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Mostly Homebound People


kitshalleen

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dear homebounders,

that has a nice ring to it, doesn't it? anyway, i know that we all have varying degrees of dysautonomia. well i'm mostly homebound. i don't get that lonely usually because i'm too sick to want to talk to anyone. right now it's early morning, and i haven't seen the outside world in such a long time. my schedule is reversed so i generally sleep during the day and am up at night. yes, i'm like a bat or an owl.

i'm starting to feel like i'm not part of society though. well i guess that i'm not. i thought that it might be nice to talk to others in my situation. maybe have sort of an online support group.

to tell you more about me, i spend most of my time knitting. i'm in my 30s and i'm single. all of my friends have moved out of town, and well it's not easy to make new friends, when you are in my situation.

anyway, if anyone is interested in talking, let me know.

take care,

julie

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Julie, I am mostly home bound myself. I am married with two children but the only driving I do is to the bus stop and 2 days a week I drop my children off at school in the am one for Sax lessons and the other for Jazz band. on those two days I wake up at 6am and salt, hydrate and compress.

What has been hard for me is we moved 2 years ago- I have been really sick ever since and I really feel as though I have no girl friends.

I am 36 and can't even go to the grocery store myself (my mom takes me).

One goal I have is to try to join a Bible study at a nearby church. I can't really go to a regular service (noise and everything). I really hate attention and I have to say the this little church near where we live has really been good to us- sometimes they send home flowers after the service for me and a few people have just stopped in to visit. I feel very lucky though because some churches have agressive recruiters. our church has it's "quirky people" but mostly they are very caring and kind ( although no one really understands what is wrong with me!)

It is also hard to keep your friends when you don't drive and you moved an hr away so I feel your pain. Everyone else is busy and I am usually sleeping. I am making more of an effort to invite people to my house. I think it is important that you do maintain some social contacts with the "real world".

I also have gotten to care too much about how I look- I have lost a lot of hair and have very little muscle tone. I am trying to get over that- it just is harder when you are pale, and weak - but in your mind you are still playing tennis. :)

I wonder if you could meet people with your knitting. I get sad because I cannot do anything for others right now. it sounds like you have a talent that you could really use. I was a talented teacher (special ed) but I can't do any of that now.

Anyway good luck to you in your quest... I just want to encourage you to get out whenever you can. My mother accused me of hiding and she is right... I do feel like hiding. I don't want to explain my problems to any one and I don't want to have a flare when I am not at home. Right now I also have IBS problems so I don't want to go anywhere.

So sorry for the rambling but you are not alone in you isolation HAHA :D . kari

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Julie

Although I have pots I am not home bound, there are days when I can get out and be with others. When I am having a pots flare up, I'm so sick I don't want to see anyone. My question to you is would you want people to visit you at your home or would you just rather chat when you are up to it? I have recently met a woman in my area that is homebound and it seems like most days she isn't feeling well to visit. Could you please explain what you feel your needs are to the rest of us on this forum so that we could know what the best way to help those who are homebound? I'm sorry to read that your situation has gotten to the point of being homebound. I would like to be an encouragement to those in need, especially those who have the same disorder as me.

Maggie

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Hi Julie, I don't get out unless I have a dr's appointment. Church is out of the question for me now because of the noise & perfumes everyone wears. I don't really like people coming to my home unless they are fragrance free & I can't even get my family to leave that off so I can't expect others to. I spend my time trying to do basic household & cooking chores which takes me all day but I still never have the house clean enough that I want guests in. I don't have energy for hobbies now but I used to knit & crochet. I loved making afghans. I have gone from a social person to basically a recluse. I hate to admit it but I feel better when I'm alone because I don't have the stress of making small talk. You're still young so hopefully you will be better soon & get back to your life. Best wishes.

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Hi Julie,

I'm not 'homebound' but I'm certainly at home a lot. I try to get out four mornings a week for walks, and perhaps a short errand or two. Other than that, it's doctor's visits and the occasional lunch out with my boyfriend and perhaps a few friends. No dinner or evening socializing, because I am exhausted by around 4-5 pm. I'm on the opposite schedule you're on - I'm asleep by 7 or 7:30, and up around 5/6 am. I'm on the computer a lot, read, watch some tv and keep up with the laundry and some other light cleaning.

I think one of the more difficult aspects of this disease is how isolating it is. I no longer can work, and I don't get out to places where I would usually meet people - church, yoga/other gym classes, taking a class, etc. And you're all right...When I feel really sick, the last thing I want to do is be around people. It's exhausting. I try to write on the Forum and be supportive as much as possible.

A little about me: Previous anthropologist/archaeologist who worked for Indian tribe and then for the county (desk job); from Tucson, AZ; 47 with one son in CA; love to read and write; previously from Iowa; boyfriend is an English teacher at a local high school.

Cheers,

Jana

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Hi Julie,

I am 27 years old and I am also homebound except for medical appointments and small errands with my family. One way that I have maintained a feeling of being connected to others is by making friends on-line... it started because I was looking for people in Poland to practice Polish with, and I now have several friends from around the world, some of whom I am helping learn English. It works nice because I can interact with them on-line or write when I am feeling up to it. When I am not feeling well, I prefer to be alone because I don't have to worry about putting on an act for others or making the time they spend with me "worthwhile" by pretending that I am feeling up to having company. I think that someone suggested that you look into using your knitting as a way to volunteer to help others. Perhaps there is a program through a local chidren's hospital or cancer center or such that would be grateful for donations of knit blankets, scarves, or slippers. I also keep myself happy and motivated by using on-line study materials or items from the library to explore interests that I had in the past and never thought I'd get around to learning about. Hang in there honey and let those of us on the forum know how we can help support you.

~ Broken_Shell :)

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Great topic!

I am not homebound...but am home a lot as they say!! Sometimes I am just way too sick to even talk. I have two great kids. I can't imagine how lonely I would be without them. BUT I have friends that I talk with on the phone a lot!! I recently broke up withmy boyfriend...basically because I was so in love with him and he was still so confused on what he was doing with his life and how I fit in...and I do miss the company but honestly...I don't miss being made to feel less than...so I'll be a lone and find another way...you will too. Can you take any online classes? I am very goal oriented..thiks makes me feel like I am still accomplishing something.

Erika

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Hi Julie!

I am home most of the time. I don't work, but I do try to get out of the house a few times a week (or as my body lets me). It's been tough to maintain friendships, but there are those who have really stuck by me and I appreciate them so much, even if I don't get to see them very often. That's great that you knit! My sister (also a Julie) used to crochet hats for premature babies, so I know there are programs available if you want to do something like that. I need to find a hobby too! I mostly watch tv and spend time online (and sleep, of course), and right now I'm listening to my dog snore :) I don't know if you have any pets, but they can really help lift your spirits.

Sarah

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I've had POTS for over 6 yrs now and have stuggled with feeling isolated a lot. I found that there ARE things I can still do to feel like a contributing member of society even when I am feeling too bad to be social. Have you thought of joining a group that supports our troops? There are several online...I'm actually a part of Soldier's Angels. You "adopt" a soldier and send one letter a week and one care package a month throughout their deployment. It doesn't require a lot of energy or money!! I've also been growing and donating my hair to charities like Pantene's great lengths. Again, it's something that doesn't require any energy but helps someone else. It always makes me feel better to know that something I've done has impacted somone else in a positive way. :)

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Yup, I'm homebound also. My recliner and bed are my best friends :blink: I'm also a part of soldier's angels, however I've only done it once as I couldn't afford to send the care packages once a month and also can't do shopping for the items needed for care packages, but if you are well enough to do that, I'd recommend trying it.

Yes, I know the feeling of being too sick to really care about not having anyone to socialize with, but yet still wanting to be social... if that makes sense.

I do have a family which is a blessing but it's a toss up as to how it affects me socially. Husband has to do most social events alone, and doesn't always like that. Comments are made as to how much he misses out on activities with friends who are couples because of my health and things like weddings, he can't go to alone (feels weddings should be attended as a couple... I don't really care either) and so he skips them and then blames me for missing them (even though I told him he should just go on his own). SO it goes.

I would love to chat, however, since I'm homebound, I don't have much to talk about. My daily life consists of getting up, taking meds, trying to maintain the house somewhat... if I get the dishes done once a day, I feel I've had a good day; and trying to care for our 4 year old, but she has TV, the Wii, her computer, and movies that keep her busy and I'm too sick to play with her as I use all my energy just to make her breakfast, lunch, snacks, dinner, and also making sure she bathes, brushes her teeth, and other daily living needs. OF course the dogs need care also, and just getting to the door to let them out can be a challenge too. Otherwise, I don't have a social life and no job to talk about, etc So I'm a bit boring, but if you still want to chat, I'm here :)

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Hi Julie - I am mostly homebound except for going out to appointments and and errand here and there if I am feeling well.......if you are looking for a chatting buddy, I would love to chat! (especially with those who are going through what we are and can relate!)

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Raising hand over here! Whoo hoo, me!! Mostly homebound too. Hmmmm, we need a new acronym like ... PR <Professional Resident> -- Hi, I'm a PR gal. Has a nice ring ... or perhaps, PhD. <Perminant House Decision> ... or then again maybe something like Home Executive, that we can put that one our business cards.

As it is, I tend to sink into the agoraphobic label and my friends/family would probably agree. But I don't FEEL agrophobic ... I just hate going out when i'm sick. But no sugar coating my comorbid anxiety, I don't stay at home alone either, which is **** on my husband ... so there's a lot I effort to do by way of making this life limiting illness less limiting for those I love.

I also interact more online than in person. And I love seeing DINET friends on facebook. PM me if you are new to Facebook and are adding buddies.

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Hi Julie!! I'm homebound as well and I really hate admitting it but i think it's ok to here! I am 24, single, and living with my parents. It's really hard sometimes, I got sick when I was 12 and I"ve never really been able to function since.

Most of my friends I keep in touch with through email but those friends are few and far between. sometimes i get invited to do things but it's always hard to accept bc I can't plan to far ahead and sometimes I just don't want to bc I don't want to do with a week long aftermath.. normal people don't get that.

I also like to knit and crochet. If you search the internet there are many organizations that can donate things you make to! Look up some knitting magazines and they have lists of charities a lot of times. I've donated things to places for people with cancer or at my dad's old job they collected things for military and I crocheted hats!

Personally, i think doing something to support the troops is a great idea! My brother joined the marines last winter and i know firsthand how much letters mean to them. one word of caution though, make sure you check out the legitimacy of the organization first. From having my brother in the military I know that sometimes people set up fake organizations and they either send things to people in jail or sometimes they attach mean letters. If you want to do something for the military I'd suggest trying to contact your local recruiter, uso, or military base. they would be able to give you the best infortmation!!!!

Bananas

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Hi Like many of the others, I am not homebound, but home alot. I would love to chat on line any time. I work part time as a nurse and feel fortunate to have a husband and two grown daughters still at home with me. My husband is gone alot for his job, but I look forward to when he is home, and my daughters try to take me places when I want to go. I think it is great that you have a hobby like knitting. My daughter just told me the other day I should start crocheting again. I used to do it when I was younger, then got too busy to have hobbies, but now I have time again. I thought maybe it was just me, but I see it is not, that mostly I like to stay at home now. I used to be on the go all the time. Yesterday was a good day for me so when my husband called on his lunch break, I could tell him I had been out all by myself! Doesn't happen very often. I was only out to get gas and look around at our local warehouse store, but it was still fun. They had the new Christmas trees out for sale and Christmas cds. I love Christmas music. We moved several months ago to accomadate my illness, so now we live just blocks from the mall, restaurants and grocery store,so even though I do not go out often alone, it is easier for someone to take me or convenient when I can go out for a short errand. I have read that some people are like you and feel better at night, but I am like one of the others who responded and feel better during the day. I sleep about 10-12 hours a night, then have a morning routine. I like to get up and have coffee and oatmeal or toast, and watch the news and good morning america in bed, if I am not working. I also spend alot of time on this website because I learn so much! It is so helpful to read that others experience the same feelings as I do. I also am a faithful watcher of General Hospital [soap opera]. Hope comunicating online will provide some of the friendship you are looking for.

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Hi everyone. I am a homebound body too and I can fully understand how you're feeling kitshalleen. I'm 29,single, hate the loneliness of being ill and I even knit/crochet sometimes too !:lol:

The isolation of physically not being able to go out into the world is bad enough but also feeling so sick that you can't have people come in to visit you or that you can't chat on the phone with friends is just horrible. It's very difficult for other people to understand when you say you aren't able for those things too. It makes hanging onto any connection with the outside world so hard.

Like everyone elses here I find the internet is a great way to communicate when you are well enough to use the PC. It puts so much less pressure on you than real life face to face interaction.When you're online you can lie in whatever awkward position you need to while you chat and no one cares if you're sweating bucket loads from the effort or if you've washed your hair that day! :rolleyes:

Considering that there are quite a few of in this position would anyone else be interested in setting up a chatroom where we could chat and meet other people like ourselves? It should be pretty easy to do. If not,I'd be delighted to share my MSN or facebook with anyone who'd like to talk sometime. Just PM me :)

Oh btw... is the nickname kitshalleen from the Irish Caitilin/Kathleen?

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I think a chat room is a good idea, but it's been raised in the past, and nobody participated. I tried going on several times, but it was empty. Anyone know how to set up a chat room? I would be glad to help, but have no clue as how to set it up....

Jana

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Hi Julie,

Yes, I too am in the same boat, unfortunately. Mostly homebound with this illness. Due to fluctuations in b/p and h/r and just sheer exhaustion I find it more and more difficult to get around.

I too am single after being married for 25 years. Hard adjustment. My girls have left the nest and I've moved in January and don't really know anyone here. I do have two cats but unfortunately, they can't talk.

Most of my friends have their own lives and basically have forgotten me.

I spend my days on the computer, chatting with friends, doing some reading when I can and basically living a life that I have not chosen for myself.

I'm sorry that we are in this boat. I wouldn't wish this on anyone.

I used to be vibrant, loved to go to parties and entertain. This struck me about a year ago and I haven't been the same since.

Rene

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Like most of you, I only really leave the house for doctor appointments and church (my church has private rooms for nurshing mothers etc, with comfy recliners and tvs to watch the service, so I can sit in there with a few friends to enjoy fellowship and the sermon without the noise & confusion!). It's a bit of a relief to hear from others (especially other 20-somethings!) in the same situation. Facebook has a way to chat online with other members, so that's one way we could conect with each other-- setting up a time to meet online. Anyone interested?

Erin (fscerin@yahoo.com)

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Like most of you, I only really leave the house for doctor appointments and church (my church has private rooms for nurshing mothers etc, with comfy recliners and tvs to watch the service, so I can sit in there with a few friends to enjoy fellowship and the sermon without the noise & confusion!). It's a bit of a relief to hear from others (especially other 20-somethings!) in the same situation. Facebook has a way to chat online with other members, so that's one way we could conect with each other-- setting up a time to meet online. Anyone interested?

Erin (fscerin@yahoo.com)

what is your name on facebook because i am homebound too and have already connected to a lot of dinet friends and would like to add you as a friend also.

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Hi. If anyone wants to facebook me I'm under

Rene Schechter Klein

Thank you.

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I'm also in Facebook, but am unaware of the 'chat room' that's available there. How do we get to it? I'm under "Jana Tschopp". Yup, it's a good old Swiss name. Try spelling that out every time you need an appointment somewhere. "NO, that's 'T' as in 'Tom', 'S' as in 'Sam'.......

Cheers,

Jana

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Raising hand over here! Whoo hoo, me!! Mostly homebound too. Hmmmm, we need a new acronym like ... PR <Professional Resident> -- Hi, I'm a PR gal. Has a nice ring ... or perhaps, PhD. <Perminant House Decision> ... or then again maybe something like Home Executive, that we can put that one our business cards.

As it is, I tend to sink into the agoraphobic label and my friends/family would probably agree. But I don't FEEL agrophobic ... I just hate going out when i'm sick. But no sugar coating my comorbid anxiety, I don't stay at home alone either, which is **** on my husband ... so there's a lot I effort to do by way of making this life limiting illness less limiting for those I love.

I also interact more online than in person. And I love seeing DINET friends on facebook. PM me if you are new to Facebook and are adding buddies.

Earth Mother, I am SO similar! I prefer to interact via writing/online than actually speaking face to face. I feel like people have more expectations of me in a face to face situation than they would do online. So I can go under the radar for a few days when I have friends online, but I can't run away when they're right in front of me! I go one step further in that I love it when my partner is away too (even though I like him being here as well) and don't have a problem at all with being alone. In fact, I've had some of my happiest moments alone! That's very sad isn't it...!

Janey

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That's a tough question! I've found it to be both a blessing and a curse (to use an oft-quoted cliche). I joined, took myself off for awhile, and then recently joined again to join with others in the 'chat room' if we get that going. You just need to be careful, and limit your friends to people you know pretty well. You tend to get bombarded with a lot of stuff that I personally didn't find that interesting...You can always join, check it out, and then quit if you don't like it.

Cheers,

Jana

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