Saturday 11 January 2020

How Others Stories Heal

Over the Christmas holidays I read a few things that really made me appreciate how others who have been in the same place you are, or were, are possibly the only people who really understand your experience.

How they can often explain in a way that you have not yet been able to voice, or even consciously accept - much less release.

Their words just holding your soul.

Both of these posts were the turning point on my decision to continue writing this blog again... (after being told I was prolonging acceptance in doing so!)

So two posts I want to share with you, - with the writers full permission. 

One was on helping someone else struggling with anxiety, after their brain tumour, and the daily struggle that ensues. Something that the 'pull yourself together' or 'just take a drug' brigade don't understand, in fact I don't think many can understand unless they have either been there themselves or watched a loved one struggle.

"I used to have really severe social anxiety to the point I didn't leave the house. I made a list of the things that scared me and then starting with the most easy I would try one by one. Going the shop was scary as I'd have a panic attacks and I would cry and have to ask my Mum to use my card and pay for me, or getting the bus would make me cry and run away. But the fact I was still trying it, made me take it as a win. 
Then over the years everything got that bit easier and easier. It has taken about 6 years for me to finally be 'normal' again but it is do-able 😊. As for the seizures I found mine was triggered by stress. But I also learnt that while having a seizure my heart rate with shoot up soooo fast, so I would learn how to try keep calm and breath and as my heart rate came down the seizure would be less severe and would end quicker. Obviously you will have times you just can't do this but it's definitely something to keep in mind 😊
Also with the depression I've learnt either writing down how I feel or speaking to a counselor or just someone who you don't really know is a massive help just being able to offload. I still have my days with my personality disorder, but it's okay to have bad days where you just sit and cry and sleep. It's picking yourself back up again what is important." - Beth Parker

How explaining and others listening, supporting, guiding with kindness and love really can help, but that often we just have to love ourselves more too. Not judge our bad days, or think that we are weak, stupid or wrong. Treat ourselves as kindly as we would a good friend.

One of the hardest feelings in the world is feeling alone -
 even when you are in a room full of people πŸ˜”


The other post was of someone who had just returned home after his (elective) surgery to remove his cerebellar Hemangioblastoma (which was thankfully caught early and still quite small - before too many symptoms appeared) and had been seeking advice on my support group.

"First memory was coming too and in recovery. Lots of simple questions: Do you know who you are, where you are, what day it is, etc. So happy I did and felt my brain working but I had no voice as hard I tried. They said it was the anesthesia still in me. Finally could whisper and use hand signals. Dr. Patel came in and said I did great and it only took 3 hours. CT looks like everything is out. It most definitely was a Hemangioblastoma and profiles benign. Couldn’t sleep all night but relieved and did simple moves and stretches in bed. Good to be alive and recovery is going great. So appreciate the small things and focused on not overdoing it. I realize everyone is in different spots with this challenge. I appreciate you all and draw from your stories and strength!
Speech is great. A little sticky for first 48 hours and my mind was actually going faster than my ability to get words out. I think it was the drugs but I could not help cracking jokes to almost everyone. Also my sense of relief that my brain was in tact. Tired so fast though and my flashes of energy quickly overcome by fatigue.
I didn’t realize how much stress and dread I was carrying until I finally was brought back and knew my brain was working. It was looking at a clock in recovery and figuring out how long I’d been out, then moving my feet, feeling my brain waves fire up to know simple questions even though I couldn’t get my voice out for a few. It’s quite a surrender, courage and act of trust/faith to do this. I know I had a choice of delay and so far feel blessed by my decision and your support. Thanks Jo and all!" - Brian Gilmore

I just cried when I read this, yes some were tears of recollecting almost the exact same thoughts:

'Did my brain still work? Could I move my body? 
Did it all go OK during surgery and was the tumour all out?'

So yes neuropsychologist woman, you are right it 'brings it back'...

... but what it also brings back is a memory of the sense of gratitude, relief, strength and that overwhelming knowledge I'd survived, the belief that even a few deficits would be an acceptable trade for being alive. The reminder that small things we worry about daily, just don't really matter in the scheme of things. Where I could see the beauty in even run down old buildings as I went home...

The 'surrender, courage and act of trust/faith to do this' and how those emotions and feelings never truly leave you. How they give you strength forever.

Plus some added acceptance, understanding and knowing of just how far I have come since then. The knowing that others have faced the same, will continue to face the same and being part of a tribe that understands you.

Tinged with a huge happiness that the support I (and others) had given, the words I had written, had impacted someone else's life for the better. Made a really tough time for them just that little bit easier in having the support I never had. 

So yes. 
No one does really understands it unless they have been though it themselves. 


Wednesday 8 January 2020

My Amazon Book Review

Every so often someone says something that upsets you. They have judged you on their beliefs and standards and can't, or don't want to, understand your point of view. I do understand this. 

But when it's on my reviews about my book it angers and confuses me too...

I really don't get much profit from my book (it's probably not a book you would read if you didn't have a brain tumour or need surgery πŸ€”) so sales are limited, but every penny helps. Along with the knowledge that it has helped others and so I hope each sale is a little bit of trust to someone else facing similar...πŸ’œ

But this was the comment I recently found on my Amazon ratings:

1.0 out of 5 stars New age rubbish!
Reviewed in the United Kingdom on 6 November 2019

One of the worse books I've ever read. Sorry about her illness but couldn't read another word about "angels'' and diatribes against having to use medicines and "evil doctors'' who SAVED HER LIFE!

So I am now feeling rather upset and wondering...

Will people not buy or read it because of someone else's comments? (someone has already found the comment helpful!) 


Did they stop reading as I said something they think is totally ridiculous? 


Do most people think I am stupid? 


Am I stupid?

Plus, also in November, I had someone ridicule me on my Facebook page by giving me a bad review because I said I'd stopped vaccinating my kids, knowing absolutely no reason why I'd stopped, just attacking me for my viewpoint!  Thankfully Facebook removed it. (as the review was nothing to do with my page)

I do realise that I am very much into alternative health, and confuse and even upset or anger many with my views - but are we not allowed to have 'different' opinions? Surely we all will see things differently, depending on what we have read, seen, heard, feel and have experienced?

I know I shouldn't need to have to explain myself, I don't need to explain my differences. But if I don't, how will others ever learn another's view...?

So anonymous Kindle Customer this is partly why I wrote my 'diatribe'... 

I have been into alternative heath from when I was in my late teens: my GP had given me a low dose antibiotic (tetracycline) for my acne from when I was about 12 years old, but within a year or so I had severe
Irritable bowel syndrome (IBS). I couldn't eat most things without feeling really ill after, had to drink a mint powder to calm the nausea once I had eaten. I spent most of my teenage years with stomach bloating, pain and feeling nauseous. 

During this time I kept seeing my GP and had them saying I was fine (whilst I'm sure all they did was pregnancy tests as I had nausea - they often asked for urine samples!) I went to a gastroenterologist, had a tube down my stomach at age 16 and yet nothing they said or did helped. Only the more 'natural' things I tried or avoiding certain foods helped - things I'd found out or been told by alternative health practitioners. I had asked my doctors so many times was my IBS linked to the antibiotics - as when I stopped them (which I had to every few months) it eased a little.  The response was always "no, it's definitely not related".

Roll on another few months, turning into years, and I read a dental nurse friend's medical book she had left at home which listed the side effects/reaction to drugs and sure enough a COMMON side effect of the antibiotics I was taking was nausea and stomach issues - basically the IBS symptoms I was suffering from!!! 😞😠

I stopped the antibiotics, although my stomach symptoms didn't fully stop with it, my gut was damaged by then. 

I will also add that a dermatologist at this time wanted me to take Roaccutane and thankfully told me some of the side effects. I would need eye drops for my contact lenses as it dries up all moisture, and also that if I accidentally became pregnant I would need the baby aborted due to the damage it would do to it! This kind of terrified me... if it damages a baby this much, what does it do to my own cells? I was informed enough to chose not to take it. The side effects of this drug have since shown to be awful, including making people suicidal and destroying many lives in the processπŸ˜₯.

When I had my eldest child a few years after I was terrified morning sickness would be worse than my IBS... but it was a walk in the park to what I had dealt with for years! 

30+ years later and my stomach has never fully recovered - I still cant eat wheat, have caffeine, alcohol or too much sugar and was diagnosed lactose intolerant years ago. (The doctors only believed me on that after they got test results... I didn't matter that I was on the loo all afternoon after drinking lactose for the test!😬)

My wisdom teeth were orange when removed (the dentist kept them to show medical students) and I later found out tetracycline can apparently damage your bones and growth. (I was the same height at 12 when I started taking them, as I am now πŸ˜‘)  

But not once did anyone acknowledge this. 
Nor the fact that I shouldn't have been taking the damn antibiotics for almost 7 years anyway!!!!



So basically I got into nutrition, healers, alternative therapists - homeopathy, reiki, bowen, craniosacral, osteopathy etc. I healed much of my gut with diet and didn't have many medical procedures for years. 

The few times I had mainstream treatment, maybe as I was used to looking at the causes and changing them instead of getting what I call an 'elastoplast' and covering symptoms, I was treated appallingly - including one consultant hurting me and saying "You have pelvic pain, what do you expect" after I all but screamed! 😑 And then actually laughing at me when I said I was trying homeopathy for 6 months and not accepting his laparoscopy just to 'explore'... He, still laughing, said he would see me in a year or so when things were worse. For what it's worth, I never went back as homeopathy, supplements and diet change helped, and so I didn't need to.

Since I started treating things holistically, it expands to all areas of your life. I stopped using mainstream chemical skincare and household products. I had, no drug, home births. (Again because of bad treatment with my first hospital birth- where Dr's went against my wishes in hospital causing issues for both me and my baby.😠) I co-slept with my kids. I breastfed them and never gave them formula. They had vaccine reactions - I asked questions, researched for YEARS and then stopped vaccinating. (The vaccine nurse actually going against the manufacturers vaccine insert and lying that my youngest son was fine to have his vaccines on time, when in fact he would have been contraindicated not to have them. Like I'd ever just trust them again after that?!πŸ˜”) 

I found most things can be healed with time, sun, a good diet and the natural herbs and minerals our planet has given us. My youngest son has been to the Dr's twice since he was a tiny baby. I didn't take even a single paracetamol for 10 years, I had no need to... 

Hence why it was a BIG mind fuck when I 
needed urgent brain surgery!!! 

I was honestly as terrified they would give me a vaccine or a drug in hospital, when I wasn't aware or able to consent, and that could cause more future damage; as I was from having the op... 
...and yet many people still laugh at me for questioning it... 
Not trusting a profession who has hurt me many times and even got things so wrong they could have killed me in the past...

Not trusting things that are now being shown in places like the What Doctors Don't Tell You book, and many of the 'fake news' websites! Or the fact that medical errors are the THIRD leading cause of death in the USA.


Plus of course you can also add in the fact that my GP's had missed the fact I had almost every sign of a brain tumour for months, said "no" even when I asked them "could it be a brain tumour?" and refused to refer me twice to a neurologist on my requests. Then the health ombudsman ignored my case and basically said it was acceptable treatment!! (There is all the PHSO info elsewhere on my blog, and I am certainly not the only one where they have upheld part of my complaint, whilst ignoring the more serious concerns - see phso the true story)   

Science should continue to change -   
just like it has since cigarettes and thalidomide were 
promoted in pregnancy.
New things being discovered and finding out old things dont work.
But its treated like a religion where you cannot question the narrative...

Even if you look at most pharmaceutical drugs side effects or efficacy rate you might be shocked at how low the % of people helped can be. Look at placebo studies - they are fascinating as they often work as well as an expensive drug, or that placebo knee operations work as well as the real thing. (just look at David Hamilton's work.) Often many natural herbs, or IV vitamin c work as well, or better, as the best drugs on the market, but as they cannot be patented its not offered as a treatment - no one makes any money!!! Same as you cannot mention other cancer 'cures' due to the 1939 cancer act... even though many things have PROVEN results of even terminal cancer patients who are well again. Including nutrition, cannabis oil, GcMAF etc ... (The truth about cancer is a good place to start.)

So Kindle customer ... I truly hope these things change soon, its a scary world where our kids might be drugged and not given chances purely due to profit... 

Plus I would also like to let you know that if you read the rest of my book, you would find out that I am forever thankful for Mr Jones for his amazing skills that I admit saved my life. 
You may also notice I dedicated my book to him and have given him a 5* review on I want great care
I also went out of my way to fund raise for St George's hospital. 

I can fully accept Dr's save our lives πŸ’œ Although I wish more would admit that sometimes they don't know, aren't sure, even need to google or ask others doctor's opinions or expertise.  Some just need to accept the fact we are not machines and don't all work the same!  Or that information has moved on since they were at medical school and their pharmaceutical reps don't tell them everything. πŸ˜‘ Or tell us we dont have something - as the symptoms we have were not signs of it in their medical books!!!

Another whole topic in itself would also be how they are expected to cope with the shifts and workload they are given on the NHS and expected to not make mistakes. I know the 5 nights I was in hospital, several times I heard one nurse explaining to another that someone had accidentally had a drug too early or similar. We all make mistakes when tired and overworked... and this, and much of the medical system, really needs to change for the amazing people who I believe are doing their best to help us πŸ’œ 

Oh and re the angels - 

I hope you aren't religious and pray to a 'mysterious god' of any kind? 

Nor ever have the need to trust in something greater than us. 

The prayer that gets us through...  

...actually, with the world as it is, I take being 'New Age' as a compliment! 😁

Finally, if anyone has read 'It's all in my Head
and it has helped them in any way would like to leave a review on Amazon... 
please do so. πŸ’œ 

Thursday 2 January 2020

Off Grid

I have disappeared for a few weeks. It's taken me this long to find myself again.

I had a neuropsychology appointment at the end of November that didn't go as expected πŸ˜• I went there  thinking I was getting some kind of cognitive tests or thoughts to help with my hand, head feelings, vision, fatigue and how they have changed so much since surgery. How to cope better with the new me.

But instead she focused on my (health) anxiety as I, mistakenly, said near the start of the meeting I had it for years. πŸ€” (Since my boyfriend drowned when I was 17, after telling me the week before he would be dead within a week. πŸ˜‘  I admit it took me years to get over it and I guess part of it has never fully gone, something like that does imprint on your brain slightly.)

But for this woman to judge me on who I was 28 years ago, telling me what I needed and what I was doing and why, even when I didn't relate to what she was saying - it felt a joke... 

I wanted support not judgement.

"I am me. I was abused, made to feel worthless and shamed, manipulated to doing what others want. Put down. Ridiculed. Left to cope with premonitions, alcoholism and then death ...when I was a child.  A fucking child!!!! It literally tore me up inside. While I was made to pretend.  On the outside no one knew. 

I have had countless days when I never thought I'd even make it to the end of that one. Countless nights with inherited emotional worry and stress consuming every fibre. Feeling the physical pain of others.
Yet, I brought 4 kids up... Me doing most of the physical day to day work. Exhausting. Emotional. Non stop. Without payment. Without even having a drink at the end of the day to calm me. For 25 years so far... 

Fuck I deserve more credit than this... 

Then I went through hell with my brain tumour. With how much hospitals terrify me. How I don't trust dr's to do what I want and that I always need to be alert. I had to be my own representative much of the time. Yes, there was a point I did have to trust and let go, but soon enough once again it was back to me. Looking after myself. Looking up things to help me, support me. Yes, I know family helped with cooking etc and took many of the daily tasks away and of course I am thankful for that, but I still did many things myself, and all of my own health care. 

I feel I got through it far stronger than I started. I survived what I thought would kill me.

But, as ever, the only way was to support myself. Like I have done for the last 45 years."

She also seemed to think that even talking to others on my Facebook support group for others who have/had hemangioblastoma's would be 'reassurance seeking' and make things worse!! πŸ˜¬πŸ™„ Even though this is the place where people understand most about the frustrations and acceptance of what I went though - as they went through the same too.  πŸ’œ Many have had surgery in the exact same area of the cerebellum, and have very similar side effects. The side effects I'm not 'supposed' to have... 
Where I also support them, support others who are waiting for surgery and terrified.  Discuss things that have helped me, as they may help them too. 

Same with writing my blog, apparently -
'I'm prolonging acceptance that I'm 'normal' again'!! πŸ˜”

She kept saying over and over (in what felt a rather sarcastic voice, think Delores Umbridge in Harry Potter films) "Mr Jones says you have no medical issues now..." 

When I said, "I know this, but I want someone to support me with what can I do to address the fact my life has changed, my hands curl and no longer work the same. I can't do (my passion of) art as I did, or sewing (I cant even thread a needle easily WITH my glasses on), or crochet ... I drop things, I can't even do up jewellery clasps without a struggle.
My vision is shit. It feels like it did before I knew I had my tumour. Oddly blurry and fuzzy. Yes I know I've got old and long sighted, but again I can't see properly at times even with my glasses on.
My neck often hurts as does my head. Yes I know things are 'normal' but what do I do to cope better with what I now have? 
I've been to the GP, who does some tests - which are normal - then says to see Mr Jones as she thinks it may be tumour after effects, who (after waiting months to see him) says 'I'm normal', and so I'm back to the start with no one within a whole year who can actually help me with the issues ... Can I stop further deterioration? Do I need to do exercises? I know it might be nothing to do with the op, but it DID all start after it."

I never really got a reply, apart from she said again "but Mr Jones said you're normal"

I was gutted. In tears of frustration, disappointment and anger. Apparently this means I just have anxiety?! 

Yes I know I have PMDD, my moods can drop and I struggle to cope with hormones, How feeling irritable, overwhelmed and tearful from hormones, as well as more fatigued, doesn't mix well with my struggle with the side effects from a brain tumour and surgery. The fatigue in itself makes my speech, coordination and balance all feel worse again. I feel a failure to myself and my family.

But none of this even came out in our conversation. I was too judged on the box she wanted me to fit into.

So she is referring me to another neuro-psychologist. Who she said would do more talking and then possibly refer me back to her for cognitive assessments only if I needed it. She also mentioned taking anti depressants - which I am about as likely to agree to as win the lottery.😬 I said to her "I don't take drugs as they don't suit me and have seen too many studies that anti depressants don't work more than a placebo or talking, and can even ruin people's lives." Which was scoffed at.

I only realised fully when I got back home...

I am not depressed - I'm fucking angry! 

Not really mentioning that I need to talk... Or to feel useful and wanted.  To have others who understand and listen, or that I don't have enough other people to talk to and am isolated now.πŸ˜• 
So I'm still partly worried I'm going to get labelled as having a disorder and then possibly be labelled further as 'refusing treatment' - rather than them helping me with what I struggle with.... 😒
Not the best result πŸ˜”

Hence why I disappeared. πŸ™ˆ

But a few weeks later, and I still feel I want to help others in similar circumstances to what I had cope with, I'd like to support them more as I understand from being there. I feel there is a place for me doing this, albeit I am not exactly sure how ... Yet hearing a neuro-psychologist saying I should stop as "it's reassurance seeking or stopping me moving forwards" feels so far from MY truth. It's empowering me. I did it. I coped. I have changed my view of life. I am proud of myself for doing so. I want to help others cope too.πŸ™

I know I need to focus on something positive, fuck me I know I can do more, but I could do with some support and guidance. What 'I' am interested in, not what others think it best for me. How to cope with my 'disabilities' (I can't think of another word, but I want this to be strong and accepting of the deficits I have, not the weakness) and my strengths.

It's taken me five weeks to find the strength again to both publicly 'tell the world' and realise writing my blog helps me, helps me move forwards, not holds me in the past. 

And if it helps even one other person - it's worth it. πŸ’œ