Patience in the Mean time how to Cope

[Purplegirl2]

My b12 journey’s been a struggle and despite alternating between weekly injections and monthly (cyano) my levels haven’t improved all that much over the past 3 years and my symptoms haven’t either. As I’m in the process (again) to go back to weekly shots it’s still a major test of patience because even if everything goes right it could take up to 90 days from now until my symptoms resolve. Three years of this battle and it’s exhausting and hard to keep up my stamina. I will feel bad about myself when I need to take naps in between classes (I’m at uni) or struggle massively to get up in the mornings, and dealing with my daily heart palpitations at night. I know I’ve got a lot of my plate and I should be proud of how well I managed yet I still beat myself up about not being as productive as I should, struggling with productivity and brain fog and mostly wanting to sleep all the time. I know what needs to be done but some days I can’t get myself to do it all. It definitely can tank my self esteem at times even though I have issues I’m going through I can’t help but feel like I’m so lazy and incompetent of living like a normal person and I feel bad that most days I’m trying to just do the bare minimum to get through and I’m not proud of that.

[Nackapan]

You should be proud you are managing at all at uni.Some would understandingly change course

My youngest daughter was very ill 4 months into university.

She decided to stay.

She was not a 'normal' student either.

At that time PA was not diagnosed but told fibromyalgia amongst other things .

She never drank alcohol

Had good food .

Tried pilates

Didnt socialise much as she simply couldn't.

She managed to work at her colleges bar to earn some money and see people.

She sought help ftom student services.

At one point given counselling.

Also got sone funding towards

'Dragon speak easy'

It became too painful to type or write.

It typed as you speak to it.

Hospital appointments for investigations. trials on meds for muscle pain .

Mouth Infections

Falls

Crutches ect ect

Like you having to sleep alot.

Was able to eat well.

Do get help/ support from the University.

Student health. For bloods at least

Some must exist.

Later on she became a college caretaker/ sen. tutor.

They shoukd give emotional and practical support to you and all students .

I would try and stick to a b12 regime.

So if weekly stay on weekly.

Very very difficult to pace but prioritise getting say one thing done in a day.

Don't push study .

Work when able.

Be kind to yourself.

Make sure good food.

Lots of water.

Check folate levels

ferritin

Vit D

Iron.

Push for whatever bloods you can get .

Supplement accordingly

Can be isolating.

Hoping you've made good contacts and friendships starting.

A chronic ongoing condition/ illness must never be underestimated .

Try and accept current limitations and get a routine that suits you.

Take care 🙂

[jade_s]

Hi Purplegirl2, i'm sorry you're still struggling. Did you manage to get your prescription filled? Have you considered ordering from Canada as a backup?

I agree, pick a schedule and stick to it. If I were in your shoes I would go back on 'loading doses' (daily) and stay on them until you see improvement, and only then try to decrease.

You're not lazy & incompetent! It's this disease! It's your body's way of conserving energy because it's starving (for b12). Once you give it what it needs, you can start healing. Anything before that, consider it like you're walking around with a cast on your leg. You wouldn't be expected to climb a mountain! Be gentle & kind to yourself. What would you say to a friend in your situation?

Once you get enough b12 it will resolve on its own. So i would focus my energies on that. And in the meantime you need to try amd find a way to accept that this is the situation. You're doing your best, and you want to do more, but it is what it is. Believe me I know because I developed b12d in the middle of my PhD and kicked myself every day, like you are now. So do as i say not as i do 😂😂😂

[EllaNore]

You should be very proud of yourself. It sounds like you have a lot on your plate. It sounds like you're a real go-getter and a hard worker and not being able to do that is hard for you. That says a lot about you. You must have a lot of character and a strong work ethic. That could take its toll on people. It's okay to take a nap when your body needs it. And if you don't your body will make you when it finally just shuts down.

Don't be too hard on yourself. It's okay to not do it all. Life can be very overwhelming when you don't have anything wrong with you, ket alonw having PA. It makes things a hundred times worse. And I'm sure you look perfectly normal and perfectly healthy, which makes it difficult for others to see that you have a private struggle.

It's very difficult to accept that we are not 100%. We lose so much of Who We Are with this stupid disease. So try not to lose yourself in it. Give yourself the breaks you need. It's okay to take a nap. And if you do take a nap you'll feel much better afterwards and be able to handle the rest of the stress that's coming at you everyday. So try to get some sleep and try to give yourself the rest it needs so that you can deal with everything. PA makes that difficult to rest because of the insomnia, so that's why if you do get tired during the day you should find the time to take a nap. Even 10 minutes of just laying down for a little while helps me get through a few more hours of the day.

If you were watching somebody else live your life and do all the things you do trying to juggle a very serious illness with working at a university and all the other things that life throws at you, you would tell him to be gentle with themselves. So I'm telling you be gentle with yourself. Don't be too hard on yourself. It's okay to leave a dirty dish in the sink for a couple of days. It's okay to take a nap. It's okay not to vacuum every single day. It's okay. I know it's hard if you don't keep up with chores and everything and they start to pile up it's hard to catch up. That's why I try to keep on top of everything but sometimes I just can't. And it's okay. I'm sending you a big hug. Don't be too hard on yourself. 🦋🫂🦋

[jade_s in reply to EllaNore]

This is so nicely and well said EllaNore!

[EllaNore in reply to jade_s]

Well, yours too. It's so easy to see yourself in what others write. You just want to reach through the monitor and hug each other.

[jade_s in reply to EllaNore]

Yes exactly! Virtual hugs all around 🤗🤗🤗

[B12life]

if you are in the US get b12 from canada and start doing daily shots. the heart palpitations will go away and your energy will go back up but it takes months. I have had to stay on daily with cyano. I like the cyano better than hydroxy. You have to stay on the daily or Every Other Day (with hydroxo).