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.

 

 

 

.

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. 💖

.

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. 

💜

Coping with Anxiety

Anxiety...

I admit I have spent FAR too much of my life with anxiety (mostly health anxiety) and had finally got it in some kind of control ...  just to be told I had a brain tumour and needed urgent brain surgery! Although brain tumours were (rather ironically) one of the things I’d never actually worried about...🙃

Anyway, after the operation and despite all my inbuilt negativity of what might go wrong...

I had survived! 

Not only had I survived, I did not need the blood transfusion that I had been told was ‘likely’, was relatively ‘with it’ after the surgery and didn't need intensive care, was able to walk the following day (definitely better than I could pre surgery) and then had been discharged from hospital just 48 hours after surgery ended! (Much to everyone's surprise) … I was on some kind of high!

I had realised that even being in my idea of a place of terror (a hospital!) I could either be ‘my normal self’ - and feel nothing but fear and panic, or I could trust I was in safe hands, that the universe had my back and be calm. 

I had fought several inner demons in those few days, walking myself into surgery (rather than being wheeled in a bed or chair as apparently everyone else does?!), knowing when I needed peace and to find it even when I was without support, walking up the corridor and stairs the day I got discharged. 

Dealing with the insane dizziness that meant I felt I was totally drunk and out of control, along with ignoring the feelings that I just wanted to sob in a heap until it had all gone away…when I couldn’t. 

I had no option but to face it all…

Yes I definitely had some stressed days after. Yes scanxiety hit big time for a few weeks with each follow up MRI, but it wasn't so 'inside' me... somehow I could override the fear brewing inside and trust.

But the last few weeks, or maybe months, I have started to struggle again...

The feeling that I was still recovering and things would get better, is now tinged by the realisation that after 2.5 years I will probably always have some reminder of the tumour and surgery. That I am never going to be fully ‘back to normal’. I will probably always wobble a little, feel slightly dizzy and unbalanced at times, a bit out of control and my head not feeling properly there. I will probably always have issues with saying the wrong words at the wrong times, my memory and thoughts being harder to process. 

Reading books is now nowhere near as easy, I cannot easily comprehend them, especially when tired - Once a joy it is now a task. My hands, eyes and coordination might never work as well as they did before, I cannot enjoy doing my art as before...heck I can’t even make a straight line between two dots easily, the line wobbles as I move my vision! … My abilities have changed.  I HAVE CHANGED!

I no longer know what I am good at…

Also the thought that 'if' the tumour came back it would likely be a few years after, the fear that maybe my next scan would show it? Or I would start getting symptoms again? Any sign that reminds me of the symptoms starting last time I feel could be it coming back again and instead of thinking I am still healing, I start to panic... I don't honestly know if that is factual or not, it is probably more likely in the first few scans would show any issues as my neurosurgeon seemed happy I had two clear scans... but also know many people with hemangioblastoma’s have had re-occurrences, some several of them. 

Somehow the anxiety that it could return has hit...

Then, a couple of months ago, I had a few days of 'that’ headache waking me at night. Pains in the back of my head, just as they felt before. Basically about the time the anxiety started. (The headache I have not had since these few days...yet the panic is still there...)

At this time I also had a couple of days of odd dizziness and vertigo, where I kept doing things just slightly off centre and then the feeling of moving when I was still, or as I lay down. Even at the time I knew I didn’t have it exactly like this before or after surgery. (This time it felt the bed was sinking and rising and that I was spinning round more) But it terrified me… I felt I just couldn’t handle this again. The GP said she thought it was my ears and yes it seemed like when I had vestibular neuritis last May, but that time I had just had a scan the previous month and had only just been told all was ok…  

 

Realistically the issues could well have been a virus or something, but my thoughts were not being realistic...

Plus it was about this time of year three years ago that I first realised something was wrong... starting in early December with odd sharp pains, brain fog, unreality and gradually increasing into the extreme dizziness and agony. Not to mention I don’t much like Christmas or winter from a multitude of past experiences.   

I am sure some of that fear is stored in my cellular memory...

And my body is still so unfit. For sure it is better than what it was two years ago, when I had basically spent six months living from my bed to my sofa, and it took me three months after surgery to even manage walking a lap of the local park again! But I still need to sleep SO much, I still cannot do some chores for too long without feeling shattered or aching after, I still cannot do much at the (free) outside gym (not helped by the fact I can’t use it much in the cold weather and so each time I have used it recently I feel I am going downhill again)... 

That I can’t just go out when I want- I have to plan it, to sleep beforehand... 

and my life is controlled by this... I feel old! 

Yet I’m not... I am 44!!!

So the anxiety is back... probably with more than a bit of annoyance, frustration, sadness and anger thrown in!

I also seem to have forgotten the things I did which helped me before. Like half the other things my memory seems to have let go of… It wasn't until I felt awful and stressed a few weeks ago that I remembered why I had been taking pharmaGABA for the past few years. Yet I had stopped taking it as I had simply thought I don’t need to take them anymore, and I can’t really afford it,  totally forgetting they helped my anxiety!... (Yes, I brought it again as soon as I remembered and it did help a fair bit even in a few days)

I have started making myself remember and feel gratitude for what I DO have, the lessons my tumour taught me, how the body can heal and the support I have.   

Remembering that winter and Christmas is always my hardest time of year ...but we have had winter solstice, it gets better (and lighter 🌞 ) from now...

Looking after myself is a priority again.

...so I am sharing. As one thing I have realised (and remembered!) is that when I share my fears they start to dissolve a little, I know if I 'had to' I could cope again...bloody hell I did last time and I was TERRIFIED beyond belief.

…and maybe someone who reads this will also be helped by knowing that they are not alone.

 😘💜

http://jobarlow.co.uk/stone_heart.html

December Anger

So here we go…trying to cope with anger, stress, anxiety and depression yet again…

I am feeling angry with me, with life, with humanity… right now SO much stuff in this world is screwed up. From brexit, to tories, to people starving, to all the hate filled ..ism’s, 5G, destroying the planet, vaccines, to the fact people just don’t seem to care (unless it effects them) or only when they see that an animal they like is being hurt! (which 'is' good in that they have compassion for animals- but why can’t they also see the people in the streets or being starved in war with the same attitude? Instead of somehow thinking they ‘deserved it’😞) …

And its all but winter…its dark, cold and depressing and so it makes all of the above seem worse. Every year. For months.

A couple of weekends ago I have no idea where the massive anxiety came from  … but it was horrendous. The only way I can describe it right now is the quote from Harry Potter when Mrs Figg is in the wizengamot ‘court’ over the dementors and she says:

 ‘it was like all the happiness had gone from the world’.  

I thought these feelings had gone since after my brain surgery, so them coming back makes it feel 100 x worse, and that somehow I am failing ...again... 

I am also really wanting to find a way to get money... 

(as while I know people say I should do it alone) I find talking to others, taking supplements, CBD oil, getting craniosacral therapy or bowen or reiki helps me… and I want to desperately try out some neuro work… see if I can get any more of ‘me’ back… but for these I need money... 😕

And ‘I’ would like to make the money. But then I think what the fuck could I do?? I cannot do something where I have to carry things or might drop something or crash into people, I couldn’t do something where I was expected to give a quick reply, and I certainly couldn’t do something that required too much energy… and I don’t have any marketable skill…which leaves…fuck all!

Hardly helping me feel any better about myself…

I can’t do my art as before (not that I even made much money before) and I am trying hard with my book and blog etc … But I don’t know if it’s because I am shit, not many are and will not be interested (after all who wants to read about a brain tumour? well unless you have had one!) or I am doing it wrong. Yet hardly anyone shares things nor even seems to think its worthwhile.

I really appreciate it when others say a comment has helped them, as it somehow helps me too - in knowing I am not alone as much as anything. Plus the fact I 'can' do something useful ...

And I know others say I seem ok. But I don’t think they have any idea how crap some of it is… 

How my hands and eyes feel… 

I ended up trying to pull Roan’s blind up the other day and fucked it up and smashed his dragon figure he made that was on the windowsill 😥 … then trying to glue it back I couldn’t get it together easily as my hands and coordination are so shite… it’s like doing a job with cold hands that are not working properly. I can’t hold it right. I can’t see it right. 

Or peeling veg and I drop the veg, the peeler, cut my finger or my nail… my hands feel like I have weakness and are all curled up. 

My vision changes all the time...

I cannot look at things close up as they go blurry or I still can’t connect brain to area right (like trying to colour in a line, let alone do fine art) Sometimes its ok, others its truly awful. I am trying to improve my sight/brain coordination with doing complicated dot to dot drawings, but I still cannot match the lines up much of the time...

I have no idea why or when it will be good or bad. 

It’s so depressing.

And saying the wrong words… 

I ‘sometimes’ know I am saying it wrong, sometimes have no idea I’m not. Trying to find the words is hard, especially when I am tired. Or giving instructions. Or when I need to answer someone quickly (You should  hear some of the odd greetings I give people when walking the dog and am not expecting to say something! 😳) 

I don’t think people that don’t know me take me seriously anymore, as I sound stupid.

Much of the time I am probably not able to say 10% of what I think as I can’t respond in time or find the words… 

When I am tired I have to say it stupidly slowly and simply… most of the time I am not angry at anyone, or trying to be annoying… I'm just fucking frustrated and depressed. I've been told I sound pissed off, but its as I am pissed off with ME! 

The head symptoms - and the numbness, holes in the head, head and neck pain and itches inside are the easy part quite often… yet supposedly (or so it seems) the only ‘problems’ I should have. The only problems that any one will acknowledge. (apart from others I know online who have had the same tumour and surgery) …

Like the rest are made up, that no one else has noticed I cannot do some things or speak straight…

Today I can type quite well, sometimes I write ‘mroe lik etthis and is drievs me madd’.  

Same as sometimes I am exhausted all day and yet others I can stay up till 1am, even after doing things all day with no problems. 

Some days I feel grounded and balanced, others that I am all but bouncing off walls again. And feeling wobbly and shaky inside.

I never know what I am getting…so how can I plan anything??

Some days I am so exhausted and low and thinking I am going stupid I don’t think I will ever get old… just grateful that I have managed 2 more years than nature would have given me…

I don't know if many people can actually appreciate and know how shit this feels?? Not just that I ‘should’ be dead … but that my mother is probably fitter than I am… and my brain is more fucked too.😭😭😭

Then this past week or so has been the pits. ‘I’ am the one who can’t go out anywhere easily. As it is too exhausting or anxiety provoking, or we don’t have the finances. I don’t have the energy to look after me some days let alone our children…. And then I hate myself that I am not there when I 'should be' for them. Or as, like everything else in my life, my memory had gone out the window and I have forgotten… 

…yet even if I remember. With what fucking energy do I do things? My last bit? Do I destroy myself in looking after the kids better??  I had to force myself to get out of bed today…the last thing I needed is reminding how shit a wife and mother I am…

…but sometimes, just sometimes it would be nice to feel good about me, and what I am can do. That others appreciate me and not just because I manage the washing and cooking that day ...  but that I have been productive and useful.  

Plus ... I would love to be on top of my anxiety and the stress of going places, being the responsible one who feels strong and healthy and doesn't have to worry that she will suddenly trigger something.

Fear that the exhaustion and fatigue will hit and I want to sleep when instead I have to get home, that the dizziness or brain fog will 'paralyze' me with fear. To be able to relax and have fun and not keep worrying what is up...

That I control my body, rather than my body controls me...