I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Riki on May 09, 2017, 05:15:49 AM
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So, my friends are on Facebook right now, arranging a get together for Friday night. They all know that I do dialysis on Friday nights, so I won't be able to go. I don't think it's deliberate, but I still feel like I'm being cut from the group. I did mention that I can't do Fridays, in case they forgot, but my comment appears to have been ignored. I know I'm probably being oversensitive, but they also know that I jump at any chance to get out of the house, because my eyesight makes it hard for me to leave the house on my own. I sometimes feel like this house is a prison, and I only get out for dialysis, which isn't much of an outing.
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Yes the missed evenings is one of the biggest negative of dialysis.
Does your center have space to reschedule for a Saturday shift? I'll reschedule about once per month for some sort of event. Right now at my center it seems like they are able to accommodate me, a few years ago they could not and I'd need to go to a sister center so back then I would not reschedule unless it was one of maybe 3-4 important yearly events. Also sometimes I'll do an early AM shift so I can do an event in the evening, but I don't like that as much since I'm burned out during the day and not in top forum for the event.
So my recommendation is just ask if they have space, worst case you are where you are today, best case is you get to surprise your friends and have a night out.
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Not really. My unit is at capacity. Someone would have to trade with me for me to move shifts, and I'm on the evening shift because I'm one of the more stable patients. Sometimes they will made special accommodations for me, but only because I've been there longest and have "seniority"
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Oh, boy do I know how you feel. I stopped driving in November because of my vision and I didn't want to kill someone. I feel so stranded. I have listened to the classic book "Robin Crusoe" and THAT made me feel better. I don't have to go kill goats to eat. Now I'm listening to "Swiss Family Robinson" and that makes me feel better because I'm not stranded with 4 kids!
Listening to books on tape at least takes my mind away..... far far away.
Hang in there.
:flower;
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If you home clinic is full try talking to the social worker there maybe a patient that needs Saturday free so you can trade. If that fails contact you travel group and schedule in a neighboring clinic. If you can't get a Friday free. Check for local events run by libraries, church's, maybe some have Saturday trips to museums, plays, or in the town I have a second home trips to out of state liquor stores. Good Luck your home becomes a prison if you don't work at finding activities. Plus rember self driving vehicle. Are coming so that you can go where you want when you want.
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Maybe go back to the Facebook and add comment in the middle of their plan-making like "anyone else not able to go out on Friday that wants to go out on Saturday instead?" You never know, someone in the group, even if it's only one person, might want to go out on a different nite too rather than on Friday. Otherwise, ask one friend in specific if they will. Doesn't have to be the whole bunch in order to have a good time. Make the planning work for you. Don't wait for it. Have a good time no matter what...let someone know you need a ride and in need of some fun.
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Maybe go back to the Facebook and add comment in the middle of their plan-making like "anyone else not able to go out on Friday that wants to go out on Saturday instead?" You never know, someone in the group, even if it's only one person, might want to go out on a different nite too rather than on Friday. Otherwise, ask one friend in specific if they will. Doesn't have to be the whole bunch in order to have a good time. Make the planning work for you. Don't wait for it. Have a good time no matter what...let someone know you need a ride and in need of some fun.
Yep, I agree with this. You shouldn't have to bend over backwards to accommodate your friends. I'm hoping you can find someone in your group of friends who could make an accommodation for YOU, otherwise I guess I'm going to have to redefine "friend".
I think it is rude of your friends to make plans on facebook for a Friday night when they know you can't go. If you don't think you are being deliberately excluded, then I believe you are right, but I do believe they are being incredibly inconsiderate and completely thoughtless, which to me is just about as bad as being deliberately excluded. I simply can NOT even IMAGINE doing something like this to a friend of mine.
This has really ticked me off, and I don't even know these people. >:(
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One of them has mentioned doing something on a day better for me. There's 6 of us, so it can be hard sometimes to find a time that's good for all of us. It just seemed weird that the first day mentioned was a day they knew I couldn't go
Michael Murphy, you must have one heck of a clinic.. Travel group? Neighboring clinic? My province has 4 units, and all of them are at capacity. New patients have to go out of province to start on hemo, or immediately train for PD.. sometimes they do both, outside of the province
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I am in New Jersey and since we have for profit centers you can stand on the front lawn of my clinic and hit another clinic ran by the same company in any direction. Fresenius has 5 clinics with in 6 miles of the clinic I use.
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Living here near the middle of Missouri the population density if kinda low. It is hard to imagine one company having 6 or 7 clinics in such a concentrated area. There must be a LOT of people in order to have that many on dialysis.
Being pretty much a 'Loner' I don't know if I could stand being in such tight quarters. Far too many idiots to deal with. I see enough of them around here. My 'slap' reaction to excessive stupidity might put me in jail.
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Hi Riki!
I have been through this sort of thing before, and it sucks. To be perfectly honest, I have boiled it down to my friends not caring about details as much as I do. One friend even forgot to tell me that the rehearsal for her wedding was before the rehearsal dinner, so I missed it completely. People get so wrapped up in what's going on, that they forget things that should be at the forefront of their minds. I, on the other hand, want to know when, where and why!
Sometimes you have to cut people slack. I do hate they did this to you. Maybe they overlooked your comment that you could not go. Maybe everyone else could only go that day. Maybe what they were doing only happened on Fridays. I don't know the details, but I do think it would be good to let them know that you need to get out more. Even if you could not all go as a group, maybe a friend would be willing to go out to dinner or to a movie every once in a while with you. Or even just chill at home and girl talk!
I wish I could drive up to Canada and go to dinner with you or just hang out!! You seem like my kind of people! Hang in there!
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Long time ago I learned to Never blame some action on malice when it can easily be explained by stupidity.
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I know it wasn't deliberate. It was just a time that was good for everyone but me. They know that my Monday, Wednesday, and Friday evenings are booked indefinitely. It just bothers me when I'm not included because I spent my school years being the last one chosen for teams in gym class and partnering with a teacher during partner exercises. I didn't have any really close friends until I started dialysis as a child and bonded with my hospital room mate. She and I are still close friends. I don't like being left out or left behind, deliberate or not, it feels like I'm not good enough to be in their presence. It makes me just want to stay in my room and not come out, since no one wants me around anyway. Not true, but it's how it feels to me.
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Of course it bothers you. Of course that's how it feels to you. you may have to decide whether or not to take things into your own hands.
You can't wait for one of your friends to suddenly have a flash of empathy and make sure you are included. Will you choose to say something? Can you pick one of your group who you may like the most or with whom you feel the most comfortable and take them aside and have a quiet word with her?
I'm not sure I see any other way out of this unless you choose to indeed stay in your room and not come out. That, or cultivate a new group of friends, which is hard to do but certainly not impossible.
I'm sorry your feelings have been hurt. I don't blame you.
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Have you considered organizing one of these get 2gethers?
ps: I know the part of last picked for teams in gym class. Story of my life :)
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I'm starting to feel bullied here for feeling left out. Geez, I already said that it wasn't deliberate, and I knew it wasn't from the beginning. I have no intentions of finding new friends. My old ones are just fine. We do something like this every month or so, and there is usually someone out of the 6 who can't make it. This time it just happens to be me. It felt like MooseMom was lecturing me because I had an irrational feeling of being left out or left behind by the group. I guess the next time I'm feeling like this and feel a need to vent about it in a safe place, it won't be here
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Hi, Riki:
We come to this site because we all have same health problems. The life is tough and hard. We try to help each other. After almost 35 years of having kidney diseases, following are my two cents.
I, almost 60 years old, don't have friends now. I used to be very social. I don't tell my bosses and my coworkers about my health problems. Because I know when I am really sick , nobody want to cover part of my job even though they can. They would just say sorry. Nothing else they can do. I have to do my job. I have to deal with my problems. Why bother to tell people. Remember people like to gossip about others. They don't understand and they don't want to understand what we are going through.
Who is there for me? FEW of my family members.
I'm very thankful for Medicare and the healthcare system that I could have affordable dialysis and transplant.
Take care.
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Hello Riki,
Like yourself and Michelle & many others here, I am in a similar situation with similar problems and I have also suffered from chronic kidney disease for countless years and all that isolates and isolates and isolates again and again.
Another problem is, that I always try very hard to look and feel my very best and therefore my kidneys disease "does not really show", because I won't let it to show.
On one hand this positive attitude assists me well to carry on as best I can, on the other hand it can be defeating, as it does not show other people how unwell I really am.
I also don't tell people about it, because first of all, it could easily depress me to talk about it and then, let's be honest: who else, apart from people suffering from it and their family/loved ones really understand, what it is all about?
... I am very thankful for the healthcare system (NHS) that provides my dialysis treatment.
Mind you, today (Saturday 13th May 2017) my healthcare system (NHS) is in total turmoil because ALL healthcare-computers have been hacked and no doctors, no specialists and no NHS-hospitals in the UK can access their computers on which all medical details of all UK-residents are being kept. Because of the hacking, no NHS-computer can access any medical details of any UK-resident right now. This is beyond comprehension ...
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Hi, Kristina:
You are right. Here is my additional one cent.
I realize that usually in life everyone present themself with the best. But everyone has their own problems. At work, people don't know my health problems even though I have worked in my department for almost 12 years. I also cover other people's shift sometimes. My manager calls me " the best". That's because I don't tell them, and because I present myself with the best. So I can keep my job and insurance.
I know a few of people got fired of so called "incompetent". Because they told people at work about their health situations.
It's my personal information. I don't have to tell people.
Take care.
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Hi Michelle,
... and there is, of course, the risk anyone would take if they talked about their disease at work. Why? Because suffering from a disease and talking about it is - at work - often considered as a "weak point" and unfortunately offers itself to be exploited by the "wrong" people who just would rather have that particular job/position/promotion/career/authority in their particular career-field ...
Why bother to take such a great risk ?
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I'm starting to feel bullied here for feeling left out. Geez, I already said that it wasn't deliberate, and I knew it wasn't from the beginning. I have no intentions of finding new friends. My old ones are just fine. We do something like this every month or so, and there is usually someone out of the 6 who can't make it. This time it just happens to be me. It felt like MooseMom was lecturing me because I had an irrational feeling of being left out or left behind by the group. I guess the next time I'm feeling like this and feel a need to vent about it in a safe place, it won't be here
Dear Riki I really don't think you should start feeling bullied by anyone on this forum, and I've reread all of them in this thread. It's you who mention feeling like you live in a prison and we are all just trying to show you ways to improve the situation you sometimes find yourself in.
Love, Cas
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I'm starting to feel bullied here for feeling left out. Geez, I already said that it wasn't deliberate, and I knew it wasn't from the beginning. I have no intentions of finding new friends. My old ones are just fine. We do something like this every month or so, and there is usually someone out of the 6 who can't make it. This time it just happens to be me. It felt like MooseMom was lecturing me because I had an irrational feeling of being left out or left behind by the group. I guess the next time I'm feeling like this and feel a need to vent about it in a safe place, it won't be here
No, hold on. Please go back and look at my posts again. I'm the one who said that I don't blame you for feeling as you do. I'm the one who expressed anger at who I think are your thoughtless friends. I am really sorry if my post about finding new friends hit you the wrong way; I certainly did not mean to lecture you! I was being a bit flippant because your friends' thoughtlessness really pissed me off. Jesus, I'm the one who AGREED with you!!! I don't think your feelings were irrational at all! I think you were feeling like most of us would feel. And to be clear, I never thought for one moment that your friends were leaving you out deliberately! I WAS AGREEING WITH EVERYTHING YOU SAID!!!!!!!!!!!
I do hope you can find a way to let your friends know that sometimes you feel left out, and I am sure they will listen to you and will try to make amends. I'm so sorry you feel bullied here, and I'm really sorry if I am the cause of you feeling that way. I trust you to work things out with your friends! Take care!
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Sometimes people fail to think. Many of us are all guilty of this. Your friends may simply be failing to consider how you may feel by their choosing a particular day that may be more suitable for them, but not for you.
I am somewhat surprised if after this is pointed out, that you are unable to attend that particular date, that they would still yet continue with leave the date set without adjustment.
There is a T-Sirt we had when our Son was but a baby. Spit Happens.
There will be other get-togethers. Sure it may have been good to attend this one, but Life gets in the way to often.
Someone, someplace, sometime ago, could attend an event, but sent a couple of those cheap cameras. I don't even remember the name of them. Film in a small box camera that take surprisingly good pictures. You drop the whole camera/film off to be developed. Disposable camera. Anyway, the deal was these cameras were passed around amouong the people at the thing, each taking a few pictures of the others. All the film ended up used, the camera returned to the person that couldn't attend. That person then was able to have all these pictures of everyone and everything. Not near as though being there, but still provided many momentos.
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I was left out of several events for my work place due to dialysis conflicts. If I went out of my way to change my schedule it turned into a royal clusterf** for me.
I told work people I could not come MWF, yet that is when parties were scheduled so I missed out on them. I also could not stay after school for meeting ont hose days and guess when most meeting were scheduled?
If I want to change a shift it is sometimes an act of God that will get the shift change for me. I just work with what I can do and what the center can do. I have been there a long time and they know I know how things work.
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I had a weekly get together (that I started) every Wed night, that continues to this day. Since I only get two nights off the hose, I have chosen to spend them at home with the wife instead of keeping up with the Wed evening crew. Just one of those things that happens when D is a big part of your life.
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it's not always easy to schedule something where all of us can go... we all have our own thing that we do, well, except me..
Ml has 2 kids and a job with odd hours
Mn has a teenager and works full time
J works for the govt, and can be out of town a lot because of it
Ch is unreliable. We usually tell her where we'll be and sometimes she shows, and sometimes she doesn't
Cl moved out of province. Something is always planned for when she is home, usually sometime in the summer
Then there's me and Mom, and Mom just follows me wherever I go
Friday was the only night that Mn had off work.. Cl is still in Ontario, so she wasn't there either.. I think it was thought that it would be just Ml, Mn, and J, but Ch showed too, for a change.. it was suggested that something else be planned on a day that I could go, but nothing else was said about it.. I'm kind of hoping that something can be planned for my birthday in a couple of weeks.. I asked them to come out for ice cream with me for my birthday one year, and J was the only one to come.. I may see if anyone wants to do a coloring and coffee date.. I got some new pencil crayons for Christmas and haven't taken them out for a test drive yet.. *L*
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A coloring a coffee date for your birthday! That sounds like a lot of fun. My husband bought me some high quality. artsy fartsy pencils and coloring books several years ago for Christmas, and I quite like them. I don't have a creative bone in my body, so these things help me pretend that I do! :rofl;
I hope you have a nice birthday and that you can enjoy it with some friends. Have a great time!