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/ 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/

I've a question for #KathaAnkahee fans & I hope my head will not be bitten off! Does it appear incongruous that Katha has not yet checked who Robin is? I'm the mother of a child with chronic illness (+I was working full time before I became disabled) so this is from experience 1/ 1 - I would never send him to any class without an adult to supervise. 2 - I would warn him against speaking to, much less trusting, strangers. 3. If he mentions such conversations, I would go with him to check on this person & find out more. 2/

#LongCovid treatment update:
As promised to my fellow #NEISVoid folks, here is a full list of my medicines, supplements, medical devices & rehabilitation in my recovery journey.
1. #POTS (Hyperadrenergic) - Ivabradine, Amlodipine, IV Saline (every 7 to 10 days as needed). 1/ 2. #MCAS - Desloratadine, Montelukast, Cromolyn Sodium (Cetrizine + Prednisolone for rescue)
3. Rheumatoid Arthritis - Methotrexate, Paracetamol, Diclofenac Cream
4. #asthma - Budesonide/Formeterol, Ipratropium Bromide, Salbutamol (Rescue) 2/

I really wish I'd paid more attention to biology & chemistry in school! Learning about the pharmacodynamic & pharmacokinetic properties of medications is truly fascinating. I'm so enamored by the cytochrome P450 family of enzymes & the highly important CYP3A4. 1/ #NEISVoid There is a long list of drugs which are either substrates, inhibitors and inducers of CYP3A4, which determines how these drugs are metabolised. Grapefruit juice can also inhibit this enzyme, which when coupled with a moderate or strong CYP3A4 inhibitor drug can be dangerous. 2/

"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 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

If you have #LongCovid & are married/in a relationship, please sit down and have a chat with your partner - about your symptoms, what you can & cannot do, how they can help you. 1/ Your relationship will be affected. It will change beyond recognition. With some effort though, it can be a good change that will help your recovery & solidify your relationship. 2/

If you have #LongCovid & live in the Netherlands, here are the things that you are entitled to:
1. Physiotherapy for 6 months to 1 year even if you don't have aanvullendeverzekering (might change from Jan 2023) with home visit.
2. Occupational therapist (with home visit) 1/ 3. Trippelstoel (through insurance, with help from OT)
4. Wheelchair and traplift from WMO, if your huisarts & OT give detailed letters supporting it
5. Ask for a referral to a Hartkliniek Cardioloog if #POTS is suspected. 2/

On this day last year, on the eve of my husband's birthday, we all felt hopeless. #LongCovid had taken almost everything away from me & I wanted to die. Today, I cooked him his favourite meal & danced with him. I didn't realise how happy we were until I watched this! #NEISvoid 1/ @anandkumarn is a remarkable man. Smart, intelligent, charming, kind to a fault, fiercely protective of his family, a wonderful son & father, a well respected professional. He is the most loving & devoted husband a girl can dream of - a true partner & a prince among men. 2/

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/ The world has not seen a pandemic on the scale of what #COVID19 caused (last was the Spanish flu) and by definition, you have not seen mass disability on the scale of what #LongCovid has been causing. Use your brains and empathy - if you have either of them - & think! 2/

I used to declutter every three to four months, until #chronicillness happened. When I came back to our home in NL after my treatment in India, I was shocked to see how it looked. It was nothing like the home that @anandkumarn & I had lovingly built together. 1/ Still, I didn't want to jeopardise my hard worn health (I hesitate to call it recovery as I'm in bed 50% of the day - I was 90% in bed before). So with the help of a lovely lady who is helping us, I've been tackling inch by inch. 2/

Today is my appa's birthday and of course I wished him good health & peace, expressing my love. He said something that shook me: "You've made me worthy of my life." 1/ #parenting As someone who grew up with a yearning for approval from my father, this should have felt amazing. Strangely, it didn't. I mean it felt nice to hear, sure, but I felt no sense of achievement or pride or vindication. That, to me, is the true achievement here! 2/

#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 Started on Methotrexate after all vaccinations. GI motility treated with Prucalopride.
Lung perfusion abnormalities but no cause detected (#microclots in blood) - treated with budesonide + tiatropium inhalers, ipratropium nebuliser & supplemental oxygen. #NEISvoid

22 months ago, when my brain MRI showed partially empty sella, I asked 5 doctors if it had anything to do with my symptoms. I was dismissed instantly with not a single ounce of consideration. #NEISvoid #MedTwitter 1/ This was despite the fact that I was starting to show hormonal changes. As my symptoms progressed & I was sent from one specialist to another, no one bothered to see if they had a hormonal basis - including 3 endocrinologists & a gynec- except to ask me to go on the pill. 2/

Today's #MyEDSChallenge is about doctors/nurses.
Epidemics, Book I, of the Hippocratic school says to doctors: "Practice two things in your dealings with disease: either help or do not harm the patient". Every chronic illness patient has seen doctors who have violated this. 1/6 First there were the doctors who didn't even bother to see us. Next the ones who saw but didn't care enough to do anything. After that came the ones who didn't know what they were doing but did it anyway, our bodies & minds be damned. 2/6 #MyEDSChallenge #NEISVoid

#NEISvoid, #ParentingwithPain chat is this Saturday, 15 May, 6 - 7 PM CET. You can find the #twitterchat guidelines: apainfulidentity.com/uncategorized/…
Q1: How do you prepare your child(ren) for the uncertainty that chronic illness causes in your life (cancelled plans, for ex)? 1/3 Q2: Have you had to take your child(ren) to your medical appointments? How did you handle it? Were they overwhelmed?
Q3: If you are in a relationship, how do you divide your parenting tasks? Is there any resentment from your partner on how this is done? 2/3 #ParentingwithPain