A psychological war?

I've been rather silent recently, I honestly feel I have nothing positive to say, nothing cheerful or inspiring to write.

I am stuck indoors most of the day, unable to go out and meet anyone, the activities I used to go stopped long ago, even my own parents have banned me from visiting. My life as it was before March just forgotten about. Unable to go to a gig to unwind and relax for a while - only once they stopped did I fully realise how much they used to help me both physically and mentally by keeping me active and also healing me in so many ways. From enjoying the music, to talking to people, to having to coordinate my body and brain in setting up the PA and guitars while not falling over wires. It challenged and helped strengthen and rewire my brain!

Last summer was bad enough, I had my garden to relax and sunbathe in, as well as growing and cutting back plants which also helped me coordinate myself and watching nature to relax. But since the weather means I am unable to relax outside, I have spent days at a time indoors, often in tears. Just wondering how much longer we can go on with barely any income, stuck in a small house all day and night. Some days if my family are in the front room and it's too much or I want to do something quiet I end up spending much of the day sitting on my bed. 😔

Then a couple of weeks ago I had just finished my dog walk round the park (the highlight of my day now!) and was sitting on 'my tree' at the exit, when I suddenly had this feeling of my Nan and Gran (who decades ago both used to live off the same road as me) and the simultaneous thought that:

 "This is what WW3 feels like, we are at war".

 

Was it was the same feeling of dread and unknowing that they had felt at the start of WW2..? Powerless ... Fear ... Propaganda ... Dividing others into 'them' and 'us' ... Not giving us facts and stopping those with an alternative viewpoint ... Not knowing what would happen ... Not knowing what would happen to our loved ones... 

WW3 is here but this time it's a silent psychological war.

People are literally attacking you for not following what they believe in, be it the wearing of a mask, social distancing or a vaccine. People are being divided into 'them' and 'us' no matter what view you have. They are idiots for following orders, they are idiots for not...

It seems many people are too terrified to listen to even the most basic of 'alternative information' (eg anything not from the BBC, or the mainstream media and newspapers.) Not even able to comprehend there may be another side to the story different to what is being shouted every day and night from the 5 differently run mainstream media groups. (Yes all TV and media is run by 5 different people)

Yet many have not even read the information from the 1000s of doctors, scientists and researchers who say the PCR tests are useless, the deaths shouldn't be recorded as Covid if, for example, they die of terminal cancer but they are within 28 days of a 'positive (faulty) test, that this is not a 'traditional vaccine' but an 'experimental medical treatment'. (Some listed on a previous blog post)

All the vaccines are still in trial stage. (Look on their inserts) Vaccines normally have between 5 and 20 years of testing, so clearly they have not been tested long term.Yes, more people may have been working on them, but they cannot speed up safety trials and what happens after a year, or 5. They were not tested in people with other medical conditions, the young or the old. There is no data on fertility - women were made to be taking contraception before starting the trial. They do not have the normal medicine marketing authorisation, but a temporary authorisation. What happens if they trigger cancer, or an enhanced immune response after a few months? Most people are not knowing that rna vaccines have never got past animal experiments before as the animals either died upon exposure to the real virus, had serious auto immunity issues, or were made infertile as the rna attacked the placenta causing miscarriage.

The Astrazeneca one instead having chimpanzee virus, mixed with aborted fetus cells by genetic engineering. (see here for the government website details) Sorry, but have you ever heard that SV40 - which has caused millions of deaths from cancer - was believed to have been given to people via polio vaccines that used monkeys in the manufacturing process? Or HIV is thought to be started from similar use of primates with SIV in vaccine manufacture? See the SV40 cancer foundation, The Lancet, the National Geographic. 

This was mentioned in even mainstream articles late last year, but have now been 'fact checked' as false ..! So even when scientists have genuine concerns about the vaccine, the media is not allowed to let you know these concerns. Make out you are an idiot for not trusting them as a (paid) 'fact checker' has proved otherwise!! 😬 Its far easier to not get someone to actually research for themselves when they are told they are listening to 'fake news' and must be an anti vax, conspiracy theorist to even question it. So as most don't want to appear stupid or believe our government is not purely trying its best, don't even question.

Yet despite many of these concerns or details being on the actual vaccine insert, or written in medical articles (such as a reviewed Pub Med articles) written by scientists, you cannot tell people. Videos from Doctors concerned with the vaccine are removed from the internet - free speech has gone. (This is here at the moment)

Social media bans or removes even your 100% 'factual' comments (such as info on the vaccine insert), people ridicule you without even doing a single piece of research of their own. (Although strangely as I have been following these issues for years I, like many others, have actually predicted many of these conspiracy theories which have since become conspiracy fact, or potential fact... like saying they wanted to introduce 'mandatory' vaccines (although its not legally mandatory, people have been told they will lose their job if they don't comply) or vaccine passports, saying vitamin c can cure all sorts of viruses and infections, autism is triggered by vaccines, that they want to stop cash...)

I feel that I am unable to even warn people as they go off to 'battle the virus' with their vaccination and yet feel they are now just playing Russian Roulette with their life, they are in a medical trial without even getting paid, and one that if it goes wrong they cannot do anything about. 😔 (You can't detox if some of the concerned scientists are correct and your DNA is changed)

I am now hearing from friends that they know people in care homes (who have been unable to see their family for 10 months) dying shortly after they had the vaccine. Apparently care homes are having a huge increase in deaths. This plan, whatever it is, clearly isn't working for their benefit. 

We are fed fear 24/7. The death stats are daily. A new strain. A more deadly strain. You will die, or kill Granny, if you don't wear your mask, if you dare meet up with someone else, even someone who is well... as you may be a spreader! 

 

Fear and stress = lowered immunity.

 

Plus there is the nocebo effect that no one even mentions... 

If you believe you will get ill, or have a positive test then you could well get sick, feel worse or even die 

- purely from this belief. 

 

I heard about this a few years ago when I heard David Hamilton talk about the nocebo effect, some of which is written here. Web MD and Psychology Today also have good info. Yet when was the last time you heard a positive mainstream media, or government article on Covid? One telling you to take high dose Vitamin C at the start of any signs. That combined with Vitamin D and |Zinc you can build your immunity up to lessen your chances of even getting it. Telling you to do things to reduce your fear and stress?

It's been a farce over the last 10 months or so, the government constantly changing its 'rules'. The outright lies. The twisted stats. The controlling. Making out you are a Granny killer if you don't do as you are told. (Almost all of them disputed by prominent virologists etc) Yet even psychopaths don't make their lies this obvious. 

 

How many have died from stress, depression, loneliness and the nocebo effect alone?

 

... So as I was sitting on my tree, I just sobbed with my Nan and Gran in this realisation. I felt them trying to give me strength 💜 While also hearing the comment from Hermione, in the Harry Potter books, when she fully realises that Voldemort is back "Everything's going to change now, isn't it?"

 

And yes I fully believe this is a psychological war...

...and one people need to wake up to if we are going to be able to win.

 

 

 

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A Very Quiet Birthday

Two days ago it was my birthday 🎂 I ended up spending it at home with my family. No surprise there being that the country is on lock-down! 😁

On the surface there was no presents (as no one could get to the shops), no meal out and I couldn't even get a takeaway of food I wanted.

Last Saturday evening also should have been having a birthday gig with my husband and son's band. It is the singer's birthday the day before mine so last year it was a fun event. Nothing pressured, just an enjoyable evening. But this year everything is on stop...

So instead I got a nice home cooked meal and my son making me a really tasty gluten free birthday cake. (Believe me tasty gluten free cake is a task in itself!) Nothing else different from any other day.

Apart from their presence in the present -

which I guess is the best type!! 💜

But then I never much liked my birthday, I hate people fussing over me as they are 'supposed to' rather than they 'want to' (Just to let you know - any other day of the year and I am up for treats!) and I am not the artificial huggy, kissy type. If you get a hug it's as I mean it, and care. We even chose to get married abroad as I didn't want a wedding what feels to me a fake, and expensive, parade.😬 So I guess 'nothing' doesn't upset me too much?! Not much different to lock down being quite like our normal daily lifestyle...

But I did get a birthday spent outside in the garden, with blue sky and no 'plane lines' (even if it wasn't as sunny as the day before.) The loudest noise for most of the day the birds nesting in the bird box in my garden, rather than the constant volume of traffic driving past, the constant line of planes in the sky or the rumble of a transporter dropping off cars to the garage nearby, or people revving engines. I spent much of the day planting seeds and sorting pots for growing veggies in what felt a far better environment than usual.

Plus, as it has rained in the night, when we went for a walk that morning the trees outside had dropped their white pollen, so it was like I had a layer of natures confetti at my doorstep, all down the road and at the park instead. Nature celebrated quietly with me.💜

And... for some reason, I still find the date of my brain surgery, my cranioversary, more of a celebration of still living than my birthday. Maybe as not many have a cranioversary day, or a second chance at life, it's a bit more special?







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Questioning Scanxiety

I don't find winter an easy time of year, I certainly am no where near as active or productive as in the spring and summer, and cold winds still can make my head feel nerve pain or achy. Plus I really miss sunbathing and recouping my energy - my kids don't call me a tortoise for no reason! 😂

For the last 2 years I also started getting dull headaches in the winter, starting from about December, (see Crying in the Rain) I remember getting odd sensations and scanxiety for the few months before my last MRI (in April 2018) then being relieved that it was fine. (see Scanxiety and SCAN RESULTS!)

Then again last year the same thing happened and I started with the dull headaches just before Christmas, but thankfully I reminded myself that this was seemingly an annual occurrence, and didn't get too stressed over not having a scan soon for reassurance.

The same has happened again this winter.

I don't know if it's purely as the cold weather triggers head pains, or if somehow my body has held the cellular memory of what happened?

...and so, as the major symptoms of my tumour started in December, my body kindly reminds me of it each year. 🤔

 ↔

I also know that I have another MRI due this year, around April or May time, and so I feel there is some tension and scanxiety brewing again..

Stress causes my head to tighten up, I can now easily feel it and the muscles right up my neck into my head, which then in turn causes my head to hurt.

I know my Neurosurgeon reminded me last year that 'head pains are not actually from the brain, as the brain has no pain sensors' ... but... I certainly had headaches when I had a brain tumour - and right over where the tumour was, plus after surgery I could clearly feel a buzzing 'in' my brain! 🤔

I have also realised that somewhere in my mind I have taken it that between 3-4 years is when a re-occurrence is likely to occur, if if does. So it feels this is an important scan to know what's happening. 

I fully realise it's not much point worrying about what could easily be fine, but I also know confirmation that all is OK will be very reassuring.

"Suddenly the head pains are just side effects of surgery again rather than the concern the tumour 'may be returning'..."

↔

It feels like these follow up scans are an information and possible decision time, much like when you are pregnant and go to a ultrasound to confirm all looks OK with baby. It doesn't change anything about what's happening, but it helps you know that most things are probably OK and you can relax a little. Or possibly give you advance warning that there may be a concern that needs rechecking or an action taking.

There is so little information about hemangioblastoma's online, even less about those not linked to VHL disease, and really not much at all about the re-occurrence rate for sporadic tumours as mine was. 

Much of what I have read has changed within less than 4 years since my diagnosis, as has information on the cerebellum.

However it seems the general consensus is that up to 25% of sporadic hemangioblastoma's regrow. Whether that is because of the area in the brain and if wasn't all able to be removed first time without damaging something, I am not sure. 🤔

Even with my Facebook support group, of about 100 people who also had cerebellar hemangioblastoma's, I think only a couple had surgery very similar. The majority of  hemangioblastoma's are surrounded by a cyst - mine wasn't. (See here for the different types)

Most didn't get an extra hole in the skull at the front of their head for a external drain during surgery, and I don't think any others have a similar plastic plate in their skull. Some had 2 surgeries, one to embolise the blood vessels first, others a second for different reasons such as draining the cyst first. Many have cuts straight up their neck and so they didn't have their greater occipital nerve cut, nor half their head still being numb. Some were in hospital months after, and I think my leaving after 2 days is faster than all. 

There is such an obvious variation in types of surgery, let alone what we don't know about the actual operation in theatre, that this 25% re-occurrence could also drastically differ from the difference in how surgery is performed and the surgeon's knowledge. 

I simply don't think there are studies working out the best outcomes. I also doubt any surgeon is going to admit a better method has since been found, so us patients aren't going to know!

Definitely no studies have been done in how often follow up checks should be carried out, some have them every 6 months, many yearly - but others having none! 

How much does insurance and cost play a part into this recommendation? 🤔 

My scans being 6 months, 2 then 4 yearly so far; then if all is OK not for another 5 years, are very much being at the lower end of the scale. 

So ... From my observations on my group, if a tumour has reoccurred then it seems to be between 3-4 years after their first surgery. This may well include those with VHL, as many haven't been tested on first occurrence of their tumour, it may also include those whose surgeon didn't remove it all in the original operation, but hadn't made that clear. 

But I now have the belief that my scan will be important. 

It's 'the' most important one.

↔

It was only on someone else in this group saying that they were due their first yearly follow up and how their surgeon had said this was the most important scan that I realised how much...

... our information can affect our thoughts and therefore our reality. 

They were nervous of this first scan, me of my next...

 ↔

Is it any different to birth and other Mums either telling you that 'You'll be begging for an epidural' or 'It's the most natural amazing experience of your life' and it changing your perception and fear completely?! 

(Sorry, I have 4 kids... I was told these, and mainly other fear based stories a lot!! 🙄As it was I had 4 births without drugs, and two home-births which very much showed me how much of a variety there can be, and much of it and the 'luck' is based on your fear, knowledge and accepting, or not, what is) 

But right now, I'm a bit like a pregnant mum awaiting her scan, not wanting to believe everything is alright until you get confirmation all is OK. Sort of ignoring the scan date and continuing with life until the day arrives. Not yet quite believing all is well and getting false hopes up...

You know it doesn't guarantee everything will be fine, but it certainly helps reassure you there is nothing major to worry about!

As I have said before ... One of the hardest things to deal with is that the after effects from my brain tumour are the same as the symptoms of it ...

All you can ultimately do is trust. 💖

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Life Lessons from a Dog Walk

This weekend has been stormy and raining heavily, so when I took our dog to the park today there were puddles everywhere.

Enzo was loving it, and kept running around each small puddle and dropping his ball into the water. Laying down next to it and watching. Then after a few seconds he picks it back up again and drops it back in the water.

I know from past experience at the sea or river that he often drops his ball and waits for the waves to take it away and wash it back to him, or the river to start to carry it downstream. He catches the ball again as it moves about a foot or so away.

So I believe he is waiting for this to happen and expects his ball to start to float away when he drops it into a puddle.

He is watching it in exactly the same way, picking it up and dropping it over and over, just it never moves.

His collie intelligence tells him water = the ball being washed away, yet if doesn't tell him that puddles are different to the sea, rivers or streams. 🤔

It's mistaken logic. Our belief shaping our reality. 

How many times do we do the same?

Clearly not with a ball in a puddle, but with life. How we think reality should be. How we have been shown or experienced something once before so we think that's still real now. And so we repeat something over and over as it 'should' make sense or react in this way.

How often do continue thinking the ball will float, when if we just sat in reality and watched it, we will soon realise the ball doesn't float when the water isn't moving. Or it only moves in certain locations.


Instead we just focus on how we think it should be...

even if reality is not following expectation.

🤔

Even a simple experience such as walking the dog in the rain can be such a variety of experiences depending on our mood and thoughts.

Some days it's as much as I can do to drag myself round the park, I don't want to talk to anyone, have any other dogs near us to take his ball and anger me when I can't get it back. Other days I will laugh at the exact same experience of a dog stealing his ball and teasing him with it, trying to get him to play.

Some days I cry walking round there, feeling extremely sad, angry or anxious,

There are times I love the rain. Just Crying in the Rain & Releasing.

Other days it just feels like the rain will never stop. it's making me uncomfortable and wet. Longing for the sun. 

 Yet others I feel nothing but love and joy. The rain a blessing.

I've learnt to accept all the feelings, none are wrong or bad, they just are. 

Temporary.

Often if I just accept that moment and the tears or frustration with it, a lap of the park and a sit on my favourite tree branch helps me release my feelings and refocus. (See my previous blog post here)

Soaking in the knowledge I have felt much worse and things have got better again, have felt amazing joy, then struggled again after... yet the tree is still here.

Still grounded, knowing it will shoot leaves again soon and feel sun on its branches.

Not expecting anything else other than what is ...






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Trauma, Anxiety & How Thoughts Can Change the Experience

It was only on reading something written by another person expressing their thoughts of when they were awaiting brain surgery that day and how their anxiety and heart rate went up, that I fully realised ... it wasn't just me.

I hadn't been weak, was just an anxious person, had a phobia, or was getting stressed for nothing... But was reacting in a way that others do, probably even the majority of people do, to a serious surgery where no one actually knows the outcome until after you wake. I was scared, terrified and my body was reacting as such.

Yet why don't we discuss this? 

Or the thousands of other events where you feel you will be judged if you actually dare be honest? 

Told to 'pull yourself together', 'man up', 'move on', 'be brave' or 'take a chill pill'.

Rather than someone just say... 

"Don't worry about feeling scared, 

it's perfectly normal considering the circumstances, 

I'll be here for you"
and to reassure you all is OK.

The nurse that held my hand in theatre until I was unconscious being one of these living angels. 💜

↔

Is it any different to going to the doctor and them diagnosing you with depression or anxiety ...but not taking into account that you have just had a upsetting or traumatic experience recently?

One that you need to discuss and process before you can move on rather than just bottle up and ignore.

The thoughts in your head won't go away , no matter how many pills you take, bottles you drink or things you try to distract yourself with...

Yet society shames us for struggling.
 Admitting our truth. 

So we frequently don't mention we have anxiety, feel low, or are stuck in a hole not seeing the way out. Until it gets too much and we go to the doctor's to get 'diagnosed'. With a mental health 'problem'. Told that the body doesn't have the correct balance of chemicals, or some other psychological theory that's not actually proven in science (but believed by many). (see my previous post about Johann Hari's work)

Yet is it really a problem or just a way of reacting or adapting to life? 

 

 

 ↔

 

 

If someone experiences a traumatic shock, we often need to tell others what happened. Express it in our own minds, make sense of it. Write it down. Draw an image if it, or just an abstract of the colours and words in your thoughts.

Animals often physically shake after a near miss by a predator, so why don't we cry, scream, shake or do what's needed? We do other people suppress us? 

When my then boyfriend drowned when I was 17, I was given tranquilisers that night by the GP, blocking my anguish and shock. Society expecting me to be 'over it' by the funeral, after all "I was only young - I'd find someone else"... 

With no one to explain the 'hell in my mind' to.

↔

I have since learnt and realise the body is programmed to be alert for future signs of something similar to protect us. Just as it would have done with early man. So if someone was wearing a red dress or there was the smell of freshly cut grass nearby when the trauma happened, both if these seemingly totally unconnected images will possibly remind your subconscious of the trauma, and give you future signs to avoid it. 

For years I hated birthdays, not knowing why. It was only when realising and fully expressing I was at a child's birthday party the day he drowned that this anxiety went. 😢

It can therefore take this understanding that when anxiety hits, 'What was near me just before it started, what it is reminding  me of?' to help release it. Rather than thinking 'I have anxiety now. I need to get away...'

↔

I had this situation last weekend. I was at a pub watching my husband and son's band play a gig and had climbed the stairs to the toilets. These same stairs that I had not climbed for a few years.  The stairs where before I knew I had a brain tumour I could barely walk up as they made me feel so dizzy and wobbly. Knowing something was drastically wrong, yet I was told by doctors it was all in my head. When I felt drunk, but was 100% sober, and so scared.

Instantly this fear came back, but because I knew I had linked these stairs with the anxiety of knowing I had something wrong. I could almost immediately be thankful the trauma was over. I can now climb them OK. Being thankful I was alive. Know that these stairs were part of my trauma, and that could now be released. 

I also can now think 'Oh that's made me a little anxious' and just accepting the fact I am feeling anxious seems to reduce the anxiety!

Where as if I start to panic, 'Oh I'm feeling anxious, I don't like this, what if someone realises... what if, what if, what if'... It just gets worse! 

↔

I again had a really good experience of this a few weeks ago. I was driving my car home alone (I had gone with my husband to collect another car, which he was also driving home) and as I didn't know the area, I was following the sat nav. Initially to the local services. It was narrow winding roads which I didn't like and as I was doing a mixture of looking at the sat nav and checking his car was behind, it made me feel a little wobbly and off balance. (I still can't easily turn back and forth without it affecting my balance) 

So after 40 minutes of driving I got to the services, already feeling a bit stressed and knowing I still had another hour or so to go. (Far longer than my usual driving, and I've certainly not done this distance alone since my surgery.) I told Dave I'd follow him now, as we both knew the way and wouldn't have to look back to check he was OK.

Yet as we got on the motorway, it completely tipped it down with rain. Like the heavens opened type of rain. I could barely see his car driving in front of me. The splash-back of a lorry passing meant I was all but temporarily blind, even with the wipers on fast! I felt anxiety rise, 'I'm on a motorway, they don't even have hard shoulders any more, not that I want to pull over in these conditions anyway as I wouldn't want to get out. I have to continue, as stressful as that may be.'

But I also knew that these driving conditions would be stressful to many people. I am an OK, safe, driver. I just need to relax and be sensible.

So I turned my music up louder and started singing along. Something I knew would relax me. After all no one could hear me with this belting rain! 😂

I also asked the universe to protect me, just like it has many times before, and trusted I could manage.


I'd dealt with far worse ... 

We both got home fine, about 2 hours later than planned due to the weather, but we were home safely. 🙏🏻 

I'd driven for 4 hours, minus a short break for some food, and been in a car for 6! Far more than I 'thought' I could drive for, but I'd never really had time to think how long it was until I got home.

So I didn't have chance to judge myself and that it was 'too much' for me. 🤔

↔

I guess talking to others helps clarify some situations and experiences in my mind, seeking what others feel and realising that it's 'normal'.

But questioning myself and my beliefs on others is even more available and often just as helpful.

Not judging myself negatively.

Yes I may have anxiety at times, who wouldn't with trauma in their past,  but I'm not a failure because of it. 

I'm getting over trauma and anxiety is part of that. 

Please help normalise it, and don't judge. 💜

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Off Grid

I have disappeared for a few weeks. It's taken me this long to find myself again.

I had a neuropsychology appointment at the end of November that didn't go as expected 😕 I went there  thinking I was getting some kind of cognitive tests or thoughts to help with my hand, head feelings, vision, fatigue and how they have changed so much since surgery. How to cope better with the new me.

But instead she focused on my (health) anxiety as I, mistakenly, said near the start of the meeting I had it for years. 🤔 (Since my boyfriend drowned when I was 17, after telling me the week before he would be dead within a week. 😑  I admit it took me years to get over it and I guess part of it has never fully gone, something like that does imprint on your brain slightly.)

But for this woman to judge me on who I was 28 years ago, telling me what I needed and what I was doing and why, even when I didn't relate to what she was saying - it felt a joke... 

I wanted support not judgement.

"I am me. I was abused, made to feel worthless and shamed, manipulated to doing what others want. Put down. Ridiculed. Left to cope with premonitions, alcoholism and then death ...when I was a child.  A fucking child!!!! It literally tore me up inside. While I was made to pretend.  On the outside no one knew. 

I have had countless days when I never thought I'd even make it to the end of that one. Countless nights with inherited emotional worry and stress consuming every fibre. Feeling the physical pain of others.

Yet, I brought 4 kids up... Me doing most of the physical day to day work. Exhausting. Emotional. Non stop. Without payment. Without even having a drink at the end of the day to calm me. For 25 years so far... 

Fuck I deserve more credit than this... 

Then I went through hell with my brain tumour. With how much hospitals terrify me. How I don't trust dr's to do what I want and that I always need to be alert. I had to be my own representative much of the time. Yes, there was a point I did have to trust and let go, but soon enough once again it was back to me. Looking after myself. Looking up things to help me, support me. Yes, I know family helped with cooking etc and took many of the daily tasks away and of course I am thankful for that, but I still did many things myself, and all of my own health care. 

I feel I got through it far stronger than I started. I survived what I thought would kill me.

But, as ever, the only way was to support myself. Like I have done for the last 45 years."

She also seemed to think that even talking to others on my Facebook support group for others who have/had hemangioblastoma's would be 'reassurance seeking' and make things worse!! 😬🙄 Even though this is the place where people understand most about the frustrations and acceptance of what I went though - as they went through the same too.  💜 Many have had surgery in the exact same area of the cerebellum, and have very similar side effects. The side effects I'm not 'supposed' to have... 

Where I also support them, support others who are waiting for surgery and terrified.  Discuss things that have helped me, as they may help them too. 

Same with writing my blog, apparently -
'I'm prolonging acceptance that I'm 'normal' again'!! 😔

She kept saying over and over (in what felt a rather sarcastic voice, think Delores Umbridge in Harry Potter films) "Mr Jones says you have no medical issues now..." 

When I said, "I know this, but I want someone to support me with what can I do to address the fact my life has changed, my hands curl and no longer work the same. I can't do (my passion of) art as I did, or sewing (I cant even thread a needle easily WITH my glasses on), or crochet ... I drop things, I can't even do up jewellery clasps without a struggle.

My vision is shit. It feels like it did before I knew I had my tumour. Oddly blurry and fuzzy. Yes I know I've got old and long sighted, but again I can't see properly at times even with my glasses on.

My neck often hurts as does my head. Yes I know things are 'normal' but what do I do to cope better with what I now have? 

I've been to the GP, who does some tests - which are normal - then says to see Mr Jones as she thinks it may be tumour after effects, who (after waiting months to see him) says 'I'm normal', and so I'm back to the start with no one within a whole year who can actually help me with the issues ... Can I stop further deterioration? Do I need to do exercises? I know it might be nothing to do with the op, but it DID all start after it."

I never really got a reply, apart from she said again "but Mr Jones said you're normal"

I was gutted. In tears of frustration, disappointment and anger. Apparently this means I just have anxiety?! 

Yes I know I have PMDD, my moods can drop and I struggle to cope with hormones, How feeling irritable, overwhelmed and tearful from hormones, as well as more fatigued, doesn't mix well with my struggle with the side effects from a brain tumour and surgery. The fatigue in itself makes my speech, coordination and balance all feel worse again. I feel a failure to myself and my family.

But none of this even came out in our conversation. I was too judged on the box she wanted me to fit into.

So she is referring me to another neuro-psychologist. Who she said would do more talking and then possibly refer me back to her for cognitive assessments only if I needed it. She also mentioned taking anti depressants - which I am about as likely to agree to as win the lottery.😬 I said to her "I don't take drugs as they don't suit me and have seen too many studies that anti depressants don't work more than a placebo or talking, and can even ruin people's lives." Which was scoffed at.

I only realised fully when I got back home...

I am not depressed - I'm fucking angry! 

Not really mentioning that I need to talk... Or to feel useful and wanted.  To have others who understand and listen, or that I don't have enough other people to talk to and am isolated now.😕 

So I'm still partly worried I'm going to get labelled as having a disorder and then possibly be labelled further as 'refusing treatment' - rather than them helping me with what I struggle with.... 😢

Not the best result 😔

Hence why I disappeared. 🙈

But a few weeks later, and I still feel I want to help others in similar circumstances to what I had cope with, I'd like to support them more as I understand from being there. I feel there is a place for me doing this, albeit I am not exactly sure how ... Yet hearing a neuro-psychologist saying I should stop as "it's reassurance seeking or stopping me moving forwards" feels so far from MY truth. It's empowering me. I did it. I coped. I have changed my view of life. I am proud of myself for doing so. I want to help others cope too.🙏

I know I need to focus on something positive, fuck me I know I can do more, but I could do with some support and guidance. What 'I' am interested in, not what others think it best for me. How to cope with my 'disabilities' (I can't think of another word, but I want this to be strong and accepting of the deficits I have, not the weakness) and my strengths.

It's taken me five weeks to find the strength again to both publicly 'tell the world' and realise writing my blog helps me, helps me move forwards, not holds me in the past. 

And if it helps even one other person - it's worth it. 💜

 

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Accepting Myself after Brain Surgery

This is not a post to brag about me, as I know I am far from perfect.

But this week I have had 3 people tell me how they love me, how amazing I am, and they just wanted me to know and realise this fact 💜 and then just gave me a hug right where I stood 💜 Plus a few other people who have spontaneously hugged me!

 

It has so helped me feel better about myself 💜

 

As ... sometimes it's hard to keep being 'you' in a world that wants you to be something different, a world that judges you on what you look like, every mistake you make and where what you possess equals how admired you are.

 

 

On lots of these I don't have much. 

Up until a couple of months ago I was starting to become totally depressed with 'me'.

The fact I still say wrong words so often after my brain surgery, the fact I'm so often fatigued, I have no money, barely any monetary possessions, no qualifications, many of the skills I had went a bit AWOL along with my tumour surgery & I realised I certainly had PTSD from it... plus I have certainly been feeling and looking my age. 🤔

A couple of months ago I realised I needed to let go of the 'shoulds', and to accept my 'faults' as they are.


Accept the 'new me'.

I would have been dead if it wasn't for an amazing team, led by Mr Jones who took my tumour out. They gave me another chance.

I realised again something that I knew inside but had been buried in the changes in my life ...

So what if I sometimes get the word wrong, 

struggle with feeling shattered, worthless or don't live up to 'normal'. 

So what if I don't look 20 any more, I'm fucking lucky to still be here. 

Heck I was born with red hair 

... I was born to be 'me' 

...to stand out and be a little different. 

I've always had a bit of rebel in me, 

so why am I taming and changing myself now? 

I went through the hell of surviving a brain tumour, the total and utter physical and mental exhaustion, the terror, the having to accept, having to trust... The comments and judgements that still happen when I'm tired or my brain and body have not yet woken. Their judgements, when no one knows anything about me, nor my life... 

The fully letting go of how others see me, after all how can you do anything else when you have been seen at your worst for months, where you spent most the time crying, feeling awful and you cannot even see well enough to put make up on if you wanted. 😑 Not that at the time I cared one bit. It was the last thing on my mind!  You totally lose the illusion that it matters.


Who wants to be a cloned, fake Barbie doll anyway? 
I like being REAL...

I never wanted to me anyone else but me,
so why was I getting so stressed with what I couldn't do now? 

I let myself off the hook. Stopped judging me. Stopped getting upset with my struggles and focusing on my positives and improvements instead. 

During the months of brain surgery recovery, where it took so long to wake myself up each morning and even longer to open my eyes. Part of me stopped judging with my eyes, and instead feeling with my heart. I needed to keep 'seeing' things that way...

Do I actually give a shit if I have wrinkles or an odd white hair? No, as if I shut my eyes I don't see that, I feel my soul. 

I have learnt so many lessons during the past few years...  Of what really matters.

After surgery I had been hit with the realisation that I had spent years, decades, worrying over so many issues, but how many had actually come true? Probably less than a handful!

But had a ever worried about getting a brain tumour? Not for more than about a minute! Did I get one anyway? 🤔🙄 And if I had thought about it, what would worrying about it have actually helped... ? Absolutely nothing. Just made me feel worse for far longer.

But for several months this realisation went again, disappearing with the daily struggles, the why's and the feelings of stuckness. 

I know I could easily worry about so much just from my head symptoms alone, and can easily think is it my tumour returning. However I had been talking to the lovely Ivana who reminded me how my thoughts create my experience. 

I could either see my half numb head and it's increasingly itchy or sore scalp sensations as a sign of a problem or that, instead, my nerves and muscles that were cut in surgery might be growing back and healing themselves? Sensations returning. Yes it might be that they are very weird at the moment, but which of these thoughts will make me feel better? 🤔

I also fully realised I'm an empath. I feel others emotions (the strange sensations are very often not my own) and their pain that I often don't think they fully realise. I am someone who will happily hug another person in this understanding.

It's fine for me to do what I need to reset myself. 

To be me. 

The full unabridged version of me.

With that... My mood nearly changed overnight! 😁💜

And my happiness, and hug levels, have rapidly increased  💜




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Words - Do You Think or Feel Them?

As you may have heard me say, I go to my husband's (and son's) gigs at local pubs and clubs most weekends. I often sit alone, and often end up singing to myself!😁

Yet many a time I have realised I only remember some of the lyrics, and I am a few seconds behind with the words I do know, like I have to hear them to remember them. 😬

It annoys and upsets me.

I get frustrated with myself and my slow brain.

As does any situation where I cannot find the words for what I want to say, when I want to say them. The more I try and think, getting frustrated that I cannot remember, the more I seem to not be able to say things easily...

If I am explaining something when I have time and feel calm - it's fine. If someone is rushing, I feel I need to give a quick response, or I am feeling stressed - I might as well just point to things, as it would probably be more effective!

I say "It's in the kitchen", when I am standing in that room and mean the lounge. Or sometimes even contradict myself and then add "No, no, the lounge, I mean the kitchen, no, the lounge, I mean the lounge, on the sofa." 😬

Or if I am wanting to say the table, but am looking at the sofa I just say the object I am looking at... or it can be what I am reading, or thinking ... Yes I have said a few rather awkward things. 😬 Like this incident I posted on my Facebook page a couple of months ago:

"Dave tells me he saw the dog pee on my mint plants in the garden today (I had just picked some mint for dinner)

The response in my head, and what I thought I said:
"I picked it from the top of the plant, he can't get his leg that high"

My actual response (as witnessed by 3 of my family)
"I picked it from the top of the plant, he can't get his dick that high" 😳😬😂

It's like my brain is simply not fully awake, getting stressed and then randomly choosing a word from the multiple choice list in my head!

Anyway, back to the singing...

Last night I had to put on my music quite loud to drown out the sound of the fireworks for my rather anxious Collie, and as I was alone with loud music I decided to go for some sing along rock to add to my playlist, much of them sentimental songs from my childhood or when I was a teen back in the early 90s.

At the start I was trying to remember the words, as I felt it would help me just by singing them... (some of the songs I had just found in playlists on Spotify and so I hadn't heard them more than a couple of times on the radio in decades) and yet the more I tried to think what the words were, the more I was a few seconds late in singing them, if I remembered the words at all.

 Then I just gave up and tried to 'feel' the words instead of 'think' them ...  and suddenly I remembered  lyrics from songs that I hadn't heard for 20 or 30 years.

Somehow as the next line appeared it just was there in my conscience, if I stopped 'trying' to find it I 'just knew'...

I had a great hour or so singing along to old Fleetwood Mac, Gerry Rafferty and Rolling Stones, although I'm not so sure if the dog did.  😂



I guess it's all but the same as when someone asks you the name of another person and you just go blank, and the more you think about it the more you just cannot remember. But as soon as you say "I can't remember" and look away and then look back at the person you can just instantly say their name without thinking!

Plus I know that since my brain surgery I also do a similar thing with even quite common words, whether I am writing them down or saying them. It takes a while for the word to appear in my head and I have to either think of all similar words that are close in describing it or shut up and just wait for it to appear.



This was also a clearer example of a recent realisation I had when I was talking to a friend. She was someone who I felt comfortable with and able to express 'me' without having to worry how I sounded or what she would think of, or how she would judge me. We had chatted for about an hour when I suddenly realised that not once did I feel frustrated or stuck for a word. Yes sometimes, I guess, I was trying to discuss an emotion and it took a few words to get to the root of the feeling, but generally as my conversation was about my thoughts and feelings and not superficial things ...

I just knew the words ... as they were 'me'!

So just like feeling the music, I am planning to slow myself down and 'feel' answers rather than having to 'think' them...

I'll keep you posted. 💜

.

Depression, Anxiety and No Tribe

Sometimes when I really need something, it just kind of appears in my life. A few weeks ago someone mentioned the book 'Lost Connections' as an amazing read, so I added the book to my Amazon cart. A few days later I received a voucher, so I ordered the book for free.

I spent the next couple of days reading and understanding what he was saying in it... and thinking how life would be so much different if we had financial stability, a different society, a group of people to support us. A tribe.

A couple of weeks after I finished this book, I see this TED talk from the author Johann Hari. It simplifies much of what he said in his book within 20 minutes.

I wonder what it would have been like if someone was there to support me before, during and after my brain surgery? Would I have felt so scared and traumatised if I was able to talk to others about my concerns and them answering from experience?

This was the reason I wrote my book, 'It's All In My Head', and have continued to try and post articles on my Facebook page, keep writing this blog... in the hope that it would help others when they are facing a similar situation in the future.

Yet I know it hasn't reached anywhere near as many people as it could have. I don't have the connections, the support or the money...

And somewhere in this feeling I still can't be useful, the depression and anxiety are back.

I had a honeymoon period after my surgery where the anxiety and depression I have struggled with since a teen, seemed to have been taken out with the tumour... but they've crept back. It feels harder to cope with at times as I know it stopped and fully wonder if I did something for it to return. What did I forget? What changed in my belief system for it to return? What's causing me to be stressed?

Reading this book and watching the TED talk makes me think it's probably just as my life went back to 'normal'...

When you are ill, you are allowed to cry. To be sad, angry, or release whatever emotion you feel. As I wrote in my blog post on 19th December 2017:

 "A brain tumour made it understandable. Acceptable. OK. I was allowed to feel whatever emotion I needed. 

Justified."

People were there. (Although not Doctors or medical support... but that's a whole different story!) Yet I had more support than normal, a tribe where I felt wanted and worthwhile. People who wanted me to get better, and who listened to the frustrations of it all. Friends brought presents, sent messages or even just give you their time and visit.

"No one tried to talk me out of crying, tell me it was my fault... friends sent healing and support, offers of help,
my husband just held me." 

What happened since?

That support stopped.



People think its all over and I'm better now. I look well. I don't cry all day. (Well not in public!) My tumour is gone. No one really understands how frustrating the side effects are. Feeling trapped in what I can do to change things. Both from my tumour side effects, as well as my life in general.

People get back to their own lives, their own family, back to our society of making money so they can survive.

Society feels so broken in so many ways. 

After reading this book and talk, I wonder what it would be like if someone 'bought a cow' for me now? When I really need support to feel useful and connected.

Is it as Johann Hari says: 

"Depression is really just human beings with unmet needs"? 

A signal of something much more? 

I still have a way to go...

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Autumn Equinox

I don't find this time of the year easy.
It's starting to get cold and I am so not ready for it.
I want spring to start again and give me chance to enjoy a decent summer.
Several more months, please!

Of being able to go outside and feel the healing power of the sun whenever I need it.
To have that 'extra room' to the house, the room that's full of nature.
Plants, birds, bees and butterflies.
To feel connected to life.
To feel connected to ME...



...but the sun is getting cold.
The wind even colder.
The leaves are falling.
It feels like everything is falling apart again.
Having to hibernate until the spring returns.

Life is on hold again.

Today the night is as long as the day.
Tomorrow we will have more dark than light.
I'm so not ready.

I am stubbornly refusing to wear my trainers round the park, and continue to wear my flip flops, even with cold toes.
Crunching through the leaves on the ground.
Wearing a t-shirt and body-warmer, as I just don't want to admit I need a coat.
Appreciating every ray from the sun.

Once we would have harvested our crops for the winter.
But barely anything has grown in my garden this year.

It seems like my life.
Empty.

I feel I'm still needing to plant and grow, not to be held back by Winter.
The cold stopping so much.
I don't want to have to walk around with layers and fluffy jumpers.
I hate being bundled up.
Yet even then I'm always cold.
I hate the cold more.


So today I am struggling.

It's my son's birthday at the end of this month, but I know after that celebration the cold really hits.
I have three long months until December 21st when it's Solstice, the shortest day of the year.
And then another three until March, when I can finally feel some heat from the sun's rays again...
Part of me hibernates each year. 

I was born in Spring, 
I feel that's when life starts again.


After three and a half years, I finally feel like I am in control of my dizziness, my slightly wobbly balance and my head not feeling tight all the time. Enjoying the warmth.
Being able to exercise outside and feel healthier for the first time in years...
I am just about getting used to it.


But each winter since my surgery, I have felt my body stop improving - even get worse again.
The cold wind hurts my head.
The muscles go tight and pull.
The nerves feel the chill.
My head feels numb without even touching it.
I wobble more when I get cold.
My body contracted.
It feels healing stops.

Winter is tougher now than it ever was... 

...but I'll take it a day at a time. 

💜

What Do I Wish my Family and Friends Understood After I had Brain Surgery?

Being diagnosed with a brain tumour, only having one appointment my neurosugeon before surgery, not having any other information other than this meeting, yet being told I needed 'urgent' brain surgery and then having the operation brought forward as even more urgent... all within a month of finding out about I had a brain tumour. I had not had much time to register what was happening.

So when I left hospital (which was only 48 hours after the end of surgery) I was in shock.

I felt violated. 

Confused. 

Trying to work out 'why me'? 

Still terrified. 

Not quite believing it was over. 

Yet elated I had survived.

I felt extremely vulnerable and delicate. My head and neck felt so sore. I couldn’t lean on it, much less sleep comfortably, I needed propping up with pillows, but I could barely do it myself. I felt like a newborn. Everything felt slightly numb.

I couldn't cuddle my 9 year old son, I couldn't even have his weight on my shoulder as it hurt my head and neck so much. I desperately wanted to continue to mother him as before ... but I couldn't. I had to fix and put myself first. Not something that had happened since I started parenting.

I also had all three of my older kids taking qualifications (GCSE's, BTEC and a Degree) yet I could do nothing to support them. I knew I had to put me first. Anyone offering support for them was extremely appreciated.

Then there were the physical effects that I needed to get used to:

My vision was awful, everything was a bit blurry. Plus I felt my world was constantly spinning. I couldn't watch TV to relax as it made me nauseous, it was worse looking at a computer screen. I could manage to send a short text and that was it, I would have to stop and let the nausea subside.

After a week or so I was all but begging for the dizziness to stop, 

to be able to eat dinner and see the spoon go in a straight line to my mouth, not feel like I was eating on a fairground ride.

(I have written about the other side effects I had previously, please see The After Effects of Brain Surgery and Cerebellum Surgery Side Effects)

Household noises such as the washing machine were too much, even a games console whirring was too loud and constant. I couldn’t cope with too many people talking.

Lights also hurt, the light coming through Venetian blinds was in lines and felt like it was flashing! My brain couldn't handle any stimulation.

I spent ages with my eyes shut!

Doing anything was hard. Even walking to the toilet was tough. It hurt to move, I needed someone to walk with me.

I struggled to sit on the loo seat correctly, my body felt fuzzy and so I had to double check I was doing everything ok. Remembering to flush the loo, wash my hands and dry them seemed to be a lot to remember in order.

Trying not to wobble or trip over something, or even just navigate the corners and turning to shut the door.

Finding the right words was also hard, most of the time I could say what I felt relatively well (albeit a little slowly), but try and describe something or give instructions of any sort (where memory came into it) was awful. I knew the thoughts were in my head, I just had to access them and this wasn’t a fast response time.

I was terrified on feeling so ‘out of it’, especially when I got tired. Each time I needed to sleep I had to trust that I would be OK, and it was ‘just’ tiredness and not that I was getting ill or having a seizure or blacking out.

The first couple of nights after I came home, I made my husband just hold me as I kept dreaming of a horrid metal taste in my throat and the feeling that someone was putting a tube in it!

Waking up left me extremely groggy. It took a while for my brain to wake up, and even longer for my eyes to do the same.

I would often lie there with my eyes shut for a while after waking not even realising I hadn't opened them yet.





I wanted someone with me 24/7. To calm and reassure me when the pains were too much or I felt dizzy (I was so scared I would fall over or have a fit) … and also wanted someone to just listen.

Please just listen.

You cannot put it right or change things, 

but just listening and understanding helps SO much. 💜

It was great to see people visiting, but also, I couldn’t stay awake for too long. I needed a morning and afternoon nap (for an hour or so!) for months, if I didn’t then I felt awful and got really exhausted later.

For several days, even weeks, if I tried to do anything even as simple as ordering online shopping, going to an appointment to remove staples etc- it just wiped me out. Physically and mentally. Even months later going to one place a day was more than enough.

As I had barely been able to move off the sofa for months, my body strength and muscle mass was bad enough that even walking for a short distance was exhausting. I just had to build my strength up slowly. Very slowly!


Even months later I was still unable to think clearly, or for long:

 The brain fatigue lasts for not only for months, but years...

I finally feel I am seeing positive improvement three years after my surgery.

I am now able to stay awake for a full day and even go out for the day without having to 'pay for it' later with being extra fatigued.




Yet still, if I have got particularly tired or stressed, my brain starts to 'switch off' again.

I cannot find words, I stutter, I cannot think clearly or make decisions, and my balance and coordination goes with it.

I may act it... but... I am not drunk!!! 

Even though my surgery was in my cerebellum, it effected so many of even simple normal day to day tasks. I could barely read my own handwriting, and hardly anyone else could decipher it!

I struggled to help my son with 'school' work, I couldn't read things out loud correctly, I couldn't say them correctly either.

I felt like my brain was failing. 

I felt like a failure - to myself and my family.

And even three and a bit years later...probably the hardest thing to 'get over' is the fact that:

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