Friday 20 November 2020

Life in 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. 

These are the reasons why ...

I already have to fight inner demons to get out on a 'normal' day, the added stress of people asking me where's my mask, telling me I'm queuing the wrong way, not observing social distancing, or just people glaring at you ... Means I'd barely been anywhere for months as it was. 
I was scared of needing to go to doctor's, dentists or even opticians as I don't want to follow their rules. I don't want my body temperature zapped - and it's certainly not going to be zapped on my head. 
I don't want to try and explain my beliefs into a fear laden government puppet ... I find it hard to explain even the most basic things when I'm under pressure. Not forgetting that I haven't trusted doctor's for decades (even though I somewhat had to for brain surgery!) and fear their pharma based only beliefs. 
So now, I don't even feel I have doctors medical 'back up' now and need to rely on myself and my knowledge. (I believe it was taking vitamins, getting out in sun, homeopathy and essential oils that got my family through corona back in March.) That said, when I did finally see a doctor they didn't even ask why I wasn't wearing a mask!
My social life ended in March - all live music stopped and with it much of my purpose and challenging and improving my coordination etc. My home educated son's meet ups disappeared, as did two of our household incomes ...
The outside gym at the park was closed for months, something I need to help improve my health, so for 4 months I was getting physically and mentally weaker. (I really didn't see why it was shut when everyone touched the park gates anyway and that was OK?! The more fit people still using it, but just jumping the fence.) It has now been shut again for the second lockdown, even though the children's playground this time is still open...πŸ€”

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...

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. πŸ€” 

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 shopπŸ™„), 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'? 😬


And this is what scares me the most ... No matter how ridiculous the rules people haven't said, 'No, This is enough.' 

You can go to work or school, but not see them after, or more than 6 of family, the masks were only brought in 'after' most of the deaths stopped, the fact the death statistics have been manipulated (and the figure was even lowered as it had been double counted at one point), that they count deaths within 28 days of a positive (flawed) test. (Surely if even half the cancer patients who die were positive with a test that just picks up any viral material this would massively manipulate the statistics?)  The fact on mainstream news we are not told their ages or medical conditions, if they had the flu jab last year etc...just deaths. How different is it to the deaths from flu or pneumonia that happen every year? 

The fact they now use cases (on an unreliable test), that hospitals are empty, that many health services and operations have months, or even years, of backlog, that far too many (mainly elderly) have died alone without family there (just how are people accepting this???😭), no funerals or weddings allowed apart from immediate family... 
Yet many people still don't seem to see this and follow blindly saying 'its science' (fuck the fact there are 1000s of scientists saying opposite, they are just not on the BBC )... 
That scares me, that we have people too blind to see whats happening, policing each other for not 'following the rules' , even when the rules are getting more psychopathic by the day ... and the fear of this continuing if people don't speak up... 😭😭😭

 Now I understand how so many Jews and Roma died ...









Thursday 27 August 2020

Sanity Amongst Madness

This it what has kept me going the past few months...
in my garden!

Watching Bee's...


...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. πŸ’œ

© Pictures all copyrighted to Jo Barlow


Saturday 15 August 2020

Masks & Hidden Disability

Masks scare me, yet it seems many in shops are wearing them, some even when walking outside or driving alone in their car... πŸ™„ 

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. πŸ˜¬πŸ˜“

Today I wanted to get a card - my son and his girlfriend got engaged πŸ’• - 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 πŸ€”) 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... 


Saturday 8 August 2020

Corona Insanity

These last few months have been tough, beyond brain tumour tough. More like having a repeating nightmare where you every so often think you are awake but the nightmare is still going... But its reality. 

Trapped at home, even going to the post office meaning you have to queue outside for ages (with no seat), everyone else in my family having their income stopped or reduced and stuck at home, unable even to use the outside gym as it was supposedly unsafe... 
While I felt my body physically and mentally deteriorating in part because of this one padlocked gate. My fatigue, anxiety and depression all raising their rather ugly heads again...  😭

I am possibly going to be contraversial to some, and yet I know many others will agree, but I am totally fed up with the people following the insane 'guidelines' without questioning.

You are helping destroy humanity as we know it.

Do you want a New World Order where you need a Covid vaccine certificate to travel abroad or even get medical treatment?  Or not able to access government funding, schooling or support unless you comply? (as already happens in China with social credits.) A barely tested DNA altering fast tracked vaccine where the manufacturers have no responsibility if it kills or maims and you cannot even get compensation from the government  (as you do other vaccines) as its a pandemic πŸ€”πŸ€ (don't believe me- its all here

Don't you realise the excess deaths have stopped?  The 'covid flu' killed many of the vulnerable earlier in the year... Not helped by the information that I have seen that care homes and hospitals gave DNR (do not resuscitate) forms to their patients, were told to not treat elderly patients who they suspected were ill with it and many were even sent back from hospitals while ill, only to infect the rest of the care home population 🀬 (I have even heard several stories that they even withheld their normal medication - and we wonder why they died? 🀬😭). 

I won't even go on about how inhumane and unkind it is to ban the elderly from seeing their family, nor how many deaths this alone would cause. I cried reading the story of a local woman unable to see her unable to speak, severely disabled adult daughter ... for weeks! When she was 'allowed' to see her, she had to socially distance herself, even with her and her daughter crying. 🀬 

Would you want to go on, stuck in a room without being able to see those you love? There is a reason married people or those with a good friend network live longer - it's as we are social beings.

And please look again on the info on masks...

Masks have been used as a sign of slavery for centuries...yet one rather hyped up 'virus' and people are voluntarily wearing them. In my eyes wearing them is nothing more that accepting you want to be controlled. 
That is what the dark elite also think too... You are their slave.
Stop wearing them if you or your children don't want to live in a fascist dictatorship.

Plus you cannot spread an illness you don't have, and many medical publications say masks don't work anyway. 
If you don't believe me that Government's etc will actually lie about viruses you NEED to read this book. Fear of the Invisible  
We need people to stand up and say NO to these 'guidelines'. They cannot do anything if we all refuse. Shops won't continue with the 'rules' if they no longer have people shopping there unless they are muzzle free and able to walk in the direction they want! πŸ€” 
Even if they say they will fine people (how can they if you refuse to give your details) do you really think the police or courts will be able to cope with millions of these cases?

And ... can you honestly tell me that this virus will kill more than stopping all but 100% emergency treatment? 
I have heard of others having even their cancer treatment stopped, routine scans and follow up are gone. (unless you ask as I did here!) 
As I saw when I was in the hospital even a neurosurgery ward was shut! They are normally struggling for bed spaces for those that are having surgery - yet I don't think many neurosurgery operations are cosmetic or routine, so this will undoubtedly destroy lives?! 🀬  
No other clinics or patients were there, it was a ghost town. Even urgent brain tumour patients only getting inferior consultations over the phone.  πŸ˜”  
Yet, while we were there, even the nurses or porters (unless near a patient) weren't wearing masks or gloves, even when close to each other πŸ€” Why would this be if  they were seriously concerned? No wonder they silenced the NHS from talking about it?!

How many lives will even just stopping our healthcare system like this for months cost? Now even accounting that the suicide rate has gone up many times 😭 (& often young healthy people), or how the economy crashing will effect whole families - possibly for decades... You can bet it will be FAR more than corona ever will or would have killed - even with no lockdown or social distancing. 🀐

So, PLEASE, if you haven't already, take a look at other sources of Doctor's, Immunologists and Epidemiologists who are saying there is another side to this story than what we are being told in main stream media. πŸ€” These are just some I have seen...

Evidence Not Fear  An Evidence Based Guide including info from many Dr's and medical publications. (primarily alternative info from Dr's about vaccines but also has a lot of info about corona)

Dr Vernon Coleman (whose calming videos have kept me sane)

UK column also has many artciles as well as radio shows to listen to.

J.B Handley blog has many referenced sources

and look up Knut Wittkowski - his YouTube videos have been removed... when censorship happens I personally always feel they are speaking some truth that hurts (after all pedophilia is still online and they don't seem to be able to stop that πŸ€”πŸ€¬) One of his articles is about how Covid would be over by now without lockdown


Tuesday 30 June 2020

Balance after Cerebellar Surgery

When I left my neurosurgeons office after my 12 month scan and follow up, I was told I was ‘back to normal’. Now I fully understood and was enormously grateful that I was classed as ‘normal’ by the hospital, my tumour was gone, I was not needing any further treatment, I didn’t even need to take any medication. Yet I certainly was not back to the same position I was prior to my surgery. Well prior to the time my symptoms of feeling ‘drunk’ and wobbly started!

Many a time since then I have had to pull myself together to go for a walk with the dog as I was having a wobbly day and felt I was somehow buzzing inside, been extra careful not to drop cups, glasses or knives when in the kitchen, carrying an item with a very conscious thought about doing so, felt anxiety as my balance was not right when shopping and I felt a bit 'spaced', had to actively think and control how I was walking over steps, wires, uneven ground or even work out how to manoeuvre round people who were ‘in my way’. Sometimes just using a public toilet felt like a challenge as to if anyone would notice anything or dealing with the horrid feeling of being dizzy and wobbly simply from walking in a zig-zagging queue at a resort or the train station.

Yet I had no choice but to get on with it, never really knowing if it was a mental fear causing the physical issue or the physical issue causing my mental anxiety, or a nice combination of both! 😬

Yet part of me still struggled with the feeling that no one 
really believed me. 
‘My tumour was out, I should be better by now and back to normal’. 
It was certainly an invisible issue. 

Often I don't think even my family knew anything...

Frequently the balance issues were combined with the fear the feeling would go on forever. Then if I had a few good days, even weeks, when it returned I worried what was going on? Was this again the sign that my tumour could be returning?!

If having a chunk of brain missing caused this, then why does no one seem to really care, or even mention I might still struggle?

I guess I accepted it rather frustratedly. (My husband would probably say I whined through it!!πŸ˜‚)  I knew it was ‘my new normal’, and knew doing anything even the smallest bit stressful made it worse. – I knew that, but some days it was very much tougher to accept than others.

Balance, coordination and feeling dizzy (or wobbly) has been one of the main issues on my Hemangioblastoma Facebook group, not surprisingly since the majority of us have had a tumour on their cerebellum! Yet much of the time others say they are much better since before surgery, the symptoms are mild, infrequent, worse with stress and they have also accepted their ‘new normal’.

But a couple of weeks ago, someone posted they were still having coordination problems while walking and feel dizzy nearly 2 years after surgery, and asked “Is this normal?”

These were the replies from others who also had a cerebellar Hemangioblastoma and subsequent surgery:

"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. 😁"

"I am 1-year post surgery this week and I still get very dizzy especially after looking up or bending down."

"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 occasionally have balance issues. Not all of the time. My wife says that I always lean to the left. 3 years post-surgery."

"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."

And even after many years, others still struggle at times:

"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 occasional problems for 14 years after my surgery. My cerebellum had been squeezed by the tumour and didn't fully return to its original shape. I could correct most missteps without anyone noticing but when I walk with someone for a distance, I probably bump into them once or twice."

"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."

"I've not had any scans since the initial one post-surgery, but similarly can have the odd 'mis-step' (21 years on). My brain was also very squeezed due to the cyst, and I tend to just put these things down to 'being me'. 
I don't think there is a 'normal', just a new normal for you.
There are balance exercises that may help, as might walking with a stick. I know it can certainly give confidence.
I can still get dizzy if I have to move my head from side to side fast, or look up, and get a head over heels sensation if I lie straight back. So I'm just careful / know to avoid doing these things. After all this time, I tend to forget what's happened (re tumour) and have just adjusted my ways accordingly.

2 years is still pretty early on. I know you've done a lot if walking, so you're doing the right things. Time will help, both with healing and with the way you do things / coping strategies, which just become 'normal'.πŸ™‚"

My own reply was: 
“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 returnπŸ˜•
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. 😒"


This week I challenged my balance by walking on the beach, yet feeling rather freed in the fact that walking on piles of stones isn't easy for anyone and enjoying the letting go in accepting the wobbling.

I have the gratitude and reassurance that my 4 year scan didn't show any issues. (apart from the known missing bits! πŸ˜¬πŸ˜„)

And from these comments from others, I've certainly been comforted that my "new normal" is indeed "normal" for when your cerebellum has had a tumour removed and been damaged.πŸŽ”

It may also help you to read my previous post 

10 Things My Doctor Didn’t Tell Me about the After Effects of Extracting a Benign Cerebellar Brain Tumour





Thursday 25 June 2020

Scan Results...

"MRI scan looks excellent with no evidence of any residual tumour"

"I am extremely confident, therefore, that your tumour is exceptionally unlikely to recur, 
however as per the genetics clinic advice I will arrange for you to have a follow up scan in five years time."
No words, but I'm sitting here laughing and crying at once!