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soultired

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About soultired

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  • Gender
    Nonbinary
  • Location
    pennsylvania (USA)
  • Interests
    lately, not sure.

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  1. I miss going for walks. But with chronic illness (including some serious joint pain) and conditions being what they are, it's not possible anymore. I ride a bike at home, but it's not the same. Feel like i can't get outside of anything, and my mind just keeps going in circles. I can relate to other parents here feeling outmatched and some days like I just can't keep up anymore.
  2. i had to go cold off Cymbalta (the generic form) bc neither my former rheumy nor the pharmacist would help me taper (think too much bonuses/perks in it for them at the time). the silver-lining was that i discovered kratom and still take it to help manage severe anxiety and chronic pain. helps take the edge off severe depression also. some probably doubt my claims, but 1) i'm still alive and 2) they don't know what i'm like without the kratom (and they don't want to). i also used 5-htp when i was coming off Cymbalta .... took about a month to get through the mood swings and some awful stuff, but i figured if I could "beat Cymbalta", i could get through most things.
  3. i'm a mother of daughters. may i ask how old your daughter is? for the sake of privacy ..... not exact age. is she 17-21? over 25? over 30? etc. what age range is she in? when she has her anger outbursts, does she seem able to hear you? or does she seem completely out of her mind? sincere questions. how long has she been having these outburts? did something specific happen before her outbursts began? or was it gradual and has been building for a long time? sorry for so many questions .... just trying to get a feel for your situation. i'm no expert or doctor -- just a mother who has been through a lot. i am not blaming your daughter, or you, or anyone. it is clear that your daughter is suffering a lot, but i think she is having trouble expressing herself, what she is struggling with, feeling heard and understood, and that may be part of where her rage is coming from. i'm sure i am stating the obvious, and for that i apologize. my kids have gone through something similar with anger issues. but i don't want to assume anything with your daughter. i feel for you.
  4. i'm curious for an update on this med. i had been on Paxil years ago for panic and anxiety, but had to go off due to brain issues with it at the time. dr had to wean me off it twice due to complications. how are you getting on now?
  5. you're not being presumptuous at all ..... i'm honored and humbled by your comment. i often offend people unintentionally by the candor that you appreciate -- trouble is I have few filters. not sure if i mentioned this previously (brain fog), but being autistic, i tend to say what i think and feel without the "socially appropriate" filters that society expects normally adjusted people to censor themselves with. so my brain and my mouth lead me into some very awkward moments ..... lost friendships ..... and family misunderstandings ..... i gave up a while ago. the ones who know me and understand how i am (that i really and truly don't intend harm or insult), they stick with me, and sometimes give me space to sort things out. the rest who think i am a bitch and rude/ignorant af ...... well, they can stick it where the sun don't shine because they never will understand, because they never wanted to. and i'm too old and have been through too much to care whether they like me or not. my rant is not directed towards anyone here ..... just my life, and the people in my life who decided to judge me based only on their disappointment in me, and not who I truly am. but it all left its mark. also -- i fully believe that you understand this pain. you shared parts of your story with me -- very little (in my opinion) can stand up to the horror of what you've experienced. not that this is a journey of comparisons -- my point is that there is no worry of presumption on your part at all. my candor may not always be so welcome (i can be quite blunt and direct, without realizing it) ..... but i emphasize, again ...... i do not mean harm by it. i am what i am. i have very few filters, and this is also why i tend to isolate, as i get overwhelmed sometimes ..... nothing to block the noise and chaos out except silence and isolation.
  6. Hello MarkintheDark, your post hit me on a whole other level ..... took me way back to my early college years (1990-ish), when the HIV/AIDS crisis was first hitting the media and everyone was running scared on rumors and misinformation. Cripes, what a horrifying time that was. Not even was ..... there are still high risk groups now being ostracized and completely ignored because of race, sexual identity, and identity politics ..... our society is so sick and misinformed, more concerned about perceived morality of human life than about treating human beings and saving lives. sorry, my personal politics getting involved here, but medicine needs to be about saving lives and treating people, not deciding on religion or politics ...... i remember vividly .... AmFAR, the red ribbons, and the silence as the arts got hit, including many musicians, writers, and artists that I was close friends with back then. Their funerals ..... The silence that no one would talk about what was happening because everyone was afraid. Except those of us who were research nerds obsessed with science (still am). We are often better educated than the "professionals" who are treating us. I am soo soooo sorry that you have no support where you are. Sadly, family can be the worst sometimes. I honestly find more support around the world than I do in biological family. Not sure why that is? I've been trying very hard to forget about my extended family lately (just fights and problems, and nightmares) ..... you mentioned PTSD, that's a big source of mine there -- family history. Alcoholism in my family going way back. And yes, HIV and lupus, both being immune system diseases -- even working in opposite directions -- have so much in common. I even have people ask me if lupus is like HIV and I explain the subtle differences, even though in many ways it's similar effects. yet people are still clueless, "oh, it's only a small head cold, you'll be fine!" ..... that's why i had to fight the pharmacy yesterday to give me the pneumonia vaccine when they were questioning me about eligibility (I'm not 65, but I'm in two high risk groups). then three pages of questioning, verifying health status, meds, immunity ...... meanwhile they kept announcing that i had lupus while they were verifying my status .... thanks, ummmm, can you say HIPAA???? people have no idea what we live with. when we say we are tired and people say "take a nap", or i get that feeling when i know i'm going to crash or a flare is about to start, and someone says "take some Tylenol" ..... or "well, you look fine ....." then when i mention fibromyalgia in addition to lupus, that baffles them to shreds ..... people also believe that "most people with lupus live long and happy lives" with the right (drugs) treatments ..... because that's what the foundations and drug companies promote (to get money). correction -- people with lupus (and kids) are still dying of lupus complications regularly. it just doesn't sell medications or foundation fundraisers that well ....... your post brought back a lot of memories ..... you can vent to me whenever you want to. thank you for your post ..... and keep resisting, keep fighting.
  7. yes -- in my worst/darkest moments, it's my kids that have kept me anchored. lost my mother many years ago. i won't do the same to my kids, i've worked too hard to give them a better life than what i had.
  8. feeling empty, flat, lonely, grey, sad, frustrated, and tired of it all -- but wanting no one anywhere near me. i'm no good to anyone like this for a while. at the same time .... oddly feeling proud of myself? for still continuing to "show up" at this miserable chessboard called "life", every colorless day -- because i have responsibilities that won't get done (or done to my standards) unless i do them. irony -- i don't care about anything anymore, but i do care that i have responsibilities, and it will really upset me if i don't take care of the things i am responsible for. how that makes any sense, i don't know. i hate letting people down, but i hate feeling like a burden also. it's either i'm being a burden, or i'm breaking my promises. i can't do both at the same time. so i'd rather keep my promises, in spite of relentless brain fog, chronic exhaustion, and feeling beat up inside. idk?
  9. hi, i found this site while looking for some place that understands depression without sugar-coating it or pretending it's "the sniffles" that's gone in a few days. i've struggled with depression for most of my life. been through medications, tried therapy. i guess the therapy might have helped if my circumstances hadn't changed and/or insurance hadn't changed coverage (access). for the most part, eventually i muddled through and found a way to fight back. in recent years, i got sick and was diagnosed with fibromyalgia and lupus with inflammatory arthritis. the levels of fatigue and pain that have taken over my life have made a "normal" life nearly impossible. my formerly active life seems to be history, and everything has changed. most autoimmune diseases are invisible, so no one believes that you can look fine on the outside and be fighting to remain awake, or have pain shooting through your body, or unable to focus, or remember something you just studied, or that you can't be around people with a cold virus because it can turn into pneumonia for you. it's impossible to commit to events or activities because you'll feel okay one day -- the next you feel lousy (achy, tired, or some new weird symptom) and you have to cancel. slowly people stop talking to you, stop inviting you .... eventually you have no friends and no life. it doesn't win friends. it's isolating. how is anything worth this? I am not trying to compare myself to anyone. i am just tired of living this way, but i have no viable options. i have researched everything, and everyone i have asked for help or answers, has said no or turned me to someone else who said no or gave an answer that did not fit my situation. the past few months, i've been wondering why i am here. yes, i have family, but not in a way that still needs me. i work part-time online. but there really isn't much purpose for people like me online. my family is tolerating me but i think they are as tired of me being around as i am tired of living this way. i'd write more, but i am exhausted. i really wish i could sleep .... 5 hours but feel like i don't. doctor tells me to sleep at least 8 hours and i laugh. it is impossible. sorry for the whine, just at a low point (or i wouldn't be here) soultired
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