ISOLATION

lupus2287 · Newbie Alert Joined: 27 Jul 2008 Posts: 2

I'm new to this board, but not new to Lupus. Am a survivor for over 20 years and have been fighting constantly for the past 16 years from one symptom to the other. Lately, the fight just seems to be getting harder and harder due to the constant confinement to my bed most weekends when the family is home. The rainy weather affects my joints and muscles to the point of extreme swelling (can't take diuretics due to the beta blocker am taking) can't hang out with the family like I use to.

Hence, am in a real foul mood and ready to just through in the towel. Reading used to be an enjoyable hobby but am suffering from attention deficit right now.

I have always been the party planner and now that am out of commission there hasn't been any. My house was the location for all social activities and I was the cook, the planner and hostess. Even though I have asked for someone else to carry on the tradition (just so I'll feel "alive") it's fallen on deaf ears - its been six years. Are people normally this insensitive. I've been ill all of my adult life so I do not know what's its like to be totally insensitive to someone else's need. I know these people love me but boy are they clueless - even though I have told them how I feel

Sorry for rambling, but am in my bedroom (ALONE) and just venting. My family are waiting patiently for my to drag out to the kitchen to prepare dinner (then a friend will call to find out what's to eat).

I have dreams about running away to small village in Austria and starting fresh. Does anyone else feel like this? or am I just going through a phase because of the long fight I've been having. (I've just gone through a really bad spell with myositis) Question

Oluwa · Posted: Sun Jul 27, 2008 2:59 pm Post subject:

Hi Lupus...

Let me give you a hug..squeeze. I get the foul mood...why not, it sucks having Lupus. Feeling alone in our carcass that we tote around. Its not wanting to do what we want it to..dang it all..g-r-r-r-rr

I don't think people are insensitive as a whole..they just don't understand our needs. Since we can't fulfill them, we want, and sometimes we expect them to. But quite honestly they never will. They are not us.

They may never understand how hard it is to have your hands raised at elbow height making meatballs can cause the muscles to fatigue...only if they could experience your life, our life for one day. But will one day do it. Like a forgotten cold I suspect.

Have a party, but have it catered. Is it the food that brings the joy or is it the people? Or make a salad, potato salad, coleslaw, beans (canned)...have a grill your own meat party. A BYOM... There are so many ways to make shortcuts.

There aren't too many people that like to do all the work that a party takes. It is hard work as you know. A task for only the special. You are one of the few special. I use to do it all too, when I was in Seattle and when my family is here, in SC visiting I try to do it all..but this last round of relatives, I didn't really lift a finger. Dined out, did take out....

I would let the dinner wait, I am assuming they are capable when Mum is not..No? I would pick at least two nights a week and call it Fend For Yourself Night. Or slap a baloney sandwich together...it doesn't have to be big, it doesn't have to be gourmet. I've just learned how to use a crock pot.

I feel like you, and I only have a husband. But I don't think it is the people, our loved ones that puts us in a foul mood, it is because we want so much for them, so much for us...well little for us, just enough to make it to the end of the day. And when we can't it hurts.

Pain makes us in a foul mood...wondering why they can't see we need help without us asking for it...

If I found your post earlier, I would have said..ask them to make dinner and that you would like to be served in bed with the remote or dial pizza delivery.

It is past dinner time here, our bellies are full..I hope yours is and you did have some help, or you got to stay in bed instead...

Vent...I call it telling my story...no apology needed here, because we get it...

Hugs. I hope tomorrow brings good things for you..
OLuwa

lupus2287 · Newbie Alert Joined: 27 Jul 2008 Posts: 2

Thanks Oluwa,

Today is a better day and I was really having a "why me crummy party", but as you know that is sooooo important for us to be able to vent a little and just move on the next day.

You understood fully what I was going thru. I made a light lunch/dinner and my husband made dessert and daughter cleaned up - so it worked out okay.

Am really happy to have found this site yesterday and will become a regular.

LOL

Oluwa · Posted: Mon Jul 28, 2008 6:12 pm Post subject:

Hi Lupus..I am glad you feel better today and too, I am glad you found us..

Pity Parties..oh, we have lots of them here and lots of people come...to help us through it. I've had a few myself without the frills...

Enjoy your sleep..sweet dreams.

Talk to you in the next light.
Hugs,
Oluwa