Thinking of Some Respite

[PrimeTimer]

Sometimes I miss our house and the big backyard we had but am now glad we live in a 726 square foot apartment. Never thought I'd have trouble keeping up with it tho. Never imagined we'd be doing dialysis in our home. Never imagined my fibromyalgia would get so bad. Paying for a housekeeper isn't doable but getting a little respite from things is. Staying away from dialysis stuff this week but gonna have to dive into the housework pretty soon.

It's hard being a neat-freak and having things pile up. I've learned to let go of some things but some stuff just cannot be ignored and when it is, you regret it. I have no idea what is growing in my fridge and the bathroom needs more than just a good wipe up job. Dust I can tolerate. Things growing and turning colors I can't. Also like to be able to see my dining table. The dining area is so close to the front door that our table has become a "catch all" for junk. I have no idea why there's a printed copy of a Wall Street Journal article on my kitchen table or if that fork and knife laying there is clean or not. Can't even see the napkin holder. Holy crap, we eat there?! And how dirty laundry seems to reproduce at the same rate as rabbits do I will never understand. I don't want to buy more bath towels -that will only mean more laundry. Ain't happening.

Much to my husband's relief, I gave up lining up canned goods with labels facing out and in categories long ago. Nowadays stuff doesn't necessarily even make it to the inside of a cupboard. See, when you have fibromyalgia and are tired and pressed for time, you set things up in ways that make getting to them easier and less painful. You get creative with decorating and containers. I suppose the canned goods thing was just an obsession but seriously, not all stuff needs to go into a drawer or cupboard that will need to be pulled open by aching muscles. However, stuff does need to be arranged in a way so that you'll know that there is actually a countertop and you remember the color of it. When you can't even see what it is that you have or are looking for, then that is what I personally call "a mess". And lately my home has been messy. Which leads to my being "a mess". And when we worry and things upset us, we tense up. My muscles start to ache and not just from lifting things or doing hubby's dialysis but because I am tensed up. Hopefully once the tension cycle is broken I will feel more normal and less achy. My head will be cleared and so will the apartment. Obviously when your environment is a mess and unorganized, it's real easy to start feeling that way. Somehow the pile of dirty laundry and a dirty bathtub equate to feeling like a pile of well, you know what....  *insert deep breath here* Once I can beautify our home again and clear the mind then I am sure I can get back on track. The real lesson will be to stay on track!

[kickingandscreaming]

Another thing might be to check out whether your state allows medical marijuana for fibro.  I have a good friend who is now getting it and it's helping her a lot.

I don't know where you live, but there is  group called the Time Trade Circle where members exhange hour for hour in whatever services they can offer.  They get "paid" in hours they can use for what is needed.  I accrued a bunch of hours and used them to get rides to surgical appointments, etc. and help cleaning and organizing my basement.  https://hourworld.org/
https://hourworld.org/_JoinUs.htm

[DayaraLee]

Dust I can tolerate. Things growing and turning colors I can't... And how dirty laundry seems to reproduce at the same rate as rabbits do I will never understand.

 

I've had weeks where I fantasize about abandoning the house (selling takes too long) and buying something new. Something that's neat and empty, a clean slate. I just want out. And then we DON'T win the lottery, so I have to come back to real life.

It's amazing how it helps not just to clean, but to actually box up and get rid of some stuff that's accumulated - that's very cathartic to me. I think it also helps to feel in control of something? And like you, when my home is a wreck, I'm a wreck, too.

...there is  group called the Time Trade Circle where members exhange hour for hour in whatever services they can offer.  They get "paid" in hours they can use for what is needed. 

What a wonderful opportunity to help others and have friendly reciprocity!

[PrimeTimer]

Dust I can tolerate. Things growing and turning colors I can't... And how dirty laundry seems to reproduce at the same rate as rabbits do I will never understand.

It's amazing how it helps not just to clean, but to actually box up and get rid of some stuff that's accumulated - that's very cathartic to me. I think it also helps to feel in control of something? And like you, when my home is a wreck, I'm a wreck, too.

I think you hit the nail on the head, DayaraLee. So much of my life (not just hubby's ESRD) has been out of my control for so long now that everything, no matter how big or small, seems overwhelming. Of course, I know to break things down into smaller pieces to tackle but there are times that I just can't seem to keep up and before I know it, it's all built up into a mountain. And then there's the fact that my body just needs a real rest. 

[Charlie B53]

I've had weeks where I fantasize about abandoning the house (selling takes too long) and buying something new. Something that's neat and empty, a clean slate. I just want out. And then we DON'T win the lottery, so I have to come back to real life.

DITTO, sort of.

I fantasize burning the whole house all the way down to the basement floor.   But I'm sure the Fire Marshall would catch me and I'd end up in jail.

We are on Dish.   I hate Dish.  Well, I really hate the bill.   And the Wife is pretty irratated at them right now as all the Fox channels are out.  Dish and Fox are having another of their spats.   And us consumers are the ones that suffer.

Son gave us an antenna a few years ago.  I just never got around to putting it up.  We are surrounded bby trees so it will need to be up pretty high to get a decent signal.  Which means on top of the house.   I have about 40 feet of the antenna pipe, I need to get clamps and guy wires as I am sure it will need at least one, maybe two levels for stability and support.

Thing is, here in the mid-West we have storms.  With lightening.  And our house is on high ground.   Lightening has blown the transformer on the pole of the house on our North side a few times.  Struck and cracked the foundation of the house on the South side, twice.   So far, we've been missed.    I'm not so sure sticking a metal pole 40 feet up above the house is a real good idea.


Neighbor says insurance companies reward stupidity.

[DayaraLee]

I fantasize burning the whole house all the way down to the basement floor.   But I'm sure the Fire Marshall would catch me and I'd end up in jail.

  We have so many empty boxes in the basement that I fear spontaneous combustion more than a break-in!

Somehow over the years, I've collected small to medium-sized baskets and ceramic bowls and have placed them around the house as 'catch-alls.' If G and I didn't use them, we'd be overrun by mess. (He's a gadget and computer guy, and he sheds things like ethernet cables, plastic ties, and charging accessories. Bits and pieces of electronics follow in his wake...) I always seem to put off the regular cleaning (bathrooms, counters, floors, dusting, etc.) until it's unavoidable. But I do find that it's helpful - and makes me feel that I have at least a small handle on things - to go through the house once a week and empty the catch-alls and put things where they belong.

[PrimeTimer]

Back in the saddle again but not for long. My husband and I have decided that he will be going back to doing in-center indefinitely. We just can't do it ourselves anymore.

[Michael Murphy]

The best treatment is the one that fits you,  all the treatments keep you alive.  Each has pluses and minuses.  Home hemo is not for every one. 

[PrimeTimer]

The best treatment is the one that fits you,  all the treatments keep you alive.  Each has pluses and minuses.  Home hemo is not for every one.

Thanks, Michael. Your good attitude has helped me so much, beyond words. In fact, it was your attitude that helped me in the decision process, especially about what you say about going to the center for dialysis 3x times a week but having the rest of the time left for "living". That really stands out with me. I have my own set of health problems and I don't know why it's gotten so much worse but my body has become most uncooperative. I just physically cannot do my husband's home-hemo for him anymore and he can't do it himself. He likes the clinic he goes to, says they are very nice to him and they listen to him. They do things the way he asks them. Anyways, this was a hard decision for us but we haven't much choice and so we are doing what we think is best at this point. He plans to tell his doctor and nurse this week so they can make arrangements for him. I feel terribly guilty but then, so does he. That's no way to live.

[cassandra]

O PT the both of you HAVE to STOP feeling guilty. I hope the in-centre can start soon, so the both of you can start living. Nothing to feel guilty about.

Love, luck and strength, always, Cas

   

[DayaraLee]

O PT the both of you HAVE to STOP feeling guilty. I hope the in-centre can start soon, so the both of you can start living. Nothing to feel guilty about.

Absolutely! Options and choices are often not what we'd like them to be. We do the best we can, with what we have, at the time we must. Leave guilt at the door and step through without it. 

[Simon Dog]

One thing about this disease is you never know where it will take you.  When I started PD, I had it all planned out.  Once it started, modalities changed at times I did not expect for reasons I did not expect, ending up with NxStage for now.  No idea what future years will bring.

I wish you both the best of luck with the new modality, and many more years of happiness.

[PrimeTimer]

One thing about this disease is you never know where it will take you.  When I started PD, I had it all planned out.  Once it started, modalities changed at times I did not expect for reasons I did not expect, ending up with NxStage for now.  No idea what future years will bring.

I wish you both the best of luck with the new modality, and many more years of happiness.

Thanks for the well wishes. Thanks too for all your help with the Nxstage. Glad to know we can come here for answers and support. So far he says he feels just as well doing in-center as HHD but we'll see. He likes the early shift because he says he feels his best just after a treatment so then goes straight to work afterwards. Even before he started Nxstage he never really did get that washed-out feeling some people experience. He also likes the staff and they like him. They like that he self-cannulates and understands his labs and knows enough to even tell them what speeds and UF to run at. They don't seem to mind that he tells them what the game plan for the day is. What also helps is that he doesn't tend to put on a whole lot of water weight and eats lean. I feel torn over it but if he really does okay with this then I think I will feel better about it. We'll see.

[justagirl2325]

Sorry, I am just reading this thread now.  I imagine there's a lot of guilt (because I think I would feel guilty) but I know from reading your posts, and you've reached out to help me a lot, that you are a terrific wife/partner/ care giver and there is still much care to give even when he's in centre.  I wish you the very best.

[PrimeTimer]

Sorry, I am just reading this thread now.  I imagine there's a lot of guilt (because I think I would feel guilty) but I know from reading your posts, and you've reached out to help me a lot, that you are a terrific wife/partner/ care giver and there is still much care to give even when he's in centre.  I wish you the very best.

Thank you for your kind words and thoughtfulness. So far hubby is feeling okay going to the center. He goes to the very early morning shift and then gets on with his workday. Seems to be fine but of course, I'm keeping a close eye on him.

[Simon Dog]

I am puzzled that he self canulates, but was unable to manage home treatment - the canulation is the trickiest part.  The rest (for me at least) is by comparison easy.  At least he is not losing the advantages of self canulation by going to the clinic, and he seems to have gotten past the "you are here to sit, not think" attitude some staff members seem to have.   I wish him and you the best.

[PrimeTimer]

I am puzzled that he self canulates, but was unable to manage home treatment - the canulation is the trickiest part.  The rest (for me at least) is by comparison easy.  At least he is not losing the advantages of self canulation by going to the clinic, and he seems to have gotten past the "you are here to sit, not think" attitude some staff members seem to have.   I wish him and you the best.

He self cannulates but needs help with it, sometimes a "tandem" stick. He has neuropathy in his hands/fingers caused by diabetes. He can stick his arterial buttonhole fine but needs help with his venous. And because of a loss of dexterity and feeling, combined with vision problems, he tends to drop things. Making his own blood connections were out. I basically did all setup, the PAK and SAK myself because we knew it would be agonizing to have to keep starting over if things and connections got dropped/contaminated. It just was more practical if I did it. He hated that, especially since I have Fibro and other problems and I hate that he has to live with ESRD and Diabetes.