Where do I fit?
Hello all. My name is Yap bc I talk.... a lot.... like what I'm doing in this post. [This post is ≈ 12 paragraphs long. Sorry not sorry. I like to be thorough & understood.]
This is my first post. I am sadly no longer accustom to writing properly & speak weirdly in general. Should this post be difficult for you to understand, you can let me know & I'll try to break it down further. If it offends you due to my lack of proper grammer, punctuation & sentence structure, you are more than welcome to skip it.
I recently decided to try & follow through with the way 7cups seems to be designed, & go through their steps. While talking & occasionally reaching out to people, or showing support is nice, I wondered if there was something more to this app that could help me on my never ending journey of peace. I reached a step where it suggest joining a sub-community & skipped it. The step popped up again & while I was tempted to skip it again, I questioned why I didn't want to do it. The answer I've come to accept is bc I am a "newer" person due to my handling of new circumstances I'm still confused over & so I don't know where I fit. Add to it that I was never the type to look for where I'd fit in. I went & was received where I was accepted, & shunned from where I wasn't. Doing so on a mental health platform felt like the equivalent of picking a struggle clique, which seemed bizarre to me. All this gave me a deeper understanding about myself & led me to the idea of asking the sub-comminities I think I fit into, if I do in fact fit.
So, the idea is to give a little about myself & my struggle(s). I'll explain why I feel I could be apart of this community & for certain communities, why I don't believe I do but could (sounds weird but it'll be explained in those communities). I would appreciate it if members could share their beliefs on if I do, or don't.
It occured to me that there might be others who may feel the same. It would also be appreciated if members could share why they feel they belong in this community too, &/or who they appreciate being in their community & why.
Thanks in advanced to all who participate or show support.
As for myself & my believed link to this sub-community
sprinkles magical word glitter bc I have absolutely no idea how to transition from the previous paragraphs to the point without making this foreverlong
I have been an active person most of my life. As a young child, I took walks across long bridges after dinner, in order to tire me out & to enjoy the fresh air. I did so many extra curricular activities that involved being physically active while growing up & well into adulthood. Walked/ran/jogged for hours bc I enjoyed it. Walked miles for fun during my pregnancy... even though edema was not so much fun. Started biking across boroughs, rock climbing & trying every type of yoga that peaked my interest. I later wanted to see if it was possible to change weight & size (which remained the same most my life) & relearned to swim, started weight training & calestetics. I changed size but not weight, but was content. I was the healthiest I ever felt, & then, things happened. (If you're silly, yes... it is said with the same energy as Avatar)
I got covid which lead to intense fevers & an extremely achey body, & around the same time, was a passenger in an accident. My ache stayed a while & I started to walk differently. As someone with a high pain tolerance & a person who's walked around with broken bones, not realizing they were broken, it didn't click that something might be seriously wrong. I stayed in pain until I couldn't anymore (& doctors started opening again after quarantine) & thus started the visits to all the doctors & specialist. I was told I had scoliosis, pinched nerves & neuropathy but that was as far as most of my diagnosis went. I dont feel any really explained why it hurts to walk, why my body suddenly & constantly catches cramps, has spasms, uncontrollable aggressive shaking & just generally aches & tires me out, why my range of motion has drastically decreased (or has become a painful process to attempt move normally), why I lose my balance, or why the weather dictates my life now. Everything was always kinda "well it just is", something relating to my being the cause the problems, or something I was questioned as to why I was doing/experiencing it, as if it wasn't a part of my diagnosis & therefore my body's now natural way of doing what it was doing, was just something wrong with me as a person.
I took the medications that were prescribed my way & stopped when I didn't understand how sleeping 16 hours a day, or landing myself in the ER (after taking one) with something that seemed like a heart attack, would help my situation. I did PT until I was removed from their schedule without reason... around the time they suggested I walk like a T-Rex & I argued that no one bends their legs like that to walk "normally" & kept getting questioned as to why my walk changed when I felt temperature differences. In deciding to take a mental break from all I perceived to be insanity, I took my healing into my own hands.
In the several years I've been dealing with these issues (& those diagnosis), weird things began with people in my surrounding areas. Elderly people were fearful for my well-being & began to offer me their walking devices. People would snicker about me carefully planning my steps off the curb. People would call me disabled & I'd correct them with "temporarily impaired" & then feel weird about it. It felt wrong to take or be given a "title" of being a disabled person. Yes, I understood (& still understand) I am no longer capable of strenuous things like running, & all "simple things" like easily turning around or existing without pain, were no longer available to me, but it still feels weird to take on the idea, others & my own, of being disabled. I read stories & saw experiences similar to mine & questioned is disabled really the word here? I understand disability is on a spectrum, just like so many other things in existence, & yet I cannot accept that title... comfortably or uncomfortably... or just as is. Yet, here I am asking if I do.
I looked into this sub-community bc I've changed. My body aches in abnormal ways. I'm constantly at risk of getting hit by every vehicle due to my inability to walk faster than the changing light. Extreme panic sets in when my arm randomly goes numb & I'm holding something valuable/fragile. I smile when I feel the wind on my face while riding a store's motorized scooter bc it reminds me of what my normal walks felt like. I brush people off when they tell me my music is too loud & puts me in danger... & respond with "Have you seen me move? Where am I going, or what am I doing if there is danger?" [Note: I don't think this is a statement relating to having no hope. Despite my muscle weakness, I'm pretty sure defending myself with anything I may have in such a dangerous situation, will at the very least make someone reconsider/stop their actions. Escape is not a reliable option though. Teacup puppies, elderly with walking devices & newly walking babies usually outwalk me easily]. I looked bc I experience these things & I want to talk about it. I want to hear other people's experiences whom I feel could relate (which sounds weird bc I like hearing all experiences... but this is the best way I can word it)
Anywho, all these changes stare at me like a judgemental grandma who knows I'm trying to do something I shouldn't & says "You can't but its ok."
I looked into this sub-community bc when I met people (in person) who wanted to do things they were incapable of doing, they'd say they can't but its ok. When people saw me in pain, they'd tell me what eased theirs. They'd share their experiences & told me how they help themselves (or loved ones). They made jokes & told me about all the experiences they could have. People would talk to me about their progress &/or encourage me through my own journey. [I also found myself doing so to others but it doesn't click as anything since I've always been the bearer of unsolicited advice. Its just weird to me that I do it more often & within the disabled community]. While these things aren't necessarily what I'm looking for (dont know what I'm looking for besides... connection?, smiles & peace), I think I could find that in this sub-community, while I experience my "newer" self.
As for the reason why I don't believe I'd fit in this sub-community, I am progressing. [Anyone who has read this far, please hear me out before lighting your torches.]
When all these things began, I cried in public places. I've walked on a broken bone & didnt feel a need to cry, however, the pain I endured in the beginning of this experience was enough to have me ugly cry as I struggled to make my way anywhere. Enough to make me temporarily not care that the person who offered me help, was only doing so in order to try to get to know me later, & was enough to make me want to do so (accept their help... not the other thing). Over the years I've changed from that place to where I now just look like I'm contemplating violence 65% of the time. I no longer take 5+ hours to walk a mile. Now, it's usually a little less than 2 hours.... unless there's multilaned streets. [I like being alive so I don't time anything when needing to involve multilaned streets.] On good days, I am still in pain, but can go without resorting to all the great things nature can provide [For the sake of trying to avoid violating any guidelines, or introducing ideas to those who shouldn't be exposed to them, I won't explain. iykyk]. I'm healing, but the fact remains, I am still incapable of doing what I once could, & I very well may never be able to do so again. I have hope though. Does it really permit me to be welcome in a space even if my stay, while I expect to be long, may only be temporary? Can it really be a space for me when I have no idea of what's the real cause of all this? When I lack a name for any of it? or when I am occasionally becoming forgetful of it's existence (with the help of nature), until it aggressively reminds me & I sleep for several hours bc I moved too much?
In short, my expedition for acceptance reminds me of people who label themselves with having abc bc they've self diagnosed & its trendy.... & it makes me cringe. Not only am I looking for where I could belong but I'm trying to find a label to put on it too (regardless of if it's bc I feel professionals have failed me) bc I want to fix it. [& No... this isn't Pokémon... I dont want em all]
So... is this a sub-community for me?
@yapyap
It sounds like you’ve had more than your share of challenges!
To the question, “do I fit in,” I have no doubt that you do. Actually, since the group is called “disability support,” suggests that having a disability isn’t necessary, but may include those who have an interest in supporting the disabled.
I’ve had my share of mobility challenges, beginning at age 11, when my brother threw me off the porch and both hips started grinding when I walked, and arthritis manifested shortly after. I was also a malnourished fat kid. I was an emotional eater, and my diet consisted mostly of starchy stuff. When I was 17, I walked about six blocks, and my hip pain became so severe I really thought that was the last time I’d be able to walk. It turned out that such events were flare-ups, and between them, I could walk okay, even though the hips kept grinding.
By the time I was in my 30s, the arthritis was pretty much generalized, and now, even more so. Yet, it’s still mostly intermittent, except for my spine and neck, which always hurts with movement. Sometimes my knees hurt so much that I can barely make it down our 75 foot driveway. At other times, I can walk for miles. Amazingly, when I was in my 50s, my hips stopped grinding! Sometimes I can’t hold a pen, but at other times, I have pretty good penmanship.
I have a smorgasbord of diagnosis’, but it’s not that relevant and too much to talk about. Except for having Lyme’s disease that wasn’t diagnosed for 20 years. It permanently messed up my immune system and left me with intermittent vertigo, along with an impressive range of neuropathies.
Regarding the arm numbness, does changing position or extending the arm help? My son and I both have that issue off and on. His seems to be more frequent than mine.
“I understand disability is on a spectrum, just like so many other things in existence, & yet I cannot accept that title... comfortably or uncomfortably…”
The ADA defines it as “a physical or mental impairment that substantially limits one or more major life activities…”
I feel as though once a person has such a label, others tend to make assumptions and reductive perceptions about them. Many have no choice but to put up with such problems. Some are pretty good at concealing their limitations. I don’t feel like I need the label, because I’m retired, and if I’m having a painful day, I can just stay home and not do much. I may eventually ask for a handicap tag for my car though. I’m holding out for as long as I can though. After all, something may occur that negates the need for it.
How do I manage my issues? A combination of philosophical and spiritual perspectives, and a bit of home grown self-hypnosis, which is in my opinion an integral part of the above mentioned perspectives. One of my more significant challenges was to keep from anticipating bad days ahead, based on present or past events.
For many, a minor frustration at the start of the day, sets the tone for the rest of it. Without even realizing it, they start anticipating further frustrations, maybe on a subconscious level. Pain is interesting from the standpoint of perception. Anxiety related to pain or worry about pain, can result in the pain feeling more severe. I’ve dealt with it for so long that most of the time, I feel emotionally detached from it, therefore less likely to bring a pain related emotional trigger into the next day. Another way to describe it is to call it a pain/anxiety feedback loop, in which pain increases anxiety, which in turn increases the pain, leading to more anxiety and anticipation of escalating pain… and so on.
So, that’s about it for me this evening. I hope you’re feeling okay. Feel free to message me.
@yapyap Hi there! Welcome to the Disability Support community!
This is an inclusive community, All are welcome!
I am Misty, I lead this community It is great that you are following one of the 7 Cups grow paths. They can be very useful in helping to explore and navigate 7 Cups., and I am glad that lead you to here.
A lot of people share your thoughts about this community. They don't, won't, or can't, label themselves as 'disabled' or having a 'disability'. But, as I have said we welcome everyone, disabled or not, and I feel that we are a very useful and friendly resource whether a person is searching for information or support for someone they care about, or looking for information and support for themselves. Either way we are here to serve and do our best.
We love long posts, so if that is your style then please carry on. If it helps you to feel that you have gotten your point across then keep writing. We can give you connection, smiles, and hopefully peace too! You will find that a lot of our community share your problems and although we do not give advice we will listen and be there for you.
We also have a chat room in group support 'Disability Support' The room is open 24/7 and you will be welcome to pop in and join us but as the room is 'badge locked' (this means that everyone needs to earn a badge before being given access) it will mean that you need to complete the Compassion Course first - this course explains all about group chat etiquette - more is explained here https://www.7cups.com/forum/groupmod/CommunityManagersOffice_2008/NewCriteriatoAccessGroupChatsLiveNow_281153/
Labels and self-diagnosis being trendy? Yes, you are in part right. Perhaps we might take a different perspective. I understand your words and I sometimes agree. It does seem that for instance as scientific research gives more labels on more symptoms and researches those groups of symptoms before finding a common link or cause that a new illness, disease, disability or mental health condition emerges into the news and suddenly lots of people recognise and run with it and it spreads like wildfire through communities.
So, what to do?
DIagnosis and labels can help give relief, reasons, understanding, sympathy, compassion and a sense of not being alone, instead we might get a feeling of belonging somewhere in a massive, unkind and somewhat uncaring world. We no longer feel lost and alone. - WE then can feel part of a community. Well - here you can be part of a Community, without a diagnosis, with a diagnosis, without a label, or with a label!
WE are inclusive and welcome everyone!
I look forward to getting to know you and seeing you post more here