Have you become a recluse?

Since being diagnosed in 2007, I have found myself slowly becoming a recluse. Not that I really hung out much previously but it just seems to take so much more of an effort to really do anything but relax and rest on weekends.

I missed my brother-in-laws wedding -- could not commit to a date 3 months down the road because I didn't know how I would be feeling that day. I missed the wedding but caught the video.

Was great his wife understood because she has Lupus and knows all to well about good days and bad days.

Does that happen to anyone else? Do you not accept invitations far in advance because you don't know how you will feel that day?

Edited May 18, 2009 at 2:44 pm

Report post

34 replies. Join the discussion

http://www.inspire.com/carosu/journal/lack-of-social-interest-sarcoid-sympt om/

http://www.sciencedaily.com/releases/2009/02/090217173034.htm

Hi, You are not alone! Here's a link to a whole discussion earlier this year on the same topic.
There's also a link to a study a member posted on inflammation and lack of social interest.

It is so hard to plan even a day ahead when you don't know how you'll feel.
It's become "learn to enjoy the moment- and not plan ahead" for me. :)

Take care!

Report post

Thanks for the reply. At first I use to feel bad about not getting out but like you it has become a way of life for me. Just glad I made my home a comfortable one that I don't mind being at home.

I will definitely check out those links.

Thanks a million.

Davina

Report post

Wait a minute, I remember this one.
"Have you become a recluse?"
Said the spider to the fly.

A brown recluse?
I hope not.
I have enough problem scratching the bumps on my 2 legs. What would it be like with 8? Forget about it.

I started out a recluse.
Never been a 'joiner'.
No team sports.
No clubs.
Except for my college drinking team in the Wild Horse Saloon club.
Does that count?

Where was I?

Oh yeah.
Don't worry, if you don't show up for enough invites, they will quit showing up in the mail. Problem solved.

Party on
ot
aka lonely boy

Report post

Okie Tokie I can always count on you to make me smile....love the way you write.

Hum, guess I would rather be a brown recluse than a black widow, lol. Even though I am scarred to death of spiders.

ROCK ON!!!

Report post

I wouldnt call myself a recluse just yet, but, I think I'm approaching that genre.
I love to socialize. I was never a party animal but, love being with friends and family.
BUT NOW,
It takes soooo much effort to get up and get out...just the preparation to get to these events is becoming too much... by the time I'm ready, the only place I want to go is...come on, say it with me....
BACK TO BED!!!!

Report post

You aren't alone...I don't go anywhere anymore. I imagine my husband keeps thinking he never wanted to be a taxi. Weeellll...you win some and you loose some. He is my taxi...lol. Hey that's another reason I haven't been doing my hair...lol....already KNOW I AIN"T going nowhere!!!!! LOL...plus I am 5'10...it takes too much to reach up there.....wigs have become my friend.

Report post

LOL wigs are my friend too, lol.

Report post

What I do wish is that my family and friends could be a bit more understanding about sarc...there's so much I don't understand and it's so frustrating. I'm in such a crabby mood right now...I don't feel good. I woke up and felt fine, then by 3 pm I felt like crap and canceled plans with a friend. This has happened before, as we all know this happens. Her boyfriend texted me and said she was sooooooooooooo upset, add insult to injury. If I KNEW how to feel better, I WOULD DO IT! Right now I'm just seeing it all as selfish and I don't want to make any plans anymore. Now ask me tomorrow and I might say something different because I might be feeling better...I don't know. If this keeps up with this one friend, she can hit the road! I'm so pissed!!!!!

Report post

Blkjewelz8960,

I have been sick for over a year now. Yes I have become a recluse as well. I have a high profile job in a small County. I appreciate everyones support and prayers. It's hard for me to go into town just to get my prescriptions filled and run into people. I don't like to make plans anymore because I just don't know how I'll feel tomorrow.

What really sucks is that I have always been a very social person. So when I am feeling alright, which is rare, I want to socialize and I already turned down the invites. Like OkieTokie said, if you turn down enough, they stop asking.

I wish that we all lived closer so that we could all get together and socialize as fellow Sarcies... :)

Take care.

Report post

Shadow, if you lived in VA I would ask you if we have the same friend, lol. You need to give that friend The Spoon Theory and then perhaps she will understand.

Report post

Chief-2101,

Wouldn't that be GREAT if we all lived close because if we made plans and we didn't show up no one would be mad because we would just say 'oh she/he must not feel well today' and just call later to see how the others are doing. We would be more understanding of each other's needs and limitations.

Shadow:

Forgot to mention, by 3 I am ready for a nap, lol. But I guess it is because I get up so early even on the weekends. I tell people I am an early riser (5 or 6 a.m.) on the weekends and you best make plans with me early because whatever it is if it doesn't get done by noon, it won't get done. Between 1 and 3 I am going to take a nap.

Report post

My daughter lives 2 hours away. She and my 2 precious granddaughters were in town to visit us and the other " grands", and I came down with a strep throat infection. Fever, aches, hadn't been on antibiotics for 24 hrs. when they got here, so I called her and gave her the option of coming over and using good handwashing/gel and hoping for the best. She didn't come over, and didn't speak to me for 2 weeks.
They don't get it. Never will. I havecome to accept it.

Report post

Oh, yea....I was supposed to go to a bridal shower Sat and by the time I had my shower and TRIED to do my hair, I was to pooped to go....my husband took the gift over there.
I used to be very social and loved to entertain and now I just say to myself, I hope no one comes over. Just making small talk is not for me.

Report post

Hey Blkjewelz! I am on the same page with you on this topic. I have become a recluse. I've missed so many partys and missed events, that I am hardly even asked to attend anymore. I think the "others" don't really grasp how one day you can be ok, but the next you feel really bad. Nor do they understand how you feel having to miss events that you had every intention of attending. I feel horrible that my kids don't want to even ask me to go anywhere because they can see the pain on my face. They no that I will insist that we go, when I can, and I will be in the bed for three days after. I can't go out at night at all because for some reason, night air makes me cough. I live in New Orleans, so the heat and humidity during the day is unbearable. On Ozone Action days, I can't leave my home without my oxygen concentrator. Ultimately, you have to do what is best for your health. I want to buy tickets for an evening concert during the Essence Festival, but I don't want to waste any money on a ticket I may not use.

Report post

LisaLee I know what you mean, I don't even make plans just spontaneous now. I go places when I feel I have enough energy to go. I tell my friends maybe but don't commit because I don't know how I will feel. I try to rest up thinking if I rest I can go.....yeah right, lol. Just too much effort to go anywhere.

Was suppose to go to a comedy show the other night. My friend called to ask what happened thought you were going to be here. The closer it got to time I just didn't feel up to it. There will be other shows.

One friend wanted me to go to Cancun, Pulmonary said no way because TB is too prevalent there. She got upset it was her 50th birthday -- not going anywhere that is detrimental to my health. She got over that. But then I didn't go over her house for a dinner party she had, she just didn't understand.

In a way, it is good that the man in my life also has Sarc because we make allowances for each other. Once we went to the movies and both ended up sleeping through the movie, lol. We go to the early shows now, lol.

Report post

blkjewekz..u crack me up!..I did talk to my friend today and she apologized...when she asked me if I was feeling better first, I thought " Hell if I walk on eggshells for you, I'm spending my energy on something productive!"..so tired of wondering if people are frustrated or mad..excellent idea about the spoon theory...but today she is understanding...this disease can really tests the boundaries of friendships!..take care to all of you and always praying 4 us..shadowtoonces

And I loved your theory about all of us living closer so that when plans are cancelled, we all understand...makes me wonder..would any of us ever hang out???..our cell phone bills would be out of this world..."Want to do something tonight?'.."Sure."-----4 hours later..."Hi, it's me, feel like crap, want to do something tomorrow?'..."Sure".---Next day the other is calling "Can't make it, want to do something tomorrow?".."Sure"....you get where I'm going with this!!

Report post

i too am becoming a recluse. It is so much easier not to make the effort to go out. I did not have a fantastic social life in the last few years but since getting this awful disease I am at home most of the time. I also don't like going out because I feel fat, look fat and have such a moon face now, I feel like a hamster. My husband tries to encourage me to go out but then will give me a choice either to go out or stay in, guess what I choose.... to stay in. I used to love going shopping and walking round towns etc but now I don't, because I live on benefits there is no money to spend on extras and so why bother to look?
I don't really need anything it would just be nice to have the choice. Boy do I sound negative today. Really it is not that bad. I just wish I could shift some weight and not feel soooooo fat. Love jane

Report post

yes. only people around my neighborhood that is home all day are old and sickly so i can talk to them but it isn't the same.
people around here that is my age talk about work and they don't want to hear about drs, appts, how you feel, etc.
i joined some groups at www.meetup.com so i could get out of the house and meet different people and do different things. they would shudder and give me ugly looks from my chronic coughing and would tell me over and over i should see a dr and ony 1 out of some 200+ that i met would listen to why i coughed. so i quit the groups and stay home, alone, bored, depressed from being alone or doing things alone except when hubby has time.
i am glad my cough has slowed down a lot but it isn't gone and i don't think it will go away.
take care
gn

Report post

I actually started seeing a psych because my world had become so small. I no longer kept the house up or wanted to do the things I loved. A few months in and I got my diagnosis.
I love the spoon theory. My kids are losing out and I feel really bad about that. Tried to go walking by the lake Sunday and barely made it a few minutes.
Finally I accepted rx pain meds so I can do what I MUST...I hated the thought of using them but I had been missing school conferences (sending hubby) and important things.
If it hadn't been for bed rest and oxycodone I wouldn't have made it to my youngest daughter's middle school sneak peek last night. With a 10, 11 and 12 year old plus having inherited my 16 year old neice (brother brain cancer) I always feel guilty. My oldest is in another town for college and I don't see her much.
My husband has a very important work gig and thankfully it's within driving distance (no airports)...but I am taking my oldest son to fill in with
dad because I know I can't do all the outings, etc. plus I have to get liver biopsy 48 hourts before we will leave. If I show up and shake hands it will be a wonder.
Oh yeah, gave up a free trip to Cancun (heat-terrible) and went to Hawaii and was so sick and miserable...I used to live for snorkeling and the beaches. Moved to Florida for cheap cruises and sun...irony. Took us years to get my husband a good job back in the Northwest where it's at least cooler....as I experience a hot flash in 58 degrees...
I am not my old self. I don't apologize to anyone but family for missing things. I am truly sorry to those I disappoint but must say "No". It's a hard word for most women to learn!

Report post

Oh yes, and while at podiatrist the other day I looked down at my scabby, swollen cankles and asked out loud "Whose body IS this?" It is dismay I feel when I look in the mirror or see a picture.
45 pounds of sedentary weight (I can't blame mine on pred...just eating for solace, lots of junk) doesn't help. I've spent weeks dreading trying to figure out what to do for clothes for this stupid thing. Can't show the legs, they terrify people...yet can't button any pants over my fat gut and butt...MUU MUU's are sounding really good about now!
Let's start a design business with our social club!
All elastic waists and lightweight cottons with enough poly to hold colors since we have to change clothes several times a day. No buttons, zippers, or hooks for when our hands don't want to behave...
I live in pj's and even am getting my oh-so-attractive ankle braces made in leather with velcro so I don't have to deal with laces...the nylon ones make my legs itch more...
I should just put on ankle braces with my thong slippers and a muu muu to go downstairs to the dinners at the hotel with hubby...how do you spell divorce:) What a picture I have in my head....uggghh.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders