So lonesome

[geneva]

Ernie, I wish we all lived closer together and could have a group hug!

I imagine for many this is the only place where we share our most honest feelings about what this illness has cost us in terms of life goals and happiness. But, I know that holding in our true feelings can add stress to our daily life...that's what I have finally figured out anyway. I have observed that the people who surround me want to hear "OK" when they ask me, HOW AM I today? After a while I think it is a tendency to withdraw from telling anyone the real truth because of their disappointment. But, here, on DINET, it feels like just the group of friends to share life's ups and downs.

I have never met another person face to face with any type of dysautonomia. But I know in reading your posts you have been through some of the more serious problems and I have admired greatly your courage. I don't know how I would personally handle the situation if I worried about fainting as you must. You have accomplished a great deal in spite of this limitation and I envision that you will continue to do so. You have a wonderful and determined spirit Ernie.

[Nicole's Mom]

Ernie,

I want to tell you what Nicole did and how it is helping her. Nicole was feeling very lonely too during the day (her boyfriend works during the day) and her father and I visit with her but we can't be there all the time and when we are not there she is lonely. Since this second relapse within a relapse came about, Nicole hasn't even seen the light of day in that she has not even been outside. She has been bedridden except for bathroom trips. Where were her friends? she wondered. She was always there for people- that's the kind of person she is- nuturing, a listener type when her friends needed her. She felt let down.

Anyway recently she decided to call these certain friends to specifically ask them if they would come and see her. This is new for her to ask people to do something for her. Because she is so used to doing for others. Anyway she bit the bullet and made the calls and got positive responses from some of her phone calls and now she has had people, besides us coming over.

Nicole is still alone more than she'd like and some of the time she still has to initiate the visits from her friends. But they come when she asks. Also it could be that prior to this she may have given inadvertant signals that she was too tired. And maybe her friends felt they shouldn't bother her. But now they do come and sometimes she has to sleep when they are there but she just wants a human there. Anyway as I said a few sentences ago she is still alone more than she'd like and her therapist (her therapist comes to her house) said for her to call even more people. So Nicole called the church and the local Zen Center. Yesterday someone from the Zen Center returned her call and said they would like to come and and see her. She doesn't know the person but she is okay with that.

I read what you said about calling around and finding volunteers - and you have found one to drive you to appointments. And one to help you write your biography. How lovely that you are working on your biography. That must be very cathartic and enlightening even though you need some help to do it. And how nicely it worked out that you phone calls brought results. There are some lovely people out there who do volunteer work. Yes, it doesn't seem right that someone who is ill or who has suffered losses should have to be the one to reach out-. But maybe that is the way human nature is- strange as human nature can be sometimes. The most important thing is that your phone calls have brought results. And to have people around is good for the spirit.

For you to post on this forum and express your feelings is so important because you see how you receive empathy and support and compassion. By the way you express yourself very beautifully and clearly.

Best Wishes,

Beverly

[DancingLight]

ernie!

i promised i would respond to this post of yours...and i am just now getting to it. there are just so many posts to keep up with!

beverly...wow! that was so well put, as were so many of the other posts so far.

ernie...i am very glad that you posted this topic. i know it is hard to post these things, but here, you are not alone in this and we will understand!

i just wanted you to know that i also get very lonely. sometimes i think i am doing just fine and la-dee-da and then all of the sudden it will hit me and i will feel very alone in the world. i live with my mom, but she is more of an introvert and i need more "connection time." i am also mostly homebound and my socializing ends up being at the drs. office or something like that.

i spend a lot of my precious energy here on this site, talking on the phone with friends or writing letters. i really have to push myself to keep reaching out and not withdraw. it is so hard to call my friends sometimes b/c i feel so lousy and don't feel like i want to be "up". i am cranky and sad! i feel like they will burn out of hearing that i feel awful still and nothing has changed. i also, like nicole, have to really be the one to reach out. and sometimes that makes me frustrated b/c i wish my friends would sometimes take the initiative more. but, i think beverly is right in that i do give off signs that i am too tired and they are gunshy to call me.

the other thing that is so hard is that all of my friends live far away and they have very busy and full lives. kids, grad school, work, husbands/wives. so, sometimes i feel like they don't have the time for me or that i'm just something they are trying to fit it. or that i NEED them a lot more than they need me. that is scary and that is when my loneliness kicks in. i suddenly think...man, i don't have anybody. who would really be here if i needed them?

locally, i don't know how to create a support network and that is a huge challenge for me. i have tried to do a couple of things like a book group or go visit someone but it takes absolutely everything out of me. and maybe that is what i need to do. let that be my priority over everything else. but i hate having something that should be fun wipe me out for days. it's hard to keep forcing myself to try to go out.

i visited a neighbor last week and she has two little kids. she complimented me on how much they adore me. that melted my heart. i overdid (i was there 1 1/2 hours) and was miserable afterwards. but i think it was worth it. i love kids so much and my heart aches to be a mommy.

sometimes, when i get off of the phone with a friend or try to go out, i feel MORE lonely afterwards than i did before. simply b/c i feel like an outsider looking in. you know? like, all these people have these full lives and so much going on and i just don't fit in. they go home to somebody or to something and i go home and feel sick and lonely. i also miss my friends terrible when i get off of the phone with them!

like others have said, i have learned sooo much about how to be a better friend as well as who my true friends are. i count my blessings that i have been able to maintain these friendships long-dstance for so many years (i have been out of college for 6 years and have not even seen two of my closest friends since then). my best friend and used to touch base every day on the phone and she lived back in town for a while, now that she is gone it is so hard to get used to not being able to have the day to day contact...the talk about anything and everything stuff.

i miss having that day to day contact. she was the one we could gossip or have a heart to heart whatever we were in the mood for. but when you have to go longer periods of time without talking you have to squeeze so much more in and miss the day to day stuff. i guess that is what makes me feel most lonely. also, face to face is still the best and i don't get that much.

my friends who have stuck by me....what i have learned...is that they LOVE ME. the love MY ESSENCE. and they are able to see that through the illness. they see me. they don't see a sick person. it seems harder to meet people post-illness b/c they just see that. i don't know.

my least favorite question in the whole world is "what do you DO?" and i just don't know how to answer. and sometimes i avoid situations for that reason. not good, i know.

i have learned the gift of true loving friendships. yet, i also know the darkness of loneliness. it is such a hard spot to be in. i wish i had words of wisdom. like katherine said, our society is not set up to help chronically ill people feel less isolated.

sometimes i know i bring it on myself b/c i don't like to be vulnerable and i don't like people to see me "look sick" so i will only see them if i can get dressed and get make-up on.

i am trying to learn to let go of that. a friend came and stayed and took care of me for a weekend and i couldn't hide my paleness, fatigue, etc. i can do it for a coupel of hours, but longer than that...forget it!

i also am learning that if people want to come visit they have to love my messes and they have to be able to fend for themselves. i can't be the hostess with the mostess.

i have a VERY LONG way to go on these issues.

it is the hardest when i am in the deep deep potsholes...where i am too sick to go online, too sick to call a friend. and since i am usually the one who calls them, i don't necessarily hear from them. so i get really, really lonely then. and that is when i need my friends the most.

ernie, also, i wanted to mention your comment on tv and internet. i was so anti-internet and tv before i got sick, i was kind of a snob about it. but, you are not sick b/c you do those things. now, i rely on them both a lot. we do what we can do. if you felt better you wouldn't watch tv or spend as much time on the internet. you would be out living your life. but, since you can't do those other things, you do what you can. getting a laptop computer and reaching out to people on this site and also emailing my friends is the best thing i do for myself. i believe that connectedness is so important...yes, we would choose face to face first, then phone, then internet...but at least we HAVE this internet community. i cannot even begin to imagining surviving this without this community and resource.

as for tv, like jess, i tune in to my favorite shows and rent movies. they are a treat and sometimes i don't feel well enough for anything else. i beat myself up too and feel "lazy" but, my mom keeps saying, emily it's okay.

like tearose, i am very introspective and do a lot of thinking in my sick time. probably too much. i'm one of those racing thoughts people.

i wish i had more tips on how to create a support system or feel more connected. it is a vicious cycle sometimes, b/c the worse we feel, the less we want to reach out. most of the time people are receptive, but sometimes they aren't and that is the hard part. usually people are empathetic, but i still have a hard time telling people i am chronically ill and not having the conversation stop dead.

so, i hang on for dear life to my mom, my dog and my dear friends around the country and hope that i will see them soon!

i just want you to know....next time you feel lonely, log on here. and if you don't feel well enough to log on...know that you ARE TRULY NOT ALONE...there are many of us feeling your same emotions. we are far away in miles, but not in spirit.

okay, i just started a new med and it is literally speed! i am wired. and i just wrote a novel here. i am sorry if i bored you to tears. thanks for listening to my rambling.

also, ernie, i hope you will continue to feel that you contribute something to this site. i know you said that you feel like maybe you don't make a difference here (or something to that effect?) and i wanted to say that you have been a constant since i joined ndrf and now potsplace. i have followed your stories and i would feel at a loss if you did not continue to contribute your wisdom and support on this board. and, never worry about spelling...we don't care!

keep writing!

later alligator!

emily

[DancingLight]

oh ernie!

i just looked at how long that post of mine is ....ooopss!!

still, i want to add two more things!

1. if i am too tired to talk on the phone or my friends are "unavailable" (and i am sick of typing--which usually is pretty quickly)...i LOVE to write snail mail. it makes me feel so connected to my friends and they go nuts to get mail! it makes me so happy to doing it. i don't know why. it's like this little thrill for me to write a letter or even just a short note and decorate the envelope. i also like to make cards, use stamps, markers, stickers whatver. goofy stuff. just to give my friends a laugh. nothing fancy. like, i found my stickers from the eighties and have been using those. it makes my friends smile. it is something other than biils. there is nothing equivalent to sealing an evelope, putting a stamp on it and taking it out to the mailbox. aaaaahhhh the simple joys of life!

2. SCHEDULE PHONE CALLS with people. my friends and i either set up times to talk via email or phone so that we will both be focused on the conversations. my friends take time out or their crazy schedules and i pick a time that i will be awake and i save my energy all day for that conversation. that way i am able to enjoy it. also, it is so easy (whether sick or well) to say...oh i'll call another day when i haver more time/energy/am in a better mood.

this way...we make time for each other and make the effort to stay connected. i.e. one of my friends and i talk every other week....if we can't find a mutual time, we still call and say, okay, how about in a week at this time? she has told me that she feels closer to me emotionally than to her frineds nearby simply b/c we put the effort in.

also, i might have a phone call scheduled and not feel well...but that way i CAN"T BACK OUT! b/c i don't want to let someone down! (i will cancel if i am too sick or keep the conversation shorter.) but, usually, i feel better after being pulled out of my own little world and thinking about someone else!

so, that's it for now.

i hope you aren't completely exhausted from reading this. i would be. i don't

even know if you will want to read the darn thing!

emily

[Ernie]

Geneva, Beverly, Jessica thanks for answering my post.

I have also read your posts a few times and meditated on it before answering.

I would like to be able to meet all of you face to face and have big hugs. It's funny how we feel connected even if we don't see each other. I am glad to be part of this cohesive group. I think that part of the reason is that we have good moderators and also each one of us is careful about each other's feelings.

Another thing I also appreciate is that even if a few a us are from other countries than the majority we are "one" group. There are no national barriers.

I went to my first biography meeting on Wednesday. There are 10 women all in their sixties. Of course I am much younger then them but I can identify to them because they are "retired". I really enjoyed my morning with them because we exchange our deep feelings and nobody judged us. When I came home I felt so refreshed. It takes a lot of my energy to get there but at the same time it nourishes me. There was a woman who almost died of cancer 5 years ago and her husband of 30 years left her. I was in tears when she was telling her story. I don't know if she will survive the 2 years we will be together but I know she will make me grow.

My dear Emily. I read and re-read your posts and I appreciate that you take your time and energy to write to me (this goes for everyone else also). I know how awful you feel some days and I value even more what you are giving me.

I have noticed lately that I get exhausted talking on the phone. Emily, until you wrote it I had not realise that it could be caused by our disorder. I thought that if I laid on the couch and talked that was fine. I know that when I faint I don't have the energy to talk but I never realised that on my good days I would get exhausted by phone calls.

I think it is a good idea to schedue phone calls because as you said we save the energy for the conversation.

For many years I desperately wanted to have children. Now I am getting to a point that I accept not to have any. I still miss it but it is not as painful as before.

I appreciate having you my internet friends.

Ernie

[DancingLight]

Ernie,

thank you so much for taking the time to read my super-long post. i am glad that you found it helpful.

and YES, talking on the phone is exhausting! even using a headset and lying down, it doesn't matter. i still have a "spell" and go into fight or flight. some days i can talk for 15 minutes and some days and hour and some days not at all. my mom can SEE the color going from my face as i fatigue from talking on the phone or visiting with a friend in person. (okay, okay, so i don't have much color in my face to begin with! it's all blush! thank god for make-up)

this illness is so hard b/c all activities...physical, emotional, social and intellectual are fatiguing. that is what i find so frustrating.

hooray for you for going to the writing group!

emily

[geneva]

Ernie, it is wonderful to hear that you have signed up for the biography class and think of all the wonderful interactions you will have over the next 2 years. I also add that there is so much the others in your group will learn from YOU. Your courage, your strength, your character and so much more. I have never heard of this type of writing group and I think it is terrific that you looked long enough to find one that is of particular interest to you. And even though it takes a lot of your energy, at the end of the day, you know you have done something that is really important to you.

have a restful weekend!

[Nicole's Mom]

Ernie,

I loved reading about your biography class. It sounds like you already established a feeling of belonging. Wow! Two years to be together. You are in the process of making wonderful friends. In time they will feel like family. Not to sound biased - but it is they who will benefitting greatly by having you as one of the family- you are indeed kind and compassionate. Not to mention that you already write in a very poignant fashion - I can only imagine how equally poignant your biography will be.

Emily,

Thanks for pointing my way over to this site to read your posts. Thank you kindly for sharing some of what you go though. It certainly sounds very difficult yet very familiar. I know that your days can certainly present a challenge to you yet you have a much wisdom and maturity and a good attitude plus you give good advice. As you know I am interested to know even more of your story but yes as you said you will tell it in bits and peices which is a good way to tell a long story. By the way unless I missed it somewhere - I don't quite know what gave you the energy you spoke about that enabled your fingers to fly all over the keyboard and give us so much of the scoop about yourself. What new drug are you taking?

Beverly

[DancingLight]

beverly...

i am taking dexedrine...

yes, i am taking speed legally! eeek!

this is only day 3....i am still wired but not nearly as bad. i hope to sleep a little better tonight...i will post on it if it is a success...right now, too early to tell.

thanks for reading my scoop!

emily

[geneva]

Hey Emily. what is dexedrine used for??