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 💖✨

Dental memories...

Today was interesting. It brought up lots of memories and emotions.

My son needed a filling, not that awful in the world of parenting, but to both of us a little traumatic.

As we were waiting for this afternoon’s appointment these past experiences were running through my brain…

Him as a six week old baby, ill in hospital. On one occasion, just after Dave left to go to collect the older kids from school, they decided he needed IV fluids. So I had to watch as 2 nurses and a doctor held down my terrified and screaming baby while I watched helplessly. I didn’t have chance to discuss if it was the right thing to do, Dave wasn’t there. 'I' had to consent. (Although if I hadn’t I think they would have gone against my wishes and said I wasn’t capable or something) 

It was all down to me, yet I couldn’t protect him or even hold him as he was taken to get this IV tube in. 

I admit it traumatised me - I was terrified, I knew that I had to make the ‘right’ decision (whatever that was!), and he was ill. But I also knew that antibiotics can destroy the gut biome as so didn’t want them unless there was no other option, yet the nurses were making out it wasn’t even a concern! I couldn't have a decent conversation to discuss it properly. I felt ridiculed for my own thoughts, opinions and experience. 

I felt sick. Sick and powerless. 

Not helped that my family were away on holiday (well at my sister’s wedding!) and that Dave and I had to look after the older 3 kids as well as one of us stay with our baby in hospital, so we had to find our own practical and emotional support. Plus. A rather large shadow in my background- my baby brother died as a newborn when my own grandparents were on holiday- it felt like history could be repeating itself… my mental health was shot for several months, or even years after…

Then in 2015 he needed a couple of fillings, one in a baby tooth and one in his adult one. The dentist did the baby one fine and then got to the second and muttered ‘Oh, it’s deeper than I thought’ and kept drilling… suddenly I could see my child looking rigid and terrified (he had forgotten to raise his hand as she said to do if it hurt) and so I asked him if it was hurting, and he shakily put his hand up! 

The dentist looked at me like I was interfering but I didn’t give a shit what she thought, he just sat there silently shaking that it hurt, terror and fear in his eyes, while I calmed him and gave him some rescue remedy. She then told me (rather irately!) that she 'could' do a further numbing injection, but that she had done the part close to the nerve now and it should be OK and he wouldn’t feel any more… so we agreed to let her continue. What else could I do with a deep hole drilled in his tooth? But as I held him I could again feel him tense right up as he felt pain, silently crying. 

We went home and I just had to hug him for several hours until the tears, pain  and fear had subsided.

Then the last time he needed dental treatment he had a baby tooth that was sticking sideways. I had managed to get to see a different dentist to the one before, who said it needed pulling out (and gave us a couple of decent reasons why) and reassured him she would make sure he couldn’t feel it, and he trusted her (and me!) He was due to go back a couple of weeks later if it still hadn't fallen out.

Actually how I managed to get myself in the surgery that day I have no idea, I was spinning violently, I felt sick and exhausted and couldn’t take much in, but my concern over him somehow over rid my symptoms of feeling ill. 

The week after this I was diagnosed with my brain tumour. So at the appointment to pull the tooth I was in no fit state to look after myself, let alone him. Dave took him while I sat at home feeling the most useless mother in the world, sitting on the sofa sobbing. 

Plus fuzzy flashbacks of the times I saw him in hospital when I was admitted with my tumour… the day before my operation when he walked in the ward with my Mum, looking terrified, sat on the bed and hugged me. Everything felt unreal and blurry from the hydrocephalus and the tumour, and in this haze I didn’t know if it was the last time I would see him again.

I just wanted to hold him and say it would be alright but I was too scared to do so… I didn’t want to lie. 

Again I just sobbed as he left... I never wanted to do this to my child... Up until this point he had never even left me for a night! Now I was having brain surgery, had already been in hospital for a night, still hadn't got a definite date for surgery and was due to stay 5-9 days afterwards!

Then after the surgery, when he walked up to see me – I looked haggard, with my hair a mess and 2 huge stapled ‘zipper lines’ in my hair that he asked me to hide! – and the simultaneous look of fear and relief in his face. Again he climbed on to the bed and just sat and hugged me, the fear pouring into me to be absorbed while I just held him tight. The relief holding him had on me too. He had told me he was shaking and had felt sick on the way in plus he had needed to take some of his homeopathic remedies I had told him to use when he wanted (along with simple terms of what to use them for.) 

Thankfully at this point Mr Jones had come in and discharged me - three days earlier than we had been told was even possible!!!… So we just both sobbed a bit more while being told this news and as we realised he could go home as I would be back later that afternoon to see him. Brain surgery wards are not fun to be in – I wanted to leave too! 

Believe me, there are times when a hug is so powerful and this was one of them, etched on my soul… 

…so today, I have felt all of these strong emotions again, several times over, before we even got to the dentist!

 💞

Then Dave sent me a message (I was talking about not wanting to take him to the dentist alone) saying ‘I could do it… I’d dealt with worse!’ and yes something inside released and I was actually quite calm in taking him there. 

Again sitting by his feet while he was in the dental chair and holding his legs (I slid a chair next to him, so I could hold him near his feet- I don’t care if its normal or not) I felt I was finally saying ‘I am here’, and letting go of my hurt from all the times I hadn’t been in the past.  As well as for the guilt of the past few years when I was too tired or simply forgot to remind him to brush his teeth…

Then sudden realisations once again hit me. When he was a baby, being treated by others, and I was in a panic –  he was OK after. When he, or any of my family, has done anything 'bad' since – it has all worked out fine in the end. I even had my skull drilled and opened up, a surgeon in my brain! The body can manage so much more than we (or just I) give it credit for. 

How many times have I stressed over nothing? My worrying (once again) helping nothing. Just as with my surgery, and everything else, I need to trust he will be OK.

Why can’t I just stay tuned to this guidance?  

 

💜 👼 💜

 

 

 

Washing Away The Past....

 

 

 

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