where to gain strength

[boswife]

I just dont know 'how' to gather strength to take the emotional toll this is taking on me.  No matter what anyone can say, or how much try to have happy time, well, it's still that this IS happening and things KEEP happening and to watch your loved one fight so hard, well..... I  am always on the verge of tears even though i have my happy times too.  Bo's dialysis is going great!! thats the good thing.  His numbers pertaining to all that are super.  But his anemia is just taking it's toll and he looks and feels so bad.  He has had three transfusions in this last two months and none are 'taking'.  I think its because they dont get him up to where he can hold his hemoglobin himself, but i just dont know.  No bleeding can be found, no infections, and we are waiting results on a bone marrow scrap he had done.  I feel like sometimes when im reading of 'others' issues, ya all seem to take things in stride as just another thing, yet i feel like each new thing, 'this is it' how can he keep fighting.  Im just sad, and needed my vent turn i guess      

ps..... I feel a bit bad for venting because ........... I do have my faith and know that God is good and we are right where we should be, but still, well, ya know, im human and its hard.

[MooseMom]

 

I'm not sure anyone takes any of this "in stride".  Some are more adept at conveying their frustrations and fears through the written word.  Others are not so forthcoming on what they really feel when they are kept awake at 3AM. 

It seems that most people on dialysis have one specific issue that they just can't completely eradicate.  For Bo, it seems to be anemia.  Just think how much worse off he'd be if he were not getting frequent dialysis!

I hope the doctors keep trying to find an answer for him.  There probably IS an answer, they just have yet to find it.

I'm so sorry that this has to happen to any of us.  It's so unfair, and this disease causes so much needless suffering. 

[monrein]

Please don't feel bad for venting.  If it helps even a teeny tiny bit then do it some more.  We may not be able to offer up any changes or solutions as such but we do understand the feelings you express and this stuff isn't at all fair.   

[lmunchkin]

It is stressful for sure, but Hang in there!  Just continue to pray, it's all that we can do!

 
lmunchkin
 

[big777bill]

 This stinking disease drives me crazy! I don't know if any of my posts, which there haven't been too many yet, convey that I'm taking this in stride. I don't see how anyone could. It takes your life and turns it upside down. Not just for the one who is sick but for everyone that has any interaction with them. My wife has been on the verge of a nervous breakdown this past week. I'm all out of whack. I can't sleep well at all, restless leg syndrome swinging my arms in my sleep. Last week somehow I grabbed my wife's arm and held it down while sleeping. She couldn't wake me up. I finally let go she said I was jabbering about something the whole time which she couldn't make out. I feel so bad! The last thing in the world I would ever want to do is hurt anyone. But to hurt the woman I love more than life itself. I don't know what to do. I called my neph and relayed the situation to her. She wrote me a script for ativan. It helps somewhat but it's no cure that's for sure. The neph also said she thought that it was time to start dialysis. My numbers are borderline for beginning treatment but she feels it will help with all the craziness. I hope she's right. I been considering getting some pot to help but it's been over 30 years since I did any of that besides the fact it's illegal. Oh and did I forget to mention the extreme nausea? The nausea in itself is enough to drive you bonkers. I know this probably didn't help but at least you see that your not the only one in the boat. If it wasn't for my faith in Christ and my family there wouldn't be a reason to live.

[MooseMom]

Oh big777bill, I feel so bad for you.  Do you intuitively feel that it is time for dialysis?  I know we can look at lab results and listen to our docs, but I believe that most of us will just "know" when it is time. 

[Joe]

BigBill, you need to move to Colorado; we can do medicinal pot out here legally   

[Traveller1947]

Just home from dialysis and ought to be resting, but your post was so heart-rending, boswife, that I had to write a few words to you first.  I don't have answers, even much in the way of comfort.  Having been the care-giver and the patient, this much I know: sometimes it's more difficult to be the caregiver, than it is to be the patient, especially when things are going relatively well for the patient.  That's when the 'what next' and the 'what if' looms most darkly.  The patient can allow himself a kind of tunnel vision that allows him to cope.  The caregiver is already looking beyond the present, to the next crisis and the next.  No wonder it brings you to the verge of tears.  But the people on this forum understand  your struggles and sadness as no one else can.   

[big777bill]

  Yeah MM I do believe that it's time to start D. I've been out of sorts, weak , muscle pain and the nausea is outta control. My neph is a compassionate person and I can tell by the way she's been talking to me lately that she feels we're doing the right thing. I hope that it doesn't take too long to start seeing results. I'm so ready to feel better.  Joe I've considered it! I have quite a few friends in Greeley Co. Maybe it's time to visit and do some house shopping. How's the housing market out your way? 

[willowtreewren]

 

Boswife, I hope I have not been one of the care partners who looked like I was always coping well. I just have a policy of keeping my public face as positive as possible. But it isn't always possible. (Oh my.....that's a bunch of p's)

 

Anyway, it is good and necessary to vent. We KNOW!

 

[billybags]

Boswife, We don't all take it in our stride, we suffer just like you. I feel like I am living on a knifes edge all the time.There are days when I just want to run away, but then who would look after him. I seem to do all the worrying and it is getting me down. Like you I look at my lovely husband and think, why is he going through so much. I doubt if I could carry on like he is doing and I think I am a strong person. We all have our ups and downs. I really hope you feel better to-day. You are not alone in this. We are here for you, please vent when ever you wish. Sending you hugs.

[big777bill]

Boswife I'm hoping you're feeling better today and wanted to let you know that you've been in my prayers. Things will get better even  though it doesn't always seem like it. God Bless you and yours,  Bill

[boswife]

I cant even express how much your thoughtful responses, hugs, and prayers mean to me. Thank you each and all so very much as it is this comrodery that  builds back up our strength and comfort to go on and with a new get up and go at it..  And yes, i do feel better today.  Its just amazing how dispair can get a grip at times and ya just cant see your way out of it.  Well, heres another time i've climed out of the 'hole' and ready for what happens..  hehe, well sort of, i guess im still on my 'verge' of those tears as i feel them rolling down my face as i have been reading here..  Guess tears are good so long as ya can keep um under control     
Im praying for  "grace" in this .  You are wonderful people here, and very dear to my heart...  Thank you 

[looneytunes]

BW...venting is good, keeping it all to yourself...well, not so good.  I agree with Traveller, we ARE always looking ahead to the next crisis or change in the status quo even though things might be going well right now.  It keeps us on edge because we NOW that crisis or change will come. My thoughts and prayers are with you my friend.    

[MooseMom]

I think that this constant feeling of vigilance...of just waiting for the next disaster...is so incredibly exhausting.  It's like having to be on DefCon 1 ALL the time, and your brain and body just cannot sustain it for too long before you break down.

[lmunchkin]

I think that this constant feeling of vigilance...of just waiting for the next disaster...is so incredibly exhausting.  It's like having to be on DefCon 1 ALL the time, and your brain and body just cannot sustain it for too long before you break down.

Excellent description Moosey! I pretty much feel that way sometimes. I tend not to vent and keep things to myself. But there are times that I really have to contain myself.

lmunchkin
 

[MooseMom]

I tend not to vent and keep things to myself.

I do, too, but that's not always the healthiest thing for me, so that's when I come on to IHD at 3 AM and spill my guts.   I figure people don't have to read it if they don't want to!

[lmunchkin]

Yes this site is great for that.  They will let you discuss anything on here, and that is a Blessing! 

lmunch

[amanda100wilson]

I went for my mammogram the other day and it was fine, but beforehan I was thinking the worst.  Not because I had any issues, but dialysis is going so well for me that there's a thought in my mind that something bad must just be around the corner since that seems to be a continual pattern.  I am generally fairly optimistic, and even when I don't feel it, try to make myself to be, by thinking logically, but sometimes the ongoing fears get the better of me.

[MooseMom]

I went for my mammogram the other day and it was fine, but beforehan I was thinking the worst.  Not because I had any issues, but dialysis is going so well for me that there's a thought in my mind that something bad must just be around the corner since that seems to be a continual pattern.  I am generally fairly optimistic, and even when I don't feel it, try to make myself to be, by thinking logically, but sometimes the ongoing fears get the better of me.

Oh, I know what you mean!  You know how you are supposed to "hope for the best but prepare for the worst"?  Well, I have the "prepare for the worst" part down pat, but that "hope for the best" business seems to be beyond me.  I have this terror of being "sandbagged", ie, stunned by bad news that I didn't see coming.

[del]

Boswife I'm sure we all feel like you sometimes.  I sometimes just find an alone place and have a good cry.  Dialysis does turn your life upside down and you never know what to expect one day to the next.

big777bill, you sound like hubby just before he started dialysis - nausea, restless legs ,arms  ( I was sick of being kicked and hit so it was either a king sized bed or twin beds!!)  .  The nausea was terrible.  Hopefully the dialysis will help. It did for hubby.  He's been doing dialysis for 15 1/2 years now and feels really well.

[Poppylicious]

Awww, Bo's Lovely Wife ... *huggles*

I feel sad most of the time (not for me, for blokey and his present and our future, together).  I just hide it very well or find ways to occupy my time so I don't have to live with the thoughts in my head.  We're allowed to vent here.  It's what makes this place so special.

Glad you're feeling better now.

[boswife]

once again i want to thank you all.  A good cry  away from others, some prayers,  reading here  and seeing that when need be,,,, i can vent again, has been the lifter of spirits.  That, and for today, bo is not in pain and that is a beautiful gift in itself 

[billybags]

Boswife, every day is different, isn't  it.  I have a calender and at the end of the day  I put G for good day and B for bad day so depending how he is I put it down and you know what, according to my calender he has more good days than bad, which really surprised me. I think I am going to start one for me. Mine would go S  for shitty day and  M made it through the day thank goodness..

[looneytunes]

BW..I wish Bo many pain free days.  For you, I send cyber hugs.  This is such a crazy life and it is so hard at times.   And BB, I also keep a record of how hubby does and how I am doing.   I like your S and M system!