So it seems we are looking down the barrel of another lock down here in England ( Scotland, Wales and Northern Ireland have devolved governments so make their own decisions ). Not that the first lock down made much difference to my life other than having Mr Myasthenia Kid home with me for 7 weeks whilst he was shielding as he is at higher risk from Covid than me. People don’t seem to understand that I only leave the house for dog training on a Tuesday night or going out in the car and staying in it whilst Jay walks Dembe. I only shop online, I actually can’t remember the last time I went food shopping or clothes shopping if I am honest. So lock down changes very little for me.
Mr Myasthenia Kid is classed as a key worker with him being in retail, so even if we do head into a stricter “circuit breaker” ( who is paid to come up with this shit?) lock down of two weeks the only thing that will change is that I won’t go to dog training for 2 weeks. I know many people in the chronic illness world whose lives are identical to mine or worse, a lock down isn’t something we fear, getting Covid-19 and being assessed as not worth saving due to ventilators not being available is.
It seems that Covid has already made it’s presence felt again in my sleepy little town. During the first wave we were aware that there were many people coming down with it although I wasn’t aware of any deaths ( that doesn’t mean that there weren’t) . Yesterday the gossip at Mr Myasthenia Kids work place was that someone had tested positive at a local gym. There were now a few people having to get tests and self isolate. Jay joked as it was a gym and he is so unfit as are many of his friends it was highly unlikely that he had come into contact with them. It doesn’t stop me panicking though.
His job in retail put’s him at higher risk, just from the sheer volume of customers coming through the door and number of staff. They have already had staff members come into work with Covid symptoms, despite all the government infomercials, news programmes and his work place carrying out regular briefings telling staff what to do. It makes me so cross that people have done this especially when there is no reason to, his workplace have been excellent in ensuring staff members do not lose pay if having to isolate or if they have a positive Covid test.
He along with his colleagues are also at risk from those customers who should be self isolating due to being in contact with a Covid positive person or having Covid themselves who for whatever reason decide that they have to come shopping. I know some people don’t have a choice, they are a single parent, live on their own and just don’t have anyone who can help them out in an emergency. During the first lock down there was plenty of support available for people who had no one to help them out, now however people seem to be under the impression that the danger has passed and no one is isolating. Despite the fact the city next to us is a Covid hot spot due to the number of university students and staff who are having positive Covid tests.
Please don’t get me started on the Covid deniers or the ones that insist that it is no worse than flu or that just a tiny amount of people get it. I help admin a group on Facebook for people with PoTS ( postural orthostatic tachycardia syndrome ) / Dysautonomia and we have had a sudden influx of people who are suffering from what is currently called Long Covid / Covid Long Haulers.At one point last month we were having at least 5 requests a day from people who had developed PoTs post Covid. We normally get 5 to 8 requests a day to join, so it was crazy that we had so many people turning to us for help as they were getting nowhere with their own Gp’s.
Long Covid sufferers tend to be people who were fit and well before getting Covid. When they had Covid they were poorly but not poorly enough to be hospitalised however instead of getting better as they and everyone else expected they have gone on to develop a whole host of strange symptoms. Many of them have developed PoTS or other Dysautonomia symptoms. Their lives have been changed forever due to these symptoms and apart from the occasional newpaper article or short segment on TV or radio very little is being said about these patients whose bodies have been ravaged by Covid.
There has been talk in Parliament that the government / NHS will set up clinics for Long Covid sufferers to help them. In some areas these have been implemented but the majority of the country has been pretty slow. Of course this is all very galling for those of us who have been left with no consultant at all whilst CCG’s & hospital trusts hold pissing battles over who is allowed into their area’s for treatment. Since June I have had no consultant to over see my treatment for PoTS/ severe autonomic nervous system dysfunction, the CCG where my consultant worked has banned him seeing anyone outside that city’s postcode. The hospital nearest me, has no consultant for PoTS as the last consultant retired. The story is similar up and down the country with many CCG’s and hospitals refusing to fund PoTS clinics stating that it is a condition that can be managed in primary care / general practice, yet the majority of the medications for PoTS are Consultant Prescribing only. So if you have no consultant you may not get medications like Ivabradine / Midodrine / Pyridostigmine the latter being an off label medication, it is primarily used to treat Myasthenia Gravis.
So we now have a situation where PoTS clinics are desperately needed up and down the country ( because those still in operation are buried under new referrals and existing patients) and the hospital trusts and CCG’s have been closing them down or refusing to replace consultants that have retired. It is a perfect storm. And predictably it is leading to bad feeling in PoTS groups, where people believe that they have suffered for years, are still suffering and are struggling to be referred to a Consultant yet those with long Covid are having the red carpet rolled out for them. The animosity isn’t against the long Covid sufferers but the decision makers who have decided these are more “worthy” than them. Personally I see it as an economic / ideological move, if we have thousands of people now economically dependent on the state for benefits, lots of people that have previously never experienced this awful system you have an issue that you may lose your voter base. Some people who voted for this current shower of shite are going to have a rude awakening when they find out living on benefits means living in poverty and not the lives shown in the usual Government propaganda. God, I must be getting old to be so cynical.
It isn’t hard to see why some PoTS patients are upset that it would appear long Covid sufferers are being taken more seriously than they are. Personally I am happy with whatever brings PoTS to national attention but I do want the same facilities that are being offered to Long Covid patients to all PoTS patients, many who have had to battle for years for a diagnosis. Something good has to come from this surely?
So we wait whilst the government makes up it’s mind on whether we are heading to another lock down or not.
Apologies for the blog post doubling up there. I have no idea what happened.