Meningitis

It is clicking and I hope it stays.

Since my second brain injury it has been different how I can use my brain. I have now short term memory loss, more easily distracted by little stimuli, movement around, lights and sound or change in lights and sound… but most of all when trying to talk/communicate with anyone, words make me think other thoughts and forget what is going on.

My brain used to be over intensely exhausting from electrical output. My brain made too many connections at once, I saw everything from every single angle or point possible. I ran into problems of people not knowing what I talked about in conversation, because my first thoughts were 10 thoughts ahead of who I was talking to. I had to explain until they would say “ooooooohhhhhh” and they would have an “aha!” moment. I had more control in being able to keep my thought while helping someone get to theirs.

This was easier because I could keep dozens and dozens of trains of thought straight in my head. I didn’t forget. I always have a lot to say.

After injury, I get a lot of thoughts but they go away before I can try to remember or write down. If I try to speak out of my mouth, I get distracted by anything and it is gone.

Even with words hiding, I still feel all of the thoughts. I still have so much to say but not ways to say it and have deep conversations on it. It is lonely and exhausting. It is weird because I physically feel my thoughts, it is like the urge to make a quick witty joke at the right moment, but when you go to open your mouth to say it, no words come out. Everything inside was ready to speak, but my brain disconnects and I am left with a “just about to” feeling. Like something is forever right on the tip of your tongue, but can’t come out.

Now, I see more in my head than I have the words for. I say to people “my word bank is gone”, I still have some and have knowledge, but when I go to retrieve knowledge I have, my brain gets lost and I can’t find any of the words, but I can feel it.

What happens now is not words that come to me quickly or in response. Instead of words in my head I see pictures, video clip replays, some memories, colors, gestures, movements, charts, graphs, diagrams and more. The problem is, I do not have words for these things I see in my head, I cannot translate what I see into words.

What I see though is in direct response to what someone is trying to talk to me about. So I have times I know what is being talked about, have responses, but cannot translate to words.

I get frustrated a lot. I used to talk a lot and be able to help many people a day.

With my brain injury, when I have a change in any emotion at all, function goes down. When I get frustrated with all that I have to say but do not have access to the words, it then instantly drastically harder to try to speak. My speaking gets choppy and I think I sound like a baby, which frustrates me.

I ask “what should I do?” “What do I do when this happens?” My therapist tells me to write again.

Writing got fun for me just before my injury. I had mild brain damage from meningitis as a 6 month old. At 19 my psychiatrist ordered a QEEG to see if there was a physical reason my mental illnesses are so treatment resistant. We instantly found the brain damage from meningitis as a baby. Before knowing about the damage, I was blamed for not trying hard enough, not having enough self control, being too overdramatic, wanting attention, etc…but it was brain damage.

In 2021 I was 27. I had a breakdown and had a plan to take my life. I was sent inpatient and was assigned a doctor who coerced me and forced me to have electroconvulsive therapy. I had said no, and was told this was my option for treatment, or I could get released to go through with my plan.

After first ECT, I learned the excruciating pain it causes. It feels like what I imagine getting hit by a bus feels. Whole body feels like it was crushed and jelly. The jaw feels like a baseball bat full force at the hinges of the jaw.

Aside from pain, I was thinking responses in my head to nurses questions, in Spanish. I took Spanish throughout high school and into college.

The nurses thought I was speaking gibberish because they did not know Spanish, and put me to bed. I was forced to spend a month in the hospital getting these treatments.

It got better. Then instantly worse than before.

It got better because I had memory wiped and did not know traumas that happened to me anymore. Did not have societies thoughts in me anymore.

Was discharged from the hospital and medically abandoned, no follow up care, no answers to call backs requesting referral or asking where to go for help.

I started to notice after 8 weeks, what was lost was not coming back. More issues communicating and with memory, have never been able to contact Doctor who did this to me. Was told by many random doctors after, that what I described “can’t happen”, but it did happen.

I used to be able to bring these writings more full circle, for now I will just be proud of what I was able to write today.

Ptsd mine and my veteran husbands

My husband is a veteran who always reads news and wants to discuss. Believes civil breakdown coming with November election. I have ptsd from surviving bacterial meningitis of my brain 10 years ago. Husband believes everyone should keep up with current events and be ready to react. This relationship caused me psychological damage. He is a good man means well. I cannot live off grid due to medication and would not want to. I am back in therapy. He has refused this for himself as well as couples counseling. We have arguments over and over power and control who is right etc. He has said people who do not read news can't handle it. Well I do not have to because it has all become pathological. He is buying self defense weapons he says to keep me safe. He already has enough. This situation for 4 years has caused me so much fear I have lost site of the good things he has done for me. At this point I will not discuss current events with him. I no longer read the news.

Hi, my name is gertrudemcfluff.

#MightyTogether #Anxiety #Migraine #OCD #Meningitis

Hi, my name is TPain87. I'm here because
I have been dealing with nonstop everyday migraines for the last 11 years. I am tired of going through this. Multiple doctors I've been through who I've switched to diff ones because I wasn't getting help when I asked them to please do certain tests. They continously put me on different meds. I take sumatriptan when it's BAD and I also take propranolol for my high blood pressure and to help with the migraines as well as monthly aimovig injections. I hate nobody around me will help! I've been to the er so many times over the years even once with a fever of 104 and they thought it was meningitis but they never tested me. Sent me home on an antibiotic to see if it'd help. It did for about a month. Over this 11 year period, I have gotten worse. They're more severe, I start to see things that aren't there, I have lost 40 pounds in 3 mo ths bc I don't want to eat or drink. I also have crohns disease and stage 3 kidney disease so not sure if it has anything to do with those? I am irritable, my personality has changed significantly with one second I'm happy and with a switch I am pissed off. I have excessive sleepiness, eyes were rece tly checked bc I'm having issues with light and driving is somewhat of an issue now. I have been put on a cpap machine bc of my sleeping patterns or nights I don't sleep. I'm confused and can't remember things how I use to. I'm struggling really bad. I'm 35 years old and have been dealing with this since I was 24. I am always feeling ill and always go to bed to wake up with fevers. Something IS WRONG and no neurologists seem to help. I have gone through physical therapy and it didn't help as well as chiropractor apps 2 times a week and still didn't help so .y insurance seen there was no improvement so they stopped paying for it. I can not work right now bc of it. My last job I was sent home a lot! If ANYONE knows anything, please help! I am struggling just to manage them every day just to live! 😔 If anyone might know what it could possibly be? or who is going through the same thing, I'd like to know! I feel alone. 😩

#MightyTogether #Anxiety #Depression #Migraine #Crohn 'sDisease

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.
#Epilepsy

Hi, my name is Mwoodard. I'm here because

#MightyTogether #Anxiety #Depression #Migraine #AutismSpectrumDisorder #ADHD #PTSD #Grief #EhlersDanlosSyndrome #ChiariMalformation #TraumaticBrainInjury #Syringomyelia #PosturalOrthostaticTachycardiaSyndrome #HidradenitisSuppurativa #Meningitis #ADHD

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

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

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:
Books:
The radical lives of Helen Keller www.amazon.co.uk/Radical-Lives-Keller-History-Disability/dp/0814758142
Beyond the miracle worker www.amazon.co.uk/gp/product/B007Y39IYU/ref=dbs_a_def_awm_bibl_vppi_i1
Miss spitfire www.amazon.co.uk/Miss-Spitfire-Reaching-Helen-Keller/dp/1416925422
Websites: (about Helen Keller)

Three Big Ableist Myths About the Life of Helen Keller

Why Helen Keller Believed In Eradicating People With Disabilities