Since diagnosed with lupus sle 3 years ago, I stopped traveling and limited activities. But, my dad was in hospital for 2 weeks for artery surgery and had to fly to CA to seeing him. Stress and anxiety for buying tickets, hotel, car rental and babysitter my older sister who didn't wanted to do anything, didn't want to drive, didn't help my dad....I ended up got too much on my hands.
Got home for a month now, but flares still now, rash on my hands and fingers from carried luggage, rash on my neck and scalp. Sadly, my sister who had no support and shellfish really gets on my nerve.
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kimc
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Thanks babssara! I am getting some rest now, it's just need to take time to get over with the flares and sister doesn't know or not care.
It made me feel, no one would understand and give me any support when I really needed. For the whole trip, she didn't do anything to help me, instead she wasn't happy so much because I didn't take her to get some massages and have her permanent make up done, that she mentioned to me one day before the trip was over.
For my own shake, I just let it out of my chest and resting.
self centred family members do not go well with SLE.
I've made one of my family members a complete no go zone since a recent nasty flare.
Ok. Massive winge warning:
I'm from Australia - and for some reason my family seems to think I would be the best candidate to drive a mildly unwell aunt (who could comfortably catch a train) - on a 600km round trip for a hospital scan. (Oh ! Add 200km on top of that to get to my aunt in the first place) I am currently battling the tail end of a serious kidney flare and have a chronic balance condition made worse by driving.
There are 4 perfectly healthy adults in the family who live in the same town as my aunt who could do the job without blinking - and at the very centre of them is one very athletic and obscenely healthy, obscenely self centred sister.
I don't understand why they don't understand ?
I really feel like I'm in hell !
I'm surrounded by moral imbeciles ?!?!?
Perhaps if I told them I had tumors on both kidneys instead of Lupus they might actually get it ?
I feel your pain.
No matter how aware you are of your families empathy limitations, it always hurts every time they don't make the effort to 'get it'.
I'm currently spending way too much time bitterly ruminating over them when I should be concentrating on my health.
It sucks bad.
Hard enough just being sick.
x.
ps. It might have been nice if 'said aunt' had rang me 'ONCE' during my 9 month battle to keep my kidneys in one piece.
What is wrong with these people !
"REALLY"
Blah !
(now imagine me twirling around on the floor like a toddler having a tantrum)
I feel sorry for you too. It isn't that we don't focus about ourselves, it just because they made us feel like they don't care and their selfishness makes us feel we are lonely in our lives...like you deal with your own problems and we know you can do it.
Yes, we're toddler role dow on the floor and getting tantrum sometimes because they just pushing us. Would they ever ask are you okay? Would be nice, right.
I'm sorry about your 9 months kidneys, and hope you get better everyday.
Thanks for letting me know I am not alone here. Good day.
Thank you for asking after my health. I'm so used to people not asking - so it was lovely to hear that from you.
Although it was very serious at first,
I am getting a lot better now. Will probably manage to keep my kidneys for a good while yet.
I hope you are getting the rest and recovery you need to keep yourself healthy.
Its really difficult when you're ill and through no fault of your own - ' just from bad luck ' happen to end up coming from a family that isn't capable of proper care and empathy. It makes you feel gapingly alone and traumatised, when the illness alone is enough by itself to cope with.
Its obvious just from reading you're post that you are a caring person and deserve better.
The trick is to work out who is deserving of your empathy and energy and perhaps be a bit brutal about conserving your time and energy with those who don't.
( I know, easier said than done)
I read a study about the psychological problems associated with lupus and appently lack of concern from families rates as a major problem generally. We are really not alone with this !
Unfortunately the study didn't offer a reason for this.
Possibly its because of the chronic and invisible nature of the illness.
a - " you've survived this before, you can survive it again " kind of attitude.
Its great to make contact with someone who suffers from a similar family (member).
Its hard for people with supportive families to comprehend what its like.
" Sending you a very large chunk of empathy from the other side of the globe "
If I live near you, I would take you for a ride here and there. Your sound a positive lady and you give me hope.
Tomorrow I turn 57, but I feel I'm a hundred because I can't do what I usually do before, I can't go out in the sun without cover myself from head to toes, the UVF really hurting me. I live close to the beach, but if I get walk on the beach or can look at sunset, it won't be so bad . I know things have to change, I still try to find my balance here.
I mean my brain is strong, but my body is fatigue so often. Body and brain are fighting in a battle to see who can win.
But, there many others have to suffering from somethings like your grandson and what your husband had to going through before he passed away. I know I'm not alone.
My sister had been that way since she was young, she's just been who she's. I should know that.
Anyway, you're a strong lady, you're my inspiration and you're the one makes me feel better today, thank you so much. Love!
I'm in Pinellas Park, I used to be out at Madeira Beach, John Pass. We're in FL, not UK.
Since I diagnosed to lupus, I feel the sun much hotter here than in San Jose CA. My grandpa lived until 94, my dad is 87 now. Someday I feel I only have 5 more years to live.
We have Earth Orgins and other health foods store around here, what is your store's name is?
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Flare from UV Lighting?
A & E visit 
Lupus? Rash/Pain Mystery/ Autoimmune?
Am I going Mad??
