Renuka Dhinakaran
@renudhinakaran
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International Labour Lawyer Patient Advocate for #hEDS #POTS #LongCovid #rheumatoidarthritis #Dysautonomia Focusing on marriage, parenting & chronic illness
Joined January 2010
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Last Seen Profiles
Pinned Tweet
#LongCovid
recovery story is long but short notes here:
#POTS
confirmed with heart rate variability test & started on Ivabradine.
#MCAS
treated based on clinical symptoms with Desloratadine, Famotadine, Montelukast-Cetrizine
#autoimmune
assays done -
#rheumatoidarthritis
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My aunt was institutionalised on account of severe panic attacks, anxiety & self harm tendencies. My father, who believed his sister when she said it happened only around her menstrual cycle, took her out of that place (against her husband's wishes) & found a gynecologist. 1/
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She was found to have severe lesions in her uterus (this was 30 years ago, endometriosis was not a term my father said the doctor used) and was advised to have a hysterectomy. My mother nursed her in our home after the surgery. In 2 months, she was a totally different person. 2/
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You would think that after all this time patients would be believed but no! I wasn't believed for nearly 25 years! However, thanks to my idiotic persistence (as my father calls it), 3 generations of my family now have a diagnosis of hypermobility. 5/
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#MedTwitter
- Doctors, please listen to your patients. Please trust us when we say what is happening in our body. Do not discount everything as being related to mental health. Please pay us the courtesy of assessing our symptoms objectively & do a differential diagnosis.
#NEISVoid
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She broke down in tears saying that for nearly 60 years no one believed her when she said her bones were moving and cracking. She also has POTS (all my aunts do, as did my grandmother) & has had dizziness for as long as I can remember. 4/
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My son was diagnosed when he was 9 because of this & has a great team of medical professionals taking care of him. He will not sit for more than one appointment with a doctor who does not believe his pain, knows his rights as a patient, will not take any medical gaslighting! 6/
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In real life, if this patient happens to be a woman, she will be sent home with a recommendation to see a psychologist.
Patient with these symptoms, diarrhoea and normal TSH. What’s the diagnosis?
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2 years ago, when I received my hEDS diagnosis, I called her & explained about it. My father, once again, took her to a rheumatologist who confirmed that she was definitely hypermobile (which is why it took a long time for her to get an arthritis diagnosis). 3/
5
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16K
I told my husband that thanks to
#LongCovid
, I don't think I'll ever want to be physically intimate again & asked him if he wanted an open marriage. He burst out laughing & replied: "I'm too lazy for that. It is too much work." He gave me a hug & walked away. 1/
#marriage
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@truthisjustice2
@CounsellingSam
My parents could not always get me the help I needed but they never, ever doubted my physical complaints.
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We don't talk about the sexual aspect of our chronically ill lives enough. The stigma is on a whole other level. I'm grateful to have a husband who couldn't give a lesser damn about anything other than the smile on my face. 2/
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@jedimentat
He was not a bad person. He was working hard and caring for their sons. He really didn't have the education or exposure to deal with doctors. He has been her carer for two decades now. Loyal and devoted to the core.
3
5
2K
I signed the final documents to close my law practice today.
#LongCovid
has taken away from me everything that I worked hard for & was proud of. Although I am grateful to have the love of my family & a few good friends, today is not the day to be positive but a day to grieve. 1/
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Stop doing standard tests on
#LongCovid
patients and claim that they are physically alright because the results are normal. Medicine & Science have not bothered to develop proper biomarkers for post viral illnesses for decades, ignoring the pleas from patients, including
#pwme
.1/
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1K
My cardiologist's assistant emailed me saying they have a new influx of
#POTS
patients and can I please share with them how I got my insurance to cover home IV Saline infusions. 🤦♀️This country has no idea what has hit its medical system.
#NEISvoid
#Nederland
#LongCovid
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@johopkins116
I'm very sorry! Glad to hear you are better now. My uncle is a wonderful, devoted husband who has been my aunt's carer for 2 decades now. He didn't have the education or exposure to fight with doctors while also working & caring for his sons.
2
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If you have
#LongCovid
, please for the love of all that is holy, don't accept Cognitive Behavioural Therapy as the whole of your treatment. CBT may be helpful in some respects (it is) but your problem is most likely systemic viral persistence or autoimmunity, not your behaviour!
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Thinking of the time when I was pregnant, vomited 22 times on a day (average- 15 times/day), crawling to the restroom as I couldn't walk. I lost 3 kilos in my 1st trimester. I most likely had hyperemesis gravidadum. All my Dutch GP said was : Why this drama? All women have this.
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Why isn't there an entire mandatory course about post viral illnesses in med schools? Seriously!
#MedTwitter
#LongCovid
#pwME
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@forestvanslyke
Perhaps but the pain she had- I still remember. She lived across our house & would be writhing on the floor holding her lower abdomen for nearly a week every month. She has postural tachychardia & Orthostatic intolerance like me plus extremely hypermobile.
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Okay this has gone far beyond
#NEISvoid
and I can't handle the antivaxxers, Covid deniers, people calling me frigid or my husband a cheater. Shutting off replies! To those who have shared kind words, especially to my husband & about our love, thank you very much!
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"Mommy, sometimes a part of me feels like it would be easier to have a different mommy. Not always and not me fully. Am I hurting you by saying this?" I have been preparing for 2 years to answer this question & I aced it!
#parenting
in
#NEISVoid
#LongCovid
#motherhood
🧵1/n
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@SnoozyWeiss
What motivates a person to write something so vile and further stigmatise a community that is already suffering so badly?
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4 people from
@chennaicorp
have called me, making me repeat my case again, when I'm running low on oxygen, but no help. My temporary O2 concentrator (pulse) has 2 hours left. SpO2 has dropped to 94. May God have mercy on me.
#ChennaiFloods
#Cyclone
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Chronic illness patients can benefit from regular IV Saline, unless they have a condition for which it is contraindicated. I will die on this hill. IV Saline is giving me some quality of life as opposed to the misery I was living in.
#NEISvoid
#chronicillness
#LongCovid
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She works with a network of ER nurses & over half of them have started doing this. Dutch insurance companies are going to hate me really soon (more than they do now). These nurses keep asking me for papers, doctor references that they can share with the patients. God bless them!
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My parents have been masking religiously & ensure that everyone who enters our home is masked. They do this with zero whinging because their love for their daughter is unconditional. Every immune compromised person deserves a support system like this.
#NEISvoid
#Covid
#LongCovid
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Chronically ill patients need a medical administrator/secretary/assistant to stay on top of things. Why isn't this a thing? If it is already, where can I get this service?
#NEISVoid
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If there is one account I'd request every single user here to follow, it would be the
@AuschwitzMuseum
. The work they do is truly remarkable and it reminds us of our duty to speak up when injustice occurs, lest innocent lives be lost.
This year we are hoping to reach 1,5 million followers.
Will you help?
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After 15 months of living with
#LongCovid
, I washed my hair on my own for the first time. I dobt know how hard PEM will hit me (& I have plenty of rest scheduled) but just the fact that I could do it, listening to my old playlist, means a lot to me.
#NEISvoid
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#MedTwitter
For the love of all that is holy, please treat your
#LongCovid
patients with every weapon in your armory. Treat their
#POTS
, given them inhalers & supplemental O2, calm down any inflammation in their body, stabilise their mast cells. This part is not rocket science!
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EDS can cause dysphagia. Not many doctors realise that. Our muscles are working so hard to keep our neck in place that they can't cooperate during swallowing. This is how you end up with tiny specks of semolina stuck in your throat for days!
#EDS
#MedTwitter
#NEISvoid
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Why is there so little discussion on sex/intimacy while living with chronic illnesses?
#NEISvoid
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I know people have always felt bad for "Harry, the little boy" after Diana's death but seem to forget that William suffered too. Watching
#TheCrown
, I feel awful for William who was at an age where he understood everything but could do nothing and had to be a rock.
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#POTS
friendly dance on a horrible pain day.
#chronicillness
has taken a lot of things away from me, but not love. In sickness & in health, with
@anandkumarn
. This is love in
#NEISvoid
.
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@lawandnation
This is such a simplistic take, so far removed from reality. I live in an area inhabited mostly by Hindus. 90% of them will not rent their home out to muslims or even "non-vegetarians". What are these folks supposed to do?
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@chennaicorp
@chennaiweather
@praddy06
@mkstalin
- Is there any plan to evacuate sick people? I'm an oxygen dependent patient in Nanganallur with no electricity. Can you please help evacuate me to a hospital?
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I will never truly understand 3.50 am wake up. Is it the histamine dump? Is it a tired liver? Is it dysautonomia? Hormone? All of the above?
#NEISvoid
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He said he was fully prepared to accept that I will be upset but wasn't surprised I when I didn't get upset. Then he said "You know what mommy, I don't think this conversation would have gone so with any other mommy. I'm glad I have you as my mommy." 6/n
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Heartbreaking to see the reddit threads by doctors not believing their young, female patients predominantly with
#LongCovid
. Is this a western thing? In India (ok chennai at least) doctors may not be very keen on a diagnosis but they at least treat symptoms.
#NEISvoid
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@JBislokdupghost
Happily married for over 14 years and will stay that way until death does us apart.
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He gave me a hug, a kiss and left the room humming the pokemon theme song. Reader, I won't lie. I left out a big sigh, relieved that it had gone well but then shut myself in my closet and cried. I should not have had to go through this. 7/n
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In all the medical shows that have episodes diagnosing
#RareDisease
they never show the years of
#Gaslighting
by doctors & the medical system or the years after that with no proper treatment and, mor importantly, the fight with insurance companies.
#NEISvoid
#MedTwitter
#TVShows
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@HyperLuigi37
@jedimentat
He genuinely thought taking her out would be harmful as he was the one who had to save her life every time she tried to take it! I can understand.
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We must really stop using the battle narrative when it comes to describing living with an illness, especially chronic illnesses. There is nothing to be gained by this narrative when your body is the enemy!
#NEISvoid
#chronicillness
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Nourez has turned out to be a hundred times better than Murtasim. He has trusted and communicated with Maryam in 1 night what Murtasim couldn't do with Meerab in almost 1 year!
#TereBin
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Being happily married while chronically ill is hard work, much harder than a marriage between healthy people. There are days when you will feel alone, like your partner doesn't get it. Then there are days when you will feel their love is what keeps you going. 1/
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An entire community & medical system's failure brought me to this position. How many mothers and fathers have had to have this conversation? How many husbands and wives? How many of those would have gone as well as mine did? 8/n
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I told my father I don't understand why I'm alive. He just sent me a one page handwritten note (photographed & by WhatsApp) on how I'm the best daughter known to humankind & he will be lost without me. Every
#chronicillness
patient deserves a family like this!
#NEISVoid
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If you are chronically ill & married/in a relationship or are married to/in a relationship with a chronically ill person, please have a sincere discussion about sleeping arrangements. A thread. 1/
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@txsalth2o
Actually, no. I have an excellent endocrinologist and this has been specifically tested and ruled out.
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I apologised - not for being ill - but for him to have to go through all this because there were zero mitigating measures in the community. I thanked him for doing all that he was to protect me and expressed my gratitude. Finally I reassured him that he had not upset me. 4/n
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I told him I was proud that he could express such a deep emotion to me without fear of being judged. We made a list of friends whose parents are cooperative (testing, masking)- he can have playdates with them. We decided to do a restaurant dinner at home with his favourites. 5/n
1
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Supplemental O2 is amazing for
#Dysautonomia
, especially
#POTS
.Post Covid POTS has been different. Keeping my HR under 110 while walking is only possible with O2. I'm lucky to have pulmonologists who acknowledged this even if they couldn't explain it.
#NEISVoid
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Falling down. Being Hurt. Getting up. Falling down again. Rinse. Repeat. This is how life with chronic illness is going to be. Might as well learn to cope with it in our own ways! I will not lie though - a part of my heart did break today. Not enough to break my spirit though. 10
12
8
331
If I hear one more time that I will "conquer" my
#chronicillness
& be my "bubbly self" again, im going to lose my s$**! We have to stop presenting illness as a battle to be won. Also which part of
#chronic
do people not understand?
#NEISvoid
#fibromyalgia
#MECFS
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My husband has been suffering as my health keeps declining. He hasn't laughed from his heart in years. Last night, he burst out laughing heartily. Apparently he was watching
#Decoupled
. Thank you
@ActorMadhavan
& team.
#carers
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If you have
#LongCovid
, staying with my parents for a month will miraculously increase your baseline. My mother's food will help your
#POTS
& my father's homeopathy meds will fix your gut. Their banters will improve your mental health, their prayers will heal your soul.
#NEISvoid
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5
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Things I did today: 10 mins yoga, 20 mins rehab exercises, 3.5 hours work, 30 mins homework my son, 45 mins phone calls, 30 mins admin work, 20 mins dinner with parents, 30 mins reading The Light We Carry, 1000 steps. A year ago, I was bedbound with
#LongCovid
. 1/
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#MedTwitter
Please listen to your patients. Believe them. Make every effort possible to diagnose them. Help them stay safe & sane until they get a diagnosis. If you cannot treat them, at least help them cope with their symptoms. Just show them you actually give a damn.
#NEISVoid
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In 2 months, my international law practice will be closed. I've recovered enough to be a decent mother to my son but not enough to be that & a lawyer - not without losing the gains of my hard won
#LongCovid
recovery. I thought I'll be ok but I'm not,
#NEISVoid
. I'm really not.
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I went on to explain that I was not upset. He simply wants to go on playdates with friends without worrying about infecting mommy & making her more sick, or go eat out in restaurants or not be the only kid in class masking. Any kid would want that, any adult would too! 3/n
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#TeamClots
- We've found a research lab in a reputed hospital that will help us check for micronclots using a fluorescence microscope & a friend is helping us source Thioflavin for us. Fingers, toes & everything crossed! With eternal gratitude to
@resiapretorius
@doctorasadkhan
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I get dressed up like this 4 times a year. Requires IV saline, physio, help from a carer, painkillers & a week of bed rest after. Had to today, for my son's 🎓. He chose the shoes & the bag to go with the outfit! Here is to keep the faith despite
#LongCovid
.
#NEISVoid
.
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My mother is going to be 62 next month. She is cooking 3 times a day for me because she does not believe in freezing food and she genuinely believes that four months of her food will fix me. I will take those odds!
#NEISvoid
#LongCovid
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"That doctor knew enough about hypermobility so fine, I'll listen to him about that but he says covid does not cause tiredness in kids after 10 months. Did he even see me? I can't work with him about that. Sorry." - 9 year old's verdict.
#NEISvoid
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I do know one thing though. I'm an incredibly resilient person with endless perseverance. Life is unfair and suffering is everywhere. While it is important to express our feelings, it is equally important to not dwell on them for too long & move on to finding solutions. 9/n
2
4
275
Not all
#POTS
patients present the same way. Hyperadrenergic POTS comes with high BP (& Tachycardia), which actually reduces with IV Saline - the opposite of what it does to normal people of Hypovolemic POTS patients.
#MedTwitter
really needs to know this!
#NEISvoid
19
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First, I lightened the mood my saying "believe me, I would like to be a different person as well, in a different body". He smiled immediately.
Next, I acknowledged that his thoughts were perfectly rational & had no malice at all. 2/n
2
1
267
#MedTwitter
In the name of all that is holy (or not), give your
#POTS
patients IV Saline. It will be the difference between existing and living. Post-viral illness (including
#LongCovid
) patients can also benefit greatly from this.
#NEISvoid
#pwME
9
54
264
I'm in so much pain. Head on my mother's lap and feet on my father's - being massaged. They were both working hard to not cry. No parent deserves this.
#LongCovid
#NEISvoid
#endometriosis
19
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262
If you have
#dysautonomia
a drop in body temperature could be one of the best indicators of an upcoming flare or even syncope.
#NEISvoid
#LongCovid
#POTS
18
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257
Dr. Bailey: "She was excited. She was hopeful. She was eager. And that has been crushed. She has the right to have some feelings. She can be positive tomorrow."
#NEISVoid
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261
#NEISvoid
I'm a lawyer and want to use my skills to create a patient advocacy organisation focusing on chronic illnesses. Where do I start?
56
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It is shocking to realise that even places meant for sick people, like hospitals, are made for abled sick people. No taking into account of whether you can swallow a pill or not, your anxiety or putting you in a room with bright lights can trigger a migraine!
#NEISvoid
18
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246
Went for a walk after a week. A kilometer in 15 minutes (without supplemental O2) listening to my walking playlist, which I haven't used in 15 months. I didn't think this day would come. My doctors here are magicians!
#NEISvoid
#LongCovid
#EDS
#POTS
#DisabilityTwitter
13
15
249
I got yelled at by parents this morning for suggesting that I've improved enough to make own dinner. "You can cook when we say you are ready." I'm 38 years old folks. People ask me what the secret behind my
#LongCovid
improvement is. This is it.
#NEISvoid
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BP before IV Saline 150/105
After 2 hours: 135/87
This is the opposite of what you will learn in med school
#MedTwitter
. Hyper POTS is different.
#POTS
#NEISvoid
7
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240
@DNicholsAuthor
In sickness and in health.
Context: I'm a chronic illness patient (
#EDSAwarenessMonth
) & my wonderful husband is my carer.
5
1
241
In my entire journey as a chronic illness patient, I've met exactly 3 doctors who did not gaslight me even one bit. To think that there are so many in
#NEISvoid
who have not met even one is just so outrageous, inhuman and heartbreaking.
#medtwitter
13
54
241
Didn't think I'd ever have a "stroll in the park with family" kind of day ever again in my life with
#LongCovid
yet here I am, strolling in the park with my boys. It has taken 14 months of treatment with 12 specialists to get here - walking 15 minutes.
#NEISvoid
14
7
247
My son is hypermobile. He sensed a headache coming this morning, asked me to see if he had a nodule in his neck muscles (he did) & remove them (I did), put a warm towel around his neck, stretched a bit, took paracetamol, rested for an hour & went about his business.
#NEISvoid
5
5
238
There is only one thing I've learned from years of living with co-morbid chronic illnesses & fighting medical systems: Trust your instincts & stick to your guns. Every time I've gone against my instinct just to be a "good" patient, I've ended up in serious danger.
#NEISvoid
5
41
241
@timnitGebru
This happens a lot, especially for women & minorities - including in places like international organizations. I'm a labour lawyer & I just wrote up a basic legal analysis - not sure who to send it to. Wrote it from my bed while on sick leave. Couldn't be silent
#IStandWithTimnit
2
6
241
@ayoomaani
@jedimentat
He most certainly is not. He has been by her side for 50 years! He is in his 70s now but is still her full time carer. Don't talk about things you don't understand.
2
0
232
If you are chronically ill & married/in a relationship, there will be days when you will inevitably snap at your partner (a bad pain day, a medical appointment gone wrong). No matter how many conversations you may have had about handling such days, it will still be hard. 1/
6
15
231
I wish there was a way to explain to people, especially doctors, that a dysautonomia episode is quite different from a panic attack. You just cannot calm your way out!
#NEISvoid
#chronicillness
#EDS
#dysautonomia
8
32
227
If you are chronically ill & are feeling guilty today about it stopping you from being a good child, partner, parent, friend - stop right there. Remind yourself of all the things that your body & mind have withstood, while still managing to hold on to love & compassion.
#NEISVoid
9
52
232
@AlyssaMcWillia5
Probably but they will not have rheumatoid arthritis, Endometriosis, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndtome.
6
3
228
If you are new to chronic illness, thanks to
#LongCovid
, please remember that you will have to live two lives simultaneously- one hopeful about the future & another accepting the present reality. It is a fine line to walk that is designed to trip you but it is possible.
#NEISvoid
8
30
223