This might be a little bit long and may be sad too, I’ll be talking about illness and a lot about food too if it’s not for you that’s ok.
Why I Changed
I’ve lived with a condition called Neurofibromatosis type 2 (NF2 for short), for at least 20 years, Well I found out I had it 20 years ago, but likely I had it since birth. NF2 is a genetic condition, passed from parent to child, now and again people just have the disease because of a defect, that’s what happened to me, nobody in my family has ever had it nor do they carry the gene that causes it.
NF2 causes non cancerous (benign) tumours to grow in areas that can seriously compromise health, they’re primarily in the nervous system, in particular the brain and spine. Because of their proximity to nerves and vital organs, they can be difficult to treat without causing damage to the connected nerves. Tumours can also grow under the skin, or for women (who the condition is more common in), can cause fibroids. As the female hormones can obviously affect the condition, many women experience more NF2 growth problems during pregnancy or puberty.
So far to date, I have had four & a bit tumours treated because of how they have grown and affected me. I have many more that remain untreated because they are not causing severe enough symptoms to warrant the risk of removing them with surgery. I have growths under my skin all over my body, and I am the proud owner of what is known in my family as the magic finger. All of my life the tip of one of my fingers has been inflamed, round, thick and out of shape, with a nail that is split and broken all over always.
Some of the effects surgery and NF2 has had on me, include a paralysed left arm, balance problems, deafness, numbness to the skin, facial palsy, speech problems, eating difficulties, fatigue, migraines, nausea, chronic pain, anxiety, depression and more.
That’s the very condensed version of living with NF2! Last year after almost 15 years surgery free, I was diagnosed with a huge brain tumour after I began losing my sight and basically just deteriorating so far I could barely walk. Yes, I knew I was sick, no nobody would take me seriously, I was turned away from A&E, my GP, all of the three hospitals I am a patient at, on more than one occasion. After an emergency admission, the tumour was removed and I started recovering from that surgery. During a routine check up, Doctors found yet another rapidly growing tumour in my ear, It was to be treated urgently, or I’d be in severe pain and be getting deafer by the day. It’s nearly 8 weeks later and I still haven’t been seen about it.
But that’s ok right now. I couldn’t take another round of surgery, or the chemotherapy they suggested, so in desperation, I turned to the internet. How many times have you read an article about the life changing benefits of this diet, detox, herbal concoction, cannabis and similar and rolled your eyes? More than you care to imagine I bet, because that’s exactly what I would do. I couldn’t tell you just how many times I thought, nope no way no how, give me a chinese takeaway and a KFC now. With nothing to lose, I thought give it a chance, you cannot get any worse, and if it doesn’t work or I can’t tolerate it, at least I can say to myself I gave something alternative a fair shot.
What I Changed
So, I combined advice from proponents of various diets, all of the plant based ones. There are several angles it can be approached from, such as alkaline or vegan. For me, I found many people followed a very strict approach to “Dr Sebi” and his alkaline food plan, but it was so restrictive (some fruits couldn’t even be eaten) and I later found out he was not a Dr, but did make some phenomenal changes to peoples lives, for example providing proof to the courts that he cured HIV. The vegan approach is great, but honestly if I ate vegan I would live on Oreos, jam butties and Mcdonalds apple pies. I read that refined sugars, white breads, pastas and rice were essentially a poison, so I decided to go cold turkey on those foods too. Tumours have been proven to survive best in acidic environments, and they react strongly to sugar, so it made sense for me to act especially on those two things. I eat a primarily plant based diet with brown wholemeal rice, pasta (or lentil pasta) and wholemeal seeded bread too. Acidity can be easily tested using litmus paper in saliva or urine, so I have been checking on mine frequently. When I began the new lifestyle, my pee was dangerously acidic, two weeks later it was much more in a healthy range, by week three it was overly alkaline, so I incorporate “acid forming” food or drink in my diet, for example I will have some days a cup of coffee, or something which is “off plan” but not overly refined or processed. Toxins are largely removed from the body by the lymph system, so I also set to work on making sure my lymph system is working good and strong, with techniques such as dry body brushing and hot/cold showers. I have worked on reducing acidity in my body, reducing my application or ingestion of chemicals, I also watch most days meditation or sound therapy healing videos on Youtube. I will discuss my whole approach on what I do daily in a separate post as it will be quite long,
What That Changed
Honestly, forgive my language but I am surprised I haven’t actually physically shit myself in shock at how radically and rapidly that the things have changed in my life. Had I have been prepared for the changes I could expect, I would have photographed myself from every angle, head to toe weekly for the last seven weeks. My magic finger, now really is magic – it has been shrinking so quickly and the nail is growing normally where usually it would split from the base all over. As probably like you, I didn’t make a conscious effort to stare at my finger often, so when I did notice the difference it was sudden, four weeks in to this change, I have started documenting that now. I have had a lipoma (under skin tumour), on my back my whole life, with one on my hand that has been there about 15 years. My hand lump has softened and shrunk, the one on my back has almost completely disappeared – my mum noticed that one as she fake tanned my back. She gasped in shock when she struggled to find it, and when she seen the 11 inch long, three inch wide scar which as been lumpy, pink and unsightly for the last 20 years, has begun to shrink, lighten, and smooth out. I am recovering sensation in my skin, in parts of my body that I both did and didn’t even know had lost it, for example skin on my ear (I didn’t know!), and the skin on my face which has been partially paralysed for 15 years. My dry eye is much less dry and painful of a morning, as it is as though my eye is closing much better and lubricating itself properly. People who haven’t seen me for a while, even those who do not know what I am doing, are astonished at how much different I look, how much better my face is moving, how clearer my speech is and how much stronger I appear. The biggest differences cannot be seen, I am sleeping solidly every night, waking up naturally, easily and ready to face the day quite quickly, I used to take so long to even sit up of a morning. So much of my pain has subsided, in every single area of my body, and I have had one migraine in the last seven weeks (I think it was triggered by a fall), after experiencing at the very least two a month my whole life. I used to nap almost every day, if I didn’t I was extraordinarily sluggish and grumpy. I struggled to get through the days without a lot of rest between activities,even just sitting talking to people tires me out. My family can’t quite believe just how differently I can manage to function through the day now. I have a lot of existing damage from surgeries and growths, with a lot of muscle wastage that I will work on soon, inside me though I feel as though I could run so far – I’ve never been able to run or felt so inclined. The only way I can explain how good I feel inside sounds a bit cheesy – I am just waiting for my physical self now to catch up to my spirit. Join me on my journey to seeing just how far I can take this, I am weirdly looking forward to a scan from the hospital so I can say “omg the tumours are shrinking!”, and I can show you!
If you made it to the end, thank you for your patience,
Amy x (published summer 2019)
7 thoughts on “Neurofibromatosis Type 2 | Intro 2019 (part 2)”
Thank you so much Lyd, it was such a big thing to share but I can rely on the blogosphere to be amazing about it all, I’ve got tears in my eyes off your lovely comment x x
Oh wow, the results sound amazing!
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I just love your story as much as I dislike it.
You are an inspiration to our family
You are one of the most beautiful kind caring people I have ever met. Always thinking about someone else.
I am sure through this blog you are going to help a lot of people.
We love you millions. ❤️
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Thank you so much Tina lots of love x x x x
Thank you so much Lucie this was such a kind message x x x x