Friday 7 January 2022

Kindness Payback

Today I got a kindness pay back.

I have just had a hospital appointment for hand therapy, for my fingers that have been curling since my brain surgery. The hand where my control of it is getting worse. That no-one else I've seen on NHS has seemed to think was related to my surgery, or damage after it, despite it happening just a few months after. Where they have had no idea of the cause, the nerve conduction tests coming back normal previously.

I had been feeling really stressed after arriving there, each door I passed having signs saying 'face masks mandatory,  no exemptions' ... so after walking past about the 10th sign - as the therapies clinic is at the back of the hospital, I was feeling like going home. But knew I had right to get medical treatment as much as anyone else. I am medically exempt from a face mask and they cannot discriminate. I have my exemption lanyard attached to my handbag.

I walked in awaiting the 'where's your mask?' And got nothing, not even asked to use the, also supposedly mandatory, hand sanitiser (which I can't use as it makes my hands peel), the receptionist not saying a thing. But I still felt like I had been awaiting a battle and it still wasn't over while I was sitting waiting.

I got called and the therapist didn't question me either, nor looked phased. And I was there almost an hour! 

This time both the therapist I saw, and the other therapist sitting next to her, said its clear you have ulnar nerve damage. If you can't easily think of another cause that you might have damaged it, then yes your brain surgery or the trauma to the tissues after, which could include my posture, is the most likely, or only, cause. 🤐 She explained that the nerve tests aren't always correct as I may have been tested on a good day when it was working fine, as well as damage can take a few years to show on nerve tests. 

So I now have a load of exercises to correct what I can, plus a referral back for more nerve tests. As after all as she pointed out, if the wiring is broken no amount of fixing the appliance will make it work! 

I finally had two people who agreed with me on the cause, have some idea on what needs to be done and I had acknowledgment I'm not just making it up or imaging it. Its only been 5.5 years!  😬😁
I walked out feeling a bit exhausted!

Then, I was in the car park trying to pay for my ticket. It was £5. I had it in change, but one £2 coin was rejected first time,  I tried three 50p coins twice, with no luck, was counting 20p pieces and struggling with my hands being able to grip the coins correctly to put in the last 30p... 
When the man at the ticket machine next to me just zapped the card payment on my machine and said 'Don't worry, I've paid it for you, its sorted' ... and walked off, as I just stuttered "Thank you, thank you so much"

And as the ticket returned, along with the money I put in, 

as had he. 💖

I got in the car and just sat and cried for a few minutes. One, from the relief I have on leaving a hospital OK - which I found stressful long before masks were part of them. Two, as I had finally got confirmation what I knew about my hand being triggered from something during or after my surgery. And three... 

 ...that someone I didn't know had just made it so much better, 

just from being kind. 💖

Its reminded me, that when I am physically and mentally able, this is why I talk to everyone or just smile... 😘

And this is why I spend time on my Facebook group for others with the same brain tumour... 
Getting someone's message on being told they can leave hospital 2 days after brain surgery! 💖
"Thank you for all the support over the years and for this page! It's honestly been such a massive help. Especially as we are all told we make our symptoms up. Xx"

Paying forward  the kindness and love that strangers showed me when I was upset in hospital waiting for my op... 

Someone caring can sometimes make ALL the difference 


And sometimes you get it paid back 💞





Wednesday 5 January 2022

Brain Fog, Fatigue and Frustration

When I was in my 20s, the only time I felt exhausted after doing basic daily chores was if I was ill with flu or similar, or struggling with depression that took all my energy out of me. And as that included looking after 3 children under 6 at one point, one at school, one at nursery and a baby - it was pretty damn tiring. But I was back at the supermarket when baby no 3 was just days old with the other 2 in tow. I just kept going and got on with it.

In 2008, while in my early 30s, I got diagnosed with Chronic Fatigue Syndrome. I don't know if it was the added stress of a 4th pregnancy and child, trying to look after 4 kids who were always at different schools whilst I had no car during the day- which involved a timetable and a lot of walking, or the fact my anxiety and depression had never been addressed and my childhood and teenage traumas were catching up with me? Whatever the cause, I was often needing a rest, although I still did early mornings for schools, football early at weekends and all the shopping, meals, housework etc as well as helping Dave with our part time work from home business. 
By my late 30s I was struggling more, Dave was by then working from home most of the time and so cooked some of our dinners, but as various health issues appeared, I often felt run down or with a sore throat etc. So, I conserved my energy in only doing one tiring thing a day, changed my diet, took some homeopathy and supplements and I felt things slowly started improving.
For a while at least! Until in 2015 I just couldn't cope and wasn't able to do any extra work for Dave.  Even sitting on the PC doing simple data entry made me tired and stressed. He told me to stop and rest myself. 2016 was when I found out about the Hemangioblastoma in my cerebellum. 

Especially as the neurosurgeon thought my tumour had been there for years, 

if not decades, it might have explained a lot... 🤔

Those first few months after surgery were interesting... I was tired after walking to the garden at one point. Had to make sure I got everything I needed before I climbed the stairs. I still remember feeling happy I finally could walk my dog in the park alone after 3 months! In total, it's a 15 minute walk.

I have mentioned the fatigue a few times in the immediate years after, as well as the reality and understanding of what neurofatigue or brain fog actually meant to me here.
Roll on 6 years after I first really noticed I had something major going on with my body (I first saw the Dr's in January 2016, it took until April for a diagnosis) And yes, the fatigue is better and not as frequent, but it certainly hasn't gone either

I have managed to do things such as spend a couple of days landscaping the garden, or moving flowerpots and items around while re-potting plants, painting the lounge walls and redecorating for a week. However, each time I do something more major by the time the second day is ending, I am too tired to even think about cooking, or almost eating at some points. I struggle to find even the simplest words for either someone to help me with something such as help move some shelves, or to explain a task such as the dishwasher needs to go on. I often end up all but crying from tiredness and the frustration of being so exhausted from just doing what many could do easily. I need to go to bed at 9pm and just can't move anywhere. Plus I am certainly tired after, often for several days.

Last week I had a head cold, then my husband a flu type illness these last few days, and although he's not asked me too do much, a mix of me still feeling snotty, him fidgeting at night and so I'm waking up, plus having to more chores as he can't do them, and I'm exhausted again. I've fallen asleep in the day several times, gone to bed in the day as I cant think, even more. 

I have had a few days where my head feels like it's made of cotton wool that's simultaneously being pulled tight around the outside. My scar area aching and even the feeling of 'the wooden plank' down my head and neck comes back. Unable to think what I want to say easily, then saying the wrong words when I do. My vision is awful and my reactions slow and dulled. 

To everyone else this is what you feel like when you've got flu, or been on the piss all weekend (or Christmas!) me it's just when I'm tired. Yes I don't feel like this every day, but frequently enough to say I have fatigue.
Not after doing something extremely draining, not after a really big emotional event... just a small daily task or event that has been a bit tougher than average, often one where you think it shouldn't really cause an issue.
Actually, talking about events, it was our sons wedding in November. It all went brilliantly and I enjoyed the day, albeit I was wanting to sit down alone by 6pm as I felt so tired! I could feel I was starting to say things that were a bit weird and didn't want to explain to every last stranger:

"Oh hey, sorry I'm talking odd, I'm not drunk,

 I just had a brain tumour" 

Sometimes it's easier to just let them think I might have had a few! 😬
I had to leave a bit early at just before 11pm as I could feel it was fully getting too much. But the next day... I went out in the car about 10.30 to get some bread. I could barely think. My head felt like mush, it almost felt like my brain was vibrating from the fact it didn't want to be working yet. I felt a bit wobbly and totally not with it. My vision not working properly even with my glasses on. It was just awful, and all from emotional, rather than physical tiredness. I often think that is far worse.

 If my body is tired, a sleep helps. If my brain is tired, not much helps. 

I rested as much as I could that week, tried to get out in nature and all the things that help, but it still lasted about 10 days before I felt I didn't have brain fog and wanted to cry anymore.

One of the things that gets to me most is when others seem to think its a competition in who's the most tired. Like that's a competition I want to win!!😬 People who say they have insomnia often saying they are tired, but (often) can still get on with things. They can work, still do most things people take for granted. I can't seem to explain that when I'm tired, I need to go to bed and physically rest. I can sleep for 9 hours and still feel exhausted and unable to think.
I can't go out again without a rest, nor walk to the pub, or see a friend, or even do a hobby. I can't even paint if tired, I just spill or drop things everywhere and cannot judge distances or see enough to do what I want to do. I ruin the work I have previously done. I can just about write, as long as its the basics of what I am thinking at that point, something I can edit later when I have more brain power. But I still have to deal with the frustration of making writing legible or correcting each word when I type. If you see me cooking and all the objects going flying you would wonder how I don't hurt myself more often!
If I want to go out late in the evening I need to have at least a 45 minute sleep in the afternoon, although it often takes me another 45 minutes to fully wake up again after! Yet people see me that evening and say I look and seem well, not realising that going out was the only thing I could plan for that day. On the few occasions I have not been able to sleep beforehand, I either really struggle talking or coordinating myself that night, or am just far too tired to do anything or go out the next day. Once the neurofatigue has hit, I can't read a book or plan things, or do a task such as organising the food shopping, well not without doing much of it wrong.
Then there have been some times that I have been physically exhausted, such as after painting the house and I am tired, but feel fine the next day after a sleep. I think it's as I actually enjoy doing that, it doesn't overwhelm me and am not finding anything too emotionally tough. I do know its worse when there is too much visual and audio stimulation or I've been talking to people who I dont know well - those I dont feel I can talk to without judgement from. I can sometimes almost feel my brain going sideways inside me at this point. Its hard to predict, what conversations and events will be good for the soul or simply too much for my brain.

This winter, which has been tough in so many ways, I decided to take up doing a lot of crochet. I am on my second Granny Square blanket. 😊 Making a simple square at a time is not taxing and I don't have to remember a pattern or where I was. I simply make lots and sew them together after. As well as being a useful item, its also relaxing and therapeutic. Anyone want a blanket?! 😂 


Saturday 1 January 2022

New Year 2022

Don't want to write a 'traditional and polite' but at the moment trite Happy New Year message today, not as I don't wish everyone happiness (as I try my best to do that whatever the damn day is to those that are genuinely kind people -which most are 💖- free hugs are always offered x) but as it just seems bollocks, a complete head up your own arse and oblivious to reality load of shite that I can't comply with.

This year has been awful, worse than having part of your brain scooped out and dealing with the after effects. 2020 and 2021 have made 2016 look like a walk in the fucking park. It was a practice for this shitshow ...  in could I keep going when inside everything was breaking. A practice in trusting and that life is on our side, that good always triumphs evil and our soul contracts are here to evolve us. 💫💖💞

This year I have been destroyed as the strength, resilience and independence I thought both some of my loved ones and most people had, I realised was a crock of shit. They caved at the first or second hurdle, gave into bullies and liars, have defiled their (or even worse their kids) bodies and souls and didn't realise their brain had been manipulated into fear. I have grieved more times than I want to think about, cried to my core about what is happening, fearing for their and humanity's future and wondering where have the rebels, warriors,  black sheep and even those with a bit of spunk left have gone?

I've walked through DIY stores watching big strong men walking around with their face nappy on like good obedient slaves, didn't know whether to laugh or cry at people sitting in their plastic boxes with 'good boy' stickers on in a hospital waiting room, people wearing their muzzles to walk to the loo or move between what they are doing , but then take them off in the same fucking room for whatever activity is acceptable... 

When I just simply said NO. 

Yet, I'm not physically strong, I have massive anxiety at times, PTSD from looking at surgical blue masks, too much trauma than I want to mention, plus have issues where I can't even verbalise the right words- especially when stressed or questioned. But I am NOT compromising my soul. 

Like how the fuck are you existing? Don't you realise you are being laughed at by those orchestrating this farce? Or has the TV washed your brain and the toxins dumbed you down from even being able to think what YOU feel inside? 

It's no worse than when a government wants to change your view that a certain type of person is evil enough that we need to bomb and kill them... but the only evil are the ones telling others to throw the bombs in the name of peace. (Yeah fuck for virginity why don't you too 🙄) Since when has fighting solved conflicts? No... that's talking, compromise and listening...realising everyone no matter what their colour, religion or beliefs are tainted by their past. We can only change that through mutual understanding.

Greed rules or the multi billionaires of this world could have stopped global poverty several times over. Don't you wonder who's making money from the vaccines, swabs and masks? How suddenly its fine to pollute the world en mass? Wars are only fought when something worth $$$ can be won. Cancer has more cures than the 'cut, burn or poison' that are the only things legally allowed to be mentioned. Did you know that people have been locked up for curing it? Yes, for curing cancer in people who were  deemed terminal by the NHS and are alive and well... but they were locked up purely as they didn't follow the law ...

Legality is not morality. Never has been.

This world is run by evil, many who admit they are eugenicists. I won't even mention some of the other things I believe happen, but I trust 'truth will out eventually' and just watch several films that are more reality based than you possibly ever realise... 

(and yes this conspiracy theorist has been right many times this year 😉 - although I've never wished more that I'd been wrong 😔)

They even admit they have a government fear unit, designed to keep you in enough fear to comply. Think - why on earth they would want a population in fear, if it wasnt to keep them under control...?


Same reason we have schools... (you know you can home educate and you don't have to 'teach' your child 'the curriculum'?) Schools just teach you to follow the damn rules and you are not a priority, to follow the system until you die. Do you own thing and you are ignored or punished, where even amazing talent doesn't matter if its not on the syllabus. It's certainly not encouraged. Is that what you want for your child?

But...Yes you are a priority!!! A sovereign human that doesn't have to mould to the rules.


You are a soul who deserves much more than this,

 just as we all do.

I don't wish you a Happy New Year... I wish you some fucking balls to say no. 

To start looking and questioning. 

To listen to your own gut, your inner knowing, and your heart. 

To think what effect your actions have on the world and if you are part of humanity staying enslaved? 

Please start to listen with an open heart ❤ I don't hate you for complying,  I just want you to know you no longer have to if it doesn't feel right TO YOU 💫 (and if it does, and you enjoy having your life controlled, I wish you well x)

With that we ALL can have a 'Happy New Life' without the evil, greedy, rich, 'philanthropic', twats who own most of the world controlling us.

We can all have peace and a happier life then.
I pray for it anyway... for you and your children 🙏💖💫💖🙏

Love you 😘 from Enzo and I on the sofa x