Trying to stay positive

[flipperfun]

Hello everyone, I have been reading countless threads about tiredness, no appetite and lethargy.  Sums me up pretty well.

I AM so frustrated with dialysis.  Mondays are the worst, I am so tired when I go home I do not want to eat.  Sometimes I do eat but yesterday was only one sandwich.  I can't afford to lose any more weight as I am already at the lowest I have ever been.  This plus a major battle with one of the nurses a few weeks ago when she wanted to put my weight down (again) because my BP was high.  I refused.  I went on the BVM and it was marginal, so my weight stayed the same.  So instead they have changed my BP pills and I have started to eat extra 'bits' to help maintain my weight.  So far so good until yesterday..........so tired.  I really could cry as it is an uphill battle to maintain weight.  I Sooo envy patients who have an appetite.

I have also noticed I have become a right old grouch and getting irritated with friends who have their own problems.  The 'woe is me syndrome' gets on my nerves.  I have spoken to my friend today to enquire how they were only to hear "not good, not good, leg hurts etc".  Sorry I was not very sympathetic, but then I don't want sympathy either, just a few tips and coping techniques.

Can anyone help?  What do you do when you are feeling low and just need to keep going?

Many thanks - Denise

[kitkatz]

There are days when all I want to do is run in circles and scream due to being on dialysis.
Things I do to cope are:
Find something fun I like to do everyday.
Play a game either on the computer or with someone else.
Come to IHD.com forums and tell us about it.
Watch something funny on DVD or TV.
Treat your self to some pampering.
Go for a walk.

Some days is just takes being able to breathe in and out and exist for one more second, minute and hour.

[kristina]

Hello flipperfun,
kitkatz has already mentioned some important points and I only would like to add that I reserve especially for dialysis-days
some fun I would like to do everyday, but by keeping it for "dialysis-days only" it helps me to keep up my good spirits
and prevents me from getting too sad about these dialysis-days...
... I also prepare a little portion of my favourite food for "dialysis-days only"
and this little trick almost makes me look forward to those four hours ...
... I also read some special books during "dialysis only" and that not only keeps my memory very much alive,
but it also makes me look forward to the continuation of the story at the next dialysis-session etc.
All these little tricks help me to keep my good spirits and prevent me from getting down about by the seriousness of the whole situation...
Good luck from Kristina.

[Michael Murphy]

Personally the thing that made dialysis difficult for me was the never ending series of treatments.  It was depressing me which made the effects of the treatment seem much worse.  One Friday as I was getting up the nurse who was treating me was setting up the machine for the next victim ok patient and out of the blue I announced that this sucked and I was not comings back any more this week, the nurse became upset and began to argue, she missed the this week part, so I repeated, same result, the third time she heard the this week part and slapped in in the back of the head.  I got a good laugh and I began to feel better, then it hit me I was done for the week, complete, a whole weekend off.  Then it came to me like the substance abuse places that have a one day at a time philosophy I would take dialysis one week at a time.  Since then I have not been depressed and every Friday I celebrate a complete week.  Monday is a new week and I am free till then.  I know this sound simplistic but it has helped me.  Good luck the start of dialysis is hard but it's doable.

[PrimeTimer]

In addition to playing with our cat I found something new to do for laughs. I watch youtube videos of people's pets doing silly things. I also turn to those videos of screaming goats. Reminds me of what I must look like when I have a meltdown. Anything I can do to produce endorphins...

[flipperfun]

Thank you Kitkatz, Kristina, Michael Murphy and PrimeTimer for your comments.  It does not help when I see one of my friends clearly going down.  He looked SO ill yesterday.  Sometimes morbid thoughts start wondering when it will be my time!  Perish the thought, I want to live.

I haven't watched youtube for ages  - that is a good one.  I love videos of pets, cats especially.  I also love the idea of celebrating Fridays.  Good idea.

Kristina out of curiosity what is your favourite food for dialysis only days?  I could try this too, whether it be naughty or nice!  I used to read but am unable to sit up the whole time during dialysis and as soon as I lay the bed down, off I go to sleep.  At least I am not counting the hours down.

Reading through all of the comments I see clearly that it is the small 'fun' things that are missing.  I have never seen videos of screaming goats so must research that.  Thank you all of you

[Michael Murphy]

If I am having a bad day I search for morons being tased some how that makes what I am going through look good in comparison. 

[PrimeTimer]

I can relate to when friends/family get on your nerves when they go into all their problems, especially when that is all they seem to want to talk about and they know darn well what we're dealing with. I've tried hinting to them to stop telling me about their problems to outright telling them that they shouldn't complain because "some of us" are dealing with far greater "challenges". Unfortunately, in some cases that hasn't worked. I've tried to be nice and I've tried to be blunt and that hasn't worked. In fact, when I've intentionally gone a while without speaking to them, the first thing they do when I do talk with them, is to quickly tell me all about their problems in the first breath! It's almost as if they've been saving it all up for me. I can't take that anymore. I know this sounds cold but these people do have plenty of other friends/family that they can turn to. So now I've resorted to severely limiting my contact with them. I keep phone conversations down to about 5-10 minutes tops and I don't visit them and that's regardless of what they say or don't say to me. At this point, I am considering just being done with it and cutting some of these people out of my life altogether. I've had to do that before with people (so I've got experience and the guts to) and well, it was liberating! Hate to say it but these people upset me because I've let them. I see no reason to keep them in my life and they darn sure don't seem to give a hoot about me and my husband's, doubt they will even miss me. 

[flipperfun]

I can relate to when friends/family get on your nerves when they go into all their problems, especially when that is all they seem to want to talk about and they know darn well what we're dealing with.....the first thing they do when I do talk with them, is to quickly tell me all about their problems in the first breath! It's almost as if they've been saving it all up for me.   

Oh my PrimeTimer the above is SO true.  I do believe my friend does care for me but she is so exhausting because our conversations revolve around what her day has been or how her husband is then I am asked, almost as an after thought how I am!  I feel unable to cut them off as since I stopped working, long before my kidneys failed, my list of friends who bother to contact me has shrunk considerably.  Even my friends in the charity I was involved with, rarely get in touch.  Apart from my family, who I am blessed with, I feel very alone at times.  This is why the 'ihatedialysis' family are terrific.  Always something here to cheer me up.  I especially love Michael's idea of Morons being tasered.  Why would someone do that?  Thank YOU everyone.

[kristina]

Kristina out of curiosity what is your favourite food for dialysis only days?  I could try this too, whether it be naughty or nice! 

Hello flipperfun,
My favourite food on dialysis-days is a potato-salad. I cook a few new potatoes the evening before and keep them in the fridge overnight.
Next day I peel the potatoes, slice them and mix them with a few olives and gherkins, which are cut into thin slices.
Then I mix it all with a bit of vinegar and olive oil to create a delicious refreshing potato-salad as an evening meal during dialysis.
Bon appétit from Kristina.