Having a rough time

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tw89

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  1. Incontinent
I haven’t posted on here in awhile but I’ve been going through a rough time lately.My incontinence is caused by my MS and originally I was experiencing severe urge incontinence and minor bowel problems.My symptoms have gotten worse and for the past few months I’ve had multiple UTIs and a nasty kidney infection.I went in for a urodynamics test and it showed my bladder is retaining urine which has been causing all these problems.I started using catheters because of this and currently use the tiemann coude catheters, which have been working pretty well. My urgency issues have turned into plain loss of control and it’s been hard to deal with personally.My bowel issues have gotten more severe as well which doesn’t make any of this any easier.I know this site is mostly for incontinence issues but my MS has also gotten worse lately and i’ve experiencing a lot of numbness and pins and needles in mostly my legs but hands as well.My meds help but they don’t help enough.There are days i literally can’t get out of bed which really scares me because I feel like I’m losing my independency in a way.My wife has been really helpful but its hard to deal with needing help with the littlest things when you’re use to being independent but im grateful for her.All of this has been happening so fast, its kinda brought me into a depression almost.My family and friends have been supportive but I just feel vulnerable these days.

That’s just what I’ve been feeling lately.
 
I myself am dealing with another UTI as an almost 60 year-old with Cerebral Palsy.
Just had my antibiotic changed.
I am less physically independent, and my CP is classified as "Mild".
To me it does not feel mild, when I can not stand and walk without forearm crutches and I can only drive my car now using hand controls.
Yes, I am in disposable diapers 24/7.

 
I wish I could offer some support, but the best I've got is to recommend taking a daily cranberry pill. They have been proven to aid in maintaining a health urinary tract and reduce the chance of a uti.
 
Dealing with progressive diseases is tough, and MS is one of the really hard ones. Feeling like your independence and your life are slipping away day by day is so unfair.

One thing that has helped me in dealing with my progressive disease is to remember how much of health is my attitude toward our situation, not my situation itself. Resolve to do at least one kind thing for someone else, and one kind thing for yourself, every day. Resolve to make the best of every day - I find exercising when I feel well enough to do so helps a lot, but some days all I can manage is being outside for a little while. Perhaps most importantly, give yourself permission to feel crappy sometimes, to not carry through on your resolutions some days, and to feel sorry for yourself once in a while. Just keep picking up the pieces and carrying on.

As far as the loss of control, again what defines your health is your reaction to it. Wear a diaper, add a booster pad if necessary, and don't let it slow you down. Other things with your MS will slow you down, and you don't have to let incontinence add to that list. You may not be able to control your bladder or bowels as well as you might like, but you can control how you let them affect your feelings.

You are stronger than you realize.
 
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ltaluv said:
Dealing with progressive diseases is tough, and MS is one of the really hard ones. Feeling like your independence and your life are slipping away day by day is so unfair.

One thing that has helped me in dealing with my progressive disease is to remember how much of health is my attitude toward our situation, not my situation itself. Resolve to do at least one kind thing for someone else, and one kind thing for yourself, every day. Resolve to make the best of every day - I find exercising when I feel well enough to do so helps a lot, but some days all I can manage is being outside for a little while. Perhaps most importantly, give yourself permission to feel crappy sometimes, to not carry through on your resolutions some days, and to feel sorry for yourself once in a while. Just keep picking up the pieces and carrying on.

As far as the loss of control, again what defines your health is your reaction to it. Wear a diaper, add a booster pad if necessary, and don't let it slow you down. Other things with your MS will slow you down, and you don't have to let incontinence add to that list. You may not be able to control your bladder or bowels as well as you might like, but you can control how you let them affect your feelings.

You are stronger than you realize.

Well said, Italuv. While I am not dealing with MS, and thankfully not fecal incontinence, your message hits home.

tw89, I'm sorry you are dealing with all this. I find that focusing on what I can do helps me get through the rough times. I'm glad your wife is helpful and understanding. Having a spouse or family member who is engaged and supportive is extremely helpful. Good luck and hang in there!
 
It’s very unfair, but I think things could be worse so I try and stay positive. I like your idea on doing something kind for someone everyday though, i’m going to do that.I don’t know if anyone else feels this way, but I feel like I should always keep my head up.I’ve got all of this support and so much good in my life, I feel guilty for feeling that way.As far as my control goes, i’m just grateful for the protection I have.I never thought I’dappreciate a diaper so much until now.Thanks for your encouraging words, they go a long way.
 
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