Care from society,family

[Olesia]

Здравствуйте, уважаемые участники. Я использую переводчик. Насколько я понимаю здесь раздел о жизненных темах и трудностях. Я хотел бы спросить, кто вам помогает? Есть ли поддержка со стороны семьи и друзей? Как ваша семья относится к вашему хроническому заболеванию и ограничениям? У всех разная степень выраженности симптомов, я знаю, что большинство героически переносят и продолжают жить активной жизнью. Но хотелось бы услышать мнение тех, кто находится в тяжелом обострении и иногда нуждается в посторонней помощи. Спасибо.

 

[BlueBells]

@Olesia

This one not translated either

 

[Olesia]

Hello, dear participants. I'm using a translator. As I understand it, there is a section on life topics and difficulties in life. I would like to ask, who is helping you? Is there support from family and friends? How do your relatives feel about your chronic condition and limitations? Everyone's symptoms vary in severity. I know that the majority heroically continue their active lives and work. But I would like to hear the opinion of those who are in severe exacerbation and sometimes need help with everyday activities. Thank you.

 

[Olesia]

Thank you for noticing the mistake and telling me. Can the message be read in English now?

 

[BlueBells]

Здравствуйте, уважаемые участники. Я использую переводчик. Насколько я понимаю здесь раздел о жизненных темах и трудностях. Я хотел бы спросить, кто вам помогает?

Hello, dear participants. I'm using a translator. As I understand it, there is a section on life topics and difficulties in life. I would like to ask, who is helping you?

@Olesia
does this look right? I'm sorry, I only speak English, and I don't recognise your language.

I'm presuming it is difficult for you to browse the forums, because of the translation issue, I have no idea how it works.

It seems that in many cases, family and friends have great difficulty understand just how we are affected, mainly because we don't look sick. It's not uncommon to be told it's imagination , or faked.

Please do join in any threads that sound similar to your symptoms, you are most welcome.

 

[Olesia]

I want to ask the administrator to delete my first message, which was not translated by the translator. Then this thread will be read and answered. Thank you.


I speak a little English, but if I start writing on my own, it will be even worse than through a translator.

I read forums in my language a long time ago. I became interested in how people live in other countries. Maybe there is some other treatment. Maybe people are kinder. Our society has a bad attitude towards the sick and disabled. You are invisible at best. You have no chance of becoming a full-fledged member of society. If you don’t have anyone from your family to help you, it can end badly.

 

[BlueBells]

@Olesia

That's sad, the way disabilities are viewed, but it is world wide to varying degrees.

At least on here you will not be invisible. @Auriel , @SBee @Badger , maybe one of them will pop in soon

I mainly get the fatigue and fibro fog, the sleepy brain that just switches off just when I need to do work, but I'm learning how to work with it, to rest before it gets too bad, and I recover more quickly that way, sometimes, anyway.

@sunkacola may be able to offer suggestions re the post removal. The other go to person, @JayCS , is having a break. I'm hoping he will return soon.

I truly hope you find the people here very supportive

 

[Olesia]

Thanks for the contacts of people on the forum. I need your advice. Where can I post my story, tell about myself, write about treatment attempts. Create a new topic? Or should all this be written in separate topics?

 

[BlueBells]

@Olesia
Well, I'm not too sure myself. I have started a couple, but they were specific, one subject. But, quite often the thread drifts into other areas.

Maybe separate topics, see which forum might suit best, then if no threads seem just what you want to talk about, start a new thread.

We are all over the place, I'm in Victoria Australia, and it is 4:30 in the afternoon here. @Auriel is one from UK, quite a few from USA, and @MissNeverWell is Canadian, so time zones mean people are on at all different times of the day.

I'm sorry I am not more helpful. I get a bit lost on here myself at times. No one gets upset anyway, we all know we have our own struggles.

 

[Olesia]

Yes, I understand that there is a difference in time zones. I just write and hope that people will read the message at their convenience.

 

[Badger]

Hi @Olesia welcome to the forum, I am sorry to hear how people with disabilities are treated in your country. For people with Fibromyalgia there can be a fear of complaining in case people react negatively. It can be frustrating for family and friends who do not always have the patience. My mother, sister (both passed away a few years ago) supported me and brother continues to support me. A couple of friends have also stood by me and we socialise when they have time. Here in the U.K. (Wales) suffers being treated poorly by doctors and the benefit system seems to be a common story. We have to fight to be heard and understood. This is difficult with stress and brain fog on top of the pain and fatigue. Occasionally there are doctors and other health professionals who are supportive. It's important for us to be clear with health services and the benefit system how Fibromyalgia affects our lives. Self care is vital and speaking to other sufferers helps as it's different when speaking to people who understand how it feels. I wish you well and hope that you take care of yourself.

 

[sunkacola]

Thanks for the contacts of people on the forum. I need your advice. Where can I post my story, tell about myself, write about treatment attempts. Create a new topic? Or should all this be written in separate topics?

Hi Olesia, welcome to the forum. If I were to delete your first post, it would delete this entire thread, because that is how the program works. So I suggest we just leave it as it is....there's no harm in that. You are posting just fine now, so no worries.

As for where to post your stories, there are different categories and you can choose one that seems appropriate. But this forum is not strict about that and you won't ever be criticized because of where you put your post, so just post wherever you wish to. People will read what you post and respond. If you need assistance from one of the moderators for any reason, send one of us a private message. (Just to note: JayCS is not a moderator).

 

[BlueBells]

@sunkacola

(Just to note: JayCS is not a moderator).

Oh, I wasn't meaning to imply that he is, but @JayCS is a very knowledgeable and helpful member, just like @Auriel , @SBee and so very many others. More knowledgeable than I am, is what I meant.

 

[Auriel]

Thank you for noticing the mistake and telling me. Can the message be read in English now?

Yes, completely understood now (it would be cool if we had a translate button like they have in youtube comments sections) in answering the question of family support, NO, I come from a narcissistic/extremely toxic family (I'm no contact now) who (minus late grandmother) have never been supported through anything, (quite the opposite severe empathy depletetion in my family) I do have some support in friendships though, but as for issues with activities from fibro I'd say the housework is a tough one for me, cancelling appointments (which I hate having to do) and having to cancel social event's (or anything social is a problem) I love the Russian accents, ps welcome to our forum (i hope you'll be happy here)

 

[Auriel]

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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