u/Competitive-Golf-979

▲ 9 r/cfs

Vaping has become one of the only reliefs/regulation for me (share thoughts plz)

I have CPTSD and with this disease and 5+ yrs of docs trying to rule out other shit despite my first doc diagnosing me... I have had suicidal thoughts constantly. Things are good shortly and I think I'm pacing well and then bam I'm in pem again or it's too late and the pem is awful bad bad. I'm 22 and mild. I'm trying and failing to maintain any sort of normalcy of society's expectations of my life with being so sick. For the last few days hitting a vape like 15x total in a day in the am, mid day, and pm combined has become a genuine relief and has helped almost completely stop my suicidal thoughts. Maybe it's the deep breathing. Maybe it's the flavor. Maybe it's the short term symptom relief that nicotine provides helps me feel less shitty while resting in the quiet dark. Thoughts? I know vaping will shorten my life and will probably lead to overall worse health later on. I don't want to live like this. I have had enough doctors say 'I don't know' that I have spent years in apathy for my future. Honestly if I got lung cancer I'd probably just find a way to quickly end my life like pills or something. I already want to die so often and regular coping skills require spoons almost always- "go for a walk, color, play guitar, listen to music, spend time with loved ones"

Please please please share your thoughts. I really don't think I'm addicted and I know I will be if I continue this. It's the only relief I've found that's consistent and reliable no matter if I'm in PEM or not. Long term it might worsen my symptoms... does this make it not worthwhile? It seems similar to the idea of giving up on things like running, walks, singing, etc because they cause pem. I've given up so much of my life to this disease without my consent. This is a choice I can make. A shitty idiot choice, but one that brings me great comfort. I don't have a caregiver and am in the process of applying for disability and food stamps. I'm realizing my life may need to just be put completely on hold because of this illness or whatever the doctors find (suspected narcolepsy and myastenia gravis but neither cause pem which is textbook exactly what I experience).

reddit.com
u/Competitive-Golf-979 — 6 hours ago

How can I help myself while in the process of diagnosis? I have cataplexy fo sho. What helps y'all? I know this is all over the sub but I am specifically wondering about when I don't have medical support yet. I used to use a forearm crutch for walking and I now am thinking maybe it is actually good to use it so I can walk/lean when I feel weak. Also I'm seeing a neurologist for generalized muscle weakness and other symptoms that are essentially narcolepsy and worse.

reddit.com
u/Competitive-Golf-979 — 16 days ago

Yay overnight and MSLT!

Update: I didn't sleep long enough to do the mslt and cried for hours overnight.... recorded and live with audio. Yay. I almost asked to leave early because I knew I'd failed but I decided to not check the time and close my eyes some more. I know many folks with narcolepsy fail the test in some way. My whole body was in so much pain from not having my regular 4 pillows to support my joints (I suspect arthritis or eds or smth)... it was honestly not a good time. But it's information. I took the initiative to ask my sleep doc over mychart if I should go ahead and schedule another test. I have cataplexy symptoms. Since I was a toddler I can remember falling asleep in random places. My sleep is not refreshing. I hallucinate when I'm fighting sleep. I don't know how much longer I can live like this. I don't know how to tell my docs this without ending up inpatient psych hold against my will. I also genuinely am at the end of my rope and in grad school trying to live with no job rn. Idk if I can even apply places because what if I can't stay awake and what if I don't fund treatment or diagnosis until after this coming fall semester. 🤮😭 ❤️

This shit is what I do best so hopefully they figure smth out. What pmo is that I had an overnight with no daytime naps three years ago.... they coulda figured this jazz out sooner probably 🫪 whatever. Shoutout to all y'all for sharing your experiences and advice because I know this is gonna be shitty when they wake me up in the day but I brought my earplugs and eye mask and some snacks.... and entertainment. ♥️ Hopefully I soon will become officially diagnosed with some bs. And then meds. 🤞

u/Competitive-Golf-979 — 17 days ago
▲ 9 r/cfs

Some prose I wrote after my boss brought up the importance of remembering names and stories in a review meeting.

I'm loosing myself

my dignity

my identity

my very concept of being

My memory fades like an ember on the edge of lit incense

Weakening is my grasp on the viscous marrow of life

It's thinning out

It's been six years of slowly losing myself. It's exponential lately... it feels. I have a sleep study with mslt tomorrow. The docs think maybe it's narcolepsy since I didn't see a neurologist before cfs diagnosis a few years ago. I'm in grad school. I want to keep the life I have but it seems to be slipping away faster than I can muster the courage to push myself forward. If it's really cfs the pushing will never be worth it.

reddit.com
u/Competitive-Golf-979 — 19 days ago

Some prose I wrote after my boss brought up the importance of remembering names and stories in a review meeting.

I'm loosing myself

my dignity

my identity

my very concept of being

My memory fades like an ember on the edge of lit incense

Weakening is my grasp on the viscous marrow of life

It's thinning out

It's been six years of slowly losing myself. It's exponential lately... it feels. I have a sleep study with mslt tomorrow. I'm in grad school. I want to keep the life I have but it seems to be slipping away faster than I can muster the courage to push myself forward.

reddit.com
u/Competitive-Golf-979 — 19 days ago