Vagus Nerve Healing

I always look out for synchronicity and serendipitous occurrences since my surgery, as I have had some really helpful and powerful messages when I have been paying attention.

Several months ago on my brain tumour group someone posted about having vagus nerve healing which although interesting, I partly ignored as I couldn't afford to look for treatments. Then I saw article after article pop up on the vagus nerve, and even in regard to anxiety. So I searched it, finding that you could do healing exercises. The one I liked best was by Sukie Baxter - Whole Body Revolution - who has a You Tube Channel  as just listening to her voice was soothing. But doing the simple exercise (here) of literally looking out the sides of my eyes for a minute each side made me feel insanely dizzy after, and the wobbly feeling didn't just for a few minutes, but for the rest of the day.

Yet I felt that as something so simple could have such a dramatic effect, it must be something my body needed. After a few conversations on you tube with Sukie I tried it again, but not looking as far to the side, nor holding it for as long. Again I found it hard to look round to the second side, and realised it didn't matter which side did first, the first side was OK but the second I could feel myself and my vision going in circles trying to focus. So again I had to keep looking a bit further forwards (I reduced it to just over 45° each way), only held it for 15- 20 seconds and also only did the exercise at night so I could go to sleep afterwards without having to walk or feel wobbly.

Over a few weeks I gradually increased it so that I could get to around 70°, although the first side was always better by about 10° than the second side! Plus I also increased the time to 30, then 40 seconds.

Then at some point on doing another of the vagus nerve exercises for anxiety I realised it had calmed me, and so decided to buy the book she recommended to see what else it could help with. Accessing the Healing Power of the Vagus Nerve

On receiving this book I was totally fascinated with the topic, almost every word I could relate to, from the common problems related to cranial nerve dysfunction and the states of the automatic nervous system almost summing up my health, to how the Polyvagal Theory could mean that my body, not my faulty thoughts, was causing many of my emotional struggles.

I sat and cried when it explained that I could be 'stuck' in fight or flight mode and this could be the cause of my now almost constant anxiety, or blank depression. I know that when I still had my tumour, I was experiencing fight or flight fear responses many many times a day when my brain wasn't able to cope with moving around and it throwing me off balance. The sick to your stomach panic hitting me each time. I had explained this to my neurosurgeon, GP, the neurophysiologist, and anyone who has ever supported me since my surgery... No one ever said this trauma might have been 'trapped' in my body. 

Despite this urge to read more, I was only able to read a chapter at the most each day, before I either couldn't take it in and absorb the info (and I know I needed to) or my eyes would physically struggle to see anymore without them blurring. And this was with my reading glasses, or my varifocals on. (or after taking them off, as sometimes this is actually better?!)

It was also informative that my wasted neck muscle could be part of my health issues as people with a dysfunction in the neck muscles are often not 'socially engaged'. (What you should be if the vagus nerve is functioning well)

Anyway, I was keeping up the basic exercise and gradually I realised I was having a few days at a time of feeling less anxious. I also had the urge to 'help myself' a bit more rather than feeling 'empty and blank' and brought some Palo Santo essential oil (which I absolutely love the smell of, and realised it is also for anxiety, depression, and stress - which might have been why it was calling me!) and booked an appointment with the chiropractor. (who I had not seen for months due to lockdown)

At this chiropractic appointment, she did a fair bit of work on my head and neck and I could feel how badly my body had been twisted to one side again, as well as wanting to cry when she gently manipulated my head and neck - I told her 'I still feel trauma is trapped here'. Plus she told me it was my trapezious muscle in my neck that was wasted. (which then explained a lot to me) 

The next morning, I woke to the top of my head feeling so sore, not only the usual sore spot but a bigger area in the middle of my numb patch. It is an odd feeling to describe, but a mix of someone pulling your hair out and sunburn. It felt like the nerves were slowly returning and (as I have found) the pain was one of the first signs of change.

Despite this I had the urge to do things and spent a few days in the garden, planting seeds, getting pots moved and then tidying up various bits in the house.

And... After a few days I suddenly realised I had not felt more than mildly anxious, was much less depressed and my health felt generally better!

Roll on a few months and another couple of chiropractic appointments and it felt like nothing more had changed. I was expecting things to continue as I was still doing the Vagus Nerve Exercises, but the anxiety and blank depression had not reduced further. 

Then, as coincidence has it, in September 2021 my husband had a customer here that happened to be, amongst other holistic healing modalities, a massage therapist. So I decided to try if this would help my neck.

After my second appointment, I had a rather interesting (and what also seemed rather depressing) observation on the fight or flight reflex .... He had released one of my neck muscles and then asked me something about after my surgery (I think on purpose) and as I spoke about it he said he could feel my muscle instantly tense right back up and go back to the same level of tension it was before he started.😲

So even thinking about the trauma of hospital and my surgery, despite not even talking about one of the times that was really tough or emotional, my body still physically reacted. I mean I know my fight or flight has never really gone down, but for it to be this clear was rather depressing, and it felt almost pointless me getting getting any treatment such as a massage to help if it just instantly goes back.

 

But a couple of times during the treatment I had just cried for what seemed like no apparent reason. I hadn't been thinking of anything that would make me cry, yet tears were just running down my face.  So I accepted these tears needed to be released and just sat there allowing them.

 

However to my surprise, after a couple of weeks and not really doing anything else too different to what I had been for a while, I suddenly realised my stress and anxiety levels had reduced considerably!  

Now, me being me, with the memory of a fish at times, after a few weeks I forgot to keep up the Vagus Nerve Exercises, I simply didn't remember to do them more than occasionally before I went to sleep.... but the anxiety, although not gone, had very much reduced. 

 As ever, it's a work in progress. Brain injuries and trauma take their time to improve! 😁

 

Accessing the Healing Power of the Vagus Nerve: Self-Help Exercises for Anxiety, Depression, Trauma, and Autism
Stanley Rosenberg

 
"Accessing the Healing Power of the Vagus Nerve is a practical guide to understanding the cranial nerves as the key to our psychological and physical wellbeing. Drawing from the polyvagal theory of Stephen Porges--one of the biggest new developments in human neurobiology--Rosenberg explains in easy-to-understand terms how the vagus nerve, in particular, has a strong role in determining our psychological and emotional state, especially when it comes to how we relate and react to other people. By understanding the physiology of the autonomic nervous system and practicing simple exercises to restore proper vagal functioning, we can learn how to improve our emotional state within minutes. Those suffering from anxiety, depression, panic, and trauma will find much that is useful here, as well as those with physical ailments such as chronic pain and digestive problems. Additionally, because the vagus nerve is a key regulator of social interaction, therapy for proper vagal functioning has great potential for helping those with autism spectrum disorders."

Comparing Recovery Isolation & Corona

We are now almost 3 weeks into being isolated at home. My husband and I both started feeling ill on 16th March, spent the next day in bed. No it wasn't romantic, we both were feeling full of flu aches, with temperature, headache, nausea, dizziness, fatigue and me constantly coughing.

Two or three days later our two older children then started feeling ill, mainly with headaches, body aches and a temperature, so I had to try and get drinks for everyone, cook dinner etc while really not feeling up to it. I decided then that having a brain tumour was actually an advantage as it meant I was already used to cooking and doing chores when I felt dizzy and fatigued with more than a bit of brain fog! 🤔😬

A few days into our illness, the UK went into lock-down, so we couldn't go out anymore anyway. 

My husband was basically ill in bed, or the last few days dragged into the sun lounger in the garden to get some vitamin D, for 9 days. It took us both about 2 weeks to even start to feel normal again and cook without feeling totally exhausted after, even though we then lost our sense or taste and smell and still felt tired. 

At some point, or two, my husband complained about how slowly he was recovering, how fatigued he still felt, and how slow his brain was working... each time I laughed! I know I shouldn't but I did say to him, "Now do you understand?"

Almost 3 weeks later we are still a bit more fatigued than usual, I'm still coughing but otherwise things are back to 'normal'. Whatever that is now... 🤔

I know I have read someone else talking about there not being much difference being isolated after brain injury to Corona lock-down a couple of weeks ago, but now we have had 3 weeks of only going out twice to get food and I wonder ... 

Is getting over brain surgery any different to this forced isolation? 

The only more negative things now is it takes me ages to get a shopping slot online and it's not even guaranteed I will get one, half the products I want are out of stock, food costs me more money, some of the places I shop from are closed, or only open for short periods, and post is taking ages. I also can't go to visit my parents and the garden centre is closed. I am also missing my weekend escapes of going to my husband's gigs. 

It's also the same in that once again my family have no income. Last time it was as my self employed husband had to look after me, this time as all his work has been cancelled. We are used to living on tax credits. We have dealt with it before, we will do so again 💜 

On the positive side... I only felt ill for a week. I was able to walk the dog again after 9 days not 90. We have been able to tidy garden, plant seeds - all nicely growing me veggies, sort house, finish off building a recording studio for my son, put up shelves and make things and have even ordered paint to update the hallway. I have time to sort out and now need to list the 100s of books I want to sell. We have a pile of items to take to the tip or charity shops once they are open again.

And, most importantly, this time others (even those than have not been ill with Corona) UNDERSTAND how you are feeling. 

Isolated.

Thing is, 

I had already been forced to get used to it. 

Now its almost quite normal ...🤔😬

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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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It's a LONG Recovery...

It is now almost 3.5 years since my surgery to remove the tumour, yet I only just feel I am getting my health back.

I admit I have had for years a bit of an exercise phobia as well as health anxiety which had stopped me doing what I thought was 'too much' for many years. Then about 10 years ago I was diagnosed with chronic fatigue. Not really any answer or what to do about it, but it somewhat helped to have a label as a way of explaining to others. 

It never felt right though.

So in 2014-15 when I was really struggling with my health and energy and could barely manage more than basic tasks, it just seemed I was getting worse. I limited myself to one task a day. If I went shopping I didn't do it on a day I also took my son out. Everything was planned so I didn't run out of energy.

In 2015, after a meltdown, I decided not to help my husband with his self employed business as I just couldn't manage it all. Not that I was doing a lot to start with. 

That year gradually got worse. If I did too much I'd need to rest for a day or so after. Then gradually the feeling I was 'not quite right' started, quickly changing in 2016 into feeling a bit wobbly and off balance, then into feeling downright drunk (Even though I am teetotal) Not to mention the strange shooting pains in my neck, going into my head - like someone flicking an elastic band at me ...

By January 2016 I was almost sofa bound. I had been told by doctors, physiotherapists and osteopaths that I needed to rest my neck, that this should stop my dizziness. So as the headaches started I just stayed there more, to the point that some days I could barely get out of bed from the pain. Needing to have a routine just to be able to sit down without it feeling like my head would explode. 

Yet the doctors still didn't think there was anything seriously wrong. Although I did get referred as non urgent to a neurologist for in another few weeks time.

By the time we gave up with the NHS and I had my private MRI, I weighed 8 stone 7. I felt like I was too skinny and ill. This was the day I was told about my tumour. The chronic fatigue finally made sense! 

Just over 2 weeks later at my pre op appointment I weighed 7st 13. 

I was wasting away. 

I was told to fatten myself up. But as I didn't have much appetite I just ate loads of chocolate!  And I did get to a pound or so over 8 stone the day before my op. 

This picture was taken on the 15th May, 

the day before I went to hospital. 

Even though I only spent 4 nights in hospital in total (2 before and 2 after surgery) by the time I came home my legs were so thin that when I looked at them my shinbone was sticking out as the rest of my leg fell away from the bone. It was horrid.

I had so little energy.

It took me over 3 months to be able to walk a short lap around the park with the dog again. I couldn't even manage to carry a washing basket upstairs. When we went to the beach it was as much as I could do to walk through the sand to get to the sea. I was shattered after, needing to sleep.

For the rest of the year I still had to rest after I did anything, even just walking the dog. 

However in March 2017 I decided I needed to challenge myself to get fitter, plus also challenge my belief that I couldn't exercise. So I tentatively started to go in the outside gym as I finished the dog walk. I knew I looked pathetic so I tried to go there only when no-one else was there. Thankfully it often was!

 

One exercise machine I could barely even lift, as it hurt my neck so much. Well I managed to lift two! 😂 Three of the others I could only do between 10-15 repetitions and I was shattered, although I did manage 30 on the leg press! I could only manage this and then had to come back home to rest, feeling my brain was shattered as well as my body.

Anyway ... Despite wondering why I kept it up, hoping that at some point I would get the benefit of being fitter- and not just far more exhausted, I continued with using it whenever I could. Yes I missed whole weeks at a time, but even in the winter I tried by putting a plastic bag over the seats so I could use them when they were wet. 

The fact my collie dog Enzo is a creature of habit and walked into the gates of the gym each day without asking probably accounts for most of the reason I went! 😬

Anyway... This summer I have finally noticed the positive side effects. 😊 

I felt muscles in my arms!😂

Not only that I no longer get so shattered after doing almost anything - my body is fitter from the exercise and no longer constantly reducing my limited reserves. 

To some what I do is still useless and laughable, but I know how much better I am, and where I started from. I am now able to do 100 repetitions of each of the 3 arm exercises, and the one I could only 2 of I can now manage 20. 😁 A 10x increase is not bad! Plus I have almost a similar % increase with being able to use the various other weights, 'twisting' waist toner or my time and speed on the cycle machine.

I have for the first time in my life muscles that I can feel, and almost see, in my arms. The habit of making myself go there has finally become almost pleasurable! 

So many times it would have been FAR easier to stop...

But for someone with chronic fatigue for years, brain surgery and losing most of my muscle mass and weight from being stuck on the sofa for six months ... I am proud of myself. 😇









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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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My Tree

I love this tree.


My, now adult, children used to climb it when we moved here 19 years ago. It was their stopping point on our walk back home from nursery and then school. One of my sons got stopped by the local policeman for being too high up in its branches without supervision! 😲😂 Until the poor man saw me marching towards him (about to ask was he really telling a child off for climbing a tree) and he suddenly decided to leave...  I've realised over the years people tend not to argue with a redhead.😇😂

We first took our dog as a little puppy out of the house and he sat near this tree.


My youngest son is almost 13, yet still climbs this tree frequently and swings on the branches like a monkey. He is that child that sits in trees when he is angry!

Over the years we've often looked at the ladybird eggs and larva on it. How there are more ladybirds if there are greenfly on it too. Well I did - as they climb! 

I know my own grandad, who was born in 1923 in a house less than 100m from my door, used to walk up this very road (then a cart track with fields at the side), scrumping apples on his way to school.

My Nan, Grandad, Mum and Aunt used to live in a house almost opposite mine as young children, also walking to the same school as my older children did.

... was this tree here then?


Connected.


Each day I walk the dog round our local park, use the outdoor gym when my body and the weather are up to it, and unless it's pouring with rain or blowing a gale I sit on the now almost fully broken branch at the trees side. Even when it's wet and I don't want to sit, most of the time I will still lean on or hold one of its branches for a few breaths.

I breathe in the tree. For almost a year (since I posted this - Even Trees Wobble)  I have now consciously sent it's balance and connection to the earth back into my body to help ground me. To stop and accept my wobbling.

Even when it's branches are moving the roots are firmly in the ground. Strong. What I need to feel in myself.



It helps.



I often lean my head back onto its trunk. Leaning on the horrid numb part of my skull that I cannot feel properly. It feels like the trunk is extending into my brain, down into my neck. The 'board' I feel in my head when I lean on it like this.

But as weird as it feels it also feels alive, that the tree is somehow reconnecting my head, my cut nerves.

Or that it doesn't matter. 

None of it matters in the scheme of things.

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Butterflies and Clouds

Last Monday I was still feeling stressed and upset, trying to decide what is best for me and how to move on. So at some point while I was walking round the park with dog I asked the universe out loud to send me some positive signs... Something with nature - so 'I know'.

Birds, butterflies etc, my thoughts that one of them might land on or sit next to me.

Just send something to soothe me that I wasn't in this alone 

and things would get better ... 

Then it poured with rain after so I never got outside for the rest of the day 💧⛈🌧. (English summers really are depressing on so many levels 😥)

But Tuesday was sunny, and I finally sat down in garden (after a trip back on bus from A&E with my daughter, Calla, who had twisted and sprained her ankle - thankfully not broken!) I was just lying on the swing chair ... Exhausted. Soaking in the, much needed, warmth from the sun. 🌞

And suddenly I saw this beautiful butterfly flying around me, then it stopped and rested on the skin of my leg before flying off again! 🦋 

Then as I continued to watch it fluttered back and sat on the fence right at the side of me, only a few feet from where I was laying. It sat perfectly still for about 5 mins, barely even moving it's wings. After this time I realised I needed to go and get my phone camera, and even though it took me a while to find the phone, the butterfly was still sitting there, yet as soon as I took a picture it flew away.

Now I know to some this is not an unusual occurrence, but we really don't get many different butterflies in our garden (just Small Whites, various brown Gatekeeper types or tiny winged butterflies) and we almost never see a Red Admiral. Maybe one or two a year, even if I have spent the summer basically living in the garden! In 19 years of living here, I have never had any butterfly actually land on me ...

Something told me: "It will be alright." 

Oh and just after I recalled that I had actually asked for this very thing to happen the day before 😊
I looked into the sky to see a cloud that looked as thought it was similar to hands making a love heart shape! (The cloud being the hands, the heart the space in between was blue sky)

I sat and just looked at it for a few seconds before I fully realised it was a cloud giving me a heart sign in the same way a person sends a heart sign...then laughed to myself saying:

 

"OK. I get the message." 

My attempt at taking a picture wasn't that great as I had sat smiling at it for too long before I thought "I need to keep this reminder" and so the clarity of the heart shaped cloud had very much started to disappear. But still the message was there for me ... that the universe has my back.💖

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Decisions

I have not had an easy week.

It started off with my vomiting for most of last Monday evening and while I may have physically stopped puking the rest of the week has had a similar way of kicking me in the guts... 

I had been thinking about doing some charity work. I have been pondering it for a while and decided to actively look at what is local and that I feel I would like to support and also can relate to. I realised there is an aphasia charity, Dyscover,  nearby. Not exactly sure what I could help with but they want volunteers and I can relate to the frustration of not being able to say things when you want and either going blank, saying the wrong word, as well as people looking at you like you are drunk.

Or I found out there is a Headway office less than a mile away from Dave's workplace. They support people with all kinds of brain injury. 

I also know how that feels! 

Both I feel I can relate too, but also both charities should understand if I struggle with the emotional or physical side of volunteering, the trying to get self confidence back that I am worthwhile, dealing with feeling wobbly, tired etc 

So I mention it to my family and get told that if I want to get out the house then why don't I get a job? 😕

Um ... 

As...

1) I haven't had a 'job' for over 25 YEARS.

2) I don't want want to work for others. I don't like being told what to do or like how our society works. I don't want to be tied. (Hence why I've only done self employed work for decades)

3) Who the fuck would employ me? (With my lack of skills and attitude to a 'job')

4) I still get tired easy, am clumsy, say things wrong and get muddled.

5) I want to do something meaningful for society (and me!) not just stack shelves in a supermarket, or some other 'no qualifications needed' job. I've done brain dead cleaning and washing up at home for kids for the last 25 years, I want something more.

6) Maybe, just maybe, I would get on well and be offered a part time job doing something I enjoy after, or I could write some articles for them? 

I get told that they think it's a silly idea and given all kinds of reasons why I shouldn't even consider it. 😟😭😡

I also mention about wanting to move to somewhere more rural and get told I am "running away" ... ?! 😲

So last Thursday afternoon, massively upset with these feelings that 'no one understands', I finally had (after months of waiting) my appointment with my neurosurgeon,  Tim Jones. 

I actually thought I might go there alone, so I could fully explain my struggles without family judgement. But after deciding to lay down in the sun before my appointment to relax, I then felt wobbly, off balance and my neck hurt. I didn't want to drive feeling blurry as I don't feel I react properly when I feel like this. So I needed a lift.

I get there and talk to him. But within a couple of minutes, and a couple of tissues from my crying later, he simply tells me:

"I think you have PTSD. I will refer you to neuro psychology"... 

I honestly didn't know whether to laugh or cry - as for so long I have asked people for help and support and been told I'm either ok, need to get on with other things, forget about it etc and not once has anyone offered to get me help! 😬

He also listens to my issues and tells me: "Your tumour is out, I haven't had any that have grown back". (And he had no concerns at all, and that my issues are all nerve damage.) He basically tells me I should really try and move on. Get support to do so, (hence why he will speak to the neuro-psychologist) but try and let go of the surgery and move on...

I totally get him. 

But...

I have no past I want to go back to..

no future career or plan that makes sense...

The only time I'm my life I felt I have actually helped others (except my kids - but 3 of them are now adults!) was in writing my book, my blog posts, or speaking to others on Facebook groups and via my page. Others who are, or have been, where I was, who tell me they have been helped in knowing they were not alone. 

I had a purpose - and one far bigger than me.

I explain briefly about thinking of working for a 'brain' charity and he says he doesn't know if it will keep me stuck in the pain of the past by doing so... That I need to move on.

Yes! Maybe this is part of the reason I want to physically move house? To give me new surroundings that don't remind me of having a brain tumour...😔

It's not just my brain craving the peace of more open country since my surgery, for 15 years I have wanted to leave my house for somewhere different. Get out of Surburbia. Now it seems the thoughts are shouting at me... make that screaming... rather loudly...
 

I so get it. 

But to move on with my life?
Moving on emotionally? 

I often see, read and respond to posts on Facebook from others with brain injury or brain tumours. I am held in the past with others reminding me of it daily. Yet it's still current. My body is reminding me of it daily too. It's still very much a part of me. I'm still struggling from the after effects. 

So I have spent the last few days thinking 'What do I want?' 

What would I do if I didn't have to worry about income or others thoughts? 

There is a small part to me that reminds me I love painting... But I have also grown out of love with how painting now makes me feel when I struggle with my vision and hand control. 😢

I love being outside - but I cannot do this in the winter as I get too cold far too easily. 😕

and ...

I love writing. 😁 

I can do this when I am tired, emotional, energetic or happy. Plus it can help others? 

⬌⬌⬌⬌⬌⬌

I feel that I 'can' move on while still helping others? 

It makes me realize that I have already changed - for the positive. (Even if I have several issues I need to still work on... who doesn't?!😬)

I think I can help others as I have been there. 

To hell and back, in various different ways. 

I understand.

Mr Jones said he thought I seemed more upset than I did before my op... But I said "oh no. No way."  Back then I was terrified, totally lost and out of control. 

Now I am upset. I need to move on, do things for me and get some power back. The tears are knowing I have to change but I don't really know how. They're finding my strength. 💗

I still am unsure if I should stop my Facebook posts and/or not look at volunteering at brain charities. Or if I should continue with one or both of them, knowing how far I've come, knowing the gratitude that I'm no longer there.

Oh and I think my midlife crisis has hit ... I need to find 'me' again... 😳😰😂

"If YOU have any thoughts, experience or guidance on this, then I'd be grateful." 💗

 

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