© Jo Barlow 2020
I haven't been able to write anything for ages. For the last few months I simply haven't felt able to do more than manage to look after myself day to day. Trapped in some insane hell where the rest of the world has suddenly turned into brain dead zombies.
I have managed to take the dog for his daily walk to the park, sometimes even the local woodlands, but although I had tried to get out to a few places once lockdown had finished, for over a month now I haven't even been to the shops. I can't deal with it.
At the start of September, this was a video I recorded after 1 was told I wouldn't be able to have my opticians appointment without wearing a mask. I knew this was against the government guidelines and so filmed them. Despite knowing I was correct in that they could not deny me medical treatment, I was shaking like a leaf after, so much so that they even offered me a drink!
Masks triggering PTSD, is worse than dealing with brain surgery at times... https://www.facebook.com/benignbraintumour/posts/746962076036141
My last trip out was to the post office back in October, I simply needed to get a label for one parcel, and a receipt for the other. However with the new 'corona queue' it took over 1/2 hour just to wait for the 5 or 6 people in front of me all wearing their muzzles, neatly spaced on their dots on the floor or standing away from each other whilst they still had to queue outside. I can partly deal with it that they (misguidedly) feel safer for doing this, like the fact we all go and touch the post office counter, card reader, and put the parcels in the same bag, and the people leaving had to literally walk past those queuing, doesn't make the whole thing totally pointless. 🤔
But what got me is that ... NO ONE smiled (I smiled at everyone), no one said thank you (the door was now electric, with a sign saying 'go' when you could enter and 'stop' when you had to wait as there were too many people in the shop🙄), no one made small talk (I tried), people glared at me when I said I was done paying and they could use the counter - yet as I still hadn't put my parcels in the bag (as I couldn't easily do so) I was still less than 2 meters away - and so I was looked at like I might poison them or something! No wonder the queue took so bloody long?! Plus I wasn't wearing a mask ... Shock horror ... I felt like I was walking round with a 'I have leprosy' sign on my head.
Plus, due to all the 'keep your distance' notices on the newly installed plastic screen, the post office clerk couldn't even see that I had placed a large letter on the scales and not a parcel, so tried to charge me twice the price and then had to delete the transaction and start again! It was truly a farce. Plus after standing still for this time I was getting physically tired too. My back had been hurting for several days, so I had totally ignored the dots on the floor and had needed to stand either leaning on the shop wall or at times squatting as I was in so much pain. I have no idea what others with disabilities do? Maybe just simply not go out? After all society has suddenly found it OK not to cater for them, make single way entrances and exits meaning you have to walk twice as far or in a zig zag etc.
By the time I was finished I wasn't just physically exhausted, I was mentally unable to deal with the total lack of humanity.
People are meant to smile at each other, greet each other, hug friends ... and yet under their horrid blue masks (or the supposedly stylish ones?!) they just look the zombies have escaped from a hospital. All it needed was some (fake) blood and staples and I might have well have been back in the neurosurgery ward. (Actually that was better, as the patients weren't wearing masks and they did attempt to smile when they saw you, have some empathy with each other by even the smallest of glances and smiles.)
Basically I came home traumatised and in shock.
When did people stop caring about others?
When did the act of not following the guidelines exactly as instructed mean you were outcast?
Why weren't people questioning these guidelines?
Why the hell were people following them?
When did they lose their humanity?
When did they become scared of meeting another person, or touching anything others had just touched?
Disinfecting their hands like they had just picked up shit?
Don't they know we have millions of viruses, many in our bodies at all times, and if we didn't have contact with them we would die?
Don't they think that blocking your air and breathing in from the same dirty fabric is actually recycling toxins into your lungs?
That even a small amount of lowered oxygen can cause brain damage?
Do they think the 'mask headaches' people say they have are just a harmless side effect?
It felt pointless living in a world where people lost their humanity and just walked around like empty headed drones.
I just kept crying.
Yes, masks give me huge amounts of PTSD and even walking past a group of people wearing them is stressful - It's like the world has turned into the hospital theatre. But it wasn't just that, it was how easily we have been fooled. How even Mums with babies, who rely on facial expressions to learn, were wearing masks without question, possibly affecting their baby's development forever ...
It felt to me just how I imagined the Nazi's persuaded the population to follow orders and ultimately do the inhumane acts some did against another human being...
A 'healing practitioner' I know who is in his 70's wrote that in his patients he had 'only seen this before in prisoners of war, in those that have been put in solitary confinement, those who have been tortured and so on. There is fear, acute anxiety and hyper reaction to pain'.
Why are people accepting this? Just why?
There are literally thousands of scientists speaking out against the covid guidelines, saying the stats are false, the guidelines wrong, the masks dangerous, the tests useless, the deaths caused from lockdown far higher than a virus would ever kill, poverty and inequality possibly lasting decades. But still people say you might kill a granny if you go out without a mask even if you have no symptoms (just when have we passed on disease without symptoms?!) and justify it all saying 'the Government are doing their best' (no they are not, they should be prosecuted for genocide and torture😡) probably as the mainstream media doesn't give these alternative views. Have they not heard of 'Stockholm Syndrome'? 😬
Now I understand how so many Jews and Roma died ...
...and the spiders eating them.
Appreciating the flowers...
and the sparrow's, and occasionally other birds, on our bird-feeder.
For a garden that, for decades, never had more than a passing pigeon or robin until only a few years ago; finding about 25 sparrows around the bird feeders is amazing.
When the world outside our house has never been so insane,
it's been calming to just sit and watch.
From the various bees, wasps, butterflies, dragonflies, damselflies, moths, grasshoppers & spiders to the fluffy fledglings being guided when it was safe to land (normally when our dog wasn't in the garden) and now seeing SO many more birds than ever before. Some even trusting me enough to continue feeding even when I am only a few metres away, one hungry pigeon still feeding whilst my son tipped the bird feeder towards him as he couldn't quite reach!
Anyway... even while this year has been awful in SO many ways, masks everywhere being the final straw, this summer has been lovely in both weather (no planes!) and nature. 🌞
It has been my sanity amongst madness. 💜
© Pictures all copyrighted to Jo Barlow
Masks scare me, yet it seems many in shops are wearing them, some even when walking outside or driving alone in their car... 🙄
It annoys me for many a reason as I have explained here.
But it also stresses me massively. I have barely been to the shops since Corona started (and almost every time was a disaster) and not at all until today since masks are supposed to be worn in shops.
I had decided to get a Hidden Disability card several weeks back, after one of my shopping trips that ended in tears. Realising they also had exemption cards to masks, I got one of those as well while there. Once the masks guidelines came into force I was glad I had it, but didn't want to go out and get abuse from people or shop staff as I have seen has happened to others, so I still hadn't gone anywhere...
I cannot explain when I'm stressed at the best of times and it invariably ends in what looks like me having a good angry swear up, when in fact I am just unable to cope and my brain seems to have forgotten how to say anything other than swearing. 😬😓
Today I wanted to get a card - my son and his girlfriend got engaged 💕 - and I had been stressing as to where to go that would be most likely to accept I am not wearing a mask. I felt so awful that I decided to wait until my husband got home and go with him as I couldn't do it alone...
Then in the middle of trying to make pancakes for breakfast, my youngest son discovered we'd run out of milk. I was the only person here who could drive and I realised I am going to have to go to the shop... and now!
As I got in the car, I was trying to work out what was stressing me. I know I am exempt from wearing them for many reasons (severe distress being the main one - I cannot even cover my mouth and nose at the same time with a blanket, but I knew it was triggering some kind of PTSD from my brain surgery too 🤔) and while I know my ability to speak easily shuts down when I am stressed I knew all I needed to say is 'I am exempt' and if I needed show my exemption card, and legally they cannot do anything ... so what else was it that was stressing me? (rather than just making me angry as I don't agree with them at all)
Then suddenly I just had a feeling that I wasn't driving the car to the shop, but walking down the corridor in hospital to theatre. To be met by doctors and nurses IN MASKS. Not knowing what would happen next ...😨😰
I still managed to drive to the shop OK, even though my body was pounding loudly, and managed to walk in and even choose a card whilst still being able to think. (I know when I have hit this limit and it feels my 'brain has overloaded' and I need to rest while it reboots!) Thankfully I went to the local shop where my husband has spoken to the owner about not wearing masks and he didn't say a word about it and even called me 'my dear' or something else deemed polite.
I was still shaking though, and I couldn't look at him as he had a more surgical looking mask on. I cannot look at them without fear... and now I understood why.
I drove home with milk and a card. 😊 Sat down for a minute then decided I needed to take the dog for a walk to burn off the excess adrenaline. I then went in the gym and although was particularly useless (as stressed) it felt I had calmed my nervous system down a bit.
After, I then sat on my normal tree seat at the park and wondered...
Will this whole farce of masks would actually help people with hidden disabilities be seen in future?
Has it forced those of us with anxiety or PTSD to let others know?
Will people realise that someone can have a hidden health issue while looking healthy and 'normal' on the outside?
Maybe, just maybe, people will try and understand?
I don't want to wear a badge round my neck labeling me like a lesser classed citizen - I reminds me of the Yellow Badge labeling Jews (I hate the lanyards schools, offices etc wear too!) but I am happy to have the lanyard on my bag or show it when I need to as a compromise. Or have my wrist band on as its more discreet.
You can also download or print a (rather hidden!) exemption card on the government website here.
And just in case you haven't been told - these are the legal exemptions for most Hidden Disabilities...
"Coming up a year since op for me, wore boots with a small heel on Saturday and that threw my gyro off a wee bit. 😁"
"Yes, I have too. I find that I have to think about and plan my walking. It is tiresome, but you just have to try to adjust to the 'normal' that is today. I walk on the beach and uneven terrain a lot in order to 'relearn' - not easy."
"I'm with you. And it is disturbing. I have been fortunate to now see a Neurologist and neuro physio. Not miracle workers but they do understand and give appropriate exercises to me. Some days worse than others".
"It's a very hidden disability."
"I also have coordination issues (I'm almost 12 years post-surgery.) Like others I have gotten better at learning what makes it better or worse. For the first 2-3 years I would be more prone to get dizzy when walking in supermarkets or in crowds with all the movement in my peripheral (not sure if that makes sense but that is the best I can describe it.) That has gotten much better over the years and now only seems to be worse when I am dehydrated, or things are moving really fast past me - so things like amusement park rides are completely out of the question. I also get dizzy if I am laying on my back and looking straight up or move my head too quickly from side to side. I also have had to change to a small heel but mostly stick to flats just because I feel more stable in them. I also have noticed that my brain gets tired a lot more quickly than it used to, so the more work it has to do the more tired I get and the more off balance I feel. This Zoom fatigue is a real deal for me! All and all I have been very luck and blessed to have recovered as well as I have but still have my days that I struggle with the new normal."
"I had my surgery 15 years ago and, in that time, I got probably 97% of my balance back. It should keep getting better but I'm not sure how much is better balance and how much is my adapting to my imperfect balance. Biggest problems: If I walk with someone for more than about 200 feet, I will probably bump into them at least once. If I'm in the shower, turning my head with my eyes closed is disorienting and I've learned to touch one of the walls when I do that. Uneven surfaces can be difficult, especially if they are uneven due to snow or ice."
“My walking is OK. Unless I need to move out the way of something or someone. Then I am likely to wobble into them! 😬
Dizziness varies, some days I don’t notice it, days like today I feel I am having to control myself with every single thing I do. Make a conscious effort to walk straight and not trip, I find walking backwards and forwards such as in these insane lockdown queues makes me feel awful, plus the anger of having to be controlled like sheep angers me immensely 🤨 I've certainly had a few days this week of thinking will this go on forever? 😢
The frequency of struggling has definitely reduced over time, but getting stressed or doing too much makes it worse again. I’m honestly not sure if it’s at a better level or not when it does return...?
I think it probably seems worse when I have been feeling better to struggle again, as my patience is less and I am more sensitive to feeling 'off' from past experience and not knowing the cause of its return😕
I understand that you are frustrated not knowing if it will get better, but I don’t think the neuro team can ever tell you... it’s so variable on so much.
I think the more we challenge it (by walking on rough ground, or by turning head as we walk) it can reconnect the brains neurons - which help. I had to do this most times I walked for months, even years, after surgery, to get my balance back so that my brain didn’t react wrongly each time I moved.
Plus, we need to find our limits. My symptoms are FAR worse when stressed, tired or I feel pressured or need to do something else that I find tough.
Also, if someone listens to me it helps me in that they know I am struggling and just that in itself often seems to reduce any issues, knowing I won’t be judged. The more I focus on the negative and get worried about it, the more it seems to multiply...
I have definitely had to change some things I used to enjoy though, art and crafts being the main one - I just don’t have the coordination in my hands now. 😢"