Care from society,family

I don't know about knowledgeable @BlueBells I just think of us all I the same boat trying to offer support to each other and based on either our research or our own experiences. But I will take that as a compliment cos I'm in that sort of mood! 😍
 
Thank you for your activity and support! I didn’t think I would receive so many answers!
I became very withdrawn (distanced from people) over these two years, the psychologist advised me to communicate more. At least try.
 
Auriel said:
If you really want to delete the post (or any post) there are 3 little dot's next to the report button that give you the choice, (it asks why you want to delete so you just give a reason)
✨️🍀✨️
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Just be aware that if you do this to the FIRST post in a thread, it will delete the entire thread.
Any other post won't do that, but deleting the very first post will.
 
On this topic.
The fact that it is difficult for those around me to accept the illnesses of loved ones is not news to me. We go through all stages: rejection, anger, denial, bargaining, and exit. But this usually happens with diseases that are being treated. And this... This is chronic. Others constantly need to pay attention to you and help. It ruins relationships over a long period of time. How to maintain independence in life when you are forever bound by pain?
 
In my own opinion ( and we all have our own thoughts and lives of course ) it's a very difficult readjustment of learning g to accept the things we can do and not the things we cannot do anymore. I'm sorry if this sounds brutal but this is just how I see things. I am quite newly diagnosed so I am very much learning as well.

And yet I try to remain optimistic. The independence in myself as a person is in some ways from the fact that I am finding small ways to help myself, by pacing my energy levels, so exertion followed by resting, gentle exercises, finding a mix of cold compresses and heat pads help different symptoms, positive adaptations to help my life not make it worse.

I see these changes a as positive - doing something kind just for myself.

There are a few threads on here on similar questions- because this affects us all in varying ways. I'm not very good (yet) at needing to ask for or accept help. I really need to learn this as I tend to doo too much than my body is capable of and then suffer the physical consequences.

If you type the word acceptance in the search bar by should find more about this.

You joining this forum is a huge positive step in my opinion @Olesia I hope others can share their own thoughts too
 
Ooh I didn't know it deleted the thread 🙀 there's nothing really to delete, it's just your nice native language 😎
 
Olesia said:
Thank you for your activity and support! I didn’t think I would receive so many answers!
I became very withdrawn (distanced from people) over these two years, the psychologist advised me to communicate more. At least try.
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@Olesia I was hoping you'd find that ;)

It can be busy, then quiet, then busy. Don't forget to check out the other threads too, which maybe you already are.

Hopefully you will find the support and communication you need here. :)

It's good to see you around 🤗🤗🤗🤗
 
At first I wanted to delete the unsuccessful first message (problems with the translator, auto-replacement of the original text).
I wanted the topic to be convenient for other participants to read. Now I see that my second, already correct message is visible and people are responding.
 
Olesia said:
On this topic.
The fact that it is difficult for those around me to accept the illnesses of loved ones is not news to me. We go through all stages: rejection, anger, denial, bargaining, and exit. But this usually happens with diseases that are being treated. And this... This is chronic. Others constantly need to pay attention to you and help. It ruins relationships over a long period of time. How to maintain independence in life when you are forever bound by pain?
Click to expand...
Everyone needs to come to their own way of handling this....the way that feels right to you and that is appropriate to your own circumstances and lifestyle and personality.

What I do is I basically never ask anyone to pay attention to me or to help, because as you have said it will ruin a relationship over time. If I cannot do something that really needs to be done, and with a very small amount of help I can get it done, I will ask a friend if they can help me.....but I always make it clear that their role is very finite, and that they should absolutely feel free to say no if for any reason they don't want to do it. I ask a person, each time, if they will feel comfortable saying no, and if they won't feel comfortable saying no then I don't ask. And the only person I will ask for this is someone who has already asked me for help a couple of times and I have been able to help them.

If I don't feel right asking for help at all, or it's a bigger job, I hire someone to do it for me. I don't have much money, mind you, so that means sometimes a thing has to wait while I save up the money.

If it is something like cleaning the house or laundry, I just don't do it unless I am having a good enough day to do it myself. Or, I do 1/3 of it one day, and the rest I get done over the next 2 days. I have gotten used to this and it's not really a big deal.

The other thing I do is never, ever talk about my pain to others. Ever. If they ask, I will say something mild like "Oh, it's been a bit worse lately", or, "It hasn't been as bad this week", and then I change the subject. It helps no one, least of all me, to go on about how much pain I am in. And doing so will very quickly make people not want to be around someone at all. I use my time with other people to talk about anything BUT my pain, and it's a great way to distract myself.

I maintain independence by these methods.
For me it's very important to get things done myself as much as possible, and also I don't have family or friends who can help me for the most part. I have lowered my standards of how everything has to be, while still maintaining a reasonable standard. I have gotten rid of a lot of stuff to simplify my home, which makes it easier to maintain.

These are the things that have worked for me. If you practice looking at things in different ways, you will find what works for you.
 
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