Tremor

Today I counted 101 distinct PTSD tremors before 9am (My personal best to date was 115). On tremor 101 I prayed to him to make it stop and I think he heard me. I'm now ready to face the day.#PTSD

Since the beginning of this year I‘ve faced so many challenges, non-stop, I just cannot deal with any more. I’ve reached my mental, emotional, and physical limit, and tomorrow I’m going to postpone a scheduled procedure for a few more months (colonoscopy) because I just need a break! It will be the 3rd test for cancer I’m having since January and I still am waiting on results from the first 2 separate ones!
I just had 3 mammograms and a 6-punch biopsy. A vein was inadvertently hit, and I am entirely deeply black & blue, and in pain. 2 weeks for results. Long story of misdiagnosis, but I’m finally seeing the correct doctor to determine whether lesions on both sides of my head are cancer as my GP diagnosed. I saw a prominent movement neurologist who said I did NOT have Parkinson’s, (Yay!! Yay!!) but severe Essential Tremor which only focused ultrasound treatments to my brain or microchip implants might help diminish the tremor. (I am not independently wealthy or so inclined.)
But in addition to all the physical stuff is the termination of my relationship with my eldest daughter-she’ll be 45 soon. I just absolutely cannot “reach” her anymore.
My first daughter who I have always cherished & enjoyed began having problems in her teens, especially following my divorce in an acute domestic violence situation where I was forced to take my children & pets and give up their only home because my ex- refused to leave, and he was hurting us all. I found a great fixer-upper right across from the high school, transformed it, always had a houseful of kids, worked hard and had a happy life. Both kids were honor students and active in clubs & sports. Until my eldest dropped her good stand-by friends and began hanging out with troubled kids from other schools, and acting out. Their father’s abuse never ended, but he targeted our eldest and adamantly refused the counseling for her she so desperately needed & deserved. She turned from a sweet, bright, funny talented youngster into a rage filled, viscous, self-sabotaging bully exactly like her father. And has maintained that personality toward all her family since, blaming each of us for her unhappiness and health problems, and being unrelenting, escalating abusive, continually speaking outrageous lies and manipulative accusations that leaves her sibling and I aghast as she’s got increasingly worse over the past 10 years.
Her sibling got married, has a beautiful family, and always tried to include her sister, even’tho she was always abused & shunned. Her sister got counseling, and no longer allows the eldest into her life, although they have met several times at relatives for the children’s sake.
My eldest lives 3-4 hours drive from me. I would do look forward to her coming to visit years ago until she became very belligerent over absolutely nothing, began deliberately provoking “fights” I NEVER wanted to have any part in, objected to anything I said or asked, and got herself so angry & worked-up that she’d leave yelling, screaming, & cursing me at the top of her lungs! I live in a very quiet senior building and I did everything I knew to de-escalate the situation, each time, to no avail. The final visit, a few years ago at Thanksgiving, she suddenly lunged at me from across the living room fists raised, teeth clenched, maniacal eyes…got right up in my face, then backed off. I can never feel safe with her again. I did have a few sessions with the counselors at the local Domestic Violence Center.
So she’s continued this degrading abuse via phone calls over the past several years, blaming me for everything her father did to her, and it’s just broken my heart to hear all her bizarre, hateful, untrue name-calling and bullying. She is “in therapy” with someone online whose credentials are clearly from Walmarts 101, and who has no philosophy whatsoever other than “everything is your parents fault & there’s nothing you can do about it, so rage away making yourself sick, suffering, & staying stuck!” I can’t take any more of her endless incredible hatred. I loved that child and woman with my entire heart her whole life through thick and thin, protected her, encouraged & cheered her on, looked after her when other parents might not have bothered, had fun together…never laid a hand on her. I am gentle and reasonable with discipline that teaches consequences.
But the stress of her calls, constant demeaning without cause, is too much stress for way too long. My glucose levels skyrocket for days from the cortisol and totally mess up my diabetes & blood pressure. I just had a major Arrhythmia episode. I’m having to deal with depression & anxiety & ptsd whereas I’d reached a level of contentment and peace and pain management. She’s slammed the phone down on me once too often. I finally agreed with one of her many threats and while I said I always have and always will love her with my whole heart and soul, I will no longer tolerate her abuse in any form. No more calls or texts…until or unless she can find it in her heart to relate to me with some respect and civility. She then texted me a photo of her and a bunch of friends smiling, laughing, and said “See mom! I’m HAPPY without you! I’m having a great life without you in it!” I had a stillborn baby birth in between these two kids who I mourned over for a long time. I’m going through a great mourning now for my beloved firstborn- we’ve been thru so much together. But I feel a great sense of relief and calm is returning just these past 2 weeks and I know we’re both going to be ok. I’ve prayed for her every day and I’ll never stop. I miss who she was. A huge part of my heart and life is missing.
I’m hopeful about all my test outcomes, too. I threw my own theory into the mix. Instead of 4 or 5 specialists sending me for endless invasive tests, I’ve proposed that all my symptoms are attributable to an allergic reaction to a specific medication I started 10 years ago. I got 2 doctors to agree, so I stopped it last week and now we wait and see! Who knows? Meanwhile, should I just get the d€¥m colonoscopy over with now? Or give myself a couple months break?😵‍💫

#ChronicFatigue I #ChronicPain

My Grandfather was born in New Brunswick Canada in 1924 of Irish/Scottish/English heritage. He will turn 100 years old in November.
My Grandfather is the sweetest man I have ever known. Selfless, giving, caring of others…a gentle and quiet spirit.
I saw him yesterday at his retirement home. He lived with us until the age of 97 and was in decent health…although he has had basal cell carcinoma on his head and nose from the year I was born (for 35 years.)
A bout of pancreatitis sent him to the hospital and his health (and mind) rapidly declined in 2022.
Now, he is bedridden and almost deaf…his skin cancer has become severe and he seems to have dementia although he has not been diagnosed.
I wouldn’t wish this on my worst enemy, being 100 is not the pretty picture you see in the news. It’s ugly and sad…and if I think too long on it I get depressed because this fate has come to the most honourable of men. My Papa did not deserve this.

Let me tell you who he used to be:
A young man married with 2 children. The eldest a boy and a girl (who is my Mom.) He worked as a repairman at GM and stayed there 30 odd years retiring early due to his wife’s health. My Nana had Addison’s disease since her 30’s.
During all of this he diligently served his local Adventist Church as head elder for many years.
His hobbies included leather work/stained glass and gardening. Despite the fact that he suffered from digital tremor for much of his senior life.
He was the male influence in my life as my own father was largely absent. Even to this day in his confused state he tells my Mom that his “daughter” came to visit…while asking me who my Mom is. He has never once seen my face and not known me…

I love my Papa! If sanctification can be seen completed in the character of a human being it would be seen in him. The lovely character of Christ still shines even through all of his pain and all the deaths of loved ones including his own son…in his confusion he is as sweet and as polite as he’s always been. Never a vulgar or harsh word spoken.
He was and is my inspiration to continue in the faith…no we are never perfect in this life but we can try our hardest to live a good Christian one.

I wrote this because I don’t want the world to forget my Papa. Yes, he was/is your ordinary hard working man…but he was/is extraordinary to me.

Good day all. I'm wondering if you can identify. I feel lost today. I'm not quite sure who I am, how much more pain can I take, what's life going to be in 3 years or 5 years, why bother with all the self-care, why tolerate people who just can't understand, why do the cleaning, why bother with many doctor visits and tests, why, why, why bother? I am living to survive and surviving to live. I just don't know why today. I'm sure many of you have had this experience but I'd like to actually hear from someone. Have a great rest of your day. #BackPain #ChronicFatigueSyndrome #IBS#IBS #Anxiety #long haul constant pain #Tremor #Fibromyalgia

Hi, my name is PinkGannet46737. I'm here because I am looking for advice on how not to become overwhelmed with multiple chronic illnesses. Four years ago I was first diagnosed with Sjorgens disease. A few months later also with small vessel vasculities. Now I also have POTS and possibly Rheumatoid Arthritis, but that is not 100% certain yet. I have a tremor, numbness in my legs and lower arms, lots of joint pain , headaches, overwhelming fatigue, gastro intestinal issues mostly nausea and stomach pain, and constant anxiety. I am on Prednisone, Leflunomide, Plaquenil and Methotrexate. POTS symptoms are very severe , some days I can't get up at all, on other days it's noticeable, but not so severe that I can't do anything. I am constantly vigilant for any new symptoms, and I am worried how much worse things will get and what to do about it? The anxiety and worry keeps me up at night and I am stressed out about all of it. For any advise I would be grateful. Thanks to everyone who might read this.

#MightyTogether

Hi, my name is Jul608. I'm here because I want to have community and share. I have just been diagnosed with Parkinson’s or possibly Multiple Systems Atrophy and would like support with that as well. I have a bad hand tremor, am taking weekly shots for Behcet’s, am older lady trying to deal with multiple health problems with children but no spouse. I am very grateful for my adult children’s support through this. But I know they are frightened as MSA is a fatal disease. Some of my children have bad mental health illnesses so I don’t want to scare them. I try not to think about it being MSA. The only way I will know if I have MSA is if I have the symptoms or An MRI next year. And I have to deal with keeping my Behcet’s under control too. If I get too stressed I get a flare. I do meditate every night. That helps! I do yoga when I can. But I wish I knew what I am dealing with!

#MightyTogether

Hey all

My Myoclonic jerks started around 12-13, of course I just called them twitches until I know what Myoclonic jerks are

I'm currently 28 and the Myoclonic jerks are progressively becoming more frequent with some being a little more intense than others. I cannot do really any task without a jerk happening. I can have like 4-10 in the space of a minute

The essential tremor is relatively new, only the past 5 years but has significantly got worse. If I am standing for more than 5 minutes or maybe Its a hot day and I am attempting chores, my entire body will be shaking

I had an MRI a few years back with nothing showing apparently but I don't have a Neurology appointment until April 2024 and because I'm undiagnosed I never know where to turn

I have various other health issues too including craniosynostosis and a cervical spine issue also undiagnosed

I had an exploratory procedure on my bladder under general anaesthetic on Tuesday. It seems they didn’t find anything untoward, which is good, but I’m still left with challenges that have no answers as yet.

The other problem from the procedure is that they had to intubate me during it due to really bad acid reflux. They also gave me a drug to completely dry out my saliva which meant I could barely chew or swallow anything for the first 24 hours. It seems that they very very slightly chipped a tooth too.

It has also messed me up quite a bit & inflamed things in my throat and oesophagus. To my body, the intubation was a trauma. 48 hours later & the acid is quite bad & Ive got quite a lot of discomfort in my throat & chest & swallowing is not quite right. It’s actually pretty uncomfortable to swallow. I really hope it calms down because it’s quite distressing & fatiguing (I have fibromyalgia & M.E. amongst other things, so my body is probably responding a little bit more acutely). It’s triggering a lot of anxiety because I had a massive massive flair like this coupled with jackhammer spasms and a tremor all the way down my oesophagus for months during the lockdown in 2020. It’s not quite that bad, but there is a lot of apprehension that it could go that way. I was in such a terrible state then crying on the floor in agony & in and out of the emergency room, having to have IV paracetamol (they wouldn’t give anything stronger - mainly due to contraindications with other health problems of mine).

Over the last 2 to 3 years I was on medication for the reflux (but eventually weaned off due to worries about B12 deficiency) and a special diet which did help calm everything down. I gradually went back to eating more as I was before, but have greatly reduced a lot of triggering foods. I’m just really tired out and upset that this has all flared up. I have a follow-up in about 4 to 6 weeks regarding the procedure and my condition and I’m uncertain what the next steps might be.

This is all on top of lots of other medical and neurological things that I’m needing to deal with. I’m not even quite sure my partner quite understands the nuance & multiple layers that I’m having to manage in my life as a “spoonie” and a neurodivergent mum parenting neurodivergent young adults and how fatigued it all makes me on so many levels. I’ve been burnt out for the last few years due to a huge life change and this all adds another notch up.

Part 1 of 2 It was a summer day on a Saturday morning and my family, and I were going to spend the night at freeport beach. We showed up at the beach early that afternoon we had a fun time the first day going deep in the water of the beach and playing in the waves. It was nighttime and I asked my dad “Hey Dad do you want to walk the shoreline with me and check out the beach at night.”

My Sister said, “I will go with you, Sean.”

So, my sister and I walked down to the beach, and we made it to the shoreline from the beach house. We started walking down the shore and as we were walking, I looked about twenty to thirty yards in front of me and I thought I saw a figure in a dark robe I asked my sister “Do you see that?” Scaring me half to death.

Sensing my fear my sister said, “yeah I see it.”

I’m not sure if she saw it or not but we both ran and didn’t look back. When we go back to the beach house; I saw the figure again staring at me in a dark robe while sitting on the picnic bench underneath the beach house. My sister said, “I’m going to go back up”

I said “ok”.

So, she went up the stairs and I stayed in the downstairs area and the figure spoke and said, “Hello Sean my name is Athos.”

I heard him say it clearly, I have never seen something or ever heard anything more terrifying in my life. At first, I said ok that was weird and kind of brushed it off and walked upstairs to the beach house. We were on our way back home from the beach the next day we all had a wonderful time. Except for the fact that I saw and heard a voice talk to me, but it was whatever.

Soon when we arrived home it was nighttime, and I was sitting down on the stairs on the back patio when I heard a voice say “Hello Sean” I turned and looked next to me, and it was Athos from the beach.

Him saying “I want to teach you something.”

Me responding to his statement I said, “What do you mean what do you want to teach me?”

Then all the sudden the patio table shaked I would’ve never thought it was possible to shake a table I was like did I really see that questioning to myself.

He said “It’s easy just look at the table hold your hand out and say shake. So, I held out my hand focusing hard on the table I whispered “shake.” I wasn’t sure but I could’ve sworn I saw the table tremor just a bit. I was blown away questioning was that real. Ever since then I have had him talk to me in my mind sometimes saying good things and even bad things but truly, I believed that all he really wanted was a friend. So, he was kind of like my imaginary friend for a little while. He showed me all kinds of things like showing me how to make things shake which made objects appear to tremor and many other things.

Then I went to my moms and the symptoms became violent. I was hearing voices all the time and a lot of voices were negative. There was one night when I heard a voice in a deep grungy voice talking to me that said “BOO!!!” It scared me so bad I tried hiding under the sheets and I spoke and said “who are you”

The voice answered “I am Satan”

I was so scared I was thinking great the devil is in my house then I peered out from under the sheets, and I saw him standing in front of me he was a tall muscular figure with red skin and horns. He kept telling me negative things saying to hurt people or kill people I tried not to listen to him. In my head I was seeing images of my family getting hurt by this person and sometimes seeing me hurt my loved ones as well and I said to myself I must do something So, in a panic, I went downstairs to tell my mom about what happened

She said, “Seriously Sean.”

I Said “Yes Mom I am so scared.

Her realizing how scared I was saying “Don’t worry we will get you help.”

Then Months went by with those crazy thoughts and finally, my mom said, “We found you a place to go to help you with your crazy thoughts and voices.” So Super nervous I went to a mental hospital. I was only 15 and there were a bunch of adults in there that were just crazy, and the voices and illusions didn’t help either. Then there was a certain voice in my head, and it was Athos and he said “So you finally decided to get help did you” I said yes in my head so people wouldn’t think I was crazy.

I asked him “Was this a good idea”

Him in a reassuring voice said “Who knows only time will tell.

Then they called for me in the conference room and they were asking me all sorts of questions like what do the voices say to you I told them I see things and hear things that aren’t their voices telling me good things and bad things about what I should and shouldn’t do. Also, I hear the voices of people that I talk to in a conversation, and sometimes as I’m talking to them, they would say exactly what I was thinking they would say in a conversation. So, after that, they told me they would have to do so