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Community Voices

Lonely but Living

Hi everyone. I haven’t posted in ages, but need to and more often for sure! I’m dealing with alot of things, and sometimes feel to tired or in pain to reach out in RL to get the help I need. It’s frustrating to know the things that would help me (some of them anyway!) but not having the energy to do do them. I spend most of the time here at home, but finally have gotten to the libray for the first time in two years—so thats one good thing! But getting out for the other things is hard because I never know how I’m going to feel that day. I wish that we could call doctors and say “I really need to see someone right now-heres whats going on”. Often I end up waiting until someone can see me, and if its weeks or months in the future, that doesn’t help me very much. Sigh…
Another thing is that going through everything from the bipolar depression to gastro problems to grief by myself is exhausting. In general I like living alone. But once my mental health stuff, physical health stuff, and grief collided, I was knocked on my butt and had no one to help me. Thank God for this site. It has been wonderful for me. Ive had support for the first time in years, and I’m so grateful for all of you guys.
But I have to admit that I’d still love to have help in RL. Maybe I will one day. I have to believe that I will. Until then, I’m hanging in there and lonely, but living as best I can.
Love to you all. ❤️

#lonely #Bipolar2 #ADD #Undiagnosed #Stomach pain #chronic pain #CFS #Grief

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Community Voices

Anyone else deal with chronic dizziness?

I have been dealing with dizziness for 2 years now. It started right after I had my left foot reconstructed. Right after I came home from surgery, I had a bad reaction to Vicodin and ended up back in the hospital. While there, I experienced what I thought felt like being stuck on a roller-coaster. A day or so later, I felt like I was stuck on a boat, being tossed around by the waves. I had pressure on my skin. I went to an ER, but the doctor didn't help. I called my family doctor's office and was diagnosed with benign positional vertigo. Treatment helped a bit, but it didn't get rid of the dizziness.

About a month after surgery, I had problems with chest pain and heaviness, neuropathy, and my dizziness got worse. I ended up in the hospital again. My heart checked out fine, but it took me a few months to come out of it. I saw an ENT, but my dizziness doesn't come from my ears. I had an MRI of my brain, but it came back clear.

A neurologist diagnosed me with cervicogenic dizziness and prescribed physical therapy for my neck. It helped a bit. When that didn't work, I saw a chiropractor and then a massage therapist who did cranial sacral massage and then a physio therapist who specialized in treating dizziness and confirmed the cervicogenic dizziness diagnosis. They all helped a bit, and the dizziness gradually got better and better.

Until I had COVID, and then my dizziness started getting worse again. For the record, the room doesn't spin when I'm dizzy; it's more like I'm stuck on a boat or being pushed by the wind. I stagger sometimes when I'm really dizzy, but I have never fallen because of it. I have seen another cranial sacral massage therapist and chiropractor, but they don't seem to be doing much good. My rheumatologist told me that he would send me to another neurologist. I don't know what else to do. It's been 2 years, and I am beyond sick of it all. Does anyone have any ideas on how to deal with this? #Dizziness #chronic

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Community Voices

Music is my therapy

I listen to music almost all the time. And just to warn you, I’m going to be singing along. (I have a good voice though) My kids complain about it (13,17 both boys and both on the Spectrum but at completely different levels. I suspect that I’m autistic #Autism so I understand why certain things bother them. It doesn’t matter if it’s their favorite song playing, they insist that I turn it down (one seems to have super hearing because he’ll be on the computer (which is between all of the bedrooms and all of the doors are to remain shut) WITH headphones on, and I’ll be on my bed listening to my #Music and possibly singing, and then I’ll hear one of my sons yelling “Turn it down!” And I have to turn it down to where I can barely hear it or put my headphones on. And when I yell to one of my kids from the same place I had been playing music, they yell back “If you’re trying to talk to me then come out here!” Or they knock on the door and I yell “Come in!” And they reply, “What? I can’t understand what you’re saying! Can I open the door?” But my music is WAY TOO LOUD. And then I’m going, but you like Slipknot! And they always say that they don’t want to hear it right now.

So I go out to the porch with a speaker and I can blast my music outside. Music was one of the only things that would calm down our feral #Cat (we’ve had him since he was 5 weeks old and his mother was rejecting him) but he was just amazed at the sounds coming out of my cell phone and stop using his teeth and claws when we had him in the bed. (Side note- no matter how young the feral cat is, and how used to humans they are, they are still wild animals and you have to take time to tame them) His favorite band was #tool . He would actually curl up on the phone and listen.
I have several chronic illnesses and emotional issues—#Ehlers -Danlos Syndrome type 3, #Fibromyalgia , #idiopathic peripheral neuropathy,#Dysautonomia and I’m being evaluated for #Lupus and #rheumatoid arthritis (EDS likes to bring friends), and I have a small cyst on my pancreas that could turn cancerous (my grandfather, great grandmother and my great uncle [my grandfather’s brother and g-grandmother’s son] all died of #pancreatic cancer. I have a bunch of #nodules on my liver and my #thyroid , #Migraines AND #cluster headaches, #hashimotos , and I suspect #Celiac disease since my mother and nephew have it and it would explain a whole lot (right now I’m cutting out dairy, then wheat, then soy-which is difficult because I’m a #Vegetarian ) plus my mental illnesses, #PTSD , #Bipolar disorder,#Anxiety and depression—and those last two are actually a CRITERIA for #EDS .
I have to have my music and be able to listen to it—before I had ear pods, I would just play it on my phone with it stuck upside down in my bra. The music that is played in stores that I have to go to will actually give me a #Migraine so I don’t have any problems with bothering other people by playing my favorite playlist. They need to be exposed to good music anyway.
I loved that I had a Bluetooth radio in my car, and I would have it turned up loud, and when I was smoking (I just quit!) I would have the a/c blasting (I live in #austin #texas , so it’s running year round) and I would have my window down for my cigarette. And this way I could expose people to good music (if I had a chance to say just 5 words to the country, it would be “ STOP LISTENING TO SH*TTY MUSIC”(seriously, what’s with all the smut in popular music today?)) and possibly find another person that enjoyed the bands that I play.
My number one song for my bad days is #invincible by #tool and this song has been my anthem. Also, A Perfect Circle’s #feathers , another #tool song, #thepatient (can you tell that I’m a big fan of Maynard James Keenan? I have everything that he’s released on my phone) and when I’m dealing with my #PTSD , there’s nothing like The (Dixie) Chick’s “Not Ready to Make Nice “and L7’s “Sh*tlist” and a whole lotta Hole.
I’m into a lot of different genres, but mainly #Metal and #Punk (not pop punk! I don’t call that punk. It’s alternative.). And if I’m not in a motorized cart, having a good day, and I can see the security camera, then I’ll start dancing along the aisle (but not with other customers in it unless I can tell that they’re a punky/gothy/metal head/freak and then I’m talking bands with them.
#Music has also been a way for me to meet people with similar tastes. I can’t go to listen to live music or go to a concert because of my #Dysautonomia . I don’t think that they would let me bring in a couple gallons of Gatorade. But I also made a battle vest with band patches and tons of band buttons (mainly punk bands and metal) and people will comment about this or that band, and ask what my favorite album is and my favorite song by that band (I know at least one song by each band and I’ll either name the song that is considered the best or an obscure song by a band that is mainly associated with just one song (like the Sex Pistols—I like the song “Pretty Vacant”) because I don’t just listen to one song, because you’re going to miss out on so many great songs that weren’t played on the radio.
This is what I collect. Music. Musicians. And I’ll research them and tell people obscure things about that musician or band-like that during a Nirvana concert, Kurt Cobain saw a girl being sexually assaulted in the audience and he didn’t say a word but put down his guitar, grabbed the guy and hung him from his belt loop on a prop so everyone could see him and then Kurt went back to his chair and as he was picking up his guitar he said into the microphone while looking towards the guy and said “Now you get to be exposed.” Not the only time a musician has come to the rescue of a fan.
If I’m not listening to my music, that’s a signal that I’m extremely depressed. Because it’s such a part of my coping methods when I’m dealing with pain or exhaustion or anxiety or depression or dehydration or nightmares. I’m not savvy enough to post my parts of my favorite playlist, but for anyone who is dealing with a #chronic illness that has changed their entire life (which one doesn’t?) I highly recommend listening to TOOL’s #invincible from the Fear Inoculum album. And if you’re dealing with #PTSD , listen to A Perfect Circle’s #feathers . That song is like Maynard’s supporting you in your recovery.

4 people are talking about this
Community Voices
Community Voices

Asking for prayer

Hello all,

I'm reaching out for prayer and support.

I am a lifelong christian, but I am going through a very difficult and uncertain period. I deal with depression, chronic pain and am unable to walk properly because of severe osteoarthritis in both knees. There are a number of other things, that I won't go into, but are making life quite overwhelming. I am in a very vulnerable place. I am asking God daily for His Strength, to help me heal and handle all that is going on.

I am quite isolated at this time, people tend to fall away when the suffering becomes great, you know ?
I love The Mighty and all the wonderful people here.

Hope all here are well.
Thank you so much

#Christian #chronic pain #Depression #struggling #Faith #Support #CPTSD #Trauma #alone

37 people are talking about this
Community Voices
Community Voices

The fear of chronic illness is a tough one. Our minds simple just get on this fight and flight mode as they know something is wrong. The stress of the chronic illness at times can cause flare ups. Thus having faith and positve self talk is important. You don't need to be a toxic positive. You can say, "okay I know this is a tough time and I am gonna have to face alot, but I will get courage and the ways to be resillient enough in tough times. I am sure about it."

17 people are talking about this
Community Voices
Community Voices

My Daughter

#Autism #ADD #PDA #HEDS #Anxiety #Skin Picking disorder #Isolation #parental shame
#chronic Illness

I am so worried about my 5 year old daughter. She will be 6 in November, and is on the autism pathway waiting for assessment. Potentially she has PDA, ADD and a genetic disorder I have called hEDS. She has only recently gone full time at school but they still won’t let her finish at the same time as her peers and I have to pick her up early from the office. Her school friends often overtake her home though, as she walks slow. Often her friends go to the park together or have arranged play dates. They are almost always in pairs. Other parents barely talk to me, let alone arrange play dates. I know my daughter has been feeling increasingly isolated.
Yesterday I picked up my daughter from school and she was already feeling very sensitive, she was crying and fed up. She was passed by several friends talking about their play dates they had arranged. She wanted to go to the park, I also had my 3.5 year old son in a pushchair (he potentially has ADHD and also wanted to go to the park) but it was 30 degrees and I worried it was too hot, and she had already started crying and getting upset. (Of course other parents didn’t care about this). All of this resulted in a full on breakdown of epic proportions. She was so upset and so overwhelmed she struggled with her breath, she couldn’t stop panic crying. Other parents overtook us on the way home and said nothing, didn’t ask if she was ok. My daughter is well-loved at school even though she is very quirky and I find this behaviour from other parents so isolating. I honestly feel so alone sometimes.

We got home and the continuous crying continued for about an hour. She wouldn’t let me touch her. She then proceeded to bite her fingers until they bled. She has been biting her fingers for about 10 months now, since she started reception year. She now has lumps on her fingers caused by scar tissue and infections. I am taking her to the nurse today, thinking she will get diagnosed with skin picking disorder (we are UK). Not sure how much they will do to help her as they continue trying to blame my parenting. I have done 6 parenting courses. Parenting SEND children is honestly so difficult, so thankless and no one helps you.

I am wondering what is going on at school and why she leaves so sensitive. I wonder if it is a build up of trying to fit in over the day and masking. I worry she is being bullied by a couple of kids also (she tells me she was pushed at one point and called a baby by one boy). Also I think the isolation she feels from leaving at different times and being unable to make those connections is finally getting to her. It upsets me so much to see her like this. I have chronic illness (hEDS, fibromyalgia and a blood clotting disorder). Last week I was in hospital with a ruptured ovarian cyst, today I have the migraine from hell (I get bad pain, nausea, aura, blurred vision and unusual smells) and I feel like I can barely walk. Hubby is at work, I have no family near to help. I have to get my daughter into school with my 3 year old in tow. She doesn’t really want to go. Her attendance is already very poor (less than 60%). We are awaiting an EHCP assessment.

I just feel so alone with it all. I am struggling with my own health, my children’s extra needs. How do I calm my daughter’s anxiety? How do I make my GP give us extra help? I have considered taking her out of school and homeschooling her but I feel I am not well enough or capable of that. I am worried about her biting her fingers and causing herself serious infection as her fingers look so scarred and awful and her hygiene is not good (she impulsively touches herself down below and always plays in dirt) and I am forever trying to get her to wash her hands and nails.
My anxiety is through the roof. Just looking for support really also as in very short supply from other parent/carers from her school.

10 people are talking about this
Community Voices

I'm new here!

Hi, my name is Emily! I'm here because this seems like a wonderful platform to bring people living with disabilities together. This platform was suggested to me by someone in one of the chronic illness groups I am apart of on Facebook. I wrote a short piece about what my experience with POTS is like and how I feel about having a “hidden disability”. I thought you guys might enjoy it too☺️ Here’s the link: #MightyTogether #Anxiety #Depression #ADHD #PTSD #POTS #Paramedic #hiddendisabilities #ChronicIllness #chronic

8 people are talking about this