Guidance & Path Finder

I have had an emotional weekend. No, make that a funny few weeks with emotions coming up in every part of my life to be sorted. It has not been fun, or easy...although I have got to the point I cannot handle things as they are and so sorting them needs doing...

It started with not even getting an interview for a (brain) charity position I volunteered for.

Where I said the reason I was applying was as I was a brain injury sufferer (as was one of the requirements they wanted) and want to change things, giving details of what I had written and done since my surgery.

I was offering my time for FREE and did not even get an interview! 

How's that for helping you feel you are useless?!

Then I went to a local holistic event yesterday. I'd totally forgotten about it, but it popped up on my phone so I decided to go along as it felt right.

After I got there I walked to the 'workshop' room and was chatting to a woman there waiting - who just happened to be presenting. It was very interesting as her talk was about how the brain can be reprogrammed, and how negative self talk harms our brain, and with it our health...

Which, coincidentally or not, I have been actively trying to just observe and listen to myself these last few weeks...

Part of what she explained was how you would never speak to a friend with the negativity you say to yourself, yet most of us to this and never even question it.

& I realised I'm the worst friend I'd ever have...

Plus I very much need to remember these words:

"I am enough."

Anyway a while later I walked past this same woman at her stand and chatted about part of my cerebellum being missing and does she think the therapy she does would still work? How I feel that my belief and emotions have got more negative since a year or so after surgery.

Directly after my operation, I was sure my cerebellum would be able to re route all the damage - as after all the cerebellum has the most neurons in the brain, therefore giving it the most chance to reroute itself easily.

Now I just feel I have a chunk of brain missing, and a part of me went with it...

I struggle with things because of it, can't easily do the things that used to bring me joy.. and no one cares or will help me try and improve it.. I am stuck by myself.


She showed me a metaphysical meaning book "Metaphysical Anatomy" that was much more detailed that others I had read in the past and when I read the brain tumour personality description I could only agree with most of the words... this was me to a tee..  
I'm buying a copy ASAP!!
 
For some reason I started talking to her about the fact that after my surgery, I felt I could do something. I had a purpose in being able to help others go though a similar experience. So I wrote a book, blog posts, articles etc to help them, as I felt better than I ever did before... plus I could earn a few £s with it, so it would work both ways ...

...but nothing much is working. I don't get much of an income, only a handful of people a year say anything has helped. 

Much of the time I don't even know if it has helped anyone as I dont get any comments...so is it even worth it?? (I totally appreciate that when you are struggling with your own health and life, thanking others is way down the list of things to do!)

Then I mentioned what my neurosurgeon advised me about not doing any more work with brain charities etc and 'moving on with my life'... and well maybe the universe is telling me this too when I didn't even get the volunteer position?! That I need to do something else...but what???

...just what...?

My enjoyment of art, painting and drawing, is gone as I cannot see or coordinate to paint or even to do a dot-to-dot or colouring book as I once could...
Crochet is a struggle while feeling my hands are vibrating and doing the wrong thing...
How do I manage sewing, embroidery etc when I struggle to even thread a needle?..
My hands feel useless when I even put on my jewellery, let alone try to hold it to make any...

I know people can learn all sorts of new skills... but I am too scared to try again and I know I struggled to even sell things last time, when I could do them easier and better, it just seems pointless even trying now.

She said to me that maybe I will get a new path showing soon, just continue doing things that feel good. 

That, yes, my surgeon was right in that when you keep focusing on the worst thing that has happened to you - your body cant ever let go. You are reminding yourself daily. Subconsciously telling your brain negative messages again and again.

Exactly what I do daily...

I need new messages. 

I wandered away, looking round the rest of the holistic stalls, letting myself be drawn to whatever felt right. I had wandered round most of them, none feeling like it was anything that would be right for me, what I needed now.


Until I got to a stall by a company called Healing Forest where they had the most amazing smelling products made of Palo Santo and pendants made from this wood.

They all were lovely in their own way but  I was drawn to one engraved with a wolf paw - the sign next to it saying

'Guidance & Path Finder'. 

But the pendant shape was oblong and looked too a bit too masculine. I asked if they had it in other shapes and sure enough they had another one in an oval - perfect.  I ended up buying some essential oil & natural incense sticks from the wood too.  It was only after I realised the oil is used for anxiety, depression, headaches and emotional trauma... 

I am now trusting I get the guidance I need. 

When I got back home, I looked up the book on Amazon, and sure enough it has loads of great reviews. But also written by the author is another book "Finding Your Own Voice, Your past can control who you are, until you find your own voice" ... I might be looking at that book too! 

💖

                                                                 






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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:

.

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.

.

Comfortably Numb

After my son’s dental treatment, he had a rather numb face from the anesthetic. The dentist said he would probably start to feel the top of his jaw area in about an hour, the bottom (as it needed far more anesthetic) in 3 or 4 hours.

As we left the dentist I joked with him that at least he would be able to feel his face in a few hours, half my head has been numb for 2 and a half years! I think he understood from the look he gave me 😯 …

As we were coming home in the car he was talking about it, as I replied:

“It doesn’t hurt, but you can’t think of anything else as it feels so wrong”

 – Yes it took me months stop feeling half my head 24/7. I now normally only feel it when I touch my head, or catch my hair.

 

“My face feels heavier on one side” 

– That’s a good description, right now my head feels like its pulling down more on the right, yes, like it’s heavier. “The skin pulling down is what mine feels like too.”

 

“It feels puffy, like my face is bigger than usual” 

– It isn’t, don’t worry. Just it feels like that. After I had my operation I thought they had left glue on my head and for ages after I felt I had a layer of papier-mâché on my skull as it felt so odd. I’ve almost got used to it now.

 

“You can touch it and know you are touching it, but you can’t feel much at all, or it doesn’t feel in the correct place” 

– Totally, I can touch a part of my head and it feels like I am touching it in three different places! It’s very weird and really hard to describe.

 

“I don’t want to do Judo like this, good job its tomorrow, as I don’t want anyone to touch it and also I wouldn’t know if I hurt it” 

– I know, I don’t like this. That’s why when I dropped the car parcel shelf on my head I kept asking Dad if he could feel a bump- as I know it would hurt if I hit it on my head, but all I could feel was the same odd feeling as if I had touched the area. No idea if I could have hurt myself (and why I took some Arnica in case I did bruise it)

 

“My face doesn’t feel ‘straight’ …”

 – Yes, it’s really hard to do anything and feel your body is aligned. You feel crooked even when you are standing or laying straight.

…and we got home, got some homeopathy to put in his water, and sat on the sofa for a while having a hug while watching TV. 

It's funny how children can make you feel better about something? Maybe as they are totally truthful and direct? Maybe they just don't care as much what others feel?