Getting on with life

[MooseMom]

I am finding it hard to get on with my life right now.  Ever since my fistula surgery, I have not felt well.  I get tired so much more easily and in the evenings, I feel something akin to motion sickness.  My gfr is 17 after being in the low 20s for years; it was 17 before the surgery and 17 after, but I feel physically worse.  My arm is not as painful, but I still experience constant discomfort, and maybe that has something to do with it.  Anyway, I used to volunteer at the local hospital...4 hours every other Monday morning in the family surgical waiting room.  I haven't been able to do that job lately because of various things, but I want to do something because I want to fight this feeling of isolation I have.  But I don't know if I feel physically well enough to do anything useful, and with all of my transplant list-related tests that I have to do (including surgery for gallbladder removal), I don't know how much of a commitment I can make. On top of that, I don't know when I will have to start dialysis; it could be next month for all I know. I emailed the volunteer coordinator, explained my situation and asked if there was anything I could help with under these constraints but I have yet to receive a reply.  But I am posting because at the moment, I feel pretty useless.  It takes me forever to get things done.  My son is here from London; I get to see him only once or twice a year, and I don't have the energy to keep him engaged, and he is going to leave soon and I will feel like he's never even been here.  He understands as well as he can that I am not feeling too brilliant (he's Asperger's), but it all makes me feel like I can't be a good mom, wife or community citizen anymore.  I just wondered if anyone has any suggestions on how I can rejoin the world under these pre-dialysis circumstances.  Thank you.

[paul.karen]

I think your last sentence is the answer to your question/thoughts.
Pre-dialysis circumstances.  From what i have read and felt myself prior to starting dialysis was the tired washed out feelings.  Along with being sick in the mornings ect ect. 
Also when one starts dialysis usually depends on themselves again from what i have read and my own experience.  My Neph told me he couldn't tell me when i was ready to start but rather i would tell him.  (less a medical emergency).  Like most  people who have yet to start, there is usually still  some kind of denail about the whole thing.

I also would like to say if your feeling to down to fully enjoy your sons visit i wouldn't worry much about doing community services at the present time.  When YOU FEEL better then you can start to help out when and where you can.  For now i would suggest just worrying about you and your family. Dint over exert yourself.  Your not useless by any means you are feeling the effects of ESRD.

Wishing you all the best MM.
Hope your arm pain continues to fade away.

[MooseMom]

I agree with everything you've written, paul.karen.  I know that your PKD has meant that you have lived under the shadow of CKD for a long time, just like I have with my fsgs.  We both know how stressful chronic disease is.  I personally have found, at least so far, the emotion stress to be far more crippling than any physical discomfort (of course, that can quickly change), so my main struggle has been my state of mind.  I don't think I am in denial, but I don't think I am quite ready for dialysis yet; my fistula has not matured yet, and I've just recently started feeling like I really do have ESRD.  I know that dialysis will come, but in the meantime, I am not willing to spend my days just waiting for my kidneys to finally completely fail.  I will enjoy these last few days with my son, but once he is gone, I will have time on my hands that I don't want to spend in isolated misery.  But maybe you are right...maybe I should put off volunteering for the time being.  I just thought that getting out of the house and being of some value to someone might get me out of this pity party.  Thanks for the advice.  See, this is one of the many things I like about IHD; it give me the opportunity to ramble a bit and sort out my thoughts...sort of a sounding board.

[okarol]

MooseMom,
You're not alone. You have us! 

[MooseMom]

And that is no small thing, Okarol, but I'm not of much help here.

[Choosin2bHappy]

I am new here..and from what I see these folks are wonderful..I am not undergoing dialysis but my brother is and I hear him say the same things you are..he feels badly and he cant do much of anything yet...and I tell him this, hang in there..find comfort in the things you can do, whether its slow or not because someday it wont hurt so much and you WILL feel better. Keep looking forward on the bad days. Your son loves you and he understands. You being sick doesn't define how good a mom you are..and the fact that you are not feeling well and are more worried about entertaining him on his visit speaks volumes about you..you are very caring! I will keep all of you here in my prayers. I pray for a cure and for technology to catchup everyday.  Sending you a big hug!

[paul.karen]

   good answer and  to IHD C2BH....

[galvo]

MooseMom, not feeling well, getting tired easily, feeling useless etc etc etc. You have just described how I felt pre-dialysis. Now, 5 months later, the improvement is something wonderful. Some not so good days, but the good days far outweigh them. You hang in there.

[monrein]

And that is no small thing, Okarol, but I'm not of much help here.

That is totally not true MM.  You raise issues that concern us all and through the ensuing discussions we all get to know ourselves better I think. 

It is hard to struggle with the feelings of uselessness in the world compared to when we're feeling really well but compassion and understanding of ourselves is a valuable thing to learn that won't be wasted if we're lucky enough to get old, hopefully really old.  Like my mother-in-law who is an active 91 year old but obviously things are very different for her than when she was 60 or 70 or even 80.  I'm one of the few people my age in her circle who knows first hand about the fatigue, the need to rest and to manage one's energies. 

I found pre-dialysis extremely debilitating and I felt much better once I started getting sufficient dialysis.  I started D at 16 GFR because I told my neph I just couldn't carry on feeling so wretched. 
I have experienced and struggled with the exact feelings that you describe MM.  I used to say that I felt like folding myself up and tucking myself away in a drawer or cupboard somewhere...useless and not even good enough to be out in the open.  Not depressed, but fatigued beyond anything I could previously have imagined.  I found it much easier the first time when I was only 26 but it had crept up on me more slowly too and it was only after starting D then that I realized how little reserve I was running on.

I feel so very sorry that you're going through all this ESRD business MM, like I feel for all of us who must do so, but I'm extremely glad that you're on this site to share your thoughts and experiences although these are clearly clearly more valuable from my perspective than from yours.   

[Sunny]

You have been through a lot of surgeries recently and you need to give yourself time to heal Physically.On top of that, you have a gallbladder surgery coming up which means you need to give yourself time to heal so you can be in the best shape that you can for that surgery. Should you get a transplant, again you will need to be in the best shape that you can be, physically. That means you need to slow down and allow your body the time it needs to heal. Listen to your body because it's trying to tell you something.  Don't push yourself too much right now. Things will get better with time. Your son is probably so happy to just be with you and doesn't expect to be entertained.

[MooseMom]

I'm confused.  IHD is a wonderful place in which to get support, exchange ideas and present experiences.  But the downside is that you get to hear about the wretched and ugly aspects of dialysis.  I knew D was hard after watching my mom deal with it, but now I know how brutal it can be.  I read about crashing, vomiting, bad techs, buttonhole problems, failed fistulas, problematic fistulas, LVH, anemia, hair loss, skin dulling, infiltration, osteoporosis, low life expectancy, depression and the many other things that go hand in hand with dialysis (and that's not even counting the challenges of PD), and I am supposed to believe that life will get BETTER on D?  Really?  I know that I have no choice if I want to live, and having no choice is somehow supposed to mean that I am expected to be grateful, gracious and accepting, but it doesn't mean that I have to lie to myself, does it?  If you all say that life is so much better now that you are on dialysis, well, I hope you are right and are not just making stuff up to placate me.  I guess I don't expect you to say anything else, really.

Trying to get on the transplant list, and then if successful, awaiting my turn, and at the same tiime trying to teach myself how to do my own dialysis at home...I don't know if all of that will result in making me feel less like a mere lump.  I just honestly, honestly cannot see how life is going to get better.  I want so much to hope for a better future, but I have been so awfully disappointed so often in my life that to hope is to make myself vulnerable to more disappointment, and ...well, that's all

[paul.karen]

MM

You are FAR from a MERE LUMP  ..

One thing that may make you think dialysis is worth it is the fact that if not for dialysis likley you would have never heard of any of us. (many of us would likely be dead).  If i can be so blunt.

I think many of us have felt pretty much as you are feeling now.  All the what ifs.  And of course the unknown can be a big fear.

And i hear what your saying about IHD hearing all the good stories is great.  But with that hearing the bad stories and sadly there are many, should let you know that the stories are real in all aspects.
They say after you start D you will feel better.  I was a bit skeptical but i was on the verge of quitting myself.  I couldn't do my job well, i figured i may as well quit and get on medicare and collect SSI.  I was ready to just give up.  Thank god i didnt i figured even though my numbers wernt terrably bad that maybe i should start Dialysis.  I mean i was ready had the tube in place and thanks to IHD i had my head in the right place.  But i was still unsure and very weary of my future.  So i started and within a week or so i actually did start to feel better.  My energy came back and work got easy again.  I could finally feel and see the difference.  I still have off days but life has come back to me.
I think with many at least with me that the disease hits us so slowly that we dont really feel how bad we actually are, until we start to feel well again.

So you dont have to lie to yourself.  You are sick and you are starting to feel the effects.
I dont think we are trying to placate you :-) 
Life truly did get better for me after i started.  As i am hopefull it will for you as well.

[st789]

Damn fatigue....  That is why we have to monitor our energy.  Thanks for sharing.

[MooseMom]

You may not believe it, but I do understand the concept of watching one door close only to have another open.  I do realize that sometimes, if you are courageous enough, adversity makes you reach out to others and helps you to learn from them.  I've met many interesting people here who have taught me many things, and for that, I am extraordinarily grateful that dialysis even exists.  Sometimes I forget those lessons and must try harder to keep them in mind.  I have to remind myself that fatigue saps your spirit and can lead to depression.  It does slow you down.  But to show you that even that can have some value, on my daily walk today, I didn't concentrate on how fast I was walking or for how long; instead, since my body has forced me to take things slower, I just enjoyed looking into people's gardens and enjoying the colors and the fragrances.  Being slow has its advantages.

Thank you for your post, paul.karen.  I work very hard to try to stay optimistic or at least distracted.  But you know how when you learn a new word, you suddenly see it everywhere?  It seems like people with kidney problems are coming out of the woodwork.  My husband's secretary (let's call her "Mary") sent home with him an article from the Sun-Times about a woman who was given a kidney by an altruistic donor.  The article started out by explaining in mass media terms that dialysis would mean that she would probably live only another 5 years and would miss her chance to have a baby.

[MooseMom]

pt 2.  Now, Mary knows about my ESRD and that I am headed for dialysis, so why on earth would she send me an article that explained the vastly abbreviated average lifespan of a dialysis patient? (The kicker of the story was that the man who donated the kidney had a wife who agreed to be a surrogate for this woman who received the kidney, so she got a kidney AND a baby from this couple.  A truly extraordinary story!)  I had spent the day just trying to get on with life, and then I was emotionally assaulted out of the blue before I could construct some sort of psychological shield.

I do want to make it clear that I do not want people to edit their posts out of fear of scaring someone like me.  I've actually done that very thing...not posted a question or a concern because I didn't want to scare the several posters who I knew were about to go through what I had just been through.  But thinking back, that's not productive because I think it is important to share as much as possible because you never know who might be lurking and is thinking, "Yes, that's how I feel, too!"  So I do appreciate hearing about the negatives because I always learn something about how people cope.  There's no way you can sugar coat dialysis.

Thanks for letting me rabbit on a bit.  It helps me sort out and clear my mind.

[Sunny]

moosemom,
I want to clarify to you that I am pre-dialysis with 15% kidney function. I don't have a fistula because my doctors all tell me I'm good down to 8-10% GFR. I'd like to argue that point with them, but I will abide by their professional opinion (this is 4 separate doctors I'm talking about). Thus,I am in complete understanding of what it is you are going through right now. I have been at about 15% GFR for over two years now, and my body tells me it will probably be like this for at least another year or two. What people do not realize (except for my husband), is that the only way I have managed to survive at this low of kidney functioning level is by giving up practically everything in my life due to lack of energy and general nausea feelings every single day. Some mornings I lay in my bed wondering how on Earth I'm going to get up and make it through another day like the days I had previously. Especially because I feel most nauseous in the mornings when I first wake up. I have a routine I go through: pee, drink a glass of water, take my BP meds, lay back down for 20 minutes, then I know I will start feeling better. During the day, my energy level is minimal. I am on disability. My husband and my 21 year old son pick up the slack around the house. But with all this going on in my life, the important thing is that I have re-taught myself how to be satisfied with what I have. It's not easy and sometimes it doesn't feel like much,but it is what it is. I will not be starting dialysis anytime soon because my nephrologist has been honest enough to tell me I should hold off as long as possible because in-center hemo( which I will do at first) will not be any better than what I have with my kidneys now. Plus, my nephrologist has been honest enough to tell me the toll any kind of dialysis will take on all of my body should I start too soon. People here may argue this point, but this is the professional opinion of 4 doctors.That means the only alternative, as I see it, is to learn to live with it the best I can. That is also the best that you can do for yourself. I completely understand where you are coming from and wish you the very best in learning to live with kidney disease.

[MooseMom]

Sunny, I have followed many of your posts and understand that you, too, are pre-dialysis and are going through much of what I am experiencing.  I appreciate your honesty, and like your neph, mine has not told me it is time to start dialysis just yet but that I should be ready with a fistula.  He and I are working hard to preserve as much of my kidney function for as long as possible.  And you are right...every day I remind myself that while I will be on dialysis eventually, I am not yet and that I should enjoy that while I can.  My life is not perfect, and my energy level is low, but I can still manage pretty well.  I think I may be feeling physically better than you are, so I can truly imagine what your day must be like.  I really need to learn to be happy for what I have right now, today, this moment.  It is spring, and I don't have to expend a lot of energy just plopping down in a chair on the deck with a book.

Thank you so much for reminding me to be grateful for what I have instead of obsessing over what I have lost and over what I may lose in the future.  See, this is why I ramble on so often on IHD; inevitably, several people come along and remind me how silly I can be.  Thanks so much to everyone for your patience and understanding.  I appreciate all of you.

[Sunny]

You are not silly at all. Your feelings are very real and valid. I have my ups and downs too. Maybe next month I'll be the one posting about my insecurities and frustrations and you'll have to prop me up.

[MooseMom]

Whether my feelings are "silly" or not isn't relevant; it's what I feel, period, and one reason I post about it is because I want anyone who feels like I do to maybe get some comfort from the fact that they are not alone and that they will not be judged if they, too, decide to unburden themselves. 

It is the ebb and flow of our emotions during this trying time that can be hard to live with.  I can feel good in one moment, and then I'll read something or hear something that will frighten me, and suddenly I feel panicky.  Thankfully, there always seems to be someone on IHD who can do some good "propping"!

[Quickfeet]

MooseMom your posts are very helpful to me. Seeing that other people worry about the same things I do, helps so much.

[wolfken]

Moosemom, Sunny
     Your life and the upsets you have shared make me feel that path we walk today does have a ray of sunshine, for myself, being self employed, the aspect of totaly not working any more, is out of the question, I can still push my way to create art.
    Taking the time to see the beauty and  having family near is what life is about....
Creation of Life and Creation of art takes a natural energy and the flow is always there,
  sometimes we think we dont contribute, but the Creator does have a plan for us all, we all just have to leave it in his/her hands...wolfken

[MooseMom]

It may be true that a Creator has a plan for me, but it doesn't mean that this plan will be to my liking.  And I don't like the idea of just leaving things in his/her hands because maybe he/she gets too busy to fool with me.  I'd prefer to have some say in my fate. 

I do believe, however, that art can come from any sort of experience, even one of fear and pain.  So wolfken, I hope that your struggles will translate into art that speaks to many souls.

Quicken, I'm glad you find some comfort here on IHD.  You're right...knowing that even if your kidneys aren't normal, your feelings are...well, that's important. 

[jennyc]

Hi moosemum, Sounds like a bit of depression. Um... the 2nd time i had to start dialysis i went down to 8% before going back on, i was working and feeling like absolute sh*& all the time. My problem was i fight (i don't fight the Dr's i only fight my own body, i try to keep going long after i should have given in) once my DR said it's really time, i kind of shrugged and said OK, in hindsight i should have gone about 4 months earlier but hey, we all do it differently.

the only thing i can suggest is psyching yourself into it. There is no real way to get around the physical tiredness but you can overcome the depressive tiredness with a lot of effort (but less stressful than being sad). Whilst D was working great i was fine but once PD started failing it got tougher and the depression started in (i got down really low even doing 5/6exchanges per day, my creat was1200 or 13.7 in USA terms), to stay happy and sort of active i had to just keep repeating a little mantra.... i'm happy, i'm smiling etc etc etc.. what ever works for you, it starts out as an outright lie but eventually the positive becomes sort of true and you can get through it. Unfortunately until then you just have to force yourself, Also how's your anemia? perhaps an iron insfusion will help?

[MooseMom]

jennyc, thanks for your post.  I know I'm suffering from a bit of depression, and you are right in that sometimes I just have to force myself to be happy.  Sometimes I just have to almost physically redirect my thoughts.  Some days I am successful in keeping myself distracted, and other days I am too tired for gardening/walking/any other distracting activity, so I turn to books or come to IHD and whine.  I am slightly anemic but not badly enough for treatment.

I understand that desire to fight your body and just keep heading into the wind.  I see my neph every six weeks, and we keep a close eye on my numbers.  I am in that transitional phase...not feeling great but not bad enough to warrant dialysis just yet.  It must have been hard on you to function each day with those rotten numbers.  However did you do it?

I think the difficulty comes in the fact that I am having to jump through the hoops to get on the transplant list.  I spend most of yesterday trying to get sloppy referrals corrected.  I was talking to the cardiologist's office about which code to use to get an adenosine stress test, and once she told me, she asked, "Are you doing this all by yourself?"  I replied, "Apparently so."  It's like I have to think for everyone I'm supposed to be relying on to help me get through these tests, and the result is that instead of being able to just let go for a while, I have to think about all this stuff all the time.  I am hoping that once I get on the list, I can put this aside while I take a breath for just a short time.

[paul.karen]

MM,
Do you have a TX coordinator?  It does sound like a nightmare what you are going though.  I went 1X to be placed on the list and saw several people in about a 6 hour day.  If i needed additional test they set them at that time.

I did this at two hospitals.

I am sorry to read they are making you jump though hoops and do the unknown legwork yourself.  this must be frustrating.