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I haven& #39;t talked to many people about this & it& #39;s quite a personal thread to post. But since I& #39;m amazed by how few are aware of #LongCovid, & having been through a very lonely & traumatic time, this is an attempt to try to reduce some of the long-haul stigma Iâve felt 2/
I got a pretty bad cold end Feb; asked my GP if it could possibly be this new coronavirus, was told âno wayâ & to rest a few more days. I avoided the UCU picket line for a week, cancelled precious research ppts on non-strike days & a trip to London for the anti-cas conference 3/
My initial mild symptoms cleared up (I had no cough but probably a temperature, didn& #39;t even own a thermometer back then...) but still dread to think of who I mightâve come into contact with, despite being home as much as poss. No advice to isolate/get tested; it was still Feb 4/
After about two weeks, all cold-like symptoms had gone but the heartburn/reflux began. Itâs something Iâve experienced before, if never this severe, so didnât think too much of it, and started taking anti-reflux meds 5/
I continued to mostly stay home as Iâd been following the news from Italy, and basically self-isolated for 10 days before UK lockdown began. I decided to cancel a data collection trip to Edinburgh as a research assistant; a few days later most unis were closing anyway 6/
Around this time I noticed painful & itchy purple lesions on my feet, which I later realised had to be Covid toes 7/ #5b4ce0d0447f">https://www.forbes.com/sites/victoriaforster/2020/07/23/covid-toes-are-caused-by-coronavirus-infecting-the-lining-of-blood-vessels-says-new-study/ #5b4ce0d0447f">https://www.forbes.com/sites/vic...
[weight, no numbers]
Over the last 7 months I& #39;ve also experienced
https://abs.twimg.com/emoji/v2/... draggable="false" alt="đ„" title="Drum" aria-label="Emoji: Drum">: peripheral neuropathy, extreme fatigue, painful headaches, chest pain, postural tachycardia, palpitations, low-grade fevers, hair loss, weight loss, petechiae, broken veins.. Many coming & going inexplicably 8/
Over the last 7 months I& #39;ve also experienced
Some other common symptoms of #LongCovid are shown in this infographic:
[text in graphic looks readable by screen-readers] 9/ https://www.bloomberg.com/graphics/2020-opinion-covid-long-haulers-chronic-illness">https://www.bloomberg.com/graphics/...
[text in graphic looks readable by screen-readers] 9/ https://www.bloomberg.com/graphics/2020-opinion-covid-long-haulers-chronic-illness">https://www.bloomberg.com/graphics/...
By far my worst symptoms were gastrointestinal: from Apr-July I had brutal laryngeal acid reflux where I lost my voice daily; loose & pale stool for months & months on end. An endoscopy & other scans/tests showed nothing serious, but my GI symptoms have only recently improved 10/
Here& #39;s me in May, yet to discover the #gastrointestinal channel on the @itsbodypolitic Covid-19 Slack support group, thinking I just have reflux laryngitis & trying to ignore the numerous other things (going) wrong with my body... 11/ https://twitter.com/freya_watkins_/status/1263522297845080068">https://twitter.com/freya_wat...
[diet, restriction, weight no numbers]
At this point I had trouble swallowing, could barely eat or speak; the only thing that helped the reflux (for a while) was an extremely restrictive low-acid diet, which was pretty miserable having lost lots of weight already 12/
At this point I had trouble swallowing, could barely eat or speak; the only thing that helped the reflux (for a while) was an extremely restrictive low-acid diet, which was pretty miserable having lost lots of weight already 12/
Iâd tried to work from home for a few months now but could barely take part in any Zoom calls with no voice, even signing BSL was painful. Not to mention it being impossible to focus on PhD work with the headaches and crushing fatigue 13/ https://twitter.com/freya_watkins_/status/1263522294380597248">https://twitter.com/freya_wat...
With my limited energy Iâd also been trying to help campaign for funded extensions for disabled UKRC PhD students. I have MH problems but no pre-existing chronic illnesses. I& #39;ve now had a tiny insight into what long-term physical symptoms are like 14/ https://twitter.com/freya_watkins_/status/1279189922390462466">https://twitter.com/freya_wat...
By June I recognised I was too ill to work on my PhD & took a longer leave of absence to focus on recovery. At that point I hadnât yet accepted I had #LongCovid, but had begun to see some articles about others with diverse, long-lasting symptoms /15 https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/15/">https://www.theatlantic.com/health/ar...
Finding others with all the same long-term symptoms was a huge relief, but the lack of test/diagnosis of post-viral-anything meant I still doubted for a long time. I had a negative antigen test before my endoscopy (in June, so obviously). But over time evidence kept mounting /16
Worse than the terrifying symptom rollercoaster though is the denial & medical gaslighting. GPs would just firefight single symptoms, or declare âanxiety!â; eventually I gave up calling. Self-advocacy groups like https://www.wearebodypolitic.com/covid19 ">https://www.wearebodypolitic.com/covid19&q... or http://c19langzeitbeschwerden.de"> http://c19langzeitbeschwerden.de helped more 17/
Despite the validation of support groups, it& #39;s very scary having so much going on, not knowing what might indicate a serious condition etc. I& #39;m still not sure if/when some symptoms will totally subside, or if I have any long-term damage, as is the case for some long-haulers 18/
As things started to improve slightly in July, I was unsure whether to try to do more or just rest/pace. Lots of long-haulers seem to feel better only to relapse again; many are concerned about developing CFS / ME. I overdid it on one steeper walk & have avoided hills since 19/
A month ago I moved house & packing made me feel the weakest I& #39;ve ever felt, but thankfully didn& #39;t cause a proper relapse. I& #39;m still scared of overdoing it but in the past month I& #39;ve been moderately active e.g. on my bike again with no real problems or post-exertional malaise 20/
I& #39;m doing a lot, lot better than I was, but still having some reflux/chest pain/tachycardia (which tbh I had a bit pre-covid) plus a few other lingering symptoms I would like some reassurance about. Iâve learned a lot about bodies over the past half a year, but not enough...! 21/
Anyway, back to unis: the BUCU article highlights how universities are completing neglecting to #CountLongCovid in declaring campuses safe. Many younger (& it seems often extremely fit) people are susceptible to long-term symptoms, not that anyone should have to risk exposure 22/
I& #39;m extremely lucky I still had (some) paid sick leave of my studentship remaining this year: this is not the case for most (un-/)funded graduate students, or casualised TAs being forced back onto campus to teach 23/ https://www.theguardian.com/education/2020/sep/25/uk-universities-bullying-junior-staff-into-face-to-face-teaching">https://www.theguardian.com/education...
Many long-haulers outside academia have already been forced back to work, causing them to relapse. I know of people who have lost jobs, partners, & homes through #LongCovid. For many, maybe yet myself, it may become a disability. We still donât know enough to be so reckless 24/
If this sounds familiar & you want a chat, feel free to message, Iâll try to reply. I felt so alone in this time & it really sucked. This isnât an easy thing to share (I still barely post in the #LongCovid groups!) But starting to feel validated was a turning point for me. 25/25
P.S. I should add: I had some incredible support during this time particularly from my housemates during lockdown @alexmillertate & @remaekable https://abs.twimg.com/emoji/v2/... draggable="false" alt="đ" title="Zwei Herzen" aria-label="Emoji: Zwei Herzen">https://abs.twimg.com/emoji/v2/... draggable="false" alt="đ" title="Zwei Herzen" aria-label="Emoji: Zwei Herzen">, my therapist Mel, and I had a lovely chat with my supervisor @BodoWinter who really encouraged me to take the time I need
P.P.S. Solidarity also to my disabled/chronically ill/neurodivergent pals; the patient-led-researchers in @itsbodypolitic and long-haulers in other Long Covid groups who have kept me going https://abs.twimg.com/emoji/v2/... draggable="false" alt="đȘ" title="Angespannter Bizeps" aria-label="Emoji: Angespannter Bizeps">
