My fear of using up B12 and crashing.

[WIZARD6787]

The first time in my explicit memory was when I was 3 years 8 months. There are events from my implicit memory.

The second major event was when I was 8 and had spasms in my diaphragm.

The third was when I was 10 and had seizures.

The fourth was when I was 20

The fifth was when I was 40 and was training for a marathon.

The sixth was Nov 20 2022 when I was close to death and hospitalized and finally diagnosed.

The seventh was when 6 months ago when I under-supplementing although above guidelines.

There were many times that I suffered from not having enough B12 although was able to "maintain".

The older I got the making up "stuff" that I had to catch up on after a crash took longer and longer. Although when younger my education was adversely affected by the time spent crashing and recovery.

I was good at crashing due to experience and could get by by collapsing for three days until it was not possible to push on through.

So right now I fear this winter and the extra energy needed may cause a crash. I am way behind on "stuff" due to being ill and the time and energy needed to explore and discover what is known about B12 deficiency and going beyond that knowledge. My experience of using up my B12 again as I did last winter weighs heavily on me.

I trust that I am doing and know what to do intellectually better than anyone else. I find no comfort in that it is reasonable to assume at worst I will suffer less than the last two winters.

That fear I have is in a place that is as good as it can get. I am resigned to the fact that I will have to spend a lot of money that I would not have had to had I been better able to prepare for the winter.

My current fear is pushing too hard and exacerbating the difficulty of this winter.

I no longer feel I have to worry about using up my B12 due to lack of supplementation. I do however use up my body's ability to utilize B12 due to the injury of being B12 deficient my whole life.

If I were to swim 1/2 mile today it would be a most wonderful swim. However I would need three days of rest and a lot of sleep to recover and maybe a week before I could swim 1/2 a mile again.

Unfortunately swimming is over for this season. Fortunately I have access to nice places to walk and if it is dark I can walk at a track which is boring but keeps me moving.

With my increasing my folic acid I seem to be on a trend of having three meals a day. It is still a lot of effort. It does make a difference. That is new over the last week.

I am morphing into walking or hiking every day rather than longer distances every few days. I know enough to take rest days. It is hard as all my life I had gone with setting a schedule of training and sticking to it. Now I have to make the decision while walking or hiking which is harder than sticking to a training schedule.

I am making the decision about signing up to walk in a 5K event on October 7th tomorrow. A kinda a marker that in 3 years I went from not being able to walk 25 yards to being able to walk 5K. Success not being in accomplishing the task rather if I can train and do the event without having my healing stalled for recovery, although recovering is part of healing. It is subjective, I think I may have a handle on it. All healing done in spite of the personal medical help available to me. Other than the test done when I was close to death which showed B12 to be not detectable.

I am OKish with the fact I was misdiagnosed and undiagnosed so many times. It bothers me that the medical personal I hired do not face their failure of diagnoses and treatment. And will never face that I succeeded in treating and they failed and are currently failing at treatment and diagnosis of others.

Thinking about the 5K walk is hard on me emotionally, as an adult I have run many races of many lengths up to 5 miles and 25 miles a week was a maintenance week for me and included other activities.

This is not a "woe is me" post. It is an evaluation contemplating how I have done and what direction to take. I have done well I had a hard task is all.

I feel I am now likely doing as well as I was 45+- days ago when I had procurement issues and decided to do a trial of only sublingual. That was good data. It took about 25 days to find the sublingual is not as effective for me as injecting. Then a while to recover and advance from the trial.

Hunger has become less of an issue, fading at the end of the day is less of an issue. Mucusy seems to be lingering and related to more exercise.

I care little for the concept more exercise is "GOOD" On the other had I do believe that exercise done appropriately for my situation is positive. You can not heal from the B12 deficiency and the damage caused by eating well bla bla bla. Ask me how I know.

I am leaning towards my measure of how much exercise is too much as being if I do not enjoy eating three times a day.

[wedgewood]

You have shown great self-discipline in gaining control over your health , given such terribly difficult circumstances. You have achieved such a lot . I hope that you continue to do so .

It grieves me to think of the many B12/ P.A. patients , unable to access any information , who are untreated or under treated who are going through hell for the lack of a cheap vitamin .

Thank you for telling us your story .

[WIZARD6787 in reply to wedgewood]

Thank you for your reply. It is appreciated.😀

[purpleabc]

You are amazing how you try different regimes. It must be so hard for you because you are so used to exercise and being fit. Exercise was how I crashed in 2022, diagnosed in 2015 with PA. I say exercise but to you with your marathons and swimming it was nothing. I did a little floor work one day and the next used my exercise bike, instead of getting better I got worse !! Then came the pins and needles, brain fog, losing words, weight loss etc. I got back to "normal " about 6-7 months later after twice a week B12s at the Gp's. Sadly they started to space them out and I went backwards. Now exercise terrifies me. You know we need it to be fit and healthy, I applaud you. Be careful with yourself Wizard. I wish you all the very best and thank you for your posts

[WIZARD6787 in reply to purpleabc]

Thank you for your reply. It is appreciated. My post are entirely self-serving in that it helps me to write things down knowing someone will read them. I do not understand why that is helpful I just know it is.

[shaws in reply to WIZARD6787]

By writing down your symptoms and getting responses from members may well help in taking some of the burden on your shoulders re your health that may be worrying you at present..

[WIZARD6787 in reply to shaws]

Possible but not probable.😀

[Nackapan]

I'm just reaching the 5 year mark.I've also tried many many things to progress.

I'm still not able to ride my bike ,go swimming or indeed walk anywhere without thinking about it.

.

I'm naturally an active person.

Spontaneous.

Well that's taken a new meaning !

Many many learning curves.

Retraining brain expectations.

Finding s patience l didn't know existed

Pushing through, an old habit simply sets me back .

Winter brings for me darkness.

Staying in as still highly sensitive to artificial light.

Cars with lights on lampposts, shadows all affect my brain.

I'm tolerating a little more year by year.

Glad I can now watchTV.

Still cant read s book or use laptop or landline which is frustrating.

Not even going to attempt wrapping presents this year tha noise of paper just awful.

Bought bags .

So you are doing very well and put alot of effort into recording and managing your symptoms.

I'm more haphazard as' life ' interrupts any regimes.

So take a day now a few days at a time .

Onwards and upwards as they say

[WIZARD6787 in reply to Nackapan]

Until proven otherwise which is my highest standard of confidence I would not be able to do what I now do had I not increased my B12 injections well above the 1mg EOD.

It does not follow that anyone else could with my increase or could not following the 1 mg EOD.

[Nackapan in reply to WIZARD6787]

No