Writing a lot here. : I am aware I am... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Writing a lot here.

WIZARD6787 profile image
13 Replies

I am aware I am writing a lot here. I am also aware others are doing the important work of disseminating information to those who are suffering and I am not doing that work. I mean no disrespect to those in the throes of B12 deficiency. I write as it is helpful to me and others indicate it may be helpful to them. I would not have got here without the work that others on this forum did and continue to do.

One of the reasons I write is when I do I discover what I am experiencing as I write. It is sometimes spontaneous thought put into words. A method I used for my work for money.

So I have now walked 5K 5 week-ends in a row. Each time is easier. However I am self-inducing a roller coaster which has a somewhat predictable cycle. It is not as distressing as when I was under supplementing which was not at all predictable and it was only 6 months ago that it became less unpredictable. Due to increase of frequency and amount of injections.

It could be viewed as the exercise causing a reversing out. Note: I have no idea if the reversing out I experienced was necessary and would not have been prevented with adequate supplementation.

The cycle started something like this: (An over simplification with many ups and down within the cycle. This is a methodology I call Framing.)

Day of walk energized, not attributable to runners high, night of walk pain and sleep disturbance.

Day Two- hunger not present and eating limited, feeling cold hard to keep up with stuff, need lots of sleep and experience good sleep.

Day Three- able to work on hunger and do some stuff as long as it is not paperwork, still need lots of good sleep.

Day four- grumpy/angry and able to keep up with stuff, resent all the work of B12 and have to force myself to supplement. (Note: Would likely stop or greatly reduce supplementation if those on this forum had no expressed the result of doing that.) need less sleep.

Day Five-start to question if I need all this supplementation and feel pretty good, eating is normalish for me, maybe it was all in my head. Start looking forward to my 5K walk. Start to think maybe things are getting much better. (Which they are just not consistent.)

Day Six-start to question if the 5K is a good idea or should I do more each day and walk a shorter distance etc.

Day Seven walk.

That is how it started and each week the "negative" experiences are less severe and the positive ones experienced with a little less trepidation. If I think it is best I could likely shorten the cycle and walk more often.

Now I have to guess what I should do. Oh bother! Leading towards shortening the cycle and walking less but more often. Maybe 3K. As I write it seems just change the distance to 3K.

I could reasonable use this frame of my cycle ad correlate it to my life of ever increasing B12 deficency.

And of course there is the standard shipping of supplement issues and now I have no hydroxo and will have to ue cyno and see how that goes. Just what I needed more ambiguity. 🙂

When I write here I always feel like I am misrepresenting my life as negative. That is because I am working out a solution to a problom. There is much joy and beauty in my life and relationships.

Written by
WIZARD6787 profile image
WIZARD6787
To view profiles and participate in discussions please or .
Read more about...
13 Replies
Narwhal10 profile image
Narwhal10

I like your posts. As a clinician, we write minute by minute accounts in particular situations.

Here is your outlet.

Yes, by documenting you can see patterns emerging.

So, it is a case of working things out.

Day 4 recommend - Was it worth it ? I know if I’ve had a day or 2 and pushed through things I will suffer.

I look at the photos I have taken and know it was all worthwhile.

A river
WIZARD6787 profile image
WIZARD6787 in reply toNarwhal10

In my work I sometimes have to go back in my research to when the King of England owned the piece of land I am working on. Not all notes are created equal. When I write professionally I try and keep in mind my work that gets registered in the court house might be used by someone else in a century or two.

I get to read some notes the medicial personal write. Except for the terms I would rate the writing at 10 grade level at best. The emotional maturity about the same. Perhaps with the difficulty of their training they did not have the opportunity to study logic and writing although I expect they believe they are excellent note writers because no one told them they are not.

I am closer to being able to see the patterns as it is less complicated. For now I will have to work with cycles.

Narwhal10 profile image
Narwhal10 in reply toWIZARD6787

WIZARD6787,

I chortled at, ‘Perhaps with the difficulty of their training they did not have the opportunity to study logic.’

Whenever asked how confident I was that something would work.

Oh about 90 %. Most people, even with degrees, Masters and PhD’s cannot read simple instructions.

AND, OR, NOR, NOT, NAND, XOR and NXOR are logic gates in SMART stuff. 😉

WIZARD6787 profile image
WIZARD6787 in reply toNarwhal10

I have written and contributed to environmental laws and regulations. The language of may, does, will, can, must etc is how I now think. I translate what others write to that use of language.

If you translate what is thought to be fact about B12 there is a lot more may be than actually fact. And there is a ton of it may be indicative of ...., That is not unique to the understanding of B12 and the treatment of B12.

Don't get me started on fallacious arguments. The doctors I deal with seem to have a duel major of argumentum ad verecundiam and ad hominem. 🙂

If you are having heart attack and a mobile defibrillator is used you have a better chance of a more positive outcome if the person is not trained and therefore follows directions.

There is a 30% reductions in errors in the operating room if a check list is used as pilots do. Surgeons refuse to use a check list and nurses now demand one be used.

My highest standard of certainty is until proven otherwise.

Narwhal10 profile image
Narwhal10 in reply toWIZARD6787

My meme for argumentum ad verecundiam is attached.

Many years ago, I received a phone call from a manager at 10.00 a.m. after having the usual hectic night shift. According to them, I had not checked the baby resuscitaire. A machine used in emergencies.

I explained that I could not find the correct pro forma in their weird computer system. Then stated, Turn over the page. The penny dropped and I hung up.

I had used a ruler and pen, duplicated the form , then checked and ticked that the emergency equipment was all present and correct, sterile and it worked.

Note to self : write P. T. O. on forms, so I do not get woken up after 2 and half hours sleep.

I see no point arguing with you, you are doing a fine job yourself.
brenanddave profile image
brenanddave in reply toWIZARD6787

I'm following your journey with interest! Like everyone on here I am trying to understand P A. What it is, and what it may look like going ahead for me . I plan to try what I can to somehow achieve more quality and normality in my life going forward. I will be experimenting for sure. Good luck on your journey and thanks for sharing. x

FlipperTD profile image
FlipperTD

Keep on keeping on, Wiz!

WIZARD6787 profile image
WIZARD6787 in reply toFlipperTD

Thanks for the encouragement!!!

nitaslenz108 profile image
nitaslenz108

If the b12 deficiency isn't adequately treated you may find that suddenly your brilliant mind doesn't work the same and /or your body is unable to respond to your desire to walk, much less run. I was a super strong woman that took great pride in my academic accomplishments. I didn't know what I was experiencing could be treated as my Doctors were clueless and idly sat by watching my gradual demise, writing it off as depression or anxiety. My agile body gradually lost it's ability to respond to my demands. My mind gradually becoming dull and slow. Pain became my daily companion. I now read about others rolling down a similar trajectory due to lack of awareness regarding this malabsorption problem. The inevitable loss and physical depreciation is all too real. I recommend you take heed and become seriously devoted to daily supplementation before you experience the severe loss of self that so many others have already succumbed. The brilliant mind is a beautiful thing to cherish and something I wish I could get back. Don't lose yours out of flippant stubbornness and succumbing to the primal desire to live in denial of evidence already present. All I can say is "what a waste!"

WIZARD6787 profile image
WIZARD6787 in reply tonitaslenz108

With my current regiment my mind is not only coming back online it is improved somewhat due to a life time of B12 deficiency and personal growth.

Three years ago I could not even do the rubric cube which is very hard to learn but very easy to do.

Ghound profile image
Ghound

Keep writing Wizard ! I enjoy reading your posts, just as I appreciate everyone who contributes here.

Mostly I don't have time to reply or anything worthwhile to add, but I do read everything !

Thanks and best wishes xx

WIZARD6787 profile image
WIZARD6787 in reply toGhound

Thank you for the encouragement. Let me know if you regret it later.🙂

PaintLadie profile image
PaintLadie

I like reading your posts. I too don't always have time to post, but I do like to read what others are posting. It's like having a friend you can relate to and check in on every once in awhile.

Not what you're looking for?

You may also like...

B1 Thiamine

Current Trial (7 Days); 1.5mg methylcobalamin 3mg/ml, 1.5mg adenosylcobalamin 3mg/ml, 1mg...
WIZARD6787 profile image

Writing to my doctor

Hi All Like many on here my B12d injections were halted because of the COVID 19 emergency which...
Alfabeta profile image

Starting SSRI during reversing out?

OK, I realise that I sort of asked this in my post a couple of years asking for help, but I think...
Laverdista profile image

90 day Update.

Years ago I rejected the principle that EOD was all I could do although it 'worked'. A year ago...
WIZARD6787 profile image

Oh what a mess

I am in a really bad place right now....I have PA, MS Hypothyroidism RA plus plus At the moment I...
ellj profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.