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Dom’s Covid Diary (Sat May 9th)

I hope y'all are doing well. I am getting Covid-19 overload. Having subscribed to various MS and non-Ms video channels, scientific blogs, and have been present at countless webinars I am thoroughly sheep-dipped in it. Some medical, some patient. There are probably a few key messages to take away from all this. - 1 – Life goes on. I was on holiday once in Turkey and anyone who has gone out on the gulets will know that you form a queue on the dock and because the captains have an agreement to keep it fair you are just loaded in order onto the next gulet. It means you really don’t know who the fellow passengers may be. Anyhow, I say this because I find myself sunning on the foredeck beside a chap who is a psychiatrist. He told me something that has stuck with me ever since and that is that it is impossible to keep freaking out. Physically impossible. This is the basis I think behind the exposure therapy method to allow someone to conquer their phobias. The same thing applies to Covid-19 (also called SARS Cov-2 if someone is being scientifically precise. They are one and the same.) - 2- The fact the panic has worn off means that we have time to reflect and be more analytical. Whether we start to think that being locked down is a bit crap but necessary, to why the government (UK and US) seems to have made such a Buggers Muddle of nearly everything. “The Letters” are a great example of the massive balls-up. I know of MS patients now, that have likely had Covid-19 themselves, are not on any meds, and in the last few days received a text telling them they need to isolate until the end of June? Is it Central Government, the hospital (through the MS service I presume?), the GP, the County Council? Who knows? Telling someone to isolate now is a v. bad case of shutting the stable door after the horse has bolted and fills them wi9th worry that those in power know something they may not. It creates a fear of the unknown. This is just one case. Many have had letters that shouldn’t whilst an equal amount who should, in theory, have received them haven’t heard a thing. I am on ocrelizumab, am three full infusions in and, in theory, should be on the list. I haven’t heard a word. I know my MS Nurse well and we were chatting about this and he is equally baffled as in addition to that the main neuro at the hospital I am covered by is refusing to start new ocrelizumab patients – even if that is the target drug – but instead is going for extended interval natalizumab (Tysabri) dosing. In the meantime, a neurologist under them works at two hospitals and the other one is starting ocrelizumab on a case by case risk/benefit calculation under the guidance of its MS Neurologist and Neuropharmacy teams. They are 30 miles apart yet take entirely different approaches. In this case, it is a v confused nurse. And me. I struggle to understand why there is not some central guidance from the ABN? Colour me confused. https://sites.google.com/giovannoni.net/clinicspeak-dmt/covid-19-ms/covid-19-questions/q-should-i-stop-my-dmt-if-i-become-infected-with-covid-19?authuser=0 Personally, I am fine. My B-cells are fully suppressed, and it is the T-cells that are crucial to fighting infection. They are talking about extended interval dosing, something I was on at them for at least 4 months ago. A silver lining for me as my dosing will be based on the level of B-cell suppression in my blood and not just a rigid every 6 months approach. I daresay it’ll save the NHS money too. - 3- Your best bet for surviving a Covid-19 infection is to be a healthy weight, a non-smoker and as fit as you can be. The usual advice for life, surprisingly, applies here too. There is much talk about racial differences and even when adjusting for income and lifestyle ethnic minorities are over-represented in the death figures. The thought is that ethnic-minorities may be over-represented in NHS workers at all levels, especially in the lower-paid but equally important support roles. This isn’t a [political polemi9c but it does show just how short-sighted and narrowminded the concept of ‘Britishness’ is tied to skin colour. Am doing deep-breathing now to stop going on a rant that is bound to involve the words Brexit and Gammon… - 4 – As I mentioned, I am roundly bored of this as there is little new news coming out. The intellectual heavy lifting and the massive panic has subsided. Now we can ask why we are second only to the USA in deaths per million in population. Whatever spin the Government tries to put on things (and they put Shane Warne to shame) it has been a monumental f**k-up. - 5 - Like llamas, hate coronavirus|? https://modernfarmer.com/2020/05/meet-winter-the-llama-who-might-just-save-us-all-from-covid-19/ - 6 - Next time someone says you are full of sh*t, point them at this site. (Fascinating 3D model at the bottom). https://www.floridamuseum.ufl.edu/science/florida-lizard-record-breaking-constipation/ - 7 – I know some people are into celebs (why oh why? Just off to examine my growing grey hairs that are making me look like Paulie - https://en.wikipedia.org/wiki/Paulie_Gualtieri - from the Sopranos). If so, Brandon Beaber is musing on Selma Blair (who she?) and her new foot-drop thing which is v cool https://www.youtube.com/watch?v=blRy2O0M8qk - 8 – If you have made it this far you probably know about the MS Reporters’ channel on YouTube. If you haven’t then it is worth following here. https://www.youtube.com/playlist?list=PLVUOB-ZqvZOFdQKAX5Gv5q4IDVg9qNrGy - As ever. Stay sane. Stretch. Keep smiling.

Thanks @dominics for this mixture of Covid, constipation, contemplation and caution. I too am incredulous about the handling of everything. I only now take notice of one UK news source, given the biased and unbalanced spewing of the other. Also, as a born and bred IOWer (not living there) all my friends and relatives with the ‘Where the Island leads, we will follow’ track and trace app are struggling with phones running down in record time. I have relatives and indeed some friends there who don’t have smart phones. But hey ho. And the only reason we are second in numbers only to the US, is that as a country, our leaders did not act fast enough. End of story. Now I’m all riled up, will sign off. But appreciative your regular update of facts and fun 😁😁😁