Drained of everything...

[beckums70]

Hey guys,

I haven't stopped in lately at all.  Life has been very busy for me, between my job, helping my 2 adult children out with all their life changes, helping with my granddaughter and raising my 9 year old son.  I've been on PD for 3 years now, and compared to the rest of my life lately, hooking up to a machine at night feels like just a little bump in the road.  I don't even have time to think about myself lately, which in a lot of ways is good, but I'm starting to feel so drained, and I don't think there's anyone who could really understand how I feel.

Financially I have handed over far more to my adult daughters to help them buy food, fix their cars, pay their bills than I should have.  Neither of them are irresponsible or take me for granted.  They try to pay me back quickly and usually always do.  That doesn't negate the temporary financial strain or worry that I am in while I'm waiting to get money back from them, which usually trickles in, in small amounts as they can afford to pay it.  My oldest is 25 a workaholic and pregnant.  Her significant other recently revealed an addiction and was shipped off across country for three months to go through rehab, leaving her alone with all the bills (he stole thousands from her shortly before this revelation).  I've helped her move into a new, cheaper place, that is really below the standard of how she should be living considering how hard she has worked and the fact that she's pregnant.  Second daughter is married happily, but financially struggling, especially when big unexpected things hit, like a car repair.  She also struggles with anxiety and recently had a panic attack because my sister got her worked up over my dad's health.

Speaking of which, my dad is recently residing in a long term care facility after his level of care has progressed to that which my family cannot handle at home. This has caused a great deal of conflict among my sisters, who try to drag me into their arguments.  I refuse to be part of the problem, and in trying to remain part of the solution I've found that I am completely forced to isolate myself from my family of origin.  That is not easy, although I have not been close to many of them in years, I do miss the friendship and support of one sister in particular who has become the family pot-stirrer to which every family conflict can be traced back to.  I have done my best to go see my dad as often as I can, but I end up feeling terribly guilty nearly every day when I am just too tired or too overextended with work or my kids (or fatigue) to make it over. 

Work is especially stressful lately.  I work at a senior center for independent seniors.  Most of them are high functioning folks, but recently we've gotten an influx of seniors with early to mid-stage dementias.  I have a background in dementia care, but the center I work in is not exactly designed for this population.  Oddly enough the seniors themselves are less of a stressor than their family members who are all newly involved in the care of their parents and who are quite exhausted, emotionally drained and constantly challenged, worried and in the middle of some kind of conflict either with their confused parents or other family members.  I find myself on the phone after hours answering questions and giving counsel to these folks, in addition to spending extra time at work listening to them and trying to help them find solutions for the issues at home with their loved ones. 

Best friend is lovely, but really clueless about what my life is like. She has no kids, is physically healthy and financially quite secure.  She's newly divorced and I just helped her move in July, am helping her move again in 2 weeks as she has just bought a beautiful new house.  I'm happy for her, but I dread helping her move again.  She has been asking me to help her find repurposable furniture for her new place and I've been doing my best to help her out.  I went with her to some shops yesterday, even though I felt like I was too tired to stand, and went with her to walk her co-worker's dogs as well.  She and both my daughters all take turns doing laundry at my house, and at least once in the last two weeks I realized I hadn't been able to use my own washer and dryer so long that my son had no clean clothes for school.  I ended up staying up very late getting some skivvies clean for him to wear the next day.

My son's birthday is this week and I'm trying to plan a party on a shoestring, with the pressure of Christmas coming and winter coming (heat bill) and knowing that my car is  soon going to need some major repairs that I was trying to save until after the first of the new year.  Car problems have been compounded by my daughters and son in law putting extra miles/strain on it during the time that their cars were in the shop. 

I am thankful for a supportive coworker who has let me borrow a vehicle for nearly a month now and has been very gracious about me keeping it so long.  If not for that, my life would really be in the crapper right now.

The biggest news?  I am listed for transplant as of September 1!  The scariest part is I've done nothing to prepare. No fund raising, no arrangements for my son, a car on the blink, and a primary caregiver who is pregnant and spending 12 hour days in school--enrolled in a probationary program (financial wise) that dictates that if she misses more than 2 of any class during any given semester, she will have to pay back her loans in full.  That means no taking off for 2 weeks to go get a kidney with me and it means that I will be "on call" as well, when February comes and the baby is about to be born.

I know I sound whiny as hell.  I shouldn't be.  I can get a kidney, possibly soon if I get my ducks in a row.  I just have no idea where to start.  I have kids who love me to pieces, and friends who love me as well.  I have a great job that I look forward to every day, with a group of human beings that are some of the best I've ever known.  Although my dad is in a nursing home and has dementia, he is closer to me than he was when he was at home, so I do get to see him more.  I really enjoy my little house in the country with a big yard and all the character of an older home. 

But I am feeling sucked dry.  Like if one more person asks me for one more thing, I will just collapse in a heap on the floor.  I know how to say no, and often do.  It just so happens that most of the things I end up saying no to are things I want to do.  Like going out to dinner with girlfriends on a Tuesday night--but that's hard to do when I have to be on a Machine by 9:00 at the latest, in order to get my kid to school on time the next day....

Anyway...I feel like my dialysis center hasn't a clue because most of their patients have caregivers or spouses and don't even have jobs.  I know I am an anomaly to them, so when I complain about the nurse who leaves huge bruises on my arms that I have to explain to my seniors and employer without revealing too much about my health situation, I can't expect them to empathize with me. 

I apologize for being a downer...I admit, I do feel better just for having gotten this out of my head and in writing somewhere.  How do y'all cope with the fatigue and constant demands from life?  Does the financial devastation of this disease not make y'all feel kind of hopeless sometimes? Because it really, really gets me down when I realize I'll never own another home again. 

I'm really tired.  Not depressed yet, but I feel it hovering over me.  My anxiety levels are off the charts lately, and I'm hesitant to bring that up with my nephro...I take a tiny PRN dose of Xanax every day, but it's not really doing much to help.  I feel judged when I ask for medication to help with my anxiety and then I get anxiety about bringing it up.  What a vicious freaking cycle.

Ok. I'll stop now.

[Michael Murphy]

Holy crap!!!  I have heard of people burning thr candle at both ends but you have reached a whole new level of pyromania.  You need to take care of your self.  ESRD is not a joke it's a butt kicker by itself.  Your family needs to know that the last thing you need is more stress.  If you get sick it sounds like everyone is screwed.  Between work and treatments you are booked add in sleep, and it get tough.  Help your children with money but keep control of the demands for your time.  Good luck, you family is lucky to have you.  Please take the time to care for your self also.

[beckums70]

A lot of people depend on me, for sure.  I guess I never really thought of it that way, but when you factor in my job, my kids, the additional job related stuff I'm handling lately--my Bff needing me more lately and my dad's situation, well, there's no time left for me. 

One unusual thing about today was that I didn't have company or end up babysitting my granddaughter, as is usually the case on Sundays.  Daughter and BFF both came over yesterday to do their laundry, so for once, I had my home to myself (and my son).  We stayed in PJs all day which was nice but then I end up feeling guilty that I'm not out doing things with him when I have the chance, or that I'm not visiting my dad or checking up on my oldest daughter, whom I worry about constantly...

 I realize that even when I do have a chance to unwind and get some rest, I make myself feel awful about it.  I wish I knew how to stop doing that and just enjoy some down time without guilt.

[Charlie B53]

You need to share this post with Family.   Most of them haven't a clue of the stress you put up with daily.  Much of it added by them.

Granted, some of those are the normal requirements of parenting, no matter what their ages, they were once your Babies, and you will always try to provide for them.  But they do need to learn to appreciate your efforts.  That one thing would help ease your mind a lot.  They would also realize that they can do some of the little things that would help you out.  Like doing your laundry.  That would be thanks for letting them use your machine, supplies, etc., to get their's done.   Lots of little things slowly begin to add up, making you get to take a breather once in a while.

[MooseMom]

I am sorry that your life is so difficult, but I am glad that you've described it here on IHD and that has made you feel better, at least for a bit.

Congratulations on being listed!  That's fantastic news!

The whole of the picture seems overwhelming, so if I could make a suggestion, I'd say that perhaps the first thing you could do is to work on enjoying the little down time you have as opposed to feeling guilty whenever you have a few hours to yourself.  If you undermine the emotional value of your downtime, you will lose the strength and viability of the coping mechanisms you do have.  You cannot always control the lives of other people and how they impact you, but you CAN control what you do and how you feel about your "me" time.  If you are able to do this, perhaps you will feel more able to deal with the onslaught of family dramas and work issues.

 

[beckums70]

Thanks for your responses.

I really want to learn to enjoy my down time.  I feel so much pressure to do so many things, not because other people are pressuring me, but because I know time is precious. My boy is turning 10 this week! I feel like I've lost so much time with him to this disease and because my life has been a roller coaster since he was born.  I don't want to lose more time with him by lazing around the house when we could be doing things together.  There's where the guilt comes in.

My daughters do things here and there to help me out. The youngest kept her brother for 3 days last month whine I went to the beach with my best friend. Here's the thing though, we ended up going during the first week of school.  I really didn't want to go at all, for a lot of valid reasons, but I went fur her because I knew she had been looking forward to it and even though her parents allow her to use their vacation home any time Sounds good! Wants she would never go alone.  None of our other friends could go with her this year, so that left me. 

I guess I'm feeling like I do a lot for other people, a lot of putting myself out and I'm feeling like there's no one to understand what I need or to give back to me in ways that give back some of what I'm expending....I don't even know if that makes sense...

Alarm goes off in 2 minutes and the rest of my day belongs to everyone but me!

Y'all have a good one!

[kickingandscreaming]

Alarm goes off in 2 minutes and the rest of my day belongs to everyone but me!

Only if YOU let it.

[beckums70]

Well, I did try not to "let it", but that didn't work out too well.  Ended up staying over at work for about an hour listening to a family member talk.  He was last picking up his mom and just sat down and started chatting as though I had nothing else to do.  I eventually said that I had to get to my doctor appointment and he left so I could leave.

Doctor appointment was because somehow the lab ruined one of my blood tubes last week so I had to go have blood drawn again today.  It's about a 40 minute drive to the clinic, so not too much fun.  Daughter went along so we could go by the craft store and get stuff to make granddaughter's halloween costume.  After that it was time to pick up my son and go home for homework, dinner and now, bedtime.  It seems like once the day starts I get carried along on the wave.  Most day's that's okay, but lately my level of fatigue is making it difficult.  Plus, I've never been much of a deep sleeper, so sleep deprivation is surely playing into this...

Tomorrow...should be better.  Crossing my fingers anyway.


On another topic, do any of you have thyroid issues secondary to ESRD?  I am beginning to wonder if perhaps I am experiencing some symptoms of low thyroid hormone.  Hair loss, extremely dry skin, increased anxiety and fatigue, wanting to sleep more--not to avoid life or anything, but because I'm just so darned sleepy.  But then when I do sleep it's not very restful sleep...also, been having some palpitations on and off all throughout the day and night.  They've tested me before and said my labs were "within range" so I wonder if it's even worth bringing up again???

[kickingandscreaming]

do any of you have thyroid issues secondary to ESRD?

I do.  And i've had all the symptoms you describe. But it's really hard--in this disease-- to sort out which is doing what.   I recently had my thyroid tested and the dosage increased.  I think it has helped me lose a few pounds, but i'm not at all convinced that it had improved my energy/stamina/enthusiasm.  I could still spend the whole day in bed.  I don't, but it's a struggle.  Of course, i have also been going through a spell with low Hgb, so that does many of the same things. Hard to judge.

I just want to say this:  If you don't pur up some  boundaries and learn that YOU COUNT, you could sink inro burnout, and it's a lot harder to dig out of it than it is to not fall into it.

[Michael Murphy]

You sound like a nice person, you place the needs of others high on your priority list, normally a good thing  But you spend a day relaxing and you feel guilty.  Everyone needs time to recharge and rebalance their life,  if all you do is give eventually you end up with nothing left.  Just by continuing working you have taken a greater load than most dialysis patients.  I worked for the first 30 months on dialysis and it was tough.  Life is tough enough without added pressure to do more.  You have been a truly good person, but instead of enjoying your accomplishments you nit pick your perceived short comings.  You need to celebrate what you accomplished.  It seems that you have done all that is possible to help everyone but yourself.  .

[stayingalive]

Sometimes just coming here to vent is a stress relief in and of itself.  You have people here that understand your situation somewhat as many are in the same boat.  Trying to adjust to working, family life and friends while at the same time not having the time to do me time.  You need to have YOU time to just relax and unwind and NOT feel guilty.  When you do that do you really enjoy yourself or are you thinking of everyone elses needs still?  I am not going into it much because I agree with what other posters have provided you from their insight.  You need to just start making me plans....set a schedule per se if you can.  Start saying no more when you don't want to do something compared to doing something you enjoy.  You need the enjoyment time yourself...sometimes life can be overwhelming but if friends and family understand what you go through maybe they would understand more.  I hope You have been able to SMILE and feel better about things a little bit each day!!!

[kristina]

Hello beckums,
I am quite surprised to read what you are able to do despite being in ESRF!!!  How on earth are you able to do it all?
... And where on earth do you get all the energy from? ... Reading about what you are doing on a regular basis makes me almost a bit dizzy....
... I do hope you get the chance to take things a bit easier in the future because after all, you ARE in ESRF and YOU could really do with a bit more care and compassion around you ...
... Please take great care of yourself and please take things a bit easier in the future and please look after yourself and please don't forget to treat yourself whenever possible ...
...  And good luck on the waiting-list ... and all the best wishes from Kristina.

[KatieV]

One unusual thing about today was that I didn't have company or end up babysitting my granddaughter, as is usually the case on Sundays.  Daughter and BFF both came over yesterday to do their laundry, so for once, I had my home to myself (and my son).  We stayed in PJs all day which was nice but then I end up feeling guilty that I'm not out doing things with him when I have the chance, or that I'm not visiting my dad or checking up on my oldest daughter, whom I worry about constantly...

 I realize that even when I do have a chance to unwind and get some rest, I make myself feel awful about it.  I wish I knew how to stop doing that and just enjoy some down time without guilt.

I think you said your son is 9?  Have you talked to him about it?  I know when I was younger that it was fun have those types of days once in a while.  PJs, movies, snacks, board games/puzzles - it may feel special to him because you are doing it with him.

[beckums70]

Hello and thank you for all your thoughtful replies.

Last week was pretty rough with my son's birthday and all the planning involved with that.  I've decided that there is definitely something going on with my body in addition to ESRF.  I've been on dialysis for 3 years and I have never struggled with fatigue the way I do lately.  I've noticed that a day doing routine errands exhausts me far more than it reasonably should.  I was out with my daughter a few days ago, after work, gathering supplies for the party and I got to the  point that I couldn't keep going.  I had to just tell my daughter I needed to pick up my son and go home.  I had to get up early the next day and get the cake and everything else I needed for his party. 

I did get to attend my other daughter's ultrasound on Thursday and found out I'm going to have a little grandson in February.  That was very exciting, but again, turned out to be a completely exhausting day.  I used to be so much more active than I am now, so maybe these days, like today, when I end up on the couch all day make me feel terrible because a couple of years ago, I would have been in the great outdoors doing things with my family.  I was so wiped out from the party last night that I have been out of commission all day today.  My daughter sent me a text at 9:00 a.m. asking me if I would keep my granddaughter overnight tonight and I had to say no.  I don't feel guilty about that, but I do worry that she will feel like I don't want to spend time with my granddaughter, or that I don't want to help her out.  That's not it at all, I just don't have the energy.

I didn't bring up the issue of my suspected thyroid issues with my doctor.  I feel like he's going to think I'm a hypochondriac or something because I've mentioned it before and was tested but my blood work came back within normal range.  I've read though that people often have blood work that shows normal ranges and still have issues with low thyroid.  I wonder if it will even do any good to have it checked again.  I was looking at photos of myself from a few months ago, and my skin and hair looks markedly different, so I know it's not just all in my head.  The exhaustion is hard to explain...it's overwhelming.

Tomorrow I'll take my boy to spend his birthday money.  That should be fun, and hopefully I won't be too sluggish.  I think I do a pretty good job of faking feeling good when I have to because no one seems to notice that I'm literally dragging my feet a lot of days.

Being tired all the time sucks.

[kickingandscreaming]

I feel your pain.  I am equally exhausted at all time without nearly the demands on my time and energy as you describe.  Upping my thyoid hasn't helped with that one tiny bit.  I feel like a limp noodle.

[beckums70]

I'm really sorry you're so tired all the time.  Is your hemoglobin low?  Mine is always really high and I've never had to get EPO, although I have had to get iron a few times.  Last month's labs my hemoglobin was good so no iron.  I can usually tell if my fatigue is coming from low iron.  This is really different.

[kickingandscreaming]

No.  My Hgb had been struggling in the 8's, but has been climbing back with the help of EPO.  I have no idea what is happening.  But I do know it sucks!  Here's hoping for a bolt of magic to  bring us both back to life.

[beckums70]

Indeed!  I hope someone stumbles across some of that magic for both of us!

[PrimeTimer]

Sounds like you are surrounded by people who are capable of doing for themselves but have gotten comfortable with turning to you for help. Time to put your foot down and make yourself a new list of priorities with YOU and YOUR SON at the top of that list. Perhaps tell them how tired you've been but maybe mention that later on after you have a transplant you will be able to do more. Doesn't mean that some rest and perhaps more lab work might explain your exhaustion but putting it to them that way (about the transplant) they might realize that they need to let up on you. I'm not saying you should play victim but rather, point out that for someone with kidney disease, you have been doing A LOT and perhaps you need THEM to help THEMSELVES a little more and maybe even help YOU now. Easier said than done...for all kinds of reasons I've had to put my foot down with some people and they didn't like it but nonetheless, it took some pressure off of myself and I don't regret that. You certainly do lead an active lifestyle and sounds like you've got a wonderful life to live, please don't let others guilt you into thinking otherwise. Even if you were to only do one or two things a day, you should feel a sense of accomplishment and be allowed to own/enjoy it. 

[beckums70]

I don't feel like I have a life full of leeches, but my children really don't seem to get how much the disease process affects my energy levels.  After I had my son 10 years ago, my GFR dropped significantly, though temporarily.  I wasn't on dialysis, but my body had really taken a beating with that pregnancy, toxemia, etc...It took me well over a year and a half to recover, yet everyone expected me to bounce back as if I were 20 and in perfect health.  It was a tough time period and my parter at the time and my two teenage daughters were very critical of me and my struggle to work full time, care for an infant, care for them and deal with an abusive, lazy partner who refused to help with anything.

Now I think they're so used to seeing me power through things that they it doesn't quite compute when I'm too tired to keep going.  Maybe I do need to be more upfront with them and just tell them that I have limits that I didn't used to have.  I hate feeling so tired, and I hate being so limited in my ability to keep up with life.  In a way, I think Powering Through has saved me, but perhaps at this point it's doing more harm than good.

I do think I need to have some blood work or something to determine if something else is at play here, since I'm having other strange symptoms and this seems to have almost abruptly hit me from out of nowhere. 

This weekend has been a lazy one and I'm trying to not make myself feel terrible about not doing more by reminding myself that once Monday hits, the week is going to swallow me up and spit me out!  This is a big week at work, so I know it's going to be rough.

I want to start keeping a tighter routine.  I'm hoping being more organized at home with our time will be helpful to both my son and me.  We'll see how it goes!

[kickingandscreaming]

I think you need to sit down with all the people in your life and be honest with them that you are a human with an illness and limits.  First though, you need to convince yourself of that.  In broadly simplistic terms, there are 2 kinds of people in this world: givers and takers.   People who give,  give and  give tend to attract people who take, take and take.  Your family will continue to take everything you have as long as you are so willing to give without taking care of yourself and setting limits.  You have trained them to expect from you and they will continue to expect until you set the record straight.  They won't like it, but actually, your life depends on it.

[Fabkiwi06]

I think some of your symptoms are because you are firing on all cylinders! I'm exhausted just reading your posts!

I did have similar issues a few months back - hair loss, fatigue, thyroid panel (and extended thyroid panel) came back fine... Ended up being general adrenal and hormonal imbalances due to the ESRF combined with the fact that I was also under massive amounts of unrelated family type stress. I think since I would "feel fine", I would almost go in to a sort of denial about the fact I was sick and push myself a bit further than I should have. If you do that long enough, it does catch up with you.

I think that you need to draw your boundary lines and make them clear. You have a chronic health condition. Of course you want to continue taking care of the family, but part of taking care of the family means taking care of YOU too.

I think it would also be useful to speak to your doctor and clinic social worker and see what resources they have hidden in their pockets. I'm sure you're not the only patient of theirs who has been in a situation like this. 

[beckums70]

DaVita nurses and social worker do not seem to "get it" at all.  I think I am one of the youngest patients they have and possibly the only patient with a young child and a job.  They seem to not understand that when I have a doctor appointment at 2:30 I'm rushing like hell to get there because I don't get off work until after 1:00 and work/live about 40 minutes from the clinic, and that's on a good day without a ton of traffic.  Then they keep scheduling my labs for the first Wednesday of the month, which happens to also be the day I have a monthly staff meeting at our main office which is about 20 miles from where I work every day, and about 10 miles from the clinic.  So I rush to the clinic to get blood drawn, which takes a long time some days because I'm not an easy stick, and then I have to hurry to my meeting after that.  And they wonder why my BP is sky high every time I come in!  On top of that, I have one nurse who bruises me terribly every time she draws blood, leaving me having to answer a lot of questions from my seniors co-workers. 

They don't get that I can't do a 24 hour urine specimen on Monday because I'm at work most of the day or that I can't run home to let the Baxter guy in when he shows up 3 hours before the scheduled time, while I'm still at work, although I've told Baxter repeatedly I cannot accept deliveries before 1:30--and that's pushing it.  A few times, they've shown up early and unpacked my stuff on the front porch, so me and my small son have to bring all those heavy boxes in and put them away ourselves.  It's really ridiculous.

It must be fairly uncommon for peole to continue working while on dialysis?  Or at least it seems that way where I am because I am treated like some kind of strange specimen that they just can't understand.

[SooMK]

Like the other posters my mind is spinning that you can handle all of this. Imagine what happens if you implode and all these folks have to carry on while you recover in a hospital? Perhaps a family meeting so you can share with your family what you've shared here? Your family loves you and knows how much they need you but they are used to you never having any limits on how many burdens you can carry. If you ask for help and brainstorm ways to ease your burden you might be surprised. I loved the suggestion to have the laundry room users do your laundry. Small things like that can help you but also help your family feel they are involved in a trade, not just taking from you. I wish you the best and hope that transplant isn't too far away.

[justagirl2325]

It must be fairly uncommon for peole to continue working while on dialysis?

I think this is true.  From what I've observed watching my husband go around for two years in this circle of endless appointments, doctors, nurses, surgeries, infections, allergic reactions, not to mention dealing with diabetes I think many people just give up working as it's too much.  We have not yet met another working dialysis patient.  My husband, up until the bypass surgery, was working 6 days a week as it is his passion, he lives to work. 

Earlier this year we tried to get access to a government grant that would pay for a new insulin pump (about $8,000).  Sure, no problem, he would just have to come and meet with their endocrinologist monthly for a year so that the government would have a record of his A1C for a year.  We tried to provide them the A1C reports we had from his family doc or neph - nope - need monthly visits. 

It's just too many appointments.  He's lucky to have an employer that understands sometimes he is late in the am as he cannot get started, and sometimes he's there at 7am.  That he may have to go in for dialysis on a moments notice if we have trouble at home, that he has to see his family doc four times a year or he will drop him as a patient, that he's had 20 days in hospital this year, that he needs to see his eye doc four times a year - really now you want to add another 12 so you can check a box on your government form.

We just bought it ourselves.