[Wants2Fly]

I left my description of what it was like for me to evacuate New Orleans in Creative Corner. It's pretty long, a little essay.

As I was falling asleep in the shelter, after 24 hours on the road in my car, I was so fatigued, I remember thinking as I fell asleep -- So this is what a lupus flare feels like. The shape and dimensions of the fatigue are heavier, more encompassing, I think than my normal level of fatigue and depression.

After I got to Austin, after another 9 hour drive, I spent most of the next 24 hours holed up in a motel, sleeping, resting. And as late as Sunday, I had a day when I pretty much did nothing.

Upon arriving back in New Orleans, I feel totally hopeless, helpless. So down I wonder how I will ever stand up again. Breathing takes too much effort. Had a med check today. Upping the Effexor and swapping out one other sleep med for something similar but will help with joint pain, but keeping everything else pretty much the same bec. he doesn't want to change too much all at once.

I think I have a cold or my allergies are acting up.

I stopped going to the class in renovation that I started with so much hope earlier in September. There's a Restoration meet and greet in about an hour, but I don't know if I can drag myself to it.

Haven't taken a shower in 2 days, and all my bags and boxes are unpacked, all over the floor.

Hopeless, helpless.

[SS8282]

(((((((((((((((Wants)))))))))))))) I'm sorry. I hope things will get better. I know what it can be like. My family and I were evacuated years ago, due to a chemical spill from a train.

I hope you'll feel better soon. Big hugs.

[partlycloudy]

Wants, I'm in Florida on the central gulf coast and I was thoroughly exhausted and wrung out after the third storm approach and miss. For Ivan we boarded up the windows and made preparations to go to Orlando to hide out. The waiting and waiting and worrying was excrutiating, and I stil haven't recovered.

I saw my T not long afterwards the last scare and she said that ALL of her clients had been badly affected by this year's storm after storm after storm. It upset me to see the general population so strung out - 4 hour lines at Home Depot for plywood; people lining up to fill their cars' tanks, runs to the robot banks for cash in case the electricity went.... the anxiety was palpable, contagious, and utterly frightening.

It sent me into a tailspin of depression - I too am on effexor and for the past 10 months it has been a very good med for me. Now my anxiety has ramped up and about 1/3 of my day is spent in one long panic attack. The toll on our emotional health is severe - imagine if our homes had been hit by the storms?

I wish you a quick recovery and peace.

pc

[Wants2Fly]

Thanks from the report from your part of the world, PartlyCloudy. There is some cold comfort in knowing I'm not alone in my responses to this evac. And coming on top of the all the other things that made my life topsy-turvy, unsettled and unsettling in the past year, can't be good.

New Orleans was flooded with Florida refugess on Labor Day weekend -- don't remember which 'cane was enroute at that time. I met a Florida Panhandle evacuee in Austin. She said she was ready to leave after 2 years. We're gettin too old to have to pick up and pack, load and unload - and what will happen in not so many years when we are less able than we are now? Austin is oppressively hot -- so she was pondering, which is worst? Earthquakes in Calif, where she'd lived for many years; storms in Fl, or the heat of Texas. I also learned that the temps go down to the 40s in winter. I haven't spent a cold winter in a long time. Made me start thinking about going back to Florida and accepting that my life situation means that I have to live in a dinky apartment instead of a nice home of my own. Somehow it's easier to accept my straightened circumstances in a place where I don't have it constantly in my face that my life used to be different -- more materially comfortable.

I didn't make it to the meet and greet. Took a shower -- and a benydryl -- and my sleep meds very early -- and still couldn't get to sleep til after 3:30 a.m. I hate this restlessness in the night.

Thanks, all, for the words of comfort. It helps.

[(JD)]

(((Wants2fly)))) and (((partly))too!

I am in South Fl and know just what both of you mean! It's bordering on a new disorder: Hurricane Fatigue Disorder! And right now I'm staring down Jeanne!

I understand flares too. I often get pain/fatigue flares from my myelopathy etc... often... a few a month! It makes me very hesitant to agree to do anything, since a promise is a promise to me, and NO ONE understands unless they have the same dilemmas!

I evacuated for Ivan, then had to hurry back to keep from getting slammed from him up north! And I have not recovered yet. I am alone, cept for my service dog who is more of a companion now because of his age...

When I ended up "north" (of FL) for Ivan, I was soooo fatigued... and I had to tell family I couldnt' commit to the next day (they had all this stuff planned to do..) by noon the next day I finally managed to call them from the hotel and say no way... the next day after, again about noon, I called and spent some time with them... each one, many times, asked me, so what did you do all day yesterday? You spent the whole day in the hotel room, what did you do? How did you spend the whole day in the room? arrrrggggghhhh!!1 They will never understand... they won't understand about running from hurricanes and they won't understand pain/flare limitations. oh well. ;(

[Wants2Fly]

Skybark -- Thank you for the comfort of your message about flares. I was only diagnosed last year, so I am just starting to understand the disease. It is helpful to learn how others are affected and how they cope.

[Maya]

Yes, hurricane fatigue syndrome is the very proper term for it. I also am in Florida, central Gulf coast - tired of no power, piles of debris all over the road, hurricane after hurricane...I can't wait until it is all over. We are so stressed, so tired, so cranky from the pressure. And I have rheumatoid arthritis so I, too, know about flares that are aggravated by stress and air pressure. Keep your hats on for this one - it is going to be another bad one. Stay safe, keep your head down, and maintain your own inner core of self.

[Wants2Fly]

What "inner core of self"?

[(JD)]

<font color="blue"> ((((((want2fly)))) that little voice inside that says "I really don't have the energy to go to that meet and greet." and the same voice that says, "I need support, I will post at psychcentral."

No one understands how you feel except you, at the time you're feeling it! You must learn to say no to others. It's for self preservation. You will find out who you're real friends are. I didn't have any, as it turns out.

It's a little voice that will help you decide trade-offs. When you want to do something, and aren't sure you can, you decide what you will lose, give up, or how long you will be "crapped out" (nuclear term) AFTERWARDS if you do it. We pay for what we do: pain and fatigue. We pay for what we don't do: depression.

[Wants2Fly]

Skybark -- I am interested in what you said about finding out who our real friends are. I'm not sure that I have any either. People were kind when my life fell apart 18 months ago. But I haven't put my life "back together" & I don't know that I ever can. I don't think people really understand about coping with a disease such as lupus because I don't "look sick." And depression is so stigmatized and misunderstood and labeled being "moody" and refusing to help oneself. So all in all, I'm not sure that I have any real friends.

I recently was very hurt by something that happened between a friend and I. I have known this woman (let's call her Jay) for 30 years. About 6-8 months ago, Jay had to take in a friend who had a seizure while driving, had to give up her law practice, and they are trying to find the right medications to help her -- but the meds completely knock her out. She has boyfriend who loves her in Manhattan, but for some reason she is reluctant to give up her life outside of Bosston to marry him. This a childhood friend of Jay.

Jay went through a divorce, has 4 grown kids, and is now getting ready to sell a too-large house. She said, well, my friend has to decide soon whether to marry or whether we should buy a house together. So I said, Well, if I you decide to do that, can I buy into the house, too?

She just laughed it off and said, oh you know, I don't really want to live anyone anymore. I'd rather be off on my own. And she went on and on about how she doesn't really want to buy this house with her other friend. It was such a complete brush-off. And now I don't want to call her. She sends emails, and I reply, but I am very, very hurt that she would contemplate buying a house with other friend but I'm not "good enough."

I don't have so many friends that I can afford to cut myself off -- and I've cut myself from one other female friend who wrote me a critical letter about how I could have kept my home in Florida if I had wanted to -- setting herself up as complete judge of my legal, economic, and emotional state. Because she didn't want to rent a room to me -- and she lives alone in a 4 bedroom home with a split floor plan, where we'd basically just bump into each other in the kitchen. I tried to tell her how I felt, but my voice was very angry -- it wasn't the way I wanted to do it, but my anger was so high, it came out all wrong despite my good intentions to be calm, and she said, "I don't have to listen to this," so I said "Just don't contact me anymore." And we hung up on each othe. And that's it. All contact cut off.

My aunt has a spare bedroom, and let me stay there 10 days. But she won't offer me that room to get back on my feet.

I feel so completely, completely alone.