Lac of support from some friends and family to members

Posted , 3 users are following.

I am amazed at how your nearest and dearest can be so distant when you are so needy. I have experienced total rejection when those nearest to me refuse to understand why I talked about my illness (RA Pallindromic) almost every joint in my body flaring up! One needs to talk, research, understand !But yet no one wants to talk, help or share issues that are effecting us . I have been rejected because I want to talk/understand my illness. A relative, a health care worker who I stopped calling as things were bad kept calling and asking me how I was . When I told them facts I was told off and informed "it was not all about me". Well sorry if you don't want the answer, don't ask the question !

Well it is a lonely business, great to have you guys on board Jxx 😊

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5 Replies

  • Posted

    Hi Julie! Thats why we are all here. I was talking to my thereapist today (a total luxury, i know) and we were talking about how people Iove to talk about themselves! Its like no one listens anymore! Why? Especially when we are actually ill and need to be heard..craziness right? I'm so sorry its just not fair and simply not right, so you go ahead and vent because I get it. The level of selfish behavior Ive experienced has been unsurpassed by anything else in my life. Please feel free to vent and express yourself, THIS is the forum. We (us chronically ill peeps) have to stick together right!?!! Bring it on girl. I have Lupus SLE BTW. Best regards , Sunny 

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  • Posted

    Hello Julie! Thank you! Today is a great day. I bounce back in about 24-36 hours with just a nagging headache but heck I will take that over all the other lovely stuff that comes with Lupus! How are you today? Feeling any better? I hope so :0) milk the good moments and endure the bad. I find that funny movies or Netflix series get my mind off my troubles so to speak. Im here's if you need to vent,  its not a problem and would be a privilege. Best wishes for an awesome day.  Sunny

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    • Posted

      Hi Sunny

      Glad to hear things have been good. Yes we watch TV and records series so you can watch many together.

      The unmentionable illness reared its ugly head while I was sitting in a very smart venue, waiting for my glass of wine this evening . My hands had been great for two months; other joints were playing up mind you! As I sat there my middle finger and ligaments swelled painfully. The drink arrived as I sipped it the swelling got worse then disappeared. The nature of (Pallindromic RA). Funny really like being in a Hulk or Jekle and Hyde movie!

      Can't sleep as terrible stomach acid due to taking turmeric for several days and it is irritating my IB'S and making my asthma worse. Going to stop tumeric as interfering with other meds.

      Upset about hands as that is where illness started a year ago.thought things were improving but just going around my whole body again.

      Had my nails done with a French manicure with tiny diamonds on the ring fingers, so at least your hands look nice even if you can't get your rings on, small things a!!

      Meds are working for stomach going to try to sleep as 4 am.

      All the best -thanks!

      Julie x

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  • Posted

    Hi Julie! Im sorry. You had a flare up. Its just gonna happen, thats how it works or doesnt work lol. WE just have to get through those times and know and relish in the fact we CAN and WILL have pleasant times, pain free. Its a delicate balance and I always tell my daughter that you never learn anything when the road is paved with gold and everything is perfect. I hold on to that when Im struggling and its not easy but it helps. I wish you a lovely (pain free day). Best REgards! Sunny
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