IS PACING POSS 100% - DISCUSS

[Emmarose47]

Hi I'm struggling
I've deteriorated again this yr...
So the house bound really is housebound... No more walking around the garden... At this point anyway..
No more visitors even doorstep except homehelps.
Bed, couch, bed, couch with some ability to still walk about, stand outside the front, bath etc.
What I'm beating myself on is 'ain't hindsight a wonderful thing not!
I really want to be able to pace 100% to control my actions fully so I'm not adding to deterioration but I've never been able to do that 100% discuss nor has anyone else it seems !
I ask God for help.
An example yesturday I went out the front for fresh air and my neighbours dog was out I called him and we had a cuddle. Now if the neighbour had of come over to speak would I have had the balls to say 'sorry can't talk for long or would I have just talked for say 5 /10 mins because the human connection is good...
I'm so pissed that social contact is one of my big triggers....
And as we know people don't understand no matter how I try to educate people.
Whats the solution not go outside? I don't feel willing to do that..

I'm looking for others experiences of pacing and self beating or acceptance.

I'm scared of being full bedbound... Does everyone who shows this level of deterioration become bedbound.... I can only think not everyone does..

God please help me
God please don't let this happen to me.
I'll try harder
I'll try my best I hope

 

[hapl808]

I'm so pissed that social contact is one of my big triggers....
And as we know people don't understand no matter how I try to educate people.
Whats the solution not go outside? I don't feel willing to do that..

I'm looking for others experiences of pacing and self beating or acceptance.

I'm scared of being full bedbound... Does everyone who shows this level of deterioration become bedbound.... I can only think not everyone does..

I think I've been more limited than that for four years or so, but I have mostly avoided being bedbound. Even during my bedbound weeks, I've been able to get to the bathroom (with crutches), use a laptop sometimes, etc. So I think each version of 'severe' varies.

I'm fully housebound (for many years), but generally can avoid being bedbound. Unfortunately pretty much all social contact is a big trigger. I talk on the phone, but limit each call. I'm 'lucky' that I can usually recover from a 30 min call within a couple hours. If I push it past an hour, then I usually crash.

Computer work is the worst, because it still makes no sense to me. That's why I don't expect others to understand it, because it's happening to me and doesn't make sense. I can make coherent forum posts like this and it won't crash me, but switch over and work on editing video or programming, and I'll crash within 30 mins. Maybe it uses a different part of the brain or neurotransmitters or something. And then if I crash, all my physical symptoms get worse. Completely bizarre.

So I think I have worse than your level of deteriation (haven't 'gone for a walk' in about seven years - crutches to stand, etc), but so far avoided becoming bedbound. It's a constant worry, though. I'd love to have in-person interactions, but they crash me too quickly.

Not sure if that's helpful.

 

[sunshine44]

I believe in you Emma.

I had no real fear of becoming as severe as I am, because I honestly didn’t know this existed. But as I became closer, I know that feeling. It’s natural.

I have thus far survived against insane odds and you will too. I have placed help requests in social media and had people I hardly knew wash my hair and my story in the paper landed me two helpers as you know. My illness made my husband (partially) lose his mind. He’s mostly been unable to cope or care for me until some tiny recent shifts. Which meant slot of begging and creativity on my part for survival needs.

I’m not saying to not be concerned but let go as you can. Flow like water. Your healing is possible. It’s amazing you’ve recently connected to a restorative practioner. I truly have found so many of my issues are in roots of unfriendly microbes and metals etc as many of these types of practioners speak of. Just listen within to not go too quickly. That expedited my condition.

Also, season changes are a tough time to make a proper assessment.

If I could go back, I would pace and pace and pace. The fear took hold of me as I felt I was losing something in my grasp. I was trying hard to do so many things before my collapse. I completely pushed myself over the edge. Plus, the medical establishment was telling me it was perfectly safe to.

What I do now is close my eyes. No matter how good the practioner or book or doctor etc…. I say does this feel good? Is my body in agreeance with this supplement etc.

Connect with your body if you can in this way, see what areas are bricks on you right now. Make note of them even if you can’t shift them just yet.

Do you feel like sharing what your typical day meals are? No worries if not. Eating was very hard for me and I lost much nutrition stores in my cells quickly and would do things a bit differently this time around with food than I did back in 2016/2017.

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