So lonesome

[Ernie]

I used to be a workaolic and work 18 hours per day. I was happy this way. I had may clients and was busy all the time. Now I play with my puzzles and watch TV. I get so lonesome some days. Sometimes I feel like an old old person in a nursing home waiting to die and trying to keep busy to forget about it. It's so depressing!

Ernie

[Guest tearose]

Hey Ernie, I'm sorry you are feeling so lonesome...please reach out and talk to your friends here! You may feel lonesome but you are not alone! I sit here in my rocking chair with the positive attitude of a 20 something year old, the natural body of a 40 something year old and the worn out pots feeling like I'm an 80 something year old!!! Do not let the alone-ness make you isolate unless you want to be alone. I've been in that lonesome place and then I moved out of it. I may go back on my own or a pots crash may take me there. Allow yourself to move through it and try to reach beyond, to a more peaceful and satisfied Ernie. I get philosophical when Im deep into my lonesome place and I think that helps me take good advantage of the deep time with my inner self. One mystery of the birth and death cycle that I figured out is ... we are here for a reason and if we don't get it right we'll have to come back and do it again! You darn well keep yourself "busy" till you're "beamed up" or you will feel the passing of time in a painful slow way!!! When I say "busy" that means try to find something to do that brings you joy and makes you use your gifts. You Ernie have at least one gift that you must know you can do. Well, I for one, enjoy your reply when I post a worry of mine! Just knowing you thought about me, my problem or pain and were able to muster energy to reply, well dear friend, how can I help but love you! Sending you my friendship and peace, tearose

[ethansmom]

Ernie,

I am sorry you are feeling this way. It can get lonely on days when we are homebound so much of the time, and we see the outside world going about it's business as usual. I remember when I was really, really sick, I used to think that maybe there was a reason why this fortune had fallen uponme. I started to see how everyone else was so caught up in their lives, that they didn't even take the time to see all the wonderful things that were right in front of them. My friends would call me to complain about theirjobs (when I would've given anything to work, and still would), or their weight (when I was too sick to even eat). I have sinced learned to appreciate the pace at which I have to live my life now.

I too am a person who used to multi-task, work and go to school full time- a real go getter & always running non-stop. I have been able to resume a small portion of this lifestyle, but truly I have no desire to become part of the race anymore. I enjoy a quiet story with my son, and look forward to my favorite shows on TV when I am not feeling like doing much. Do you have other hobbies that you enjoy? I like to write stories or poetry when I am feeling really alone, it helps. I also like to do thing on the computer, which like tearose said this site is a great place to come when you're feeling social.

I hope you don't get too lonesome, we are all here and we do understand! Keep your thoughts positive and maybe even make a list of all the things that are great about your life, and post it on the fridge. Add to it daily- it will help your perspective!!

[MightyMouse]

Hi Ernie,

so sorry to hear how hard it's been for you. I can only relate from the year I spent homebound. The TV got to be so boring. I did run up quite a phone bill though. The hardest part is that almost no one came to see me--just a very few people after the day I came home from surgery. Maybe 3 in the entire year? That isolation was so dificult to cope with. I did okay, but it still got the best of me some days.

Are there friends you can make arrangements with just to come over for tea or coffee? There seems to be no substitute for that human contact piece. The phone is a help, as is the internet, but it's not quite the same.

Not sure if I'm any help to you but hope that you at least know we all care about you here Nina

[EarthMother]

During my last bad crash, my husband bought me a subscription to Audible.COM. It was fabulous. I could download books and lectures on my computer and either listen on-line or burn them to CD.

TV depresses me. I don't turn it on much at all anymore. Ever wonder why there are so many distressing shows interspersed with commercials for anti-depressents? Hmmmmmm......

The isolation of illness can be really hard on the soul's journey. Tearose puts it into perpective so wonderfully and ethansmom offers wonderful suggestions. As is often the case, when you decide to reach out, there is somebody there to offer a hand.

Good thoughts your way.

EM

[MomtoGiuliana]

Ernie

So sorry you are feeling so down. I understand.

What happened to me when I was homebound with POTS was that I found out who my truest friends were--and there weren't many. Part of the reason I guess that people don't include you in their lives when you are that sick is because they don't want to disturb you. They also feel awkward. And part of it, too, is our culture/lifestyle, that demands nearly constant activity, and people are just too busy to take the time to be a good friend to someone who is isolated by an extended illness, and even may not feel they can relate to such a person--sad as that is. And add to that, that most people have never heard of POTS/NMH/etc and I think sometimes confuse it with mental illness, which often makes people uncomfortable. Basically, I had two friends who truly went the extra mile -- by calling, visiting, doing little things for me, trying to understand the condition. It was my family who was beside me non-stop.

The other aspect to this is, again our culture--1) we put such a high value on work/"productivity". 2) the design of our communities is often isolating for the very young, the elderly and the chronically ill. For example, our communities are designed for cars instead of pedestrians, thus homes are further apart and people spend more time indoors.

ANYWAY, my overall message is that I think feeling isolated is very unfortunately, a common experience for people with chronic illness.

Are you able to leave your home at all right now? If so, is there any kind of support group for folks with chronic illness locally you could get involved in? Are there some people in your life you could call for a talk, or ask to visit?

Recovery from this is a long, painful road. But I so agree with Jessica that there are good lessons to be learned from the experience too. Lessons that well people may never learn until they are elderly, if ever.

This forum is a wonderful community. I have never been involved with any on-line thing like this before--but I always know this is the place I can turn to find others--and such genuine, open people-- who can truly understand my challenges.

Katherine

[geneva]

Ernie, I know how awful it feels to be alone and lonely. In the beginning, I kept planning how to get back to my crazy work life, which included a lot of travel, much of it internationally. I especially loved the travel and meeting new people. So when I learned that I would most likely not do much of that again, if ever, I felt very isolated and alone. Just walking to the mailbox was like a trip around the world for my poor body.

I would look at friends who journeyed on in my place and envy them.

But over time, I realized that it is not all bad to have left the rat race I so enjoyed! I look at a friend now, who is in the same type of work environment and terribly overextended, emotionally and physically but feels she has no choice (financially). I have repeatedly told her that when her health is gone....and I expect it will happen sooner vs. later, the rest won't matter. I wouldn't want to change places with her.

I am not one to EVER say that POTS was a good thing for me....I will NEVER believe that. I do think that I have gained a new perspective of how to be a better ME though that otherwise might have taken much longer to learn.

I agree that someone with a higher power has a plan for each of us....I wish I only new what it is but until then, we must be there for each other. You are always there for so many in this group and I hope that we can reach out to you and make this day, this minute, better for you.

[Radha]

i think all of your responses are so accurate and so true, our ideas of how many accomplishments are acceptable and what makes us happy changes drastically after we get so sick, i know i have learned to try to be happy enjoying a specific food that i can tolerate and like! or looking forward to a comedy on T.V. we have to alter our perspective if we are to survive,

radha

[calypso]

I am so grateful that I am able to still work a couple days a week (although it's extremely difficult, but I refuse to give in to this illness) because it allows me some contact with the outside world. On the other days, I am home caring for my daughter, who just turned 11 months today, by the way! So on the days I am with her, we don't get out much because I try to rest more and can't really handle all of the work of taking her out -- loading her into the car, carrying her around, lugging a stroller or carrier, etc. I would love to have a normal first-time mom experience -- take her to the zoo, to the pool and so on. But I will have to settle for pushing her in the stroller around the block, or sitting in the back yard and picking dandelions. She seems pretty happy with this, thankfully. I know it's more important that I just be with her, but I do get jealous when I think of how easy it must be to just pack your kid into the car and go somewhere without planning for potential adverse events (i.e., near fainting, dizziness from standing in lines, super-bad tachy, etc.) and how you'll deal with them if they occur.

Boy, misery loves company! Anyway, my point is, you have to find some simple things that make you happy and do them consistently. Maybe this means taking up knitting and making little hats for all the preemies at your local hospital. Or calling up all your old friends from years ago to catch up. I have started doing a scrapbook for my daughter, so that takes up some of my time.

I hear you, Ernie. I hope your days get brighter soon.

Amy

[blackwolf]

Dear Ernie,

I'm struggling too. I'm still kind of having trouble and getting out and about is really hard. Church and a little shopping has been it. I need to go to my mother's to work on Xmas stuff, but...... you know what I mean.

Do you belong to a church? Can anyone come for a visit? How about your local (if your in a big enough town/city) volunture hot line, call and ask for some one to talk to, either on the phone or drop by. Mabey you can be a caller for them.

I was a working speed demon myself. I had one very fulltime job (CNA/Med aid for a nursing home, I worked nite 4 to 7 days a week) and 2 parttime jobs (housekeeping for a 3 building/ 8 units each appt complex and I cleaned the local laundry mat 2-3 times a week). Somewhere in there I managed to help raise 2 kids, train horses, breed horses, raise chickens (to butcher and for eggs), rabbits (show and butcher), 2 milk cows (milked by hand by my hubby), renovate a house and barn, and garden about 3 acres of land (which we canned and froze). My hubby stayed home the last year we did this and worked for a neighbor partime too. I loved what I did and miss it alot.

Now to pass the time, I crotchet, quilt, and help orginize crafts for Sunday school at churh. Some of what I make I sell and some I donate to church (small quilts) for thier many on going projects. I learn everything I can about my dx (POTS) and try to educate my doc's along the way. I jsut met a doc that might be willing to help me more.

Hang in there, and remember you are never alone here!!

Blackwolf

[Guest Julia59]

Hi Ernie,

I wish there was something I could do to make things better for you. Is there any way you can get out at all ? Maybe ask someone who comes to visit you to take you out of the house for a bit. Even if it's just a half hour---just to get some fresh air.

I also learned who my true friends were when all of this hit. Some turned their backs on my completely. One girl whom I hired to work for the company I worked for previously was also a friend I thought. Then I later found out she told everyone that worked for the company that I had an eating disorder because I was losing so much weight. Then after I was demoted---which eventually lead to a lay-off----she went behind my back to see if my Niece wanted to work in acct's receivable to avoid working with me. This was before I was laid off. I wouldn't let them list me as a quit employee as this would disqualify me for unemployment benefits.

Not one person came to see me when I was bed-ridden except my mother-in-law----they all thought I was just having anxiety---or over stressed. Not even my parents. My Dad finally came over when he thought I wanted to end it on one of my worst days. She was my saving grace, and she also drove me to my many Dr. appointment. She held my hand while I cried on many occasions from the constant mistreatment from doctors.

During this time----I still never forgot about my friend Sandy who was much worse off then I. I believe friends should be loyal---that's just part of the deal. Just because one get's sick----you don't stop being friends. When I was able to get out of bed---that was the first outing---to go visit my friend. She had the worst form of MS and was basically living in her cart. Very very sad. When she ended up in a nursing home I went at least every two weeks. I was still very hyper adrengic at the time and it really made me more symptomatic, But I figured she was 10 times worse then me, so I just hung in there until she passed away about 5 months after my surgery. She would have visited me if she could, she was a very loyal friend.

Still, today I never hear from anyone unless I call them. I will sit here every day alone unless I go out and see them---friends, family---ect. I'm not sure why people are like that. To me, I would think if a friend is a FRIEND, they would stick by you---through thick or thin. At least that was the way I was raised. Ironically those that raised me are also one of those I have to call. I suppose if I didn't call for several weeks they would call me to see if I was sitll alive---LOL.

I'm so sorry you feel so lonely----i'm in your corner as I know how that is. I feel very blessed that I don't pass out and am able to get out. I still don't feel good, but at least i'm getting out. Have you ever met with any other Dysautonomia patients in your area? Are there very many in the area you live in Canada?

It's important for you to have a way to have contact with other people.

I'm sending hugs your way............

Julie :0)

[corina]

Hi Ernie,

I know it's a struggle to be so lonely. I don't work either. I do have two children so that makes things easier but not being able to take them out is painful for me. I do try to organise some company. I invite people to come over to drink a cup of coffee or tea, I sometimes ask someone to take me to the library ('cause I love to read but I'm not always able to read because of brainfog). What I'm also trying to do is make a list of musea where I would like to go and ask my friends to choose something from the list and go there with me. I find this a bit difficult (I feel embarrased to ask people to take me out) but visiting a museum is something I like very much so I try and ask them anyway. I don't know whether this helps you but I want you to know I do understand you and I would like to help you out. If you would like, you could email me, so we could talk about our hobbies, studies, countries or whatever you like. It's just an idea, if you don't feel like it, then just don't, no worries. Hope you feel a little less lonely now you see so many people are thinking about you,

Corina

[morgan617]

ernie, sorry you are feeling so down. i saw my doctor the other day and we talked about how much my life has changed in a few short years and i started to cry. he was very sweet. my hubby is really sick right now. he never ever gets sick, but has developed asthma, bronchitis, and then this week, pancreatitis and elevated liver enzymes from a bad gallbladder. he has to have surgery in the next couple of days. so for the first time he is seeing what my life is like all the time and he can't believe i have remained sane! (i'm not sure why he thinks i'm am ) but it's been a real revelation to him. and has given him, i think a deeper appreciation of what we go through. and he's very understanding to begin with. but it does bring home how isolated we can really feel sometimes. i hope you get over this slump quickly. hugs coming your way. morgan

[Merrill]

Hi, Ernie. I didn't post before, but I've wanted to. I'm thinking about you too--and wondering how you're doing today! I hope all these wonderful posts have cheered your spirits some, and that you're feeling a little better!

Take good care,

Merrill

[DancingLight]

Ernie,

just like merrill your post has been on my mind and i hadn't posted yet...i really need to get my butt in gear right now and get me some lunch!

so, until i can really post something meaningful...i wanted you to know that i have been turning over your post in my head and want to write something meaningful to you. you deserve a well-thought out post...that i haven't had energy for yet...

so it is coming....until then, please know you are in my thoughts always and i hope these posts are helping ease your pain just a bit...that there are many of us all over the world (!) who are in your corner, caring about you from miles away!

emily

[Guest GayleP]

Ernie,

I know how hard the isolation can be, especially when you were used to being out in the world and seeing people before you became sick.

I just wanted to say that I'm thinking about you. I hope things get easier for you and that you find something to help pass the time.

When I first quit work I found the isolation and the alone time to be really difficult. I would just count the hours until my husband got home from work.

Three years later it's gotten much better. My health hasn't improved but I am finding it easier to stay at home.

Like Emily, I also had your post on my mind but I've been a little brain foggy lately so I didn't want to respond until I had something to say that would make sense.

Hang in there.

GayleP

[Ernie]

Hi,

Thank you so much for being there for me. I am sorry I did not reply to you sooner but I was very depressed and I did not want to discourage you (and I did not want to show how down I was). I took all the energy I had to post a few days ago and I could not even proofread what I had written because I would have deleted the whole text. I find it difficult to show others when I feel depressed but I decided that I needed to post if I wanted help.

I am reading all your posts as they are coming in and also reread them regularly. What you have told me has really touched my heart. All the love you give me makes me stronger.

I think I got discouraged after fainting in the street a couple of weeks ago after going to see my acupuncturist. I am more afraid to go out alone and I find it very difficult to find someone to accompany me.

Then last week my acupuncturist said that I should not be on the computer and watch TV so many hours per day and that I should stand for at least 20 minutes in a row in the house. I felt so non understood because the internet is my link to the outside world. There is no way I can stand for 20 minutes anywhere and I have already tried the tilt training and it made me worst. I think I get discouraged when people expect too much out of me.

I read your posts and I have decided that I will continue to plug on the internet because you are my friends and I need you. When I started to get acutely sick 4 years ago I was not watching TV and going on the net so this is not what made me sick. I think that when I choose the activities I do I have to also consider what makes me happy and not only what is the most “healthy”.

I have been doing a lot of phone calls for the past 2 weeks to find help and nothing was working until yesterday. I got a call from a volunteer office and they are willing to drive me to my doctors’ appointments. Also, I got a volunteer office that helps me write my biography. I have been trying to write mine since June but I just cannot put myself to it. This group meets every second week and we are coached on how to write and publish. I just got the information this morning.

I realise by reading your answers that all of you have lost something to this disorder. Most of the time I accept my new limits but other days I would just like to go back in time and appreciate what I had then. Looking into my thought I should also appreciate what I still do have.

This morning one of my old client left a message on my answering machine because he wanted to have a massage tonight. I had decided not to call him back because I did not have the courage to tell him that I am now disabled. I had not seen him for a few years. He called me at noon and said as a joke: “You were not planning to call me back!” So, I told him that he was right. He was surprised because I had always returned messages. So I told him it was not because of him but it was because of my condition. He wanted to know more so I started to tell him what I have and why I don’t work anymore and why I don’t even want to return clients’ phone messages. He said that he did not know what to say. So I started to tell him what I am doing to keep busy and he said that I had a very interesting life. So I asked if I discouraged him by telling him my story and he said that I was very positive and that I encouraged him. I thought to myself that either I have a good mask or I don’t realise what I do. I asked him to explain why he finds me encouraging and he said that it was because even if I am limited I still do things and I still want to be active and useful to others.

You are also encouraging me by telling me that I am there for you because sometimes I wonder if my posts come across as I intend them. Since English is not my first language I sometimes find it difficult to express myself and I am often afraid to hurt you.

I followed your advice, I called some of my old friends. I don’t want to know yet how much it will cost me but it was well worth it.

I have been trying to find a support group in my area but so far I have no luck in finding one even for another chronic illness. I will still try to find a group because I need to see other people.

The only other dysautonomia people I saw were the ones I saw in Toledo when I went there 2 years ago, you Julia and my family members who are also affected. Here we are a “rare species”.

All your posts have cheered me up a lot! It makes me feel so good to read everything you wrote me. I think I will print them and read them every day (for a while at least!!!).

I love you all

Hugs

Ernie

[Guest Julia59]

Ernie,

I'm so glad you are going to continue writing! I hope I didn't bum you out about my friend talking about how bad she had it. Although her life was tragic---the loss of two daughters, two abusive husbands, and then the MS------we had a ton of good times together. Knee slappin good time's----Oh the trouble we used to get into.

I think in the end she just wanted to let go---she had lost so much. She even laughed the last time I saw her in the nursing home.

I just wanted to tell you how loyal our friendship was---all those years. I just think friends need to reach out and help one another during rough times. At times I get bitter---as I don't get the support I want. But I have to take a clear look at my life and see what I do have.

I just think a lot of people don't understand this illness----but we'll show them------one day all of this will come out, as we will be the teachers. I admire your courage as you are one of the inspirations that give me strength. I understand your depression because i'm no stranger to being lonely. It sounds like you have some things to look forward to. Also, how cool it is that you were able to complete your education. That is my biggest wish to get more education.

Julie :0)

[geneva]

Oh, Ernie it is so good to hear from you today! I am glad you have reached out to others around you....I understand the struggle it is to do so...and it does sound like you have opened a few doors. Some may work out, others not, but I think we just have to keep looking for the right doors. Good luck with your writing.

[Ernie]

Hi Julia,

You did not discourage me at all. When I read your text I thought that you were very courageous to visit your friend at the nursing home considering that you were sick yourself. I think that she was a special person and it must have been a terrible loss for you.

I agree with you that friendship is lifelong, in good days and bad days. I have friends from 25 years ago but they have moved out and they are long distance. We still call each other once every 3 months or so. A real friend is like a diamond.

Ernie

[Jersey Girl]

Dear Ernie,

I don't know what to write because I feel the same way sometimes and don't feel like letting anyone else know because I don't think they'll understand. I have to push those feelings to the back of my mind to get through the day. I am so thankful that you posted because I feel less alone dealing with this crazy POTS. I know that I have read your posts frequently and that you have responded in the past to me and many others. Sometimes it's ok to cry too because it lets out those pent up emotions that just make the dysautonomia worse. I truly believe that you will have some good days ahead. We all have many things to be grateful for in spite of our "condition." Martha

[Guest tearose]

Hi Ernie, it is good to see you back! Just don't overdo it kiddo! You are not allowed to pull 18 hours anymore! I'd like to hear what some of the "quiet thoughts" were that came to you if you'ld like to share...and what happened to you that made you wake up your computer and write. If we could learn from each other what makes that incredible moment of strength happen it would be wonderful, don't you think so? take care, tearose

[Ernie]

Hi Tearose,

Can you explain what "quiet thoughts" means? I am not familiar with this expression.

Ernie

[Guest tearose]

Sure Ernie, When I personally find myself alone, it gives me the opportunity to be quiet and think deeply about my life, what I am doing and what I wish to change, what I appreciate about my life, things I want to work on, or let go of. I think the darkness and quiet of our alone times are times of the deepest growth for us. The "quiet thoughts" for example for you, may be that you will try to realize that those 18 hour work days although they seemed vitally important to you when you worked them, have little to do with the person you are today. The quiet thoughts for me are usually philosophical. But hey, that is my path, it may not be yours. I was curious if you experienced this. best regards, tearose

[Ernie]

Hi Tearose,

Thanks for the explanation.

I finally decided to post about my feeling of loneliness after I had tried for a couple of weeks to find a support group in my area and could not find any. I saw in the newspaper that there was a support group for people with panic attacks and anxiety. I talked to my best friend about it and she said that I would not identify myself with them. So I wanted to check it out and went on the net to find one. I read some of their posts and realised that my symptoms did not matched them.

For example, someone was saying that they were afraid to leave the house because people were looking at them (the person has social phobia). I wanted to post on that forum but I figured that they would not understand that I am afraid to go out because I am afraid to faint on the street and hurt myself. They would have thought that it was only a fear and not a fact. So I did not see myself trying to explain to them that I have a real physical disorder and it is not only a fear per se.

As a therapist I understand that phobias, fears, anxieties and other psychological or emotional problems are disabling but I did not feel that the panic attack support group would understand the physical side of my problem. As I was reading some of their posts I realised that they were getting depressed as a side effect of their social phobia. I also realised they they felt free to talk about it.

So I decided that I was going to take a chance and talk to you girls and guys about it and see what happens. I was afraid to be perceived as weak and sick (I know I am but I just don't want to show it!).

I was positively impressed by all the compassion, empathy and understanding I received from all of you. I felt like everyone was holding my hand and helping me to get back on my feet. I am glad that I posted and I am very appreciative of what everyone has said to me.

Ernie