Many of you won't know me. I am sure that there are many new members who have found this site since I went into a Covid inspired hibernation.
For those who are still here and supporting others , or still travelling the PMR /GCA road with all its bumps and diversions , after nearly two years , Auntie Bee has popped back up to say , "Hello! and Good Luck for 2022".
My first thought , way back when Covid first arrived like an irradiated bull with the poops into our precariously stacked China shops , was that nothing much would change as the Worlds New Normal was already our New Normal anyway. I'd already been in a form of isolation waiting for help with my Cardiac issues for five months before the pandemic , so how bad could it be to be living life at home for a while longer.
Bad! Bad , bad , bad , baddy bad , bad is all I can say.
My eldest daughter , which old members know as Eric , had to come home for about eight months , while the Film Industry shut down and London was unsafe . My OH had to teach online from home for up to a year . Yet , what sent me under the covers and triggered various flares over 2020 was the free fall that the Normal Healthy individuals in my circle of "so called" friends dropped screaming in to for basically having to live life with more care , and more like people like us.
My little spot of tranquility that I had adjusted to be comfortable living in was suddenly constantly full of people noise and activity as everyone moved there outside lives into my retreat , and all the new isolated healthy folks seemed to bombard my phone with calls , needing to be talked down of various ledges because they had to stay at home and I was obviously the first person they thought of whom was at home and probably had nothing to do .
Top that with the worst Covid effect for people like us with Chronic issues, although we may not have caught it , not getting regular access to our usual services of Physiotherapy or regular checks and it was a pain and symptom super explosion .
My Dysautonomia was properly assessed just before full Lockdown but my Cardiologist forgot to write his recommendations in his notes for my new medication and that also took over a year to sort out.
I had been battling to get to a local RHEUMY for more than a year and then Covid became the new reason not to get to see them and because of my other health issues . I had been stuck with the choice of a super fast taper off steroids but no other help as I had no access to the new biologic drug I should have gone on to. Ehlers Danlos and Dysautonomia meant the risks of steroid use on those conditions far outweighed the issues from GCA/PMR if GCA,was in remission. We basically waited as the steroid numbers reduced to see if GCA had regressed enough to cope with it until the biologic was organised .... But that never came . Luckily GCA was in remission but right up to the middle of this year the miscommunication about my cardiac medication needs meant virtually constant stiffness and pain .
Going back a little though , my intention was to come back out of virtual isolation but each time I felt more able to drop in and give support but then like an attempt at a Domino Race World Record , one domino seemed to drop after another .
By the end of 2020, I had begun a new distraction that could fit in with my issues to need to remain shielded from the majority of humanity I began using photography as a way to exercise my body and brain , not the professional art I used to love but a growing new artistic love that may become a profession .
I begun to cope with my more restricted regime and my daughters had both moved out back to work , even the endless trigonometry lessons that floated through the walls on loud pings had ceased as everyone got to go back to school , even though it did mean having to socially distance at home from the OH and him being cleaner than he ever had been by having to strip and shower every night after returning home .
The regime of others using LFTs and ALWAYS leaving them out for me to clear up from the bathroom cupboard dressed like someone dealing with a nuclear leak became an unusual addition to my new normal.
I thought , despite the new growing pain and stiffness, that 2021 would be better and then things really went awry. You see all those months in shielding and isolation with no access to proper check ups took the toll on the older members of my family.
My mum had a fall and ended up in hospital where they discovered that her primary care had dropped the ball and she had a familial liver condition which was beyond treatment . She fell in and out of hepatic encephalopathy over a space of three months : the stress of trying to deal with helping her by dealing with doctors and inappropriate suggestions of discharge from a hundred miles away added to my daily routine . Finally , after three months she sadly passed away , and despite having my first vaccination my shielding status meant it was still too unsafe to be with her for a few minutes at the end. Then the horrors of a Covid restricted funeral . And another , and another....
At the same time as my Mum went into hospital ( literally there was two days between them) my favourite Uncle had to go in with sepsis from an infection as the poor chap had no pancreas , he sadly passed three weeks after my Mums funeral .
And then my Aunt died from sepsis as she was sent home with an injury to her hip which would have normally been observed for a few days in hospital which in Covid times meant she was sent home and told to call if things got worse. She got no pain to warn her , she was tired and asked to go for a nap , two hours later when she hadn't got up my other Uncle went to check and found she had passed. Sepsis in the hip bone had reached the heart , she'd had a coronary in her sleep and died.
In fact , of all the deaths I experienced of relatives and loved ones in 2021 , a total of 18 , none of them died because they had Covid , it was the Covid Effect on available health care that caused their unfortunate demise.
I finally got to the point of taking my Cardiology department to court by June because of their errors with the medication oversight. I would have been doing this from the courtroom floor I was so incapable of movement .
Getting a thrombosis in the thigh from a trip to a funeral was the final straw. They finally sorted it out and the new drug began a minor miracle which I knew could happen if they'd only pull their trousers up and prescribe it. Funnily enough, when I went to get my repeat the Pharmacist noted that he would always have it in as although it had never been used before he seemed to have four other patients taking it now .... Umm! Wonder why!
Again , just as I thought things were improving . GCA had gone into remission , it was now vascular migraines from my dysautonomic tachycardia that I had to keep in check. I planned to visit you all , come back with news and help , and then , Boom! Or should I say Widdle!
Just as the third wave was encroaching and we all needed to get to our third vaccination , two months of a full on bladder and kidney infection . It meant I was shielded on antibiotics even before Omicron hit the tarmac . With Covid and Noravirus in my local hospital despite my GPs wishes to hospitalise me , he feared I should not do so , so he monitored me at home instead with the horrific promise that if it got worse I would have to go in. 50th birthday uncelebrated , Christmas cancelled again as I was shielded , despite the third vaccination my immunity was still too low to consider being near any untested members of humanity .
So it's the first day in 2022 , the infection is hopefully in the wind ( and when I say wind I am beginning to wonder whether sprout fuelled farts are a holistic cure ) I got out for a walk and caught the first sunrise of the year from my local beach this morning.
Facetime out of the way with my two dishevelled , mildly hungover children I thought , finally , get on that tablet and send some greetings to your old friends on HU and tell them your New Year Resolution is to come back from time to time with some helpful support or news.
I will keep everything crossed that 2022 will let me keep it ... And believe me with Ehlers Danlos Syndrome there are parts of the body that I didn't know existed until I'd accidentally crossed them!
Take care all and keep positive , Aunty Bee xxx
Loss of sight scare
GCA worries update
Is GCA affected by hot weather?
The tooth saga....
Tapering symptoms
