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wow
04-01-2011, 01:02 PM
Despite the pain, heart, lung problems and all that jaz, for me it is the isolation. I eventually ended up a prisoner in my own body. Friends and activities are all gone.

Yep, for me the worst symptom of Lupus, sjogrens and fibromyalgia is the isolation. How about you?

adl011
04-01-2011, 01:28 PM
For me at the moment, its having to ask for help taking care of my 7 month old son bc I'm in so much pain, that at times his weight is excruciatingly painful for me to pick up. Especially since he likes to jump around in my arms. It's so hard to say "I can't" when it comes to my own child. So the pain and muscle weakness make this the worst thing for me. I've gotten use to the isolation. My husband is a bit of a hermit anyway at times, so that helps. Nice thread idea, by the way!

tgal
04-01-2011, 02:47 PM
I have two things that are tied for the worst for me.

1. The isolation. I live in Texas so sun and heat are almost constant. The days of going with friends to the lake are over for me since I have become so sensitive to the sun and the heat. With summer coming on it is going to be even worse. Last summer was like this but I believed then that this would be fixed and I would be well "any day now". This year I am much more accepting of my situation so I know that I live by a new normal.

2. The toll that this has taken on my brain. All the things that I (wrongly) thought made me who I am are gone. Everything from my memory to my IQ scores have plummeted. I am having to learn who this new Mari is because this new brain has made me a different person then the one I have lived with for 42 years. I have to say that some of the changes are for the good but they are just different and at times I feel like I am living in the body of a stranger.

Nonna
04-01-2011, 04:02 PM
i'm starting to feel isolated from my family. It's no Mom you can do that anymore. You'll have to stay home. i'm so tired of this.

But mari is right it's something we have to learn to live with.

craftkeeper
04-01-2011, 05:43 PM
Only being dx in Feb, I really didn't realize what a life style change and how hard this would be. It seems like one day i started to feel bad and ache and the next thing i knew i was down..

I have alway been a outdoors person. Now i am so sun sensitive i can't hardly make it to my car and back for the pain in my eyes. Even the lights at the Grocery store made me sick today..The hardest thing is trying to explain to my nine year old and my two grandchildren why i dont feel like playing with them. And Nonna like you i am already tired of being told i can't join everybody or do the things i alway have. It's so hard. I dont know if i've been in denial or if it just finally hit me that i really do have Lupus,but i finally cried. I thought the Fibro, connective tissue and thyroid were bad, but this is a whole new ballgame. There's just no way to make other people understand how we feel.

steve.b
04-01-2011, 06:48 PM
again mari and i think alike.

western australia is known for its outdoor activities. i used to enjoy lots of them. i now watch my teanagers enjoying. isolation plus!!!!

personally i hate the brain drain. it has caused me to give up work. and most other things to. i still try to use my brain, but it fails me.

kim,l
04-02-2011, 12:26 AM
yes i know how you feel about isolation i used to play bingo and go to raffles now i cannot concentrate my reflexes are not good my eyesight sucks and the fatigue makes it hard i spend most of my time at home or doctors shopping is drama such is my new life

Peridot20_Gem
04-02-2011, 08:04 AM
We all seem to be more or less living the same, i've isolated myself to the home as the sjogren's as caused me to be that much tied and in constant pain, it's to much to try and do long distance walks anymore and your brains never with it, it's like your losing the plot half the time.

What really annoys me is the lack of energy, i've only just gone to pull the wrought iron gate to and christ it was way to much and i stood there so flustrated, go back 3yrs i'd have thought nothing of it.

This threads excellent for letting out the main points of what it does to we all and what it causes we.

Thanks wow xxx

lacey50
04-02-2011, 11:12 AM
There is NO one thing about AI's that can be called the worse thing, the whole thing sucks. I HATE it, but I will go on, for that is what we do.

rob
04-02-2011, 11:29 AM
Despite the pain, heart, lung problems and all that jaz, for me it is the isolation. I eventually ended up a prisoner in my own body. Friends and activities are all gone.

Yep, for me the worst symptom of Lupus, sjogrens and fibromyalgia is the isolation. How about you?

Hi Wow, and welcome to WHL,

My very first post here was all about isolation, and how I needed help and advice to overcome it. For me, the worst thing about being diagnosed with SLE was the loss. I was doing my dream job, had a girlfriend of six years that I was about to marry, and I had friends, or at least I thought I did. After the diagnosis I had no support system, nobody to talk to-not even family, and in the matter of a couple of months, my business, wife to be, and friends, were all gone.

The sense of loss was so profoundly devastating, and I was so alone, that I attempted to end it all, and damn near did. I overdosed on alprazolam and alcohol, and when that wasn't working fast enough, I got in my car, and turned into the path of the first big truck that came along. It took the better part of a year to recover from what I had done to myself, and to others.

I decided to start over. I moved from Arizona back to Maine, where I grew up, and where my family lives. I mended fences with my family, got myself a nice little place with an ocean view, and met a lady who is the definition of class. I have new friends, new love of people and life, and new interests and pursuits that better fit my "Lupus Lifestyle". Other than the fact that I have both SLE and MS, my life is better now than it ever was before my diagnosis. If it were not for Lupus, I would not have the absolutley great life I now have.

When I first joined WHL I lived in such self-imposed isolation that I wouldn't answer the phone, the door, or even talk online to anyone. And now look at me, I'm a moderator here with thousands of posts-go figure.

It's funny how life works.

Rob

magistramarla
04-02-2011, 09:37 PM
Everyone,
The worst thing about AI diseases for me is the frustration when my body just won't allow me to do the things that I so much want to do. I want to walk on the beach, dance with my husband, travel, do things with my friends, children, grandchildren, etc. I push through the pain and do most of those things anyway, but it is so frustrating to not be able to move around easily.I really feel frustrated when I see women ten years older than I am who can move around so much easier than I can.
Hugs,
Marla

Peridot20_Gem
04-04-2011, 09:17 AM
Hi Wow, and welcome to WHL,

My very first post here was all about isolation, and how I needed help and advice to overcome it. For me, the worst thing about being diagnosed with SLE was the loss. I was doing my dream job, had a girlfriend of six years that I was about to marry, and I had friends, or at least I thought I did. After the diagnosis I had no support system, nobody to talk to-not even family, and in the matter of a couple of months, my business, wife to be, and friends, were all gone.

The sense of loss was so profoundly devastating, and I was so alone, that I attempted to end it all, and damn near did. I overdosed on alprazolam and alcohol, and when that wasn't working fast enough, I got in my car, and turned into the path of the first big truck that came along. It took the better part of a year to recover from what I had done to myself, and to others.

I decided to start over. I moved from Arizona back to Maine, where I grew up, and where my family lives. I mended fences with my family, got myself a nice little place with an ocean view, and met a lady who is the definition of class. I have new friends, new love of people and life, and new interests and pursuits that better fit my "Lupus Lifestyle". Other than the fact that I have both SLE and MS, my life is better now than it ever was before my diagnosis. If it were not for Lupus, I would not have the absolutley great life I now have.

When I first joined WHL I lived in such self-imposed isolation that I wouldn't answer the phone, the door, or even talk online to anyone. And now look at me, I'm a moderator here with thousands of posts-go figure.

It's funny how life works.

RobRob,

Thank you so much mate for explaining how your life changed for the better and you sound so happy when presenting your story it was lovely to read mate and i wish you all the best with your future.

Terri x