Is anyone else alone??

[gothiclovemonkey]

 

I feel like I am so alone. I mean, I have family, but, they dont understand, and they really arent there emotionally at all, and physically... well yes I see them a few days a week, sometimes more, but I feel as though I am going through this so alone. They dont understand anything about Dialysis, and dont seem to want to know about it... I do think my dad tries, the old country boy he is, tough, cant show emotion you know the type, he will pick me up from dialysis, ask how much they took off, ill say 3 (or whatever) and thats the extent of it... My brother sometimes spouts out things about the fact I shouldnt drink the Diet Coke, or eat those nuts..
I feel like my friends have abondon me since I got sick, not that they were that great of friends anyway, the only came around when they wanted something, seemed they wanted more when I could work and afford to give the money, now that they owe me and I need it back, they have disappeared... And the ones I felt were true friends, they too dont come around, and Idk why. Its not like im contageous, and NORMALLY i dont let this stuff get me down. Im normally fairly upbeat, and I hide how i am feeling.
Why do I feel so alone??? Some days I just dont want to waste the time and money its taking to keep me going, if i didnt have the amazing little boy that I do, I would not do this anymore....
I suppose I am just being dumb... or selfish and ungreatful I am sure there are people completely alone in this world and I should be thankful I have what I do have... I just wish this alone and empty feeling would go away!

[okarol]

It sucks to feel alone. I am not the patient, but my family does not understand, sometimes I don't bother to share new updates because they just don't get it. I am sorry GLM but we are here for you! Sending you lots of HUGS and LOVE - hang in there. 

[boswife]

I dont want you to feel alone    Its an awful feeling and I'm sorry your feeling that way.. I am glad you have your precious son, but even in that it must be hard worrying about how he does with it all.    I am glad that my family doesnt REALLY have to feel what is like to go through this, but i do wish they understood that it's not easy turning down fun stuff they offer.  I told them yesterday that we are going to sell our house, and move far away so i dont have to explain the whys of why we're not available as we once were.  It's hard stuff and like i said, it's not that you want them to 'feel' it, but please have a heart and open ears to your feelings...  I pray for some comfort tonight..   

[Joe Paul]

On a brighter side, I used to sit in that chair lonesome lots of times. I did spend some time making small talk at the center, but mainly for sanity sake. I pushed everyone away except the friends I made here at I.H.D. You know, I felt as though I was holding my Wife and Daughter back in their life. The main thing I learned from the chair, was, and is still today, to talk to God as I know he understands how I feel. So long as I have him, even though times get tough, I know he is sitting me still to talk to me. Take the time to pray, it really does help. OK, I'm going to step down from the podium, I hope you find your healing in trusting that things do and will get better, I'm praying for you.

[MooseMom]

I think most chronically ill people feel alone.  It can be a very isolating experience.  I don't know why, but kidney disease doesn't seem to have a lot of visibility.  Our local hospital sends out a monthly newsletter, and on the last page is always a list of local support groups.  There are groups for cancer, alcoholism, bereavement, mental illness, cardiovascular disease, but NOTHING for renal patients which is very odd seeing as there is a dialysis clinic on the campus of the hospital!!  I even called the department that handles the info for all of these support groups and asked if there were any renal support groups, and she couldn't find one.  So, that alone feeling seems to be magnified in renal patients.

I have felt like you feel, and I've sat myself down and asked what I expected/wanted from my family.  Did I want their sympathy, advice, what?  I realized that I didn't want much, didn't expect much...just the occasional phone call from an aunt or two who will ask me how things are going.  I have a cousin who was on D two years before getting a transplant, so there is some knowledge about renal disease in my extended family.  But other than that, I stopped caring what other people thought or felt about my disease because they don't care...they don't have to care, and I don't care if they don't care.  Once I stopped caring about whether or not they cared or understood, it lifted a great weight off my shoulders.

Is there one single person in your real life to whom you can explain what you explained here tonight?  Is there a friend that you could have come around and lay it all out on the table?  Sometimes all it takes is making a connection with just one person.  Do you have anyone like that?

[natnnnat]

I found this thread because I saw Moosemom's answer, and went to the thread from there, and worked my way backwards up the thread, wondering who was lonely.  I thought, is it one of the cheery ones? and it was.  Damn, Gothic, I don't want it to be you.  But everyone gets down sometimes don't they, why wouldn't you, you have a lot to carry.  If it's worth anything, people here know what you mean, and you help people here too, and I am always glad to see your posts.  Get some rest, take some time out, things usually improve after sleep and rest.  Here, have a flower.
 

[needlephobic]

I know how you feel. My brothers and sister has no clue of what I am going through. After mom died last November
my sis told me I can stay put in mom's house. After she talked to my greedy brother and his greedy girlfriend I was told they are going to sell the house and kick me to the street knowing I am dieing they just don't care the want the money. Just can't wrap my mind around that. But a good note received a letter from a friend of mine on FaceBook who felt for me and my condition and wants to be a pen pal and a friend I can lean on. She wants to come here with her fam and hang out with me I thought that was cool. My girlfriend has been by my side through this whole thing she loves me regardless of my condition.   

[kellyt]

With the exception of  this site and my friends on IHD, I do feel alone in this struggle.  Before transplant most definitely, and after transplant somewhat.  People forget and stop asking how you are.  I know that if I didn't post the occasional Facebook update I wouldn't get the "So happy for you" and the "How's the kidney" statements/questions as much.

This site was an answered prayer that I never even sent up.  Come here often and get your support here.  Your friends and family will catch up.

 

[gothiclovemonkey]

Thank you all so much. I love this site, its one of the only things I really have.
I usually try to be upbeat, ive kind of always battled with mental problems, so I have my moments. I think its strange how in one hand I can feel so truly blessed and pretty wonderful, considering what we all deal with in life, but at the same time I continually feel either numb or sad, it just lurks behind it all. I dont see how I can be soo positive and sooo depressed at the same time. I really do feel blessed, and lucky! (Sometimes I wonder if i dont have some sort of multiple personality! lol)

I think the hardest part is not having the offline people in my life that call themselves friends and my family, even aknowledging that I am unwell. Family make plans on dialysis days... that really bothers me alot, maybe i shouldnt let it bother me. Or getting mad at me for having a messy home...which I dont like having a mess, but I can barely walk most days.

 I dont have many friends, because I am such a recluse. Most of my "friends" only contact me when they want something. Ive never really had the type of friend I can open up to.  I do have one friend who seems to really care, it is somewhat new friendship,  an old co-worker, shes an amazing gal, and we go for lunch and stuff, which is lovely. And I met an amazing man, who is so much like me (unfortunately he lives 2 hrs away! I met him online lol) He helps me alot, when I am down. So that helps. And of couse all of you IHD folks! So I know I ma not completely alone.

Needlephobic I am sorry your brother is being selfish, hopefully he wont do that. And I am sorry to hear of ur loss, I lost my mother in 98.

I agree there should be support groups, that would probably help. I know this site has helped, knowing alot of you are going through similar experiences... Sometimes I get a bit jealous though, of those of you who dont feel like crap all the time I am glad you dont feel badly all the time, but still wish that I too could feel good because of dialysis.

Just the other day I was telling my brother, I dont feel well, his reply was, you are always sick (in a very snide tone) I wonder why I even bother to try to tell anyone how I feel. And when he is complaining about things, I always listen and try to be understanding, but here lately its been hard, mostly because its things I personally think he could change, I try to get him to see the silver linings, but its impossible... I feel like a B**** because I have limited compassion these days for people who continually complain about aspects of their lives they could totally change. I cant change my kidney failure, and you rarely hear me complain...
and while im on the subject, why do people ask you How you are feeling?  If you tell them Oh im fine, thanks, they dont believe you, but if you say Eh ive been better, or I feel like crap, they dont want to actually hear it.... seems kind of stupid to me.

[MooseMom]

Hey!  I just looked at your profile that says you are in a "random cornfield in Illinois".  I'm in Illinois, too...maybe we could meet up!  If you'd like, you can PM me and tell me where you are, and maybe we could meet halfway.  Illinois is a LONG state, but I've done the drive from Chicago all the way down several times, and it's pretty easy peasy.  It might be fun.  We could have a renally friendly girl's lunch or something.  My kid is all grown up and lives abroad, so I am relatively untethered.  I'm not on D yet, so I can travel fairly easily.  Anyway, think about it.  Your call.

You sound normal.  At least, you sound like me, and I think I'm pretty normal.  Yes, I do.  In our instant communication society, we can at any time see the suffering all over the world, so we are very aware of the ravages of homelessness, epidemics, earthquakes, financial disaster and all sorts of horrors.  So if we have enough to eat and a place to live in a society where people are not trying to kill each other just because of the color of our skin or our religion, we feel lucky (or SHOULD) and blessed.  But when we look at the nitty gritty of our lives, no one who is blessed and lucky feels that way if they have something as "devastating" (I put that in quotes because in medical literature, that adjective is often used) or "horrible" (quoting my neph) as CKD/ESRD.  So feeling both blessed and cursed is normal in my world.

Your family has not shown either understanding or compassion, so it's time to drop them in this regard.  Sometimes you have to not only build support networks but also build defenses, and I suspect you will need to build one to protect your soul from your family.  It's not true that blood is thicker than water.  I have a half-brother who wants a large portion of what my mother left me when she died because he reasons that it was our dad who made that money, so he's entitled to it.  He is getting ready to retire, has a wife and home and has a son who is 30 and is gainfully employed.  I probably won't live to retirement, and MY son is disabled for life, yet my half-brother wants hundreds of thousands of dollars from my mother's estate so that he can buy his wife a new house.  I do not waste my time feeling hurt.  He's never mentioned donating a kidney or ANYthing re my health; I could be hurt if I wanted to be, but I can't be bothered.

When people ask me how I'm doing, usually followed by comments on how well I look (code for "you're not THAT sick"), I tell them that I just bought a new makeup and it must be working wonders, and I straightforwardly tell them exactly how I am feeling and that I am still awaiting a transplant and isn't it amazing what doctors can do these days and it is amazing that they can remove donor kidneys laproscopically and it is amazing what a transplant can do to transform a life and it must be an amazing feeling to be able to literally save someone's life and it's just all so incredibly amazing, and how are YOU doing?

I know this sounds harsh, but I have found this to be very helpful...remind yourself that your family's reactions (or lack thereof) is really more of a reflection upon them and not you.  Here we are at IHD...people behind computer screens, people who have never met you, yet we can show more interest and compassion than your own family.  What does that tell you about your family?  For them to schedule things on your dialysis days is unforgiveable.  That says way more about them than it does about you.  I'm really sorry they are that way.  Of course it bothers you; it's very hurtful.  But screw 'em.  Sometimes it just comes down to that simple philosophy.

Are you getting optimal dialysis?  I don't know what modality you've chosen...do you do daily D or is it the thrice weekly incenter mode?  Do you think that part of the problem is that your health isn't as good as it could be?  Is your dialysis "optimal" or just "adequate". 

One last thing...while perhaps it is a good thing to "always look on the bright side of life", don't beat yourself up if you have bad days or if you are not the shiniest person in the world.  You have a lot on your plate, and you just can't add the burden of behavioural expectation.  It is impossible to be happy and upbeat all the damn time, and to expect yourself to do that is just setting yourself up for failure.  You don't need that.

Have I fixed you yet?   I apologize...I do go on, I know.  I just hate to see anyone suffer emotionally when they already have so much more to deal with.  I hope you will feel better soon out in your random Illinois cornfield.  If I can help you in any way, I am more than happy to drive to meet up with you.  Or, you can come see me if you need a change of scenery!  We've got spare bedrooms and you can come camp out here for a weekend!  Bring your son!  We'll show you a good time.  You don't have to be upbeat around me.  I get it.

[boswife]

you are toooooo amazing Moosemom...

[gothiclovemonkey]

I agree she is amazing!

Normal? me? LOL no... im far from it...

Id love to meet up with you!

Family sucks, people suck, i know this lol my family has always been kind of down on me... so im used to it, but it still hurts..

My dr is less than desirable, so i have no clue if im getting good dialysis, but i think i feel worse than i did before i began.

Alot of people say you dont look sick, u look like u feel well today.. I am thinking, well, yes, compared to usual at least i dont feel like death has his hand in me.  but i never really feel that great.

[flipperfun]

Hi gothiclovemonkey, oh I sooo feel for you.  Great reply from Moosemom.  I hope you do meet up.

I thought I would share this with you and hope it might give you some comfort.  I really believe the saying is true.

After you have finished reading it, you will know the reason it was sent to you. 

Here goes:

People come into your life for a REASON, a SEASON or a LIFETIME. 
When you know which one it is, you will know what to do for that person.. 

When someone is in your life for a REASON, it is usually to meet a need you have expressed.  They have come to assist you through a difficulty, to provide you with guidance and support,  To aid you physically, emotionally or spiritually.  They may seem like a godsend and they are.  They are there for the reason you need them to be.  Then, without any wrongdoing on your part or at an inconvenient time,  this person will say or do something to bring the relationship to an end.  Sometimes they die. Sometimes they walk away.  Sometimes they act up and force you to take a stand.  What we must realize is that our need has been met, our desire fulfilled, their work is done.  The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON, because your turn has come to share, grow or learn.  They bring you an experience of peace or make you laugh.  They may teach you something you have never done.  They usually give you an unbelievable amount of joy.  Believe it, it is real. But only for a season. 

LIFETIME relationships teach you lifetime lessons,  things you must build upon in order to have a solid emotional foundation.  Your job is to accept the lesson,  love the person and put what you have learned to use in all other relationships and areas of your life.  It is said that love is blind but friendship is clairvoyant. Thank you for being a part of my life, whether you were a reason, a season or a lifetime.

I really hope this gives some small degree of comfort.

Good luck and cherish your true friends!

[casper2636]

GLM-
I've also gotten left in the dust by my "friends". It's sad and very heartbreaking that these people that I've shared so much with have left me lonely. I only have family and my lifetime best friend from teen age years and thats only by computer. I can't get the phyisical affirmation I crave from that. I thank God for this site and for the way I'm able to see that I really not alone, and there are others that feel the same way I do. I just keep "tunning "in and get my "hugs" from here.
Sending them to you and all for the support and T.L.C.
 

[RichardMEL]

Dear GLM. You are NEVER alone! You have us all the time... and with us spread out all over the world we cover all timezones pretty much 24/7. You feel down and want to vent.. come here... !!!! You feel like the world owes you something more.. come here (I have hugs to spare!). You feel like nobody understands the *)#*@)@#* you struggle through day to day... come here... many of us have experiences that can mirror yours in part. At the very least those of us who have done dialysis get it.

I've been there.. the whole "you look so healthy" (and yet, after transplant it's still YOU LOOK SO HEALTHY! - I must have really looked like shit before!!  ). Family who try to understand but just don't get it (I had my brother come in after the transplant and acost a doc with stupid questions and assumptions and she shot him down in flames.. I had to laugh). Or even my father, who is a dentist by training and because he did anatomy 101 like 40 years ago thinks he understands the whole thing. nuh huh.

As for friends... I guess I have been blessed in that since my transplant they have really come out of the woodwork - the ones who MATTER. The ones who DO care. Not the ones who want something or just want to use you. I have been amazed by the numbers of people making real efforts on my behalf, visiting, constantly sending texts to see how I am etc. But when I think back it was also before my wonderful gift that even little things would happen - a co-worker would enquire, in a polite way, and not at all forced or fake, or someone else would ask how that horrible dialysis was going. It IS very hard for "outsiders" to understand because luckily they don't have to deal with all that - and I for one am happy that they are so lucky!!! Even explaining fluid restrictions seems to go in one ear and out the other ("So OK you can't have a beer but you can have lots of water right?" ummmmmmm.....  )

Just remember the people who ARE there are the ones that matter in your life. The hangers on and the ones who borrow stuff. They're not friends.

We're friends. We're the "insiders" and we're always here!

 

[KICKSTART]

Its over 5 years since i had a hug ...

[gothiclovemonkey]

Thank you all for your kind words

  Kickstart! and  for everyone!

I am very thankful for IHD, you people are amazing and wonderful, and im happy to have you in my life. I know I am not completely alone, because I have you.

 thats a lovely story, and I agree, Ive always thought that myself. I feel that people do come into our lives for a reason, a season and a lifetime.

RM "So OK you can't have a beer but you can have lots of water right?"  I get this one ALL time time!! its insane how little people know about kidney failure!!!

[Desert Dancer]

GLM, I'm sorry you feel so alone. Andy is the only person I have; my family doesn't even know I've started dialysis and I don't know if I'll make any point of telling them. The friends we had before were 'one-way' friends already anyway, so we didn't actually lose any, but it still sucks.

  to you.

[Trena]

It's not just you. All of my friends disappeared in the months and years after I was diagnosed espically after I contracted an infection after my last fistula was placed. All the sudden I felt like I had the plague, no one but my family wanted to be around me. There are a few people I talk to online but the only people I have any real contact with are the family I live with. I asked my cousin if he would be tested and he has not spoken to me since. Even my own brother refuses to be tested.

I'm on home hemo now, but even when I was in-center no one talked to each other. It seems like everyone is so engrosd in their own world that nobody has time for each other. I was relieved to find this group because it gives me a place to talk to people who understand what I'm going through.

[natnnnat]

Its over 5 years since i had a hug ...

Need to be able to make these icons BIGGER. 

[needlephobic]

Thanks Goth they are selfish and greedy. They don't care how I feel from day to day and it sucks. All them times in the hospital no visits excet for sister. Hey KickStart if I was there I would give you a big ol hug everybody needs a hug 

[casper2636]

Nobody has hugged me for at least two years...how sad You would think I was contagious or something.  Maybe they are afraid they'd break me??? I feel deprived. Even the monkeys' in the psych. studies had a wire monkey with padding to hug! All I have is a stuffed teddy bear named Flossy Nurse ( my Florence Nightengale Teddy Bear) to give me my hugs other than that, it's this site!

[gothiclovemonkey]

We should have a meet up, and having "hugging hour" for those who would like a huggie....
hehehe just go around hugging random people hehe 

[Poppylicious]

Awww ...

I love huggles and am therefore sending humongous

*HUGGLES*

to everybody who needs one (but mostly monkeyGoth, Kickie and Casper).

 

[Mizar]

 Hey Kickstart, Move over a little Closer, I've got something for You.