dialysis struggle

[sakinah]

Hi everyone,

unfortunately I am still struggling after a year on dialysis, I dont know why I should be but I am, I get really bad depression and still get withdrawal symtoms after the treatment and leaves me absolutely knackered and drained. By the time I the symptoms have worn off the next day I have to go to dialysis again the next day.  its literally taking up my whole life, im sure a lot of you feel the same way.

What gets me is that I notice that some are at different levels of kidney failure and some are still able to freely walk about and even work, but in my case its more complex, as I have other complications of severe arthritis/osteomlacia which can severely affect my mobility.  I get really bad flare ups that can literally leave me unable to get out of bed or move!!

I cant seem to get involved in any activities of any kind because im always in so much pain or feeling weak and drained, its so frustrating.  I cant even go out for long unless there is a decent lavatory around due to my sensitive bladder situation, which is being looked into and waiting for another appointment cos its been referred to the renal team now from urology department, as there is nothing they can do with the bladder growth as its caused by frequent UTI and if removed is more than likely to re occur!! so Ive been told I can only take antibiotics for the infections and a pain relief suitable for the bladder pains because the ones im taking are only just skimming the surface.

I try my best to keep positive outlook but sometimes it just gets too overwhelming and I feel like im drowning in all these problems I have to deal with and feel so guilty that im such a burden to others to the point now where I feel that my children dont even come and see me anymore because im always ill and im no use as  nanny as Im too ill to babysit their children.

its so frustrating but what can I do, nothing just prod along in life doing the same thing everyday, which is usually nothing, or going on my computer.  I cant even do simple household tasks anymore even with pain relief, and I dont want to stuff myself with drugs just to do housework as that will make the kidneys worse now,  I used to but now my kidneys are worse I cant do it anymore, so the housework gets neglected and my hubby does his best but hes not up to scratch with housework stuff unfortunately.  I am thinking of hiring a cleaner but I feel so embarrassed by the mess and its not always my mess unfortunately. 

Anyway that was a little vent that was playing on my mind for the last few days not much I can do about it really just learn to adapt to it I suppose?

sakinah

[kickingandscreaming]

Welcome, sakinah. So sorry that you have so much going on.  That's very hard.  The first-- and easiest-- thing to try is to get a house cleaner.  It's doable.  Just swallow your shame about the house.  You will feel a lot better when you can look around and not feel so awful about the mess.  Don't ask me how i know this.

[Charlie B53]

Chronic pain itself can be debilitating.  I've struggled with pain for far too many years.  Traditional pain meds, opiates, leave me drunk, brain clouded, and still no real relief from the pain.  The drunkenness just makes me not care so much.  Add the constipation, well, I rather try to deal with the pain.

A year or so ago the Pain Specialist Dr started me on Methadone for my pain.  I cannot describe how much difference it has made in my life.  The pain is much different, reduced to a manageable level with NO brain fog, nor any constipation.

I highly recommend anyone with chronic pain take to their Dr about possibly using Methadone.

I will never again use any of the opioids.

[kickingandscreaming]

Since we're jumping to heavy drugs (Methadone) which is an opioid, I'd rather you first explore medical marijuana (MMJ if it's legal where you are). It has a very long track record and is a natural substance. There are strains of MMJ that have no psychotropic qualities but can be very helpful for pain.  Look for ones with a high level of CBD (cannabadiol) and low THC (unless you also want the buzz).

[iolaire]

What gets me is that I notice that some are at different levels of kidney failure and some are still able to freely walk about and even work, but in my case its more complex, as I have other complications of severe arthritis/osteomlacia which can severely affect my mobility.

Welcome to the group. 

I'm one of the ones that was able to still work and get around fine on dialysis.  I've thought about this a bit as being USA based I could have gone on Social Security Disability and stopped working once I started dialysis - give how I felt that was never something I considered - but I did think a bit about  - for what reasons for many people that is a viable option or required?  In the end people not being able to work on daily must be very common if Social Security Disability is a unquestionable option to dialysis patients.  If a majority of the patients could continue daily activity, I'm sure the political leaders of the US government would change the Social Security Disability option to some sort of hard to get option with lots of hoops to prove that you can not work.  So I guess I'm trying to say that I'd think being "disabled" from dialysis is much more common than you would think from reading these forums. 

[Charlie B53]

Recently I watched a very long on-line add for a dietary supplement developed by a former heart Dr which supposidly helps negate the negetive effects of lectin found in our diets.  Far too expensive for me to try but I did notice that I have greatly reduced many of those foods already and I am doing much better.

Processed grains are not our friend.  Not only are these adding to the carb load and increasing our body weight, but speeding digestion we are now absorbing far more than days of old when we tended to eat much more 'natural' forms of foodstuffs.

Add in all those long words I cannot pronounce, makes for terrible side effects and hard to define illnesses.

We ARE what we eat.  And we tend to eat what we learned as children.  It's difficult to change habits, but necessary in order to improve our health.  I am trying.

Take Care,

Charlie B53

[Simon Dog]

- for what reasons for many people that is a viable option or required?

I was working 30 hours a week plus doing dialysis when my employer gave me an option - early retirement or back to full time.  Full time where I worked (tech company) was actually more than 40, and I concluded I could not perform at a high level for that amount of time and decided to get out while I could get "the package" (a year of severance) and leave with my dignity intact rather than as an older guy whose performance tapered off.