Our own stories are individual. There are many people that I am eternally grateful to wedgewood, Sleepybunny, Cherylclaire, FlipperTD, Jillymo, Nackapan, jade_s, WIZARD6787, Technoid, EllaNore, WiscGuy, Wwwdot, brenanddave, Mixteca, Mr Peacock, CliveAlive, MrsTuft, Wheat and last but not least, you know who you are sir, you gorgeous person, Rexz.
Apologies for people I have not mentioned. For those who do not know me, I am qualified midwife. I was not taught about P.A./B12D, I know I would have listened and learnt. Anyway despite job loss, I have new ‘friends’, new knowledge and with that I will return to university next year. I will educate my peers, my lecturers, my mentors on this insidious illness. So, know that I am truly committed to this. So, as a BIG thank you to those who support, advise, comfort, share, comment, educate, signpost and whatever else.
Plus, there are those who are working hard on their own health projects, like Rexz. This is for you (apologies Nackapan I know you struggle with possibly sound, motion eek something 🤷♀️
Please note as a shy, introvert I struggled to articulate my emotions so music provided an outlet. With age, I have learnt the art of conversation but my preferred method of communication is writing.
🐳😘
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Narwhal10
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I ran into a friend who I have not seen in 4 years which is prior to me being in the throes of cobalamin deficiency. We are what I would call intellectual friends with little emotional attachment. We are no holds barred when it comes to being critical. We are both experts in our field and know what that means which is not much.
I was talking about my journey with self treatment. I mentioned this forum and he said "explain". I laughed and said that is not going to be possible.
I then came up with they are elite. As a group they have more knowledge than any other source. And most importantly they have the courage to self treat and the obstacles are many and formattable.
They are incredibly respectful and annoyingly polite. I keep expecting to get banned from the site.
A big cheesy grin appeared across my face - the elite. In my heyday, lots of people did not understand me. I know many people so the social invites were there but were declined.
Recently, I met up with an old friend that I lived with. We spoke at length about ‘stuff’ and how he had entertained numerous people at our home. I lived in the attic which I would retire to. I said the word soirée and his ears pricked up. Then I explained to him that he was never aware that I only graced him with my presence when I wanted. Everything was always on my terms. Something clicked into place and he said I am beginning to understand you a bit more now and some of the stuff you did. He said I thought you were different, eccentric. Yes mate, it’s called geek, nerd, boffin. We are busy creating stuff. We are the ‘weird kids’. 😂🤣
Thank you for your kind words and yes you and those on this forum are so supportive and uplifting. Thank you so much for sharing that wonderful music.
Music is often my escape. It can guide my thoughts, tune, or amplify my emotions, take me to distant places, and at times I use it to drown out thoughts that I just don't want to deal with.
From my installment 05 - Cancer, a verdict, a sentence without a trial at rexwiig.substack.com
I write about using music to drown out my thoughts. Here’s an excerpt…
Thoughts, thoughts and more, my mind ran amuck.
I had finished all the testing by early afternoon and as I was driving home, thoughts rambled through my head. I turned up the music, trying to keep my thoughts at bay with little success. I turned the music louder.
“Is that why you play music so loud? A beat to drown out the thoughts, sound so high you cannot think, lyrics so close to home you don't even blink.”
Btw I am on my second Med Student. A program I applied for people with rare disorders to mentor Med students. My first was from Texas A&M University Medical School and the one I have now is from University of Southern California (UCLA) Med School. I am definitely educating them on B12 PA/AMAG and also to not only look for Zebras but also for us Unicorns. 🤪.
Blushing, why thank you. My family think I must have some mental health problem. I struggle to conform to Western Society as I am not married and have no children.
I was about 5 and my older boisterous sister found me in my room staring at the sun. Tears were streaming down my face. She demanded to know what I was doing, I whispered, ‘Trying to work it out.’
I went into midwifery with some life experience and the other midwives insisted I had practised elsewhere. After awhile, I realised it was because I never stopped asking questions. I sometimes offered better solutions because the clinical pathways and algorithms did not make sense to me. Why are we going around the houses ? Look you can go from there to there via this. It is quicker, easier, cheaper, as safe and more patient centred. The response was that is the way we have always done it. 🤷♀️
I was responsible for my practice and it was the autonomy that drew me to the profession. Nobody knew that I purposely worked Christmas and New Year. Sorry, I cannot come to the Christmas party. One of the best lines I have ever used at a wedding party was, ‘You’ll have to excuse me, these samosas are delicious, I need to sample another.’
I was home in my hoodie and leggings reading a book in 40 minutes. Often as a midwife, I was asked whether I had children. At first I struggled to answer, I did not want a new mum to be anxious. Then came up with a simple answer,
‘I cannot have them.’
My family were completely unaware of my poor gynaecological and obstetric history. They had assumed. It was nobody’s business than mine. P.A./B12D and untreated coeliac disease causes infertility. The positive side is with no ties a person can move around the U.K. and the world. 😊
This was very moving to me Narwhal. "I can't have children" is the perfect answer. That is the one I found easiest to use. But I am not a midwife. I do know another midwife that does not have children, by choice. I don't know what she tells people. People always ask me why I didn't have kids. So I learned to give the short answer too.
It seems your sponge of a brain needed to learn, and your big heart needed to help and give back, and that is what you have done. I am sure you have made a difference in so many lives, beyond HU, as well as here. 🌷
It is the short perfect answer and some people to assume or speculate. Let them I say because I like that air of mystery.
I have cared for and met so many couples who have tried so hard for years, had multiple pregnancy loses or worse that when finally, their very much wanted little one arrives, we are thrilled for them. It is a monumental moment.
For myself, as a teenager, every period I was as sick as a pig. The easiest and reasonable solution was long term contraception. I accepted that it was just the way I was. It was no big deal because I am rather a tomboy.
That is nice you can help women in that way. I am very much a tomboy too. I even ride a motorcycle. LOL I never saw myself as a mother and it all worked out. A doberman ripped open my abdomen and that was that. Always had bad periods. I wonder if that was B12D rearing its head at such a young age. 🌷
I am so very sorry to read about being attacked by a dog.
Great about motorbike. I am currently doing an impression of that Crazy Frog from years ago - Ring Ding Ding. 🤪
I never saw myself as a mother either. I was too busy studying, playing sport and just relaxing. I think it is about time the medical profession understand strong, independent women who do not need or necessarily want a man/woman in their lives. Some of us are quite content with our lives.
Many years ago, in an exam where the essay question was a discussion of Marxism. So, social theories. I interpreted the question rather differently which was entirely plausible. I wrote of how without Karl Marx marrying into petty nobility, he would have not been able to financially afford to undertake his studies and work. Jenny von Westphalen was a political activist. She was a formidable character, detained by the police and deported. I know people who have got banned from whole countries.
One retort I have given people when questioned on my relationship status is, I am not picking up someone else’s dirty socks. I have my own to do first.
Haha, I agree 100%. Married twice, alone by choice for 24 years now. I can do whatever, whenever, and I don't have to answer to anyone. I love my single life. I rescue animals now, instead of men. LOLOL. They appreciate it more Lolol. Rescued, spayed, neutered and tamed 20 feral cats and kittens since last June. Found all 11 kittens forever homes. Not that men aren't great. 🥰 I just choose the bad ones. 🤪 I think strong independent women are finally taking their stance in life.
I wish I could be as positive. My mental health has absolutely slumped, I think due to PA but there maybe other pressures contributing. My GP referred me to the adult mental health team. I didn't ask her to. Had what I thought was a reasonable appointment. I outlined my mental health problems, and worries. Also, on request, my physical conditions. Got their response a couple of days ago. Apparently I am a hypochondriac. So the heart attack, the diagnosed angina, atrial fibrillation, diabetes, and diagnosed PA are all clearly just figments of mine and my doctors' imaginations. Seems like that as I was dressed appropriately for the session, and spoke in a normal, calm voice, I am of no interest to them. To be fair, they accept that I have mental health issues, but in the UK the level of support to any but the most seriously impacted is so, so poor. Is it any wonder the male suicide is so prevalent in the country? You think you might be about to get some help, and instead are told you are a hypochondriac. I suspect that behind it all is once more a complete failure to understand the impact of PA on physical and mental health. The report has left me inexplicably devastated, and feeling that there is little point in trying to get better.
I think this is the most depressed I have ever been. A lot of that is, I am sure, down to PA, but it is also down to the absolutely shocking level of health care in the UK. Everything is about targets and therefore any issue which is complex is just swept under the carpet so the NHS can concentrate on reducing waiting times and ticking boxes. To be clear, I do not blame the doctors who are rightly striking at the moment, nor the nurses who are perceptive, patient and caring for the most part. I blame a Government who are only interested in their own pockets and furthering their own careers.
I am really sorry that you feel so low. I identify with all that you describe. My life has been blighted with bouts of depression and I’ve never met a doctor that was remotely interested. Just the usual dismissive offers of antidepressants, which I find insulting. I think a sort of emotional numbness has spread across much of the ‘caring’ professions (for too many reasons to discuss) but one thing you must be sure of is that this lack of understanding is their shortcoming not yours.
You say that you were dressed appropriately for your appointment and spoke calmly, and of course that is the nature of depression that you force yourself to into a straitjacket of normality because to let down your guard and expose your true distress is to risk rejection which is devasting. So you don’t and that is the aspect of depression that enables people to dismiss you as coping, when in reality you barely are. It is sad that people don’t realise that often the worse you feel the more in control you seem and that doctors aren’t trained to recognise it.
I don’t know if you are relying on your doctor for treatment of your PA but reviewing the frequency of your injections and your other supplements is a must (with or without their knowledge) as is expressing your fears with like minds who have experienced what you are now.
There is always a way through and you don’t need to pretend to be coping with people on this forum.
Oh-don’t forget the pockets of the Drug companies ha ha I have never read such eloquent descriptions of our ‘world envied’ NHS that completely align with my own experience of it. I now don’t take anyone’s word for anything until I have personally verified it with my own research. I’ve even been known to ask someone something that I already know the answer to at a test of their opinion or knowledge base-how cynical is that?! I used to be such a happy naive child too 🫣😂🥰
Sorry to jump in here, but I have long thought that ‘world envied’ is propaganda to keep us blind to healthcare systems in other countries. Just keep telling us we are the best at everything and hope not too many people see through it. 😔
I am so very sorry to read how you are feeling and yes, P.A./B12 D has major impacts upon Mental Health (MH). As do other deficiencies or illnesses such as hypothyroidism, iron or folate deficiency.
Unfortunately, hypochondria is a misdiagnosis. Your heart attack occurred on a particulate date. You were diagnosed with angina on a particular date. Ditto for atrial fibrillation, again for diabetes, and with diagnosed PA.
It is early days, 9 months, if I recall correctly, for you. I do hope you are taking other co-factors. I do hope you are pacing. I would get up, make a drink and have to go back to bed. Doing little things at a time.
I previously posted Rudyard Kipling’s poem If :-
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’
The report you have recently read was written by one person. That person has a family, has friends and they may be having a bad day. You have a choice, you can agree with it, reject it or ignore it.
My own care has not been the best. It has definitely been character building. I held on and clung to my life. I had doors shut in my face. I dug deep and struggled on with gritted teeth, bruised, battered and broken, I still soldered on. I kept going and going, determined to have answers. I will be heard. I got them all and then, I healed.
Part of it was forgiveness to those who doubted, ignored and tried to label. I have no emotional baggage, it’s now just little old me. A cheeky person who can NOW smile.
I had to video myself having trigeminal neuralgia (TGN) attacks. Some people with P.A./B12 deficiency experience Bell’s Palsy.
The TriGeminal nerve is the 5th cranial (brain) nerve.
In Bell’s Palsy the 7th cranial (brain) nerve.
I was denied investigations and proper analgesia for TGN. They are so painful and it is colloquially know as a ‘suicide disease’. I had one that lasted 10 hours. However, my NHS care had completely changed because I was believed. It’s amazing what an external email from an organisation can do.
Our community is here to support you through these dark days. There is always a point. You BleekerStreet, have a story to tell. Now, is not the time. It’s taking it one day at a time and we are here to help you through. So, use us.
What a lovely post, much appreciated! The song is fab and brought tears to my eyes. I am so very glad to have found you all, the forum is my rock in a turbulent and stormy sea.
Oops-had my post deleted halfway through again? Must be pressing the wrong buttons lol I was saying that I don’t want people to have to live and experience the lives we have lived. I don’t want to have to practice forgiveness for my own peace of mind! I want all member of NHS from top to bottom to not be allowed to practice unless they have gone through a mandatory 1week stay on a ward and witness what it is like first hand to be ‘cared’ for by our ‘world envied’ system. You need the Victoria Cross to survive the beds, never mind the ascerbic attitude of 80% of the staff and when you are so poorly that you need the best you are then served the most unwholesome foods to boot! Even the hospital shops and cafes are profit oriented. That’s my experience though maybe the South fares better? My brother was in that position again a couple of weeks ago as he had been too busy with work to take his B12 and other supplements/also eating what he could get on the hoof until he couldn’t eat anything and then also couldn’t go to work as he had not only given himself liver problems but had also triggered his AF after having virtually eradicated it with the treatment aforementioned-brought his heart rate and pressure down which eventually eased his AF. Anyway after being dripped with digoxin, bisoproponol and diuretics (actually overdosed (by their own admission) in order to ensure he was within bounds for an endoscopy) Found nothing but discharged him once the meds were out of his system feeling a little better.Not for long though as reinstating the diuretics (that he’d spent months getting off as even his new doctor said he was inflamed and NOT fluid retentive) he found that yet again it had triggered gout due to dehydration and he couldn’t then walk for 3days in agonising pain. Hopefully he will now just take the blinking B12 to ensure the lining of his bowel stays healthy so he doesn’t then further impact the issue with food responses and then starving himself to heal it!!!! The best part was though that a very nice new to us cardiac specialist spoke to him saying (quietly as if telling him a state secret) that he had read new research that suggested large amounts of vitamin C had been found massively beneficial for AF and heart disease. My brother laughed and said he knew as his sister had told him, at which he pulled out a pot of C from his bag-the doctor was extremely happy to say the least. I think he might be allowed to not have an enforced bed rest in my utopian NHS ha ha then I opened my WDDTY and front and centre the same news with work done pre-polio vaccine by Kenner that was again (like Pauling’s work) ignored in favour of profits 🙁
Please don’t reply with negative comments though as I am just relating my experiences and I’m a big advocate of finding out for yourself-I’m just offering a jump off point in which to start from. This forum and its vast majority of input has been uplifting to me and long may it reign with passing on the knowledge so that others might stand on your shoulders facing the Sun with a smile 😊
Thank you. I will represent you all. You will discussed in presentations, you will be suggested on the wards, you will be conveyed in clinics and you will be emblazoned in my words and images.
Introverts do get up to a huge amount of skullduggery and tomfoolery.
For example, one evening, camping, as we normally did we played cards and gambled with short change. Again, I turned in early, calling it a night. The young men grumbled and moaned because I had £32.00 of their money. I ignored. Snug in my sleeping bag, I rolled over and a little smile creeped across my face. Charles Baudelaire’s poem of the Generous Gambler popped in to my head.
None of those young men realised that the look of concentration on my face was because I counted the cards. 🤫
Omygoodness, I need to apologise to you Narwhal10. I never saw this post or mention. I don't always get my notifications it appears. How very sweet of you to thank everyone. and call us out by name. I am so pleased that I have, in some small way, helped you or anyone here. This forum has been a true lifesaver. I wasn't sure if my contribution was of much help as I was so new to all of this. So many know way more than I do, so mostly I just try to empathize and if something I say helps, I am very pleased. YOU have been a huge help to me! And to so many! I could match your list of people to thank and thank each and every one of them too. Sleepy Bunny and Wedgewood and so, so, many. This has been a crazy journey, thank you Narwhal and everyone you mentioned for all you have done to help me and everyone. 🧡
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