@FunFactsLulu
All comments are on point. People are ableist & so uncomfortable w/ disability or chronic illness. My response to the “What happened to you?” question: I slowly look them up and down & then say “You go first. How’d you get that way?” (Practice at home if necessary) Priceless.
When I became ill with
#ME
, on the day of my father’s memorial service I texted my brother (very educated academic) that I was too sick to drive me & my daughters 4 hrs to get there. Response: “If you’re well enough to text this bullshit you can get here”
The stigma. 💔
#ME
#LC
How would your life be different if doctors *simply recognized*
#ME
&
#LC
? They tested for cancer, brain tumors, MS. I pushed myself. I worked sick. My body started to spasm. I kept going. What if a dr had said ‘I think you have
#ME
’ Wouldn’t we do less damage to our bodies?
@alexandrite113
In the meantime, while you have to live this horrific abuse by your parents, remember you deserve love, caring, compassion. Try not to internalize this awful cruelty. Keep posting here. It’s already so soul crushing. I’d like 10 minutes with them - parent to parent. You’re loved
Rosa is still separated from her family, and we have learned that they may not be reunited for weeks. Keep calling the Office of Refugee Resettlement.
#RosaMaria
#ReleaseRosa
When people like or comment on a post I feel I’m part of a community that cares.
We could look at our followers list for a person whose posts haven’t received any attention.
We can interact & support. We can make someone who’s struggling feel a little less alone. ❤️
#ME
#LC
An extended period of extreme
#PEM
for me. Why? I got excited about looking out the window at bird feeders my daughter put back up because I missed seeing the wild birds. I woke up looking forward to them. Anticipation, excitement, happiness. Now can’t move. This matters. 💔
#ME
@SkinnerPm
Oh she’s adorable! Happy trapping & good luck! Here’s one of the litter I trapped (4 yrs ago) when she had been with us about 3 weeks so she was tame. Hurt her nose on the trap. Got all her siblings & mom. She was like a little wild squirrel the 1st week. She’s still here. 💕🐾.
@Dbwagner104
Ah yes. Chloe always meows (high pitched yelp really) beginning half an hour before breakfast and again before dinner. The vet said she’s overweight… the `diet’ lasted a week. Chloe wore me down. 🤷♀️
@SkinnerPm
So when Bakey hosts a picnic and invites friends, & Mean Cat won’t sit next to any cat, and Big Eyes will only sit to the left of a girl cat with grey in her, and Theresa has to sit next to The. Little. Kitty. but won’t sit next to Skinner :( , who sits to the left of Skinner?
@SkinnerPm
Wow…the accommodations at Skinnerville must truly be as awesome as advertised. You arrest him, seize him, drug him, cut off his jewels, let him go, all w/o a warrant or access to a lawyer, and he STILL comes back. (Thank goodness 🧡)
#Sjogren
’s patients face a lack of care. My severe systemic problems have been dismissed for years or have left doctors and dentists puzzled (really!). These symptoms are quite severe and have become more so over time.
#Sjogren
’s
@bennessb
New twist: I have had a high fever (up to 104) for 11 days now. Negative COVID test. My doctors’ office won’t see me because “they are not seeing anyone who is sick.” Seriously? Why did they become doctors? Who are they seeing? 😞
@DHSCgovuk
This survey is almost impossible for sick people to complete. It lacks a save option so necessary breaks can be taken. Also, questions are layered in with confusing pros. Outline this? Also, not accessible re text to speak. Please tailor to needs of very ill people with ME. 🙏🏾
Many of us with
#ME
or
#LC
or a
#Disability
need carers.
Carers are necessary for us to survive.
There are also those without a carer. 💔
We’re dependent on family.
What do you need most from your carer? Does your carer understand your illness?
#ME
#LC
@chydorina
Thank you for sharing. 💔❤️ We’re so blessed to have you here. It’s hard. I’ve come very close several times. My brother, mother, & stepmother all wrote terrible emails about how worthless I am. Thankfully I didn’t need money but….😢 I’ve stayed for my daughters.
#pwSevereME
@gretchemaben
@evolutionarypsy
Ask the pharmacist to write down the exact citation of the statute they are citing. The pharmacist should know it since they’re talking “state law.”
Ed Yong’s article on “fatigue” and what it really feels like to those with
#ME
and
#LC
is truth. Plus the stigma attached, the drs’ views. It’s been out awhile but I’m posting it again. I felt he knew me. This insight matters.
#ME
#LC
🛑I wrote about what “fatigue” really means for people with long COVID and ME/CFS, and why this profoundly debilitating symptom is so often misunderstood and trivialized.
(This piece also covers PEM.) 1/
@AlexSprackland
Same with
#ME
. Waking from a nap and feeling poisoned - hours to recover. Same in the morning. And have set a special drinking schedule so I don’t have to get up during the night. Well, I can’t get up during the night. Sleep is so many steps backwards every time.
@pamelarbishop
@lincolnfingroup
💔I’m so sorry. Is there anywhere you can borrow from while you start legal action? Former attorney here who had attorney fighting my LTD co because I was too sick to do so. Prevailed, but had to borrow from my retirement funds while waiting. 😞
@SusanD1408
Ah yes. It would be just more interaction with a very viciously mean person. No contact gives me peace of mind. I cried and cried until my daughter took my phone and blocked him. He wanted the family inheritance. Good for him. Thanks for understanding- it was awful.
@maciase10
@jacasiegel
I had the pleasure of hearing your Global Migration & Transnationalism class which you taught remotely at UAlbany. My daughter Anya was in the class. Your lectures were superb & the high degree of interaction w/ students was rare. You should be teaching! I wish the best for you.
@hopefullizzy
@UniversityLeeds
Yes. ME, POTS, and corresponding diseases have devastated lives. For 30+ yrs. I get blood pooling in my feet & legs as well. I absolutely sympathize w/ those w/Long Covid but please stop pretending we don’t exist. There’s a long history of ME, POTS - mostly of being ignored.
@SkinnerPm
Theresa is awesome! This is hard work born from love. One note: as it’s always been made clear here we can’t contribute to this cause, check for your local TNR group - most communities have them. If not, Ally Cat Allies (NYC) is a feral cat group that educates nationwide. 💕🐾
@FrickerAlice
“In addition to the fact that this theory has been disproven, the word deconditioning implies blame. I’m sure you mean it’s the disease(s) that has caused the lack of physical fitness. No educated doctor would blame a patient who is this sick for not staying in shape”
#pwME
My neurologist wants to try IVIG to see if it will help with small fiber neuropathy and autoimmune conditions which he does not have a diagnostic name for. Mobility is almost completely impaired. Has anyone had experience with IVIG?
@bennessb
Thank you!
@SabineHermisson
💔 There are no words. I am older and struggling with ME/CFS. But a child? Your child. My heart goes out to her, and to you, as the phenomenal parents you are. Breaks my heart.
@NickGuthe
@POTUS
@WHCOVIDResponse
@CDCDirector
I’m so sorry to hear this. This has been ignored for so long - I’ve hoped with Long Covid they might pay it more attention. I have small fiber neuropathy and general neuropathy with my ME/CFS which causes staggering pain in legs and feet. Very sad to hear this. 💔
@alexandrite113
This is serious abuse. Much less impactful, my brother & mother did this but I’m older, I didn’t live with them or need $ support. My hope for you 1. Don’t let it dampen your spirit. It’s about them. 2. That you get better. 3. That you are able to be independent & go no contact.
@Anne_Vroeg
This is a vital question. Who cares for us? No one? Parents, grown children, partners? And where do we get our financial support. This belongs in every article about ME & long Covid. I hope to make this my project soon (from my couch). It’s an unspoken part of our disease.
“SFN is common in Sjogrens patients & it is quite debilitating.” Despite this fact & the prevalence of the other symptoms listed below, doctors don’t test for and are not knowledgeable about Sjogren’s. This causes ongoing deterioration.
#Sjogren
’s
@foojafa
I’m so sorry. I believe I know how you feel. For 6 years I’ve been debilitated by MECFS. Very similar symptoms as long Covid, though I hope yours resolves sooner. You’re not alone. Our society is made for well & active people. Even our friends are remiss. Hugs from one who cares.
@hopefullizzy
Ah sweet Lizzy - I always read your posts. With a disease that saps all you have so much of the time, you maintain grace and extend a hand in love. I so admire you. I don’t know the answer to your question, & I’m there myself, tho older. I send you hugs & warm thoughts❤️
#MECFS
If you haven’t read “A Sudden Illness” by Laura Hillenbrand, please do. “My world narrowed down to my bed and my window. I could no longer walk the length of my street. My hair was starting to fall out.”
#ME
🙏🏾
@markeology
So many good suggestions here! Being out in nature was my peace, my therapy. The loss has been so painful. I have big windows & can watch the sunset & moon. My cats help. I spend a lot of time watching.
@hopefullizzy
celebrates small pieces of nature in the most beautiful way.
My last post was about the ableism of my brother. I want to clarify that I was pointing out the stigma attached to
#ME
&
#LC
&
#disability
. I was fortunate to be independent. People who are living with family who deny or mock their illness are at risk & need our support. 💔😔
@chydorina
@remissionbiome
Yes! So many of us have been told over & over (until we quit going to the doctor) that all our blood test results (among other tests) are perfectly normal. So we go home and keep getting sicker until we stay home for good.
#ME
How often do you have to summon the energy to do an *attitude reset*?
I’m currently even worse than usual - severe
#PEM
. I wonder how I can get worse
What caused the
#PEM
? Two days ago I was singing - 2 songs
Now I’m so discouraged. Attitude reset but out of energy.
#ME
@stoneyybaloneyy
But what about adoption? There are children who are already here, or will be here, in need of parent(s). I understand not wanting to bring children into this world primarily based on catastrophic outcomes due to climate change. Adoption is an option.
@DisabledDoctor
Please don’t let anyone make you feel less than you are. You are a complete full wonderful person and if she has a problem which she clearly does it’s not on you. I’m so very sorry. I’ve lived through it and it broke me down and then I finally set my boundaries. Hugs.
@svershbow
Oh, he’s beautiful and so dignified! Love his sweater. We adopted Baxter 6 months ago. He’s ten years old. His 3rd bed arrived a few weeks ago. We think he likes it. ('dignified’ isn’t the appropriate description)💕🐾 🙄
Please read this informative and important thread on the topic of emotional regulation and
#ME
written by
@ChronicMyalgicE
, who was a child psychologist before becoming sick with
#ME
. If you’re sick, if you’re a carer, this matters. 💔
#ME
A 🧵 about
#MECFS
and emotion regulation.
Before I got sick I worked as a child psychologist. During my studies (I studied neuropsychology and medical psychology) and my work I learned a lot about how to regulate emotions and what different coping mechanisms people use 👇🏼
“Disease Begins Before Diagnosis” Compelling, compassionate text of TEDx talk by
@bennessb
on chronic illness and the diagnostic process. A must read for anyone struggling with chronic illness.
#chronicillness
Okay friends, I'm excited to finally share the text of my TEDx talk about chronic illness & the diagnostic process.
If you've been through this yourself (or are going through it right now), I hope I've captured some small sliver of your experience.
@alexandrite113
Have u done any modeling Amy? The last couple pictures you’ve posted have been amazing. You’re so strikingly beautiful. I’ve thought ‘these are model worthy pics’. Also, our mothers are often the last people to acknowledge beauty in us-it’s about them.
“But when it comes to the people eagerly carrying out Donald Trump’s policies toward immigrant children, yeah, they’re objectively monsters. They’re also rapidly accelerating their efforts.”
#OperationSaveTheChildren
@SkinnerPm
Sending loving caring thoughts. For so many of us MeanCat is family; please let us help. The financial burden will be willingly shared as expressed by others also. 💕
What would you be if you didn’t have ME?
Me:
-Cyclist
-Hiker (Goal: PCT)
-Still practicing law but part time - now completely focused on disability discrimination 👊🏽
-Working w/ my animal rescue group
-Running agility with a new Border Collie
- Find partner 🤷♀️
@Mormolykeia
PEM can be as severe as you’re describing. The first “worst” after doing too much, feeling too much, is scarier than it’s already been. For me, and others I’ve talked to, radical rest is the only option. Doing nothing, if possible, waiting to regain baseline. The body insists❤️💔
@ScholarlyMouse
@ruairieeee
Yup. I was full of sympathy (severe ME here) but am getting tired of the anger, impatience, & the ‘we come first, we get help NOW, it’s been 2 years.” Try 30 years. Try young people who never experienced their young life. Try 40 + years in bed. Educate yourself & join up.
“To try is to sink deeper.” This is the cruel paradox of
#LC
and
#ME
. We’ve all been able to work hard enough, give our all, do what’s needed, to move on in our lives. These illnesses demand that we stop even trying to get better. Trying makes us so much sicker.
#PEM
#LC
#ME
@hopefullizzy
Oh Lizzy. Heart-rending. It’s hard enough & then feeling even more poorly brings the spirit down. You burn so brightly but you have every right to feel the deep sadness. Rest, know you have understanding, caring, hugs. And sending you some friends for hugs. ❤️❤️
@SkinnerPm
@washingtonpost
“Because right now, before Uvalde and after Uvalde, our national best-case scenario is hoping that cops or perhaps teachers will run into a room and shoot a guy who is shooting children. That has never worked and it never will.” Yes! Thank you! Please keep writing.
@PreetBharara
@SawyerBlatz
My LT disability carrier did this. The rep came across the country. I specified that I was too weak to talk more than an hour a day, w/ breaks as needed. I lay on the couch the entire time. It took 3 days for him to get all my info. I never stood up. I was that sick. Do that.
@michaelmantzmd
My father (a scientist not an MD) lectured me forever to gargle with warm water and salt water when I had a cold or sore throat & just in general. I still gargle & of course I lectured my kids. Thanks, Dad! ❤️ I’m glad they’ve made this discovery!
#ME
@DeathCab4Callie
Did they offer this to you as a formal settlement offer? Written letter from their attorney(s) spelling out the specific terms of a proposed settlement agreement and did they call it a proposed settlement agreement?
Additionally, I didn’t have to stand up to see the bird feeders. It was the emotion that made me even worse than I already am. It was waking to anticipation, to a new feeling. Many with
#ME
report sadness, anger, crying, as being too draining. And this as well.
#ME
@PhoebsBo
What an outstanding paper! And by a 12 yr old! Amelia was already an accomplished writer & so knowledgeable about
#ME
. She knew more about ME than my doctors! With permission, I’d like to give a copy of this to my neurologist. 😏Keep going Amelia! And you must be one proud Aunt!
@DisabledDoctor
Oh I’m so very sorry this happened to you. I have that mother too except that she talks to my brother about me when she thinks I’m not listening and I’ve broke in off contact with her completely so she can’t talk to me anymore.
@Kohls
Hey
@kohls
! Terrible customer service on the phone. Didn’t apply my coupon on order, rep was useless & then the connection ended - no call back. So much for your 30% off coupons ☹️
@MarkMooch
I don’t think anyone with ME is being well represented. And elderly? We surely have a shorter life span. Also older folks aren’t on social media the way we are (I’m 65). As we get older & weaker how do we text? Who speaks for us w/ family gone? Elderly people already ignored. 😔
@therealmecfs
@hopefullizzy
I absolutely agree. People talk about how the demise of Twitter will get them out of their phones. This is so ableist. The disabled community can’t get out into the world. This is the way we meet people, talk to friends, and are able to be out in the world.
@SkinnerPm
That’s wonderful to see! We weren’t so good at this. Adopted a 10 yr old 75 pd pitbull mix 2 mths ago. He seemed gentle with the 4 cats so we let them be together in the house. Sadly, there have been 2 incidents of BLOOD and carnage. I’m having words with the perpetrator.
@allietrann
@SoberCannibal
Can you just let me know what kind and model it is please? I’m in New York but I’m looking for something exactly like that and would like to look it up. Thank you so much.
@chydorina
@ProdromeScience
@remissionbiome
Just about everyone can’t afford the staggeringly high cost for even one bottle. What is the point if it can’t be used be the majority of the target patients?
@SkinnerPm
Logic games have nothing to do with understanding the problem and everything to do with knowing which graph, circle, chart, to draw and make use of.
@jenbrea
@Dysautonomia
@vijayiyer312
@jenbrea
I’m so glad you’re adding your extensive knowledge to these discussions. ME, POTS, all getting lost or misrepresented among the Long Covid discussion (that discussion is of course needed but we with ME, POTS, etc are still here) 💕
👏🏼👏🏼👏🏼Billboard advocacy!Please look at the 🧵of the newly placed billboards in the UK! This group is doing fantastic and much needed advocacy work for
#LC
and
#ME
. Please read and retweet. This matters.
Hello everyone, we are excited to announce that the first four billboards have gone up, with the final board from this batch due to go up tomorrow.
5 Billboards for 2 weeks
Second 5 billboards go up from 18th
Please RT, share.
#longcovid
#MECFS
@tonytheauthor
Beautiful! Spiders fascinate me. They are also, as you note, so good for the environment. I never kill a spider - I just catch him/her carefully & put it safely outside. If it’s winter, down the unused hall they go. I taught my kids the same thing. Why do we fear them?
@daveunderwood
@SrslyNotBoring
@IreneGuesta
@jenbrea
These stories are horrific. The medical profession acts so entitled and ‘could care less.’ Not on the same scale but I have been running a high fever for 10 days. Neg COVID test. My doctors’ office won’t see me as “they are not seeing anyone who is sick.” Why become a doctor??
An *outstanding* thread about “why doctors/researchers fail to identify most of the neurologic involvement in Sjogrens.” I have so many of these conditions, yet as described testing had been so subpar, & therefore no treatment.
#Sjogren
’s
A 🧵 re Why doctors/researchers fail to identify most of the neurologic involvement in Sjogrens. Most doctors are not being taught how to identify it & often 1st line Neurologic tests can appear unremarkable & 2nd line tests (which can detect it) are infrequently pursued.
@PunkPioneersJen
@Kate_Dancingcat
Wow. I don’t even know who you are but I know now I don’t like you. She all but apologized twice when she didn’t owe your aggressive accusations an apology at all. Do you know how to politely ask a simple question? You don’t belong here IMO. Try an apology.
@pamelarbishop
@lincolnfingroup
Argh. Go after the company. You’re clearly not fit to do any job available. They do this when they see you’re having trouble getting Social Security disability.
They want to be paid back but it’s not in the policy that they must be paid back, only that you must apply.
Today I have lost my beloved Quinn. I helped him move on from this world of old age and painful illness. And I am shattered and will never be the same. 🐶💔🙏
@hopefullizzy
Sweet Lizzy - you are so right.
#ItsNotOk
that you felt guilty & grateful, or that any real justice is so sorely lacking. If it helps, please remember that because you spoke up, other girls will find the strength to do so. And now, as then, you are a beacon of courage & change.
An HHS official tells
@weijia
that there will NOT be special efforts made to reunite children who have already been separated from their families bc of the Zero Tolerance Policy, despite Trumps EO. Process will proceed for minors currently in the unaccompanied children program.
@the_tweedy
1/2 So true! At my daughter’s University, she is expected to do all the work for the disabilities resource office, including sending her accommodations letter to professors each semester and securing the professors’ permission to use her accommodations.
@Bradgolf1216
This is so true! ENT for tinnitus - nope. GI for IBS and related issues- nope. Neurology and Cardiology - dysautonomia & POTS - they say ‘what is that?’ You get to the point where you realize these doctors don’t care. Read, *at least* please doc. It’s OK, it’s just my life. 🙄
@bennessb
After 4 years I no longer expect to get better. And now my definition of getting better would simply be able to be able to provide for my children until they are old enough to make it on their own. To be able to pay the mortgage and make sure they make it. But I’m failing. Again
This is such an impressive billboard project in the UK. I’m a bit late - voting for the billboard locations is now closed. But follow the thread to see possible locations. This is such an important campaign. Hat off to
@AaronCa11
#BillboardNews
#LC
#ME
Hi guys there are the first options for the UK Billboard campaign. In total after GoFundMe deductions (screenshot attached) we are working with a budget of £5,640 which should guarantee roughly 10-12 billboards of a size 48 sheet for a 2 week period with 24/7 exposure.
@FaithOxenbridge
The blame game - we are lazy, we are on the take, we are faking - all this is so crazy because…. Look at what we were doing before we got sick!!! I don’t see people who were sitting around hoping to get money, do nothing. It’s infuriating to be ignored and stigmatized.
@svershbow
Simon needs a “princely robe” (or 2)! We keep our house cold, and when Quinn was alive, he had two of them, one red, and one green. In the winter he wore them inside. 💕
@hopefullizzy
Oh ignore & block him pls. It’s hard enough without people trying to hurt you. You’re on a good path and so right to be hopeful. Of course this hurt! Now deal with this mean person who is the exact opposite of you - you shower hope, love, caring on all. Be kind to yourself. ❤️🦄
@MaryLandersSMN
@SkinnerPm
Ahh the cat tree trick! They ignore it for months on end, then suddenly for no apparent reason (not moved outside!) they have moved back in.
@NeleHelena
Yes! Hate it. The amount of time I’ve spent researching what I might have is absurd. And wow - it’s all available on line (at least a description, no cure) only to have the doctors tell me they’ve never heard of it (ME, POTS, insert here). I read. Don’t they?
#ME
#LC
I have had a engraved piece on my nightstand for 21 years. Times were tough. It says “What would you attempt to do if you knew you could not fail” I knew & I did it. Everything & anything necessary to get me & my children through. But
#ME
? This was the wrong answer.
#ME
#LC
💔