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/
He is not faultless, nor is a Saint. He has, however, worked hard to accept his mistakes, learn from them, make amends & be a better man every day. He deserves more happiness than he now has & I will do everything in my power to get there. 3/
If you have #LongCovid or have #chronicillness and feel hopeless, please know that you are not alone. Tomorrow I will be in bed with PEM & crying in pain but I'm lucky enough to have had today. I hope you can also have days like these. 4/
I always thank my mother in law on Anand's birthday- for giving birth to & raising a wonderful human being. This birthday is hard, as Anand father is no longer with us, but I see Anand becoming more & more like the great man every day. :)
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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/
6. Ask for a pulmonoloog & rheumataloog referrals. Insist on an autoimmune panel - UMC Utrecht has post Covid autoimmune specialisations. It is an uphill task but possible. 7. If your 6 minute Walking test is below 92 SpO2, you are entitled to an oxygen concentrator at home. 3/
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/
Why would millions of people sit at home, losing their appetites, mobility, health, livelihood (and lives, sadly, in some cases) after contracting Covid without an actual biological/physical cause? They cannot all be depressed, surely? 3/
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/
It is starting to look like our home slowly. Truly decluttering this time & giving stuff away instead of just putting them in a place I can't see. We are redoing our bedroom to look less like a patient's room & a place that I will truly love to be in. 3/
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/
It has taken years of therapy and living through endless struggles to realise what a good (albeit flawed) person I am - someone who never gives up & is always there for those who need me. That is enough. That should be enough. 3/
#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
Weekly IV infusions with Saline at home. Pulmonary rehabilitation. Eyes checked - connective tissue degeneration- tear film corrected with refresh tears & gel, special glasses & convergence exercises given.
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/
Going on the pill gave a migraine for nearly 3 weeks that needed morphine to even just breathe. No wonder! BCP are known to make intracranial pressure worse, which is not ideal if you have a partially or fully empty sella. 3/