Just for you to be aware, I have not gone A.W.O.L. I will only be popping on for about 15 minutes a day. My responses will have to be brief, please do not be offended.
This is my organisational (5 year) plan :-
1. For the U.K. to have a specialist B12 clinic on a par with Rotterdam.
For us, to be a global front runner in P.A./B12D. I have been involved in strategic planning at Government level but for myself:-
i) Get my health to optimal levels.
ii) Go back to university to undertake a nursing degree and obviously, my dissertation will be on P.A./vitamin B12 deficiency. Therefore, becoming dual qualified.
iv) Increase my contact lists, I know some people but obviously, many more collaborators are required.
v) Then there is the organisational (nitty gritty) planning of the clinic which would include financing, budgeting and costs and who would want to be part of this dedicated team.
Similarly, raising awareness of P.A./ vitamin B12 deficiency is a must:-
a) It really depends on how sick a person, they may just even struggle getting dress but they can ask families and friends to wear red.
b) Gluten free cake bakes.
c) Coffee mornings.
d) I remember having to do a 24 hour sponsored SILENCE at school. It was rather easy for me as I am introverted. 🤣
e) People who are able to stand for 4 hours with the old fashioned collection tins and give a brief synopsis on a leaflet of this hideous illness.
For myself, I have gone back to basics :-
* Training for a triathlon will start 1 September 2023. It will take at least a year to do this and I will need lots of rest.
* A skydive.
However, I am trying to organise my home and audit my own notes.
Please be aware that it is definitely worth applying for your notes from your G.P./Primary Care Provider practice, hospital visits or stays. It may take 6 months for them to arrive. However, you can go through them, seeing what was done and what was not.
Plus, if your name, address, date of birth, NHS number is not on top of every single page, then that is a black mark. The National Audit Office (sorry, U.K.) are wonderful people and have quite a few powers.
Sending my best wishes,
Amelia Earhart.
❤️
Written by
Narwhal10
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This is so awesome Narwhal10 🙌😍🤩 Sending you my best wishes for "mental clarity" as my grandmother used to say ❤️
Reminds me - I think that B12 awareness is usually sometime the last weeks of September, and Sally Pacholok often makes posters for this purpose. We should check back here periodically b12awareness.org/news/
You are too kind ❤️ I am often in awe of others here too, and also often wonder who they are 'in real life', including yourself
My background is electrical engineering with an interest in biology and applications to radiology. *Still* trying to finish my PhD after being sidelined for 4+ years thanks to B12D. It's nothing B12 related though when I was younger I was interested in bio-engineering, specifically I wanted to study why muscle testing works. It's only through that technique I can avoid migraine inducing foods (my intolerances change frequently), My path turned out to be quite different lol. Anyway any more detailed info and my cover will be blown haha... maybe one day...
I was also wondering about your background when you mentioned putting on scrubs. I am sure you will go on to do GREAT things now that this pesky B12 issue is solved. We're all rooting for you! 🤩🥳
Regarding awareness, in the early days, when I still functioned, I shared this article on facebook. I had little response and no meaningful discussions to my disappointment.
Thank you for posting the link to this wonderful article, wonderful in it's ability to quite thoroughly describe B12 Deficiency and, for people fortunate enough to be diagnosed, the greatest risk associated with B12 treatment: under treatment. Many good things about this article, but this is my favorite, due to the essential nature of people new to B12 deficiency to understand this essential piece of information:
[Start quote]
But then the next big barrier looms up. Standard practice is to give everybody, regardless of individual differences, exactly the same amount – one injection every three months.
In fact if you are suffering from neurological symptoms suggesting nerve damage, NHS guidelines say that after the initial six injections ‘loading dose’ you should get an injection every other day until your symptoms are no longer improving. This is often ignored however, and you may be immediately put on the standard three months regime. This practice seems blind to the fact that patient’s needs can vary greatly, that B12 is a remarkably safe water soluble vitamin that needs to be replaced regularly by injection when it can’t be absorbed from food.
Such a one-size fits-all restriction doesn’t apply to people with severe pain or to diabetics who are encouraged to adjust their insulin doses to ensure excess glucose is effectively cleared away, so where’s the evidence that this arbitrary regime is beneficial for these patients? It seems there isn’t any.
Well, all the babies I delivered WiscGuy were born on 25 December at midday. Mums were exactly 40 weeks pregnant. All babes weighed 3.25 kg. We’re the same length, same head circumference and same colour and ethnicity.
Everything is incremental. So, what people ‘juggle’ in life, home, partners, children, work. I have lived had to live on benefits for 11 years. Yesterday, I sauntered to a local education centre. The very nice chap asked a question, so I pulled out one certificate. He looked at me oddly and started asking questions.
However, on the way there, a homeless chap that I always acknowledge and when I have time to speak to, stopped me. The conversation was rather funny. He repeatedly commented on my weight gain. He kept saying you haven’t got MND (Motor Neuron Disease), you look too well. I said you are correct, I haven’t got MND. Pernicious Anaemia is like Multiple Sclerosis.
He refused to believe I have an illness because I looked too well and was ‘casual smart’. I sauntered to the city centre’s library. Well, well, three young women were campaigning against period poverty. However, there was much more to it. Topics such as menopause, how literate uses non exclusive words in W.H.O literature. I asked the young women’s backgrounds. Politics, Health History and Geography (population studies). When I scanned the QR code, I smiled.
Pernicious anaemia affects sexual health from fertility, to being able to carrying a child to menopause. Similarly, men can suffer too, lack of libido, Just as one example.
So, going through my own personal medical history, stuff could be pinpointed. I know myself and my capabilities. SMART targets and a triathlon will hurt because I manage a hip injury. However, I know who I will be thinking of when I want to give up.
I know who will support me when I need literature and case studies for University work and proof reading etc.
Similar words were shouted at me whilst doing half a marathon. I’d hit ‘the brick wall’ (when your energy is failing - very similar to P.A./B12D).
I like to do events in fancy dress. I don’t know if you can remember the kid’s program Thunder Cats. I was dressed as a female character (face paint too).
This guy in the crowd shouted, ‘Go Cheetara Go.’ I shouted back, ‘Thunder Cats are Go’ whilst raising my hand. Then nailed the last 2.7 miles.
However, driving to the event with my sister in the car, I spotted 3 guys. They looked lost and confused. So, we stopped. I offered them a lift and they got in. They had a little Thomas the Tank and were dressed up. So, we’re running in unison. They’re ‘day jobs’ - they were squaddies - in the Army. One of the men’s very young sons had cancer.
Cheetara is known for her speed, psychic powers and a powerful fighter. 😜
Cheetara - a female cartoon character who is a fighter.
I wish you so much luck in your endeavours. What seems like a mammoth task is so achievable with your enviable “zest” to get awareness and help out there. Thank you 🙏🏻
As a mh nurse I can only applaud your desire to become a nurse. I can also advise keep the initial degree as simple as you can and maybe consider the pa/b12 dissertation for when you do a master's degree
The problem is doctors do not have time to actually know us as people. They have no idea of our life experiences, work history or hobbies. I once spent a whole night shift with a couple (which is the norm). I apologised to explain that I would have to turn my back whilst writing my notes as the shelving was there.
The man commented when he saw me standing on one leg with the other raised. (a bit of yoga at work, it is all about your core). Anyway, the guy’s ‘day job’ was an international free diver. I asked how long ? My eyes widened so, asked lots of questions and for tips. Then I was able to explain the pressures and rotations babe makes during the birthing process comparing it to diving. The pressures babe experiences during the ‘birthing process’ are beyond an Olympic diver. The stresses experienced we (now we are in air) simply cannot tolerate.
For me, I have meditated for over 20 years, it’s a way of life for me. So, whenever I was told, It’s stress or whatever, I knew it was rubbish. I have offered a couple of doctors to lie on their own couch and to hypnotise them. None of them took me up on the offer though. 🤣😂
Wow!!!! You've set yourself some agenda and goals. All the very best for your endeavours and thank you for all your efforts for developing policy, practice etc.
Wonderful plan, hope all goes to plan. I was actually going to ask for everything me GP holds on me, I wonder if they will comply, From what has been entered on My GP app there are a few blatant inaccurate entries.
Whoa what the hell has happened to health records. Tried NHS Login, says I can't access my records. Apparently my records are now managed by a company called PKB and I have to share my login details with them to get access to my own records. I remember last year being asked if I consented to medical records being managed by a new entity and I refused. Just tried to talk to GP surgery about it, Joan, who has been chasing me for about 6 weeks over an overdue annual HbA1C test, hung up on me when I pointed out last test was end of January this year, apparently they have updated some of their IT and her pop up box on my record says I am overdue because they have now changed to the same calendar as the Tax collectors , April to April is their year. I said it is annual, being a bit pedantic, and refused to go again, she lost it shouted OI am not arguing with you and put phone down. Had enough today of G**sh**es , already been told today to lie on an official med record "consent form" so it will work and pointed out that would be against GDPR regulations.
I am sorry how you have been treated. Please just put it in writing. The letter from the Information Commissioner’s Office (ICO). Here’s a link to the website:-
Wow narwhal 10 It sounds like you have a huge set of goals to look forward to.
Good luck with everything. It would be wonderful if there was something like that in the US. So when you become successful will you open a clinic here?
This is very exciting news and I'm very excited for you. Good luck with all of your goals. Enjoy your skydiving. Stay healthy and thank you for all of your insight in the past. I can't wait to get updates on your progress.
That's all we can do right? I'm sorry you lost being a pilot. This darn condition is a life stealer for sure. But like you say, we just may have to choose a different path. But we should never give up. 🌷
You see everyone on here has a story. We all have skills and knowledge. Excuse me if my memory does not serve me well, you are a graphic designer? So that industry, I know very little about.
So, clinicians do not have time to know about our personalities, our characteristics, our qualifications, interests and hobbies. I put in writing to one doctor, I struggled to differentiate between a U and a W whilst undertaking a cryptic crossword. Can you imagine?
This is your captain speaking, ‘I forgot where Aruba was so I have flown you all to Moscow. Thank you for flying with Numb Skull Airlines’.
Funny, but not so funny. If I have a bad day, I don't even drive let alone pilot a plane. Yes, a graphic designer and PA really affected my ability to be creative. I couldn't even come up with a simple logo and they were a piece of cake. I couldn't hold a train of thought. It was the strangest feeling and scary. B12d has robbed each of us in its own way. Taken from us who we used to be, what we could have been. Our future may be different than what we expected, but there is still a future out there.
"there is still a future out there" - love this EllaNore!
Funny enough I used to complain that my creativity had been getting worse & worse over many years. No one understood what I meant. Little did I know at the time, it was purely due to B12!
Narwhal at my worst, I couldn't recognize numbers or do simple addition. An engineer that can't even count 🤣 Why yes please let build your IT system and pray it doesn't output pure gibberish
It’s Ridonkulous (Barney Stinson from How I Met Your Mother). People say oh it’s normal, I walk into a room and forget things too. Er, that’s a big fat nope. It is nothing like that.
Please read Oliver Sacks’ books and Dr Roger Bannister’s book, ‘Autonomic Failure: A Textbook of Clinical Disorders of the Autonomic Nervous System. ‘
Oh sorry, did I drop Sir Bannister’s book on your head ? Yes, it is quite heavy isn’t ? I’m not carrying the ‘weight of the world on my shoulders.’ There’s something wrong with my nervous system. 🙃
Roger Bannister, ran the first under 4 minute mile and was a neurologist for 60 years. 😉
🧡🦋🧡🦋🧡🦋 None of us would be on this forum if we weren't fighters. We found each other because we are all looking to help ourselves have a life despite PA/B12d and other AI conditions. We rock!! All of us!! Because we keep going even without the answers we desperately seek. Even if we are functioning at 25%, with 2 hours sleep.
I totally understand. I couldn’t find the way out of my flat as all my doors are the same. I opened everything single one of them. Then was too exhausted so needed to lie down.
I do hope your creativity is flowing now.
‘There is a future out there’. # ❤️
I am bursting with pride at the moment, an extremely good friend’s son turned 18. He’s currently doing his Basic training for the Marines.
Thank you. My creativity is better but I don't think it will ever be what it was. At least I know why. How scary not to be able to find your way out of your flat. Such crazy symptoms this thing has.That is great news about your friend son! A Marine! Big stuff. 🦋
May I suggest something ? There’s guided meditation on YouTube with a lot to choose from. So, shop around. I know whose voice I like (Michael Sealey, Jason Stephenson and The Honest Guys).
Anyway, if a patient has an electroencephalogram (EEG) to look at their brain wave activity but has no idea about the person, it can be very confusing for the doctor to interpret.
Meditation and hypnosis produce more Theta and Alpha waves which make us more relaxed. Although, something else happens though. A person is more plugged into the ‘universal energy’. People totally forget that the earth is spinning extremely fast on an axis and has a gravitational pull. Not to mention, the tides of waves, the sun and moon’s cycle.
With that in mind, meditation and hypnosis will make us more creative and can see how to solve situations because of the ‘clarity of mind’.
If somebody actually stopped me to ask, ‘How do you know that ?
I may answer, ‘Well, the universe told me, last Thursday.’ They would think I needed my head read !!! A psychiatrist would give me a label and then I would be given medication.
However, I would ask the doctor what their religion is or make an educated guess. People have strong faith in their particular beliefs, dedicate time by praying and celebrating their chosen God(s). Therefore, my beliefs, thoughts and actions are on a par with that !!!
We are so lucky, and grateful, for every minute you share or have shared with us. I admire your tenacity and vision. Best wishes in ALL your endeavors. 😊
That's a really lovely post narwhal 10. I really enjoyed her song. It was very uplifting. Lately, I've noticed that listening to my old music kind of brings back sad old memories and I decided I didn't want to do that anymore. So I started seeking out more positive things. For instance, it sounds crazy but I joined TikTok of all things, because I was getting videos from my friends that were very positive and very uplifting about nature and animals, and the beauty that surrounds us. So I started to check it out and now every day in my TikTok feed I get positive affirmations. Pictures of nature with positive things to say, uplifting notes. It's been really helpful.
As a photographer I am always out in nature. If I can't have trees and lakes and streams around me it would eat me up and kill me inside. It's something that I'm drawn to and need every day. It recharges me, it keeps me centered. Nearly every day I try to take a drive with my dog and find something beautiful to photograph. One of my favorite things to do is to go out at night in a thunder storm and photograph the lightning. It's amazing to sit in your car in the darkness at 1:00 in the morning and watch lightning strikes all around you and listen to the roar of thunder. It is thrilling.
I walk barefoot 99% of the time. I need to feel the earth under my feet. Besides, wearing shoes hurts my neuropathy hahaha.
I went camping a couple of times the last couple of weeks. Just overnight. But one night I lay in my tent when a thunderstorm came at 4:00 in the morning and for 2 hours I laid there and just watched the strobe light performance from my tent, the rain pouring down on me and not even getting wet. There's nothing like the sound of rain on a tent. It was so wonderful so amazing. A little scary hoping I didn't get hit by lightning but it was a thrill. And when daylight broke everything was dripping with water, birds were chirping the clouds were parting into a blue sky. There was a slight breeze and it smelled wonderful. That's what I live for. That's who I am. Not this stupid disease or condition. I will not let this condition engulf my life and define who I am. I will fight it all the way. And I will continue to seek out happiness and peacefulness in nature every day of my life.
As far as my creativity, I started painting little simple paintings. At first they weren't very good. So I started watching YouTube videos and I started getting more inspired and my painting started to improve. In fact I think I might have painted some of my favorite little paintings. They're just simple things like a sprig of wildflowers or whimsical house on a hill with a clothesline, a tree with curly branches and little birds sitting on each branch with a cat underneath. Things like that. Happy little scenes. It's really helped a lot. Then I sell my photos and art on Etsy. Its just a hobby now. But it's been healing.
And coming here to this forum... if it wasn't for everybody here, I don't know what I would have done the last 2 years. Everyone here is so supportive and kind.
Thank you for your very inspiring and uplifting post and your excellent suggestions.
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