a very little girl, I'm 21 now but hey, I dont think its too late to try, at least as a hobby. It'd be nice to start getting connections and make friends with people who are just as passionate about it as I am. Any advice is appreciated :)

I love my hairdresser so much and I want that to be clear, but there have been a few times where ive gone in for a trim and a couple weeks later all my ends are split and I assume its from dull scissors. She was in a rush last time and cut my hair in a mildly concerning way, it still turned out good minus the splits😭 she cut 2 huge sections (split my hair in half, brought it forward and cut it at an angle to keep my length but fix up the layers) and that couldnt have helped. I invested in a pair of nice, sharp haircutting scissors for myself and some hairdressing combs so I can follow a really good tutorial I found on YouTube for diy long layers and im just gonna try and give myself a little trim instead of dusting because seriously just about every end is fraying where she cut it.

Despite all my efforts to curb it, I think it really comes down to hair type. I have ultra fine, but very dense hair, and its heavy, so even the most gentle hairstyles pull. I dont know what to do, I look like Einstein sometimes😂 has anyone else had this problem and found a solution? Thanks so much

Despite all my efforts to curb it, I think it really comes down to hair type. I have ultra fine, but very dense hair, and its heavy, so even the most gentle hairstyles pull. I dont know what to do, I look like Einstein sometimes😂 has anyone else had this problem and found a solution? Thanks so much

Super curious because ive gotten behind on individually trimming my split ends and they're driving me insane now, plus ive always found it quite tedious to get them one by one. Does anyone here use the machines that are for trimming split ends? Do you like it or hate it? I wouldnt want to damage my hair if its damaging but heck, if theres an easier way to go about keeping up with splits im am all for it

Nissan Versa Note 2014

Background context, my AC has been having issues with turning on for the last week and it gets worse every day. I took it to get looked at by a shop that offers free inspections, they just inspected the AC. I have a weird feeling about a few of the issues they said I had. I didn't notice any issues with the airflow when the AC was on and working before I took it in, but I am now, and they said the cabin air filter collapsed and the cover was missing.

I believe the filter collapsed because it looked pretty natural in the picture, but I dont believe the cover was missing. I had a full inspection done by my trusted shop in November when I bought the car and they would've noticed if it was missing, plus, I am only now experiencing issues with the power of the airflow AFTER taking it into this different shop.

Im unsure about the other things they said needed fixing - they told me that the hvac control head has a short which is what's causing my AC blower to have trouble turning on. That would make sense, but does it really need a full replacement? Does that sound right? I can hear the blower struggling when the AC does come on, I have to play with the fresh air door switch to get it on, and when that doesn't work, sometimes it'll switch on after ive been driving for a few minutes.

They also said that my compressor is still working but is very close to the end of its life and reccomended replacing that. I have no clue what the signs of that would be, if any, or if they are being honest, which is why I'm getting a second opinion. They said the high side reed valve is failing.

If it turns out that they lied or manufactured an issue or two themselves, what do I do? And how can I avoid those things in the future? What should I look out for?

Last February, not knowing I had me/cfs, I had my first long lasting, terrible crash that took me from what was probably mild/moderate to full blown severe within the span of weeks. We knew I had POTS and suspected (now diagnosed) hEDS at this point, but there were many more diagnosis to come in the future, including my me/cfs diagnosis.

I was so scared because I had no idea what the hell was happening to me, why I was so weak, what all these new symptoms were. I had no idea what was causing full blown paralysis episodes, why I would go long periods where I couldn't move even my fingers, couldn't handle light, couldn't think, couldn't talk. I went from working overtime to not working or leaving my bed for more than using the bathroom a few times a day, often with help, relying on my boyfriend and his mom for caretaking. This lasted months before things started to improve.

Without this sub and the insight/support of this community, I don't think I ever would have improved. After looking into my symptoms quite a bit after my doctor mentioned the resemblance of my symptoms to me/cfs or fibromyalgia, I came here looking for advice. Someone reccomended a documentary about me/cfs, and everything clicked for me. It made me feel so seen. I learned what pacing was and started implementing it. I finally understood what was happening to me and how I could attempt to manage it. If you had told me then that I would be back to mild/moderate now, I wouldnt have believed you and probably would have yelled at you, started crying, and told you you didnt understand how it felt to be as helpless as I was.

I got suuuper lucky with the medical provider my cardiologist referred me to in december, who is very experienced with all my conditions. At that point, pacing had helped me improve enough to move around a little more but I was still housebound and extremely limited, I still needed other people to bring food and water down to me because even walking up the stairs was too much for my body to handle. Between this sub and that provider, I have come to understand much more about this illness, how to treat it, how to cope with it, found a community that understands me, found out a plethora of other things wrong with me, treated those, played with me/cfs treatments, found an accommodating job, and overall have made so much progress.

I am so thankful to all of you. I'm so thankful that even if I am still only a fraction as able as my other peers in their 20s, im not confined to my bed or the house anymore. Im so thankful for my PA and my boyfriend and his family and my friends, and how understanding all of them are. Its super crappy being disabled, but when you've been bedbound and any small thing could paralyze your body and your mind, your entire outlook on life changes. Good health is a crown that the healthy wear and only the sick can see.

Considering getting one but I want to make sure its worth the investment first

To start with, out of all three I have to say i think I notice the most effect in a 24 hour day from dextromethorphan polistirex (5ml before bed), the most in a 6ish hour period from creatine hcl (I take twice a day, 1500mg morning and night) and the strongest, most immediate effects from oxygen therapy (20min sessions up to 3x a day on 5L, usually only use it when I am actively in PEM or can feel a big PEM episode coming on). Dextromethorphan I dont take daily but I do take it almost daily, I use it as a PEM buster so when I feel symptoms coming on or when I have a lot of activity coming up. Magic, I dont know what the science is behind it but it WORKS let me tell you. Creatine HCL I use on a regular schedule to extend my energy envelope as a whole which seems to be working. I said I would update yall so I wanted to give you guys that :) overall learning the PACE protocol and how it works for me specifically has drastically improved my symptoms and is what started my road to recovery. Im not in full remission and dont know if I will ever be, but with some serious accommodations I can work full time again and that alone is something to be extremely grateful for considering I was still bedbound less than a year ago. I hope all of you can see as much success in treatment as I have been lucky enough to. I also take naltrexone for me/cfs treatment and definitely feel the difference when I forget to refill. Finding out i have MCAS and treating that has also played a major role in my recovery. Best of luck to everyone❤️

I'll be moving to Renew on Temple apartments in early September but am torn on the parking situation, they charge 150 a month per parking space because their parking is so limited. I don't ever want to risk my car being towed, I rely on it for work, but I also have no clue where to begin looking for something like a parking garage or lot that is affordable and I can pay a monthly fee for so I can regularly have it there any time of the day or night. Any advice? Address is 239 E S Temple St, Salt Lake City, UT 84111

I'll be moving to Renew on Temple apartments in early September but am torn on the parking situation, they charge 150 a month per parking space because their parking is so limited. I don't ever want to risk my car being towed, I rely on it for work, but I also have no clue where to begin looking for something like a parking garage or lot that is affordable and I can pay a monthly fee for so I can regularly have it there any time of the day or night. Any advice? Address is 239 E S Temple St, Salt Lake City, UT 84111

Hi! I have some questions concerning what the social atmosphere is in various trades.

What are some that allow for fairly independent work, have good pay and advancement opportunities, and have entry level positions?

What are some that would be well suited to an introverted, mechanically skilled personality type?

What positions allow for travel/seasonal work?

What positions have the highest job security and demand?

Thank you!

Hi! I have some questions concerning what the social atmosphere is in various trades.

What are some that allow for fairly independent work, have good pay and advancement opportunities, and have entry level positions?

What are some that would be well suited to an introverted, mechanically skilled personality type?

What positions allow for travel/seasonal work?

What positions have the highest job security and demand?

Thank you!

Hi! Me and my boyfriend will be moving to downtown slc soon and he will need a job closer to home, and higher paying. Currently he is a barista but needs a somewhat higher paying job that will be compatible with his personality traits.

Some things about him -

Has difficulty with change, and is very introverted and shy so needs an environment that is welcoming, open but can also respect his personal space when he needs it.

He is amazing with computer science, is very artistic, very mechanically inclined and would do best with a job that allows him to work independently, or possibly with a very friendly team that understands his quirks and dry sense of humor.

He smokes so drug tests are kinda out of the question.

Anything 16+ an hour or better yet, a salary job, with opportunities for advancement and raises would be a good option, and something with no or minimal requirement for schooling, hes very smart but so much that school is super boring for him.

He'd love something that would allow for travel work when the time comes that we are ready to move around, we want to do van life at some point in our early 20s before we settle down.

I hope I can get some good responses to this, thank you so much for your help!