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I am new. I have a seizure risk since May 2014 from cranitomy. I have never had a seizure. I am on 1 anti epileptic medication. I also follow PTSD forums here. I had bacterial meningitis of my brain from chronic sinusitis and access left temporal lobe. I almost died. I was incubated in a medically induced coma septic multi organ failure. I had to relearn everything.


I am new

I have ptsd. I had a craniotomy May 2014 for bacterial meningitis of my brain. Access in left temporal lobe removed. Was incubated on a vent multi organ failure. Today health is pretty good. Now the political situation in the US has increased my trauma

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I wish people would take my weakened immune system seriously…

All my life, I’ve caught bugs, colds and flus very very easily. But in the last ten years or so, it’s been much worse. Because of this, I have every vaccination available to me. The flu one, the pneumonia one, the meningitis one, the hepatitis ones, and five COVID vaccines. I avoid sick people like they literally have the plague.

But then I get my sister and nephew that come over, and the gremlin will crawl all over me. Which I don’t mind. But then just as she leaves she tells me that he’d been throwing up ALL NIGHT.

I run and wash my hands again (I do this repeatedly when he’s here cus my nephew likes to slobber). But, right on schedule… 3am this morning I wake up and had to sprint into the bathroom and even then, I didn’t make it to the toilet to be sick. I projectile-vomited all over the sink. I then spent nearly an hour curled up on the bathroom floor, shivering and being sick. My stomach muscles are so sore. My head hurts.

She KNOWS I’m immuno-compromised. Yet she repeatedly pulls this crap when she feels lonely and wants to spend time with someone.

I’m just really fricking frustrated and sore. 😞

#chronicillnesswarrior #ChronicPain #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #NAFLD #LiverDisease #Diabetes #InterstitialCystitis #Migraines #ImmuneSystem #immunosuppressed #StomachBug #stomachflu

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The real Helen Keller and Annie Sullivan #DeafBlind

The real Helen Keller and Annie Sullivan by Helene Ryles

Helen Keller and I are both Deafblind, deprived of sign language, been misunderstood and had a ton of bullshit said about us, we both engaged in politics and we are both females which just about sums it up as far as our similarities go.

Myths about Helen Keller:
1. Helen Keller knew no language before Ann Sullivan: Helen Keller spoke at age 6 months. She has a perfect description of her illness so therefore it's highly unlikely that it took place as early as is claimed. She must have been at least three. Afterwards she learned various signs from her family's black servants. Due to racial issues they wouldn't have been allowed to punish Helen in the manner that Annie Sullivan did.

2. She describes her illness in her autobiography which would not have been possible if she was 19 months. She was at least

3. Helen was totally deafblind from the start

That's very unlikely. Other deafblind who had meningitis don't lose their sight and hearing all at once. Robert Smithas and Laura Bridgeman didn't.  Laura started with a small vest age of sight which she lost. Robert had some hearing which he then lost.

3. Ann Sullivan just had to give Helen Keller a good hiding and that's all it took.

Sure Annie Sullivan felt the need to enforce discipline to improve Helen's behaviour. But that's certainly NOT how she got through.

What actually happened was that the months of hard work that Annie put in finally paid off so Helen's ability to communicate improved so much that she no longer needed to express herself in violent outbreaks. From what I have read 'the miracle worker'  was a load of ableist and racist crap. The black servants were only there for comic relief when they maintained Helen's language. (Without them Annie would not have managed to accomplish what she did. I read about that and the fact the Kellers were racist in a site that was taken down.)

4. Annie Sullivan was an abled saint who worked miracles.
Annie Sullivan was herself partially sighted and eventually blind.  She also had various mental health issues. In fact if she lived in modern day Canada there may not have been so much of a 'miracle worker' as she was suicidal at times. Most of her mental health issues probably stemmed from PTSD from her stay in the workhouse. It's true to say she was a really hard worker and achieved a lot with Helen Keller. After refusing to take another student for most of her life there was a mention that she wanted to take in a deafblind baby right at the end of her life when she was fully blind with TB. Unfortunately Helen and possibly others put a stop to it. Which is a shame as she achieved so much with Helen Keller she just needs help which is what Samuel Howe had plenty of bringing up Laura Bridgeman.
(To get a better idea of Annie Sullivan read "Beyond the miracle worker" and "Miss Spitfire" ).

5. Helen Keller was taught via a strict oral only approach
No it was more of a full tool box approach. Since she started off with signs before Annie got there. There's no evidence to show Annie Sullivan stopped her from signing. She just didn't use proper sign language herself so taught Helen Keller finger spelling and then tadoma but unlike tadoma of a future era the deafblind manual was used as well.

Despite having a reputation of being something of a spitfire Annie Sullivan had her reason for not wanting to offend Bell but she declined to speak in favour of oralism and chose a school with a soft oralist approach (more like the modern signed Assisted systems or cued speech then the strict no signing at all systems in use at the Clarke oral school that Bell recommended but Annie Sullivan turned down).

6.Helen Keller wasn't political
She was into socialism. As often happens when we get too political we have to face other people displeasure. Our activities are swept under the rug and people aren't so happy which is what happened when Helen Keller became a socialist. A relative even talked about wanting to bend Helen Keller over his knee and that was when she was an adult.

7. Helen Keller supported your modern day cause
I doubt it. I have read a claim that she was for abortion. It's very unlikely since the feminist of Helen Keller's day didn't. Neither was she for disabilities or black issues aside from the odd comment which she got into serious bother with her family over.

8. Helen Keller was too wise to make mistakes
No she wasn't. She supported Alexandra Graham Bell and eugenics. You simply cannot promote eugenics and be for the disabled. It just isn't possible because eugenics is against the disabled.
She was in very dodgy company when it came to Alexandra Graham Bell who was both against the deaf breeding and using sign language and was responsible for Milan which was a very dark patch in history that robbed the Deaf  of their rightful language

9. There wasn't any romance in Helen's life.
She nearly got married to peter Fagan and became Mrs Helen Fagan but her family put a stop to it.  This is quite tragic since there wasn't any good reason to stop the union. After all she had a right to a normal life and it was ableism rather than her deafblind which got in her way.

10. There was only one Helen Keller
No, other deafblind people with acquired deafblindness were also successful. The others just don't get so much of a mention.

Laura Bridgeman was one of the first well known Deafblind people. She was exploited by
Samuel Howe. Howe didn't teach Laura Bridgeman. He hired others to do so.

While Howe claimed to be against slavery and an abolitionist he refused to admit black blind children at the blind school he ran. He was one major poser. Everyone thinks he is the one to originate deaf blind education when he was basically just the middle man. Some other guy decided to set the school up and employed Howe to run it. He had it in mind simply to experiment on Laura and use her as a publicity stunt having people view her like an exhibit. When the quintuplets were treated like that in Canada they had a major problem with it. Many of us disabled people, quite rightly, have a major problem with being seen as inspirational every time we do anything.

Howe started it spewing out complete nonsense about Laura being some sort of saint when she was only human and an unhappy and frustrated human at that. She got lonely, had an eating disorder and as soon as she overgrow her usefulness to Howe he didn't even properly address her support needs. Didn't provide her with the 'nice lady' she had been promised. Like Helen Keller she was also discouraged from marriage which many deaf blind people now do. (Of course not all disabled will find love but more should be done to alert us to what is possible with online and other dating agencies for both regular and single sexed relationships) while Helen enjoyed one full time helper who wasn't answerable to Howe Laura's teachers were and he was deliberately unkind about Laura last teacher when he decided Laura education had finished. The biggest injustice of all though (perpetrated by him and Graham Bell who was another Eugenic git) was to use their influence to put an end to sign language in Deaf Education. It is still debated today when the whole issue is a no brainier. Of course the deaf need sign language starting at babyhood or when a significant hearing loss is detected. Which ever happens first.

Recommend reading:
The radical lives of Helen Keller
Beyond the miracle worker
Miss spitfire
Websites: (about Helen Keller)

Why Helen Keller Believed In Eradicating People With Disabilities

How could a woman made deaf and blind from an illness in early childhood possibly advocate for the killing of those born with the same disabilities?
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The Incandescent Light Bulb Ban Harms Many

I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

#Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

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I’m new here!

hi im here too try and make sence of the health issues I have I had bladder womb removed due to severe intisital cystitis and oab I have no children i was 28 ,ive since lost half if my bowel too no blood supply, and persumed slow transit , I have a parastomic hernia behind my transverese colostomy ,im reliant on 2 pickolax twice a day if not my bowel doesn't want to work im now awaiting further surgery too create a iliostomy, I have issues with pelvic floor , intussuption and ive had a rectal prolapse fixed but has since come back , ive had 30 surgerys but im scared that the iliostomy won't work , ive never had answers too why this is going on ,I also have widespread chronic pain fybermygia, ostiarthiritus in neck top of back and right knee , last few weeks ive started sweating really bad I just generally feel unwell , is it all linked, im 39 years old and ive had tons of issues but its always been put down too meningitis as a baby , I also suffer from recurring overian cysts as overys were left in due too age , ive had ectopic pregnancy, appendix, laoaroscopies 3 laparotomys I have a urostomy and a transverse colostomy at present


I'm new here!

Hi, my name is MistressPlaid. I'm here because I'm struggling with adult-diagnosted ADHD and anxiety disorder, and am having a hard time getting timely and useful care from my psychiatrist, and am struggling with adulting on almost every level.

My ADHD symptoms have been getting progressively unmanageable the older I get, and tonight's late-night tunnel-vision research was centered on trying to find out if my childhood spinal meningitis (and resulting 2 weeks in a coma at age 2, right-side brain damage and inner-ear hearing loss, and more) would help explain my ADHD, and see if I can find a path to manage it.

I'm a former sex educator and sex toy expert (though that one might be something that never stops being a super power) and have used my ability to be in the flow to be present with people and help them know they are *normal for them* and are worth loving. I'd love to flex those neglected helpful muscles here, too, if the opportunity reveals itself.

#MightyTogether #ADHD #Anxiety #SexEducation

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Chasing Ghosts

#MentalHealth #PANSPANDAS #Anxiety #AutoimmuneEncephalitis #Genetics

Our son’s story of finally getting diagnosed with Pediatric Acute-onset Neuropsychiatric
Syndrome (PANS)

It was 2013 when I found myself at the local library thumbing through a book about Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). I was scanning the pages for a solution on how to “fix” our son but nothing in this story sounded familiar. My husband told me I was chasing ghosts and maybe he was right. But I was still slipping into a yearlong obsession to find answers.
At the time, Chris was six years old and we had already weathered through a handful of disturbances. With little guidance from our pediatrician, all of Chris’s issues had been explained away. The night terrors, the constant infections and fevers since birth - all were “normal”. But it wasn’t normal to us - he was having two or three a night terrors a night and their effects were spilling into his daytime life; he was exhausted, anxious, and started panicking every time I left the house. We were eventually given the anxiety diagnosis and Chris started meeting with a child therapist to learn how to talk down to his “brain monsters” (if only it had been that easy). Our pediatrician also offered an anti-depressant and we declined. He was only six years old and none of this felt right. A final blow, the pediatrician asked the dreaded question, “Does anyone in the family have a history of mental illness?”. I found myself confessing that at the same age, I also had panic attacks and separation anxiety. I explained that it eventually went away, however, as an adult, it morphed into a generalized anxiety that would rear its head during times of high stress and interestingly, during times of illness. In that moment, after I confessed my little secret, Chris’s health issues seemed to be immediately filed under the “Apple doesn’t fall far from the tree” folder or at least that’s how it felt.
Through all of these appointments what was never discussed was Chris’s health history. His actual medical file, if anyone had bothered to look, was full of emergency room visits and hospitalizations. By three weeks old Chris spiked a 104 fever and was rushed to the hospital for a full septic work up. He was admitted for five days until the fever subsided. Bloodwork was inconclusive and we were sent home only to be readmitted four days later when another high fever spiked. No explanation from either hospital stay but now our nerves were rattled. In addition to the random high fevers, Chris’s first year of life was riddled with ear infections; ten in ten months to be exact, and two burst ear drums. By the time he turned three, the high fevers seemed normal to us. And then there was the Cervical Adenitis episode - an infected and inflamed lymph node in the neck. After a CT scan and another scheduled surgery, his lump was eventually drained under anesthesia and we were sent home with a three month supply of antibiotics and zero explanation of how or why this happened.
These medical events from Chris’s infancy and toddler years were never brought up during therapy sessions. And I wanted to know how these awful fevers and infections were related to his night terrors and his growing separation anxiety? These questions wouldn’t leave me and instinct finally started to kick in. I had to stop shying away from pushing the doctors because I was embarrassed about my own history with anxiety. So that’s how I ended up at the library surrounded by medical journals that I barely understood and stories of children with Obsessive Compulsive Disorder (OCD) that came on overnight.
Life marched along for us and we started chalking Chris’s anxieties to him just being “difficult” or “overtired”. However, after Chris’s 11 year old well visit, life as we knew it would be thrown off course for good. This visit included two booster vaccines (DTap and Meningitis) seven antigens at once. The appointment had been on a Friday and by Sunday night Chris was feverish and complaining of a headache. On Monday the school called, Chris was having a full-blown panic attack and I had to come get him right away. I took him straight to the pediatrician and after a quick eyeballing of his state (dark circles under his eyes and ghost white skin) and a glance at his file (you know the one) the pediatrician dismissed us with a “maybe he’s just afraid of shots” comment. This was the norm for us now. Any time I questioned the connection between Chris’s health and his anxiety I was told again and again that “anxiety just runs in families”.
Chris sat on the couch that afternoon and sobbed and sobbed.... for hours! I had never witnessed anything like this and that night he started having night terrors again and every night after that for the next month. The school mornings became torture; we had to scrape him off the floor and wrestle him into the car. This was a new hell for our family, the intermittent night terrors and separation anxiety was one thing to deal with, but this, this was sheer awfulness.
I started chasing ghosts again, but this time I saw them for what they really were; our genetics. With the help of a few selfless academics that took the time to answer my desperate emails I was pointed in the right direction. And that direction was 50 miles north in Boston. The day had finally come and we were seated in front of a doctor that specialized in PANDAS and PANS. He listened to me rattle off Chris’s symptoms, illnesses, lumps, fevers, the whole time he patiently took notes. I had been bracing for the mental illness confession but instead I found myself answering questions about my mother’s sisters that had rheumatic fever as children, my grandmother (their mother) that suffered from debilitating rheumatoid arthritis, and my own mother who had Polymyalgia rheumatica. It was becoming apparent how relevant it was that Autoimmune Disease ran on my side of the family. This doctor discussed with us that Chris most likely had a fever syndrome as an infant and toddler (random fevers and cervical adenitis were hallmarks of an autoinflammatory disorder called Periodic Fever, Aphthous Stomatitis,

Pharyngitis, Adenitis (PFAPA)). We walked away that day with a diagnosis of PANS. The next stop, tonsillectomy and antibiotics. The ghosts had spoken!
Chris had not inherited an anxiety disorder; he had inherited an immune system with a roadmap that had mistakes. Slowly, he started getting better. The night terrors disappeared and along with them, the day time anxieties.
For our son, symptom onset was not overnight. He had so many health issues starting the first few weeks of life, which continued throughout his early childhood. His body was in a near- constant state of infection and inflammation. Add in his medical history to a family history riddled with autoimmune and strep-related health issues and it is no wonder that our son has PANS/PANDAS.
Today we know the flares will come but we now have a plan. We have doctors to call for advice and treatment and we have a village of families just like ours that we can reach out to. Our hope is that all of this hell that Chris has been through has some purpose. I hope his story resonates with a parent out there searching for answers. It took our family 11 years to get Chris diagnosed and on the path to healing. I hope someone reads this and the time it takes to find help is cut in half. Please remember that the ghosts and secrets we carry with us are there for a reason. #Parenting #Gaslighting


Given and grief


Not really sure why I'm posting this, I guess I need to tell someone how I'm feeling without seeing faces. In January this year our amazing 15 month old grandson passed away. After a 6 week fight against strep throat, which somehow got into his blood stream causing pnuemoccal meningitis and sepsis he lost. That doesn't really explain the fight he put up but it is the basics of what he went through. He was so healthy, had been vaccinated from meningitis just not the variant he caught, who knew there are over 90 variants of pneumococcal meningitis and the vaccine only covers the 13 most common.

I look at his photos and have to remind myself that I'm never going to have a hug from him again or see his smile when I walk into the room. I am hurting from this massive loss while trying to deal with my fibro, and be there for the rest of my family, sometimes I just want the world to stop spinning so I can get off.

I know I'm not the only person going through grief so for all those I'm sending huge hugs