Photo memories ...

I was talking to Dave, my husband, recently about photos. That he has so many pictures of me that are totally unflattering - mainly as for some reason I tend to look as pissed as a fart in about 90% of the pictures anyone takes of me 🙄🤣 Even though I don't drink and am sometimes the only sober person in the shot, I tend to look the worst! 😬

 

He has photos of me that to many would be blackmail material ...countless double chins, or in a bikini, walking around in my undies, or bending over or some similar, not so flattering, and often rather wrinkly, angles.

 

But I just laugh at them, at me, as I honestly don't care. 

 

Why? 

 

As after this photo everything changed.

 

He took this photo of me 7 years ago today - the day before my brain surgery was due. We had just been told, that bar emergencies, I was having my surgery at noon the next day. 

 

As he took the photo, of me holding the matching fluffy toy rabbit to my 9year old son's one at home, whilst trying to type to friends online to hold me in their healing thoughts and prayers for tomorrow (it wasnt easy with vision affected by hydrocephalus); I was just sitting there wondering if this would be my last ever photo? Or maybe the last one of me ever being 'even vaguely normal' again? Would I forever be struggling, a burden to my family?

 

I was terrified. Possibly more terrified of waking up not fully with it or severely disabled and having to rely on others, than I was of not waking up at all. 

So when I woke up, while being wheeled out of the theatre 6.5 hours after entering it, seemingly intact, able to talk, then over the next day seemingly recovering as was expected, being able to walk (better than I had for months 🙏) yet still feeling as drunk as a skunk and struggling with it and the constant visual movement. All that mattered is that I had survived, plus had the hope that I would recover to something like a 'normal' life... 

 

I realised - nothing trivial mattered anymore.

 

These pictures are from the day following surgery,  the first when I was still in special care and wired up, with a drainage tube directly into my skull! But the relief is showing...along with actually looking like I struggling from having my head opened up for a few hours!! 😬😂

 

 

And with these pictures, what I did know, is how I thought I looked didn't matter one iota. 

 

It doesn't matter what others think of me, but what I think of myself and at that moment I had just love. I knew I needed to love myself, accept myself, trust myself...and life. Something I wasn't that good at doing.

 

I no longer cared if someone thought me ugly, wrinkly, grumpy, or anything... 

I knew right then I was totally unfit, looked like shit, had no energy, my face showing the trauma I'd just been through, totally at my worst... but I didn't care. 

 

I was alive. 

 

I was human and having a normal human response... So does anything else matter?

 

Many others are too scared to show their own humanity, and hide it under a veil of make up and fakeness... But why? 

 

Why do we all have to pretend? 

 

Pretend that we are skinnier, more toned, more beautiful, have the perfect pout or whatever...  just not actually being yourself. 

 

Like what the fuck is a filter about?! 🤔😂 To pretend you're 20 again? Hey, fuck it, I'm 50 next year, and I'm happy if I've got a few white hairs and wrinkles... It's better than not getting this old. My life could so easily have stopped at 42...

The last few months before these pictures were taken had shown me I could no longer pretend at all (not that I've ever dyed my hair, had my nails done or gone to a beautician!) I'd been reduced to being totally dependent on someone else to look after me, then more to save my life. (Not even able to see the mirror even if I wanted makeup. Although it would have soon been smudged all round my face from tears anyway!) What good was looking nice to please others? Absolutely fucking nothing! 

 

So, as long as no one is violating or ridiculing me ... You see what you get and post what you want. (and if you do want to ridicule, take a long look in the mirror first and work out why you feel its acceptable to laugh at others? Does it make you feel a better person as you actually feel worthless yourself? 🤔)

And yes, sometimes I do put on make up and dress up... I even have been trying to make myself fitter by going to the outside gym daily... But thats a whole different story.

7 years.

Yet it seems like it was only a year or so ago, but also forever, at the same time. 

 

Thanks again Tim 💖✨

Medical Cannabis

I posted a link to my blog post  'Scanxiety and Medical Cannabis' on a few other Facebook pages for either brain tumour or traumatic brain injury (TBI) patients last year. I was astonished with the sheer amount of others who openly admitted there that the also used medical cannabis for their brain injury.

 

Why is it not openly spoken about that cannabis is helping

 brain injury patients?

I actually copied down four A4 pages from just the comments! (excluding any names)

Here are a few of the replies:

"I swear my cannabis has worked wonders for me. I have taken no prescription drugs, only self medicate with smoke. Great for depression, anxiety, pains overall, keeps me on a normal level - but most won't understand a brain injury and just think we are druggies😐"

"Totally agree, I hate taking prescription drugs and not a massive drinker. I’m not ashamed of how it massively helped me. I used a vape version along with more CBD drops for most of before and after my treatment, it helped with my nausea and anxiety! It also helped switch my brain off so I could sleep!"

"I agree! I would recommend the vape pen version!, I’ve tried many edible versions but because they take a few hours to properly get into your system, its hard to judge how much you need, I much prefer my vape pen as its a more instant relief, especially when my anxiety is high or I'm too overwhelmed! I really only micro dose with it as I dont use it to get ‘high’ and I just take 1 or 2 puffs and instantly my head stops being frantic, (A vape also means I can take it out with me and no one is the wiser 🤷🏼‍️)"

"I made sure I spoke with my neuro team quite openly about it and of course they are not at liberty to say to use it but they had no reservations about it!"

"I never used to use it before my ‘terry’ appeared and I made sure I did my research before hand 👍🏻👍🏻
If speaking out about using it can help someone else with crippling anxiety and PTSD then its totally worth it! Thank you Jo for talking so openly about it!! 💕💕"

"I use cannabis regularly and while I have no medical proof to share, I am 4 years living with a GBM4 where my prognosis was originally 15 months. I believe there was a big study in Madrid University on the subject, google that for more info."

"I take the CBD form of cannabis. I take no meds for my brain tumour and I do believe that its helps to keep it stable. No shame to taking it as I do believe or works. Irrespective to other think if you feel it does something for you then do it."

"I agree with this, but I would suggest to start slowly... Think 'micro-dose', until you find your level."

"I take CBD and it has kept my tumour stable since starting to take it."

"I use cannabis for the migraines that no pain med can touch. It usually clears it up fast."

"Yes, it's the cure 💚 that and magic mushrooms 🙏💐 it repaired my brain damage from being unable to work or even hold a conversation to applying as a background extra in a Hollywood movie (and I got the part!😍) I would recommend cannabis in any form to anyone 💚"

"I smoke some every night to get out of pain and to sleep. It is a God given miracle herb."

 "Use it nightly. Have been for past 20yrs."

"THC with CBD helps my severe seizures tremendously. Nothing else works as well."

"I use it twice a day and do pretty well...( Sometimes more). It just depends on what your need is. For some people it does not take much at all. For me I have mental health and pain management issues. But I can tell you I have not had a migraine in two years."

"Cannabis is my primary source of medication, and has been for 11 years."

"Edibles are the ONLY thing that helps me sleep."

"I’m in NY and have my medical card.... life saver for pain and sleep."

"My dad is a massive stroke survivor, he gets his to avoid a seizure. It also helps the awful pain he gets in his “bad” side."

"I use it all day everyday. Helps with the all over body pain and with the anxiety I have every day."

"I have had my medical card since 2014. Best thing to happen."

"I used to drink alcohol a lot before my TBI but since I got hurt I dont drink anymore. My doctor's told me to stay away from booze because its not good for brain injury rehabilitation. I do use cannabis medically. I used to use it to just get hi before my TBI but now I use it instead of taking the pharmaceuticals the doctors were trying to get me hooked on."

"There are two types, Sativa and Indica. Both with vastly different outcomes. Before you invest heavily, you will need to try different varieties that are prescribed to you. My mom needs Indica for her stroke injury and husband needs Sativa for his bike accident coma 35 years ago.  I use CBD pain cream for my bad knees, but I work for the state, so THC is a no-go. I love the CBD!"

"I use cannabis daily. My brain injury caused seizures and I'm still trying to stop the seizures and I'm trying to find the best strain for that."

 "I use high THC-V strains, helps with energy and focus."

"I use both CBD and a THC. I use indica for sleep or during a migraine to help me relax. CBD is a life changer....better than any other pain meds I have ever been given.2

"I use it daily. Helps to ground my flighty brain."

"🙋🏼‍daily user here.

Yes! high CBD low THC tinctures. 4 drops under the tongue. Highly recommend for settling/silencing body and mind for a full night's sleep. I especially love the fact that I can have a glass of wine with dinner and not worry about interaction if I find I can't get to sleep. Truthfully, it's a game changer."

"Yes, it's the only thing that makes my headaches go away."

"I have honestly, I find it brilliant for when I get really anxious or have bad symptoms, has to be done in moderation though as it can make me feel worse."

"I’m taking capsules best thing even if it’s for a decent sleep xx"

"I swear by it the THC and CBD oils x"

 

 

Planted in a raised bed in Ground

This book Medical Cannabis was also really helpful in reassuring me cannabis was safe to try, and I will look at these other books recommended in their further reading - The Cannabis Encyclopedia and The Cannabis Grow Bible, when I need to find more information on growing.

                

£30 = enough plants to last all year.

 

 

 

        If you are interested in growing your own... 

        Cannabis seeds are available from Seedsman where 

        you can search under various medical conditions 

        and what type of seeds you want. 

       They need to be brought soon if in the UK as to

        grow outside they need to be planted around April.

 

 

 

If you have ever grown vegetable plants and have a vague knowledge of growing, then planting the seeds in a tray on windowsill and moving outside (covered from slugs) when a few inches tall outside worked fine. I grew mine alongside my tomato plant seedlings!

 

You then need a tall greenhouse for when they move outside (that you may have to raise up even more as they grow TALL) and either very big plant pots or an area in the ground. I used a raised flower bed, filled with tomato compost on top off the garden soil. (as you can see above) Make sure you only fertilize them with edible plant foods, and keep them covered from slugs until they are about a foot tall, then they are pretty resilient. Just make sure you undo the greenhouse cover when your neighbours aren't around!!

 

Seedsman have plants both with and without THC (the part that makes you high) and CBD, they also have various conditions are listed under 'medical seeds', you can then chose if you want a low or high THC amount.

I personally stopped using just the THC plant after my nightmare episode I wrote about here. Once I stopped taking it (and I didn't ever take enough to make me feel high, except this one disastrous occasion) I also felt my anxiety reduced (although this could have been as I had my scan etc) so I totally stopped taking any THC plant for months. In February I did try adding a small amount in with my high CBD mix, but did not notice any benefits, in fact when I stopped I felt my anxiety reduce again. So I dont think my body tolerates the THC well.

Last year I ordered these Dinamed CBD plus which grew really well, but this year they were not in stock so I am trying Queen CBD 20:1 which suited many of the reasons I chose to take them including Anxiety, Fibromyalgia, PTSD and Stress. I will see how these grow this year!

I know that growing the plants is illegal in the UK, but my GP knows about it and says she could probably get me a medical cannabis prescription, but personally I'd rather use a plant that I have grown than a pharmaceutical type product any day... I know exactly whats in it and trust a plant more than a drug company. 

I am not taking it to get high, and have a far different reason to how many use it. In my eyes if the legal drug - alcohol - is available to all, so should cannabis. I fully believe if enough people start growing their own for medical reasons we can stop the criminalisation and make it a valid treatment for many. You can also chose to buy a CanCard if you want the extra reassurance.  

If all these brain injury patients above recommend it, then it should be available to all - a years supply for the price of 3 seeds, some compost and a greenhouse. 🌱

 

.

Scanxiety and Medical Cannabis

After the horrendous experience during and after my last MRI scan I'd decided for the last couple of weeks to take some cannabis tea. Using lots of the ground leaves so it should have more CBD in it as well as THC. The CBD oil I had bought and had been using for several months was now only giving me very limited benefits.

My logic being it might help calm me and also help treat the neurological issues I still have. It seemed to be working as a few teaspoons of tea a day just lowered my stress levels, and the shaking inside seemed to stop.

But on Thursday, I came downstairs to see letters written by the NHS on the table. I saw the logo and felt totally sick to the stomach. Even though a few seconds later I realised they were routine letters for other things and two were not even addressed to me, the internal stress didn't go with this knowledge and I still felt really anxious a couple of hours later...

So I decided to make some more weed tea and once it was done took a mouthful, as I had done with the last batch. I few hours later I took another gulp and after hour or so another...

I felt calmer, very slightly wobbly, but nothing worse than I have for the last 4 years, I was even going to post a comment saying:

 "So basically my brain has felt like it's been high

for the last few years,🤔

Maybe I should accept this feeling more? 😂" 

I felt fine and made dinner ... Although felt slightly more wobbly as I was finishing my meal. Thought I'd have some ice cream and ate a bit, then tried to look at my phone and forgot what I was doing as I was doing it. 

Then my head spun.
The full going in circles like being on a fairground ride... 
The memory of waking up after brain surgery and then first trying to sit up... Everything blurry...
The trying to eat when my world was spinning... 
The thinking I would pass out... 
Not knowing if it was panic or a brain response, but that fear was not helping one bit... 
The violent, feel sick to your stomach, nausea.

I all but ran up to bed crying and shaking. Nothing would stop the revolving vision. Me feeling totally unsure if it was having too much tea or what...

I'd not had that much more than previously, although it was another, maybe stronger, brew and still warm. I was not able to remember how much I'd had, I couldn't quantify a mouthful to know if it was too much or not?

My thoughts still not sure if it was the tea, a panic attack or my brain was fucking up again...

I knew I'd had a vestibular neuritis episode a few weeks after my last MRI. Maybe that was the link?

Anyway, I won't bore you with the next few hours nightmare thoughts, but fair to say I relived every single fear, trauma or sensation I had before, during and after my brain surgery. 😱 Each memory seemed like it was coming up to remind me I'd felt it, maybe not fully faced it, and that somehow it still traumatised me. That I'd not processed these fears yet and never really discussed them out loud.

I had visions of walking to the toilet in hospital ...
when I couldn't see anything as my world was spinning so much ...
crying alone in hospital as I felt so terrified and tired ...
reminders of blurry, spinning vision ... 

and the ultimate terror of feeling I was drifting off while laying in theatre as I was given anesthetic for my surgery - Not knowing if I would actually wake up again nor be able to walk or talk OK if I did ...

I had horrendously strong memory of every fucking traumatic experience while feeling dizzy before and after my brain surgery, as well as every severe panic attack that I'd ever had where I'd felt out of control and dizzy.

All in one evening. 😰

It took over 2 hours for the violent spinning and feeling I would pass out to go. 2 hours that felt like days... Weeks... Months...Years. All compounded into one.

Yet part of me also felt totally stupid, I'd been sipping tea for a couple of weeks, why suddenly did I feel this horrid? Why did I drink an extra mouthful so close to the others? The one evening Dave wanted to go out...

I don't drink - I stopped when I was 18! I know I don't like the feeling. I am sensitive to almost every medical drug I've tried. If I have too much dark chocolate I get shakes from the caffeine, don't drink even a normal tea and certainly not coffee, sugar gives me a jittery rush, gluten or milk = belly pain and feeling slightly poisoned. I can taste a drop of alcohol in a glass of water... (Yes my kids tried it!)  I am all but in a coma from taking one antihistamine, I am a zombie on co-codamol, the Heparin injection I could feel for hours, I can't even have more than one paracetamol without nausea and Ibuprofen is worse- hence why I stopped pain killers 2 days after brain surgery!  I get like I am drunk just when I'm tired ... 🙈 What the hell was I thinking? 😬


I'd taken months to even take a sip of the tea as I was terrified of feeling wobbly again. I had only taken it before bed for a while, just to be sure I wouldn't feel it. Then one tablespoon only by day. Why the fuck did I sip it? I know I can't cope with feeling drugged! Since I was a kid if doctor's wanted to give me painkillers I refused as I'd rather have pain than this feeling...

Then I started panicking again that it wasn't the tea, but more brain episodes I can't cope with... only the fact that I couldn't stop drinking water reminding me that it probably wasn't that!😅

Eventually after midnight I felt calm and safe enough to go to sleep and not feel it would be the last thing I did. 😬

I woke about 9am Friday, still feeling shaky inside, still feeling slightly wobbly when I got up.

But mostly just like I'd had a battle with my nightmares and every bit of negativity my body knew and held on to.

I managed to get some porridge that was made for me, then just watched more TV and tried to stop myself getting stressed again. I knew I just needed to sleep more, brain surgery was a great teacher in knowing when my brain couldn't cope any more. Eventually I fell asleep and woke about 2 1/2 hours later. Feeling a bit better...

Yet wondering how anyone could have so much stress inside them and still function?!

I'm now too scared to drink anymore tea, feel an idiot, and like I have been reminded of all the darkness and fears... Anxiety, frustration and anger back to after surgery levels 😩

The only positive is that I know when you keep getting reminded of hell, you appreciate the light again better...🌞

 I then saw this picture show in my news feed the following day!

I'm not ashamed about using a plant that has been proven to heal many, many people of all sorts of issues. I have heard of several people controlling or even healing their brain tumours from taking it... Especially as it is known to be very good for all sorts of neurological problems as well as anxiety.

I am purely wanting to take a natural plant to IMPROVE my health, rather than relying on toxic pharmaceutical drugs that almost certainly damage it. 😕

I am far less ashamed than I would be if I chose to get drunk, and yet for some reason that is a totally acceptable thing to do. 🤔

I might just not take as much next time! 😁





.

Feeling Worthless

Today someone posted an article online about people drinking tap water in bars and restaurants, and how it was ruining business… which I do and don’t understand. As while I can understand if loads of people did this they would have problems, realistically how many people actually drink water in pubs and are not with someone who is drinking? How much does it actually cost them to leave a water dispenser on the side for the few that do? Making the pub suitable for 'all' the people who want to go, not just those who buy loads of alcohol! Plus, if you are an eating venue and most people want to drink water with their meal, then surely you just increase your food prices? 

But I commented explaining the reason I don’t drink paid drinks - is as there is nothing I like available in most pubs or restaurants. I don’t drink alcohol, nor colas, nor the typical fruit juice drinks with loads of unhealthy aspartame, and I don’t want to contribute to plastic pollution by buying bottled water. So as they don’t sell herbal teas, coconut water, natural fruit presse or fresh fruit juice (the only things I drink) … basically, I am left with tap water. (Which is what I mainly drink at home – I’m not just being tight)

I was curious to know how much a pub would think I could ‘donate’ for use of glasses etc and asked them this. (I know pubs legally have to offer you tap water). The reply was to pay the same as someone would for cola etc?! which somewhat confused me as tap water is all but free and they don’t have to buy it like they would cola. The suggestion of £3 a pint seems a bit steep when it’s from a tap!

I offered to pay a couple of quid towards costs, but apparently that 'wasn’t touching it'… so after a very rude "even if you don't come in again I'm at no loss 😂" I realised I am clearly not wanted in this particular pub and so won’t be going back. 

No matter that I advertise their pub each time I go there (I advertise Dave’s bands that play in the venue) and people come with us to see the band, talk to me etc. Plus, I am driving which means my husband can have a drink, and we often take another 1 or 2 people with us – also drinking! If I don’t go then Dave will only be able to buy 1 drink as he will have to drive, meaning they will lose more income than if I was there?!😑…but hey ho I know when I’m not wanted…

But today this has made me really upset.

I felt attacked. 

Like I am not acceptable as I don’t conform. (Although I admit I don’t know that I want to conform to pubs either!!) But I thought this place understood me, that I don’t drink alcohol, that I had been ill (and so probably couldn't even if I wanted do), and all the rest… but I realised that belief was bullshit. As IF they cared about their customers, they would have realised that I bring in more money than they spend out on me! 

Not to mention - I don’t spill drinks, get violent or vomit in the loos! Nor forgetting that (at first) I was more than happy to give a few £s towards costs anyway. 

But they obviously see me as worthless to the pub. On the surface I don’t pay anything, and they can’t see beyond that.

Do people think that of me as a person? 

As I don’t work and don’t ‘contribute’ money to society? 

Forgetting that I have raised 4 children, 3 of them adults. Who hopefully don’t need lots of support of health resources as I have brought them up the best I can, two of whom are working and helping others in what they do. Paying taxes. 

A few years before my brain tumour, I was self-employed with Dave helping with his website work  (and we did other self-employed work before that, and before that I was childminding), but a year before I knew about my tumour I stopped working with Dave. My fatigue was getting worse, I couldn’t cope with his work, the house and looking after the kids … when I found out about the tumour it all started to make sense.

My brain, and therefore body, had been struggling.

Last year Dave had to get a ‘proper job’ (as well as being self employed) as he’d lost most of our customers when I was ill as he had to spend so much time looking after me. Although, as he had been here daily since my surgery, I was terrified of him not being here each day. Before we knew he was going to start working there I gradually built up my tolerance to trying to cook dinner each day, managing by myself and not falling asleep. 

Some weeks I can do this OK, as I feel mentally and physically fine. Yet others I cannot. I feel so useless saying can he cook when he has just got back in from work.  At times cooking dinner seems as hard as saying 'you need to climb this mountain tonight'. Its not just the physical energy, it’s the coordination, the planning, the remembering not to burn something and get the timings right.

Even when I do cook if I am tired, I need Dave (or someone) to run through what I am doing. Who wants what and when shall I start it? 

It sounds absolutely pathetic even saying this, 

but the brain blank is just ... well ... blank!

I desperately could do with some extra money, but what do you do when you struggle to wake, still need to rest or sleep during the day.  When I am tired, I struggle speaking and cannot explain myself easily, make loads of mistakes, drop things, get confused, can’t give directions or instructions, or even stay standing up for long ... plus I don’t have any means of transport now and even getting somewhere on the bus uses up much of my mental energy…

I would like to do some kind of voluntary work, which would hopefully lead to an income …somehow. Working with those with a brain injury. I have been there – I understand. But I don’t yet know how...? I love writing and wish to combine the two.

I have been told my book, blog and Facebook page have helped others (I have the loveliest of emails from others with brain tumours thanking me💜) But I don’t get paid much for writing - yet!

So, in the meantime, society makes me feel worthless. They cannot see (just like the publican who can’t see I bring people buying drinks to the pub) that I am helping others. Yet maybe if I write a blog post, or give someone else help and support, it means they won’t need another nurse appointment or to see a counsellor, or that I encourage them to eat better and improve their health… even get back to work quicker?

So today I am feeling worthless… and attacked. 

It hurts.

.

It's Tough, Love, I'm Being Kind Instead!

I have recently had a friend struggling with anxiety and depression after a stressful event, and people saying a few months down the line that ‘Tough Love’ is needed and that my beliefs on helping them cope are wrong.

From my experience this is why I think 'tough love' is dangerous and unkind... 

If someone is struggling they want your understanding and support, not your judgement? They already do enough judging on themselves!

Yes of course you can ‘encourage’ them to do positive things - going for a walk, getting some sun, doing something they enjoy etc, but not by saying “Right that's it, you need to do ‘this’ now”... And frogmarch them into it implying it will solve their problems...

(It won't!)

I know many a times someone has said similar to me, and I have just felt like a part of me died inside...

I don't think I can count the amount of times I could have just driven into a tree or something after a 'pull yourself together' type comment... Only the thought of not being able to do that to the kids stopping me...

I also don't feel that one of the ‘recommended methods’ by many men I know of getting pissed and blocking it out helps ... Emotional pain is now being seen as the cause of most addictions as well as linked strongly to the stress - disease connection!

Not facing or dealing with something painful and so somehow blocking it with habits... ‘Good’ habits such as being addicted to the gym or working or ‘bad’ habits such as drug addiction, gambling and alcohol. Or holding it in the body for it to remind you with illness that you haven't dealt with something a few years later.

Take a look at Dr Gabor Mate for more information or his books ‘In the realm of hungry ghosts’ - about addiction or 'When the Body Says No' - about the mind-body link. (book details below)

As a teen, and especially after my then boyfriend unexpectedly drowned when I was 17, I was never ‘allowed’ to express my shock, anger, fear, depression, anxiety etc - my emotions scared my parents so they tried to shut me up each time I said anything by distracting me. I was even drugged (by a doctor!) on the day he died to help me block it out!

I think they were doing the best they knew in a time when ‘mental health’ still had somewhat of a stigma attached and ‘Mother's Little Helpers’ were still accepted by many!

If I am honest, much my teens and 20s were totally shit, I still had flashbacks to this time and anxiety attacks. Never 'allowed' to openly express my feelings. As much as a tried my best to hold it together and distract myself, my anxiety and fear often turned into anger...

It was only in my mid - late 30s and addressing my physical health issues by listening to my body (and the pain it held), reading numerous self-help books, looking into the mind - body connections, and talking to many people (who actually listened to me!) while finally being honest and true to myself , that I gradually realised many others also suffer (in silence as it was not talked about) from anxiety and depression and that I needed to release it...

I have said before being 'allowed' to cry with a brain tumour also released tons of past pain too - the times I was basically told to 'pull myself together'... (I wrote about being ‘allowed’ to cry with a brain tumour but not with anxiety here)

You know what helped me most...? 

Someone holding me, a friend on the phone saying she was praying for me and sending me healing & love, someone listening and saying I will be OK, a voice reminding me that I am OK now - just ride it, don't try to force change my thoughts or think that I need to stop them, allowing me to feel the emotions fully, but which also allows them to pass... 

Feeling it all.
Sobbing it all out from the core of me.

That healed.

It healed far, far more than 'that's enough' ever did ... Those words, or tough love, only put the blame on my weaknesses. Made it something that I 'should' be able to deal with if only I was brave or strong enough ... But I wasn't, so it made me feel I was failing even more ...

When people say now in passing that I should put my experience of a brain tumour behind me, it just hurts SO much... Don't they think I would if I could?

But as much as my thoughts about the experience are 1000 times better, they haven’t yet healed. I wish so many times people would happily let me discuss another fear that it brought up, still brings up... rather than implying they are bored of it or that 'my thoughts should have healed with my scar.'

Just talking about it releases it...

Every day, many, many times a day I am reminded about it, it may be a thought or a feeling. Yes primarily about the past - such as a numb head - a reminder as its not causing me pain now, but a memory of what happened.  

But also frustration and anger...   when I say something wrong, when I cannot find the correct words or I don't understand something, when my close up vision is fucked and I am not able to do something, when my brain feels exhausted, when my balance doesn't feel right or I wobble... Yes it's not just the past I can't let go of ... It's the here, the  NOW, reminding me every damn day. 

Reminding me I should be dead.

But also the fears of will I ever get fully better or will I always struggle?
Do people think I'm stupid? (I think many do, even if I don't really give a fuck...😙)
Will age worsen symptoms?
Will the tumour return? 
And if so how much physically lower will another op take me?
Could or would they even operate?
What if they can't?
Is feeling like that again - and worse - how I will die...?  

Plus all the horrendous thoughts of the anxiety and fear from being dizzy 24/7, of not being able to do anything to help myself (I couldn't even read and get information or advice as was so dizzy I couldn’t focus on a screen) the fact it never stopped and gave me a break...
 
That I HAD to go to sleep terrified... Just having to trust I would be ok.

I can see now that even the few months of this struggling was 'temporary', but at the time it felt it was never ending, I wanted someone to give me an 'end date' for it, so I could focus on a goal. But like depression or anxiety, it reduces, it might even go away, but you never really forget it.

Do people really think I am fully over that???

Yes of course I'm grateful the worst is over and I am alive!!! That it’s so much better than it was.

But it certainly hasn't gone... The only way I could totally forget would be to block it with drugs... Or alcohol... Internalise it until my body reminds me I have to listen again...

Anyway... It IS my past.

I'm proud of it and even if the power from it goes in the future (and I don’t cry when I talk about walking down to theatre!) it also will never be fully gone, it’s part of my history.

My scars. 

And I damn well want to help others who are in that same hole that I was find a way out... Throw them a few stones, ropes and ladders so they can hopefully climb out for themselves.

Give them what 'I' wanted...

Support them and offer them hope and trust.

Nothing will make me do any different.