22 Months into recovery: Someone asked... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

22 Months into recovery

Wwwdot profile image
10 Replies

Someone asked me some very good questions today about what recovery may look like. Everyone is different but this is a snapshot from mine. What a difference in 22 months:

My P.A. entry December 2022 (EOD injection then)

✍️ didn’t sleep well. Anxiety attack in the night. Woke with tingling pains in hands and lower arms and pains in legs. Difficult to concentrate. Left J to deal with xxxx. Roast pork, cabbage sauerkraut and preserved broccoli and rice. Beetroot and carrot. Kefir - running low. V tired feel like shutting down. Very cold. Did birds ok. Bed at 8. Vit D. Still ringing in my ears. Throat lumpy. Chesty. Would have wanted to SI today.

Entries about 11 months later in November 2023 (after radical diet change - Autoimmune Paleo (AIP diet) and 4 injections a day)

✍️ went from 3 a day to 4 a day as keep getting flu like symptoms about 5-6 hours after jab

✍️ 4 a day working well. Feel I need B12 if I go more than 4-5 hours. Been really busy too! Sleeping well too.

✍️ tried to go whole day without SI. By 2 pm I felt dreadful. Aching teeth, shoulders and fuzzy head. Took two x SI to recover. Started taking 800ug folic per day. No SI clearly NOT a good plan!

✍️ missed 2pm jab had at 5 pm instead. Balls of feet painful again evening only. Spots in hair. Feeling good.

And this weekend October 2024, still on AIP diet and 4 injections a day:

✍️ Cleaned and sanded two pieces of furniture by hand. 4 x B12. Did sheep and donkeys. Tidied kitchen.

✍️ Cleaned and sanded 12 drawers with orbital sander. Prepped and painted. Painted furniture. Did sheep and donkeys. Wrote letter to GP. 4 x SI.

Feeling good and comfortably tired!

🥰🥰🥰 A HUGE THANK YOU 🥰🥰🥰to all of you wonderfully generous people on this forum - you all know who you are - for helping me get my life back and giving me the courage to listen to my body. I genuinely know that without this group I would not be where I am today. ♥️♥️♥️

I know so many of us are still suffering and I hope by sharing this 2 year snapshot of my ongoing health journey I can offer hope 🙏🙏🙏and encouragement. I took many wrong turns and there have been setbacks and no doubt there will in the future but this forum always helps me get back on track ♥️♥️♥️

As well as the B12 I have taken steps to rebuild my gut health and ensure that my vitamins and minerals are well stocked. I have consulted with a functional nutritionist as well as doing my own research.

THANK YOU seems so inadequate for what I have received from you all. ♥️♥️♥️

🤗🤗🤗🤗🤗

Written by
Wwwdot profile image
Wwwdot
To view profiles and participate in discussions please or .
Read more about...
10 Replies

That’s so good that you’re feeling so amazing! I have to confess, I feel like showing your schedule to my neuro who wants me to back of EOD injections!

Have you tried decreasing at all lately? What happens?

Wwwdot profile image
Wwwdot in reply toPlatypusProfit8077

Hi PP

Some days I only do three injections - usually slower days and my body doesn’t remind me that I need a fourth. But interestingly if I do that for too many consecutive days then night anxiety and facial neuralgia start to creep in. So 3-4 injections a day seems to be my sweet spot.

I went away recently with friends and it was an active 3 days and based on body demand I needed 5 on those days - my teeth began to ache which is my more normal routine tell tale as well as the volume of my tinnitus increasing. I also started to flag in the evenings but it was full on activity and socialising.

🤗🤗🤗

ClaireWF1346 profile image
ClaireWF1346

What a journey of ups and downs! I also don't think I would be as accepting of this new life if this forum didn't exist. Always so Kuch support on here 🥰

Mixteca profile image
Mixteca

😍🥳💖

Canadian77 profile image
Canadian77

Great Job! Very happy to hear you are doing so well!!

WIZARD6787 profile image
WIZARD6787

"Sweet Spot"? What kind of engineer are you? I believe you mean administration of B12 at a frequency required for the current desired results. Means the same thing but you can bill more. 🙂

Good on you and congratulations! 🏆

If you had suggested to me 4 years ago that I would inject myself with B12 at any amount I would have asked "What are you f'n high?

For me each time I improve my supplementation it takes a leap of faith not knowing where I will land. It is against my nature to self treat. I design building lots and it is not unusual for me to be on a site and be told "I designed it myself" I think to myself I saw that some fool did, good to know it was you.

Although I have much experience in designing my own treatment with success not even close to attainable by following I still have to go through the self doubt until the improvement is undeniable. It is hard as the improvement is not obvious to most people the exception being those that I am very close to. The other day someone remarked you seem more at peace. I am very experienced at not letting on I am suffering.

I started with correcting my hematologic status. I then morphed into neurological status. I am now working on energy production and have had success with NAD. I am dragging my feet a bit as although I love my results the process of deciding how to achieve success is boring to me and I resent that I have to do the work. Big day for me when I understood those that claimed I would eventually improve with EOD were incorrect in their assumption that they understood. No way to know if they would experience success at a level higher than EOD unless they do the work and try.

Thank you for sharing! I tend to cheat a bit and under supplement due to the emotional aspect of self treating when intellectually I know my life will improve if I supplement at a different or higher level.

Wwwdot profile image
Wwwdot

Hi Wiz

Thank you for your encouragement and kind words.

I fully get the sentiment “I resent that I have to do the work” particularly when we have to put the work in perpetually and sometimes in a negative feedback context …”you need more?”, “when are you going to reduce” or “when will you stop?” rather than a positive feedback context of “so you met your expectations!”, “you are making progress!”, “you are regaining your health!”.

The truth is that the only body that matters and we should listen to is our body.

Your insights showed me how to listen and helped me find the courage to respond.

🙏🙏🙏

JesusMercy60 profile image
JesusMercy60 in reply toWwwdot

good morning,

you all are so strong, full of courage and help others, I'm so Blessed with this Forum to learn from everyone. the extra b12 Wwwdot has changed my life during my 5th month of treatment. I can stay at 3 injections but I feel the need sometimes when I go to many places and grandkids all in one day. on the Wedding day the 4th injection made my day a Blessing. now I can enjoy my family outings with comfort.

Thank you!

Rosina

Wwwdot profile image
Wwwdot in reply toJesusMercy60

Hi JM

Kind words and you are right that it does take courage to row one's own boat and to be the Master of our direction of travel. The forum support is invaluable at making our individual, and often lonely journeys full of companionship and support - we are part of a worldwide team - each helping and supporting each other to achieve our best health.

It is important that we remember that B12 is also a team player - it needs its key cofactors of folate, vitamin D and iron as well as the support crew of magnesium, zinc and selenium which a handful of nuts a week will keep topped up - assuming you can eat nuts!!

To many of us, living our life rather than suffering our life is all we aspire to, for some that is much harder to achieve than others, for some the path is relatively short (years) and for some it is longer (decades), for some it is fraught with other illnesses and for some it is a single cause.

Whatever our health journey may be, the most important thing for us all to remember is that we are not alone and that the folks on this forum have always got our back, just as we have the backs of others. The recovery journey is not a sprint but a lifelong marathon for most of us. We all deserve medals for endurance and resilience!

For me, little wins, like helping others gives my lonely journey meaning and the friendships borne out of this challenge in my life are priceless.

🤗🤗🤗

JesusMercy60 profile image
JesusMercy60

Amen ! very well said. I want to start to eat nuts again, I ate them all the time a year ago with no problem but about 7 or 8 months ago it was instant loose bowels. so I had to stop. along with the vegies that I used to eat all the time as well. so hopefully soon my stomach will continue to get stronger. I just got to go the the library with the grandkids and had not problem so I will take my second inj. at noon. I will then rest for the afternoon. go with Hubby to the cows rest, then tonight they have the little kids football at 6 so I will inject my eve dose right before I go and see them play. then rest and relax and get ready for bed . I'm so glad I got the other injections coaching from you! thank you again.

Rosina

Not what you're looking for?

You may also like...

3 Months into SI

Hoping someone can help here - I'm 3 months into SI every 2nd day trying to string it out to every...

Quick Recovery?

Ok, so I've just had my second B12 jab on day 3. I've felt nothing since I got the first jab then...
DBee profile image

Lump after jab.........

Good morning everyone I have eventually purchased B12 and all the required stuff to SI.......Been...
edeuweed profile image

6 Months on since SI

I'm pleased to say that since my first SI which was pretty daunting it has become a routine matter...
Cali25 profile image

Feeling awful a week after jab.

Hi, I was diagnosed with b12 deficiency 2 years ago . I have 10 weekly injections. Usually I am ok...
Mrsmr 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.