CP is ruling my life

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Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 1/30/2012 7:34 PM (GMT -6)   
I am so sick of pain. It rules my life. I can't go anywhere without making sure I have enough medications, that I know places to find a bathroom, a seat, a drink, and to have prepared for every possible medication need. I carry those silly instant heat things, because heat helps and I have been caught at my in-laws in tears from pain and desperate for heat to help so they would not see how badly it hurt. My husband has to think about how to touch me just with hugs, deciding if I can reach up high enough today to hug him around the neck or not. He has to plan shopping around how I feel, and our idea of a date night is ordering out. I get tired of our activities together being house-related.

Life revolves around how I feel each day, which is not fair to my children and husband. There are days that I can handle these feelings and know that CP doesn't rule me, but just requires attention a lot of the time. After sitting through the attorney's questions for SSDI and realizing that he has to decide whether or not I have a case worth taking, the ability to look past the pain and see me is gone. He pointed out that all I do is lay around my house, crocheting and making sure my kids do their schoolwork. I have to have help to cook, help to shower, help to walk my dogs, and help to remember appointments and even what I was doing when walking into a room with and forgetting all reason for being there.

There is no sense in wishing for things to go back to the way they were before CP. Its here, and sadly its here to stay. Its rough when people look at me and ask me if the doctors told me I will recover or not. Its rough because of all the lost hope from hearing over and over that this surgery will make it better, or that treatment is the ticket to less pain and knowing now that all of those lost chances have led to here. Why is it so hard?

Why are there more days that I am counting down the time to my next dose and having an intimate relationship with my heating pads instead of living life? How much of a life is left at this point when any movement creates pain, and just the bare minimum of life is possible?

Sorry for the vent. I just needed to get it out and I have no private time now with my hubby home. Thanks for listening.
Mindy

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 1/30/2012 8:18 PM (GMT -6)   
Mindy, you vent away, sometimes the only thing we can do is to take it one day
at a time...sounds like a broken record, but it's all we can do sometimes...are
you seeking out counseling? can you give your counselor a call???maybe
try to do that... I plan some of my outings around Barnes and Noble as they
usually have clean rest rooms...not the greatest, but better than average...
I can't use the faucets at Macy's cause the push button hurt's my hand to
much so if we go to the Mall then we park by Dillard's as they have better bathrooms..
So yeah, see...your not the only one that has to plan these things, so that can
work out...your doing good hun....remember that...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 1/30/2012 9:07 PM (GMT -6)   
Hi Mindy, this is nini, I am wondering, are there any hobbies you can do from your house, do you knit, sew, read books, etc.  This is what has continued to help me get back to as much normality as possible.  I found its much worse just to think about how it was, its better to try to take action.
 
Believe me, I know its not easy, its been 12 now since I became disabled.  I camped under my covers for the first year and a half.  Then I had to start doing more than leaving my house to go to the doctors.  I do not knit or sew, but I read alot, volunteer at the elementary school right down the street from me. They require 1 hour a week maximum, and it gets me out.  Winter is difficult anyway, its cold, dont like that and neither does my broken body.  But what ya gonna do?
 
Take care, and hope you feel better soon,
Kathy
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 2/1/2012 10:03 AM (GMT -6)   
Chartreux,
You are right, one step at a time, day by day, minute by minute if needed.

Kathy, I crochet everyday. It is something I can do while laying down or reclining, and it keeps me out of myself. I also volunteer at a local ministry that helps people who are starting over in life with free furniture, household goods, and necessities for 3 hours or less each week. There are many times that I have had to call off, but they understand so well why, and just appreciate what I do for them when I am there. I do computer work, and unpack small donations. Its like Christmas every day I go, watching people get matched up with what they need, and seeing that there is always something there that this person has always wanted but never able to get. The ladies in there are all like the Mothers I never had. It gets me out of myself.

PM doc yesterday made some adjustments to my dosages, hoping that with the higher doses of long-acting drugs will make me less dependent on breakthroughs and give me more ability to get up and get out. He told my hubby to bring me back sooner, since he is not working, so I can get another round of trigger point injections for my SI joints and hip flexors. Problem is that I have 11 trigger points that need them, and only can get 3 injections at a time. His office is an hour away, and more than 3 injections makes me feel ill.

It also doesnt help that hubby is here more often and I can't hide the CP coping I do, which makes him feel bad, and can cause an ugly cycle. We are just going to have to talk and find a way to keep that cycle from happening.

Thank you for the support Chartreux and Kathy.

Hugs,
Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw
Pelvic adhesive disease, IBS, SI dysfunction, arthritis, fibromyalgia, depression and anxiety, 11 pelvic surgeries for pain, adhesions, endometriosis, adenomyosis, ovarian cysts, and ovarian remnant syndrome.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16794
   Posted 2/1/2012 1:12 PM (GMT -6)   
Mindy I think its wonderful that you volunteer and do your crotcheting. That is a great distraction which anyone with CP will tell you that is how we exist, by diversion. I wouldn't worry about what I had to armor myself with to be able to do things, thats ok because at least you can and are able to do things, some people truly cannot even do what you do.

I have crohns disease and have to know where every bathroom is when I am out in public, I even have a pass that says they have to let me use their bathroom regardless of their rules. Yes, I have been told no on using their bathrooms. When we go out for dinner I have a time window from when I finish eating and how long it will be before we get back home. I could forego going out to eat I suppose, but then that would not be fair to my husband who loves to eat out. So, I go and deal with my time limit. This did not get this bad until they took out a foot of my small bowel and did a resection.

Quit hiding how bad you feel, your husband needs to know when you are all done it, otherwise he is getting mixed signals from you. As far as your children are concerned, seeing their mom in pain, this will teach them what real compassion is and how to be compassionate to others which is a wonderful trait.

Keep volunteering when you are able because it is appreciated by someone.

Great to hear you got an increase in your meds, may just be what the dr ordered. Take care.
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