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Old 07-09-2006, 11:11 AM   #1
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mainecoon66 HB User
Quality of life?

When I read the stories on these boards I am awed by the courage displayed in the face of so much adversity. While I have had cp for 5 years, I feel I am still a novice with so much to learn...something that has become even more clear to me after readingn the posts on this board.

What I was wondering is this - what do you find gets you through your day? How has your cp affected your quality of life? Your relationships? Your career? Your financial security? What gives meaning to your life?

I have found, and am still finding, that living with cp requires expectation management and acceptance (as Arranger pointed out so eloquently), as much as anything else. I find cp to be a constantly changing experience that requires constant internal and external changes, What is your experience?

At times I have felt that cp could eat up all my time if I let it, and that didn't seem healthy to me. How do you balance the time you allocate to managing your cp - dr's appts, researching new meds, managing treatments, applying for SSDI...- and allowing for other things in your life - relationships, careers, hobbies?

So, never ask a question unless you are willing to answer it, right?

In many ways I have it easy - I have health insurance, a supportive husband, relative financial security. What gets me through my day - faith, my relationship with my husband, family, friends, reading, my cats, painting when I can, volunteering when I can.

I have had to make dramatic changes in my career, and in my plans for the future e.g. plans to have children (this started when I was 35 and I am now 40). I have also found that it has affected my relationships - some have grown closer, while others have become more distant, often because people couldn't accept the medication I needed. I have had to adjust my self-image, and what I use to value myself

On the other hand, not to be pollyana, but I have tried to find ways in which cp has brought positive things - it has made me examine my faith more closely, I've had to learn to let go of the idea that I can control things, I have learned to negotiate with my body, rather than driving it at all costs, I have learned how much some people love me and that I can depend on them, it has made me re-examine my life and 'prune' the unhealthy parts where I can so that I can devote more energy to growing the healthy ones, I have learned never to blindly trust the medical profession (oops...just kidding. So, enough about me...

How else do you feel your cp has affected your quality of life?

Thank you in advance for sharing anything you'd like to.
Best,
Vickie

 
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Old 07-09-2006, 12:29 PM   #2
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Re: Quality of life?

Vickie-
You know, I've been asked this question by people who do not suffer from chronic pain, and I answer and when they hear the answer, they try and understand, but really, they never truly get the "gist" of what I am saying and feeling. It's nice to be able to share it with someone who knows what it's like to live with cp. (even thought it's a sad thought that anyone has to live with it) Here's my answer to your question:

My life has changed considerably since my softball injury in 2003. Yes, a simple fall running to first base started my downward spiral. A fall, followed by 7 knee surgeries in a two year time, which caused the nerve damage I have, and these things were followed by my back problems because to this day, I still have no quads in my right leg.

I used to be the "on the go mom". I was at every soccer practice & game- even on the field helping run drills during practice and sometimes coaching games too. I was the "drama mama" for my daughter's drama department and was at every practice and play. I chaperoned every field trip- no matter where it was for both my son and my daughter and volunteered countless hours at the schools and school activities.

My activities as soccer mom & drama mama have been reduced to sitting on the side lines cheering and sitting in the chairs of the auditorium as an observer. It's impossible to plan to be at all of the activities, because I have to plan activities that require physical abilities around my back & knee. This is hard to do when you never know when you will have a flare up. I do as much as I can, but I dearly miss being as involved as I was before.

It's probably obvious, but I can't play softball anymore which I dearly loved. I played catcher & short stop for our county co-ed league. I've also been told recently that I will never play again. Could have knocked me over with a feather on that one. Even though my head had already told me this, to hear it from a doctor just wasn't something I wanted to hear.

I've had to come to terms with being 37 and realizing that I have limitations now. I never knew the meaning of the word "limitation" before. I used to be in the medical profession, and now can't because you have to be on your feet all day when you are assisting in surgery. I can't stand for long periods of time. My husband and I own a plumbing company, so I run the office which allows me to be sitting in the chair, or up and moving around if I can't sit because of my back. I find office work monotonous and boring, but am thankful our business is successful.

We live on the Outer Banks of North Carolina, so we are right here at the ocean and I'm usually unable to walk on the beach without causing major pain flare ups with my knee and back afterwards. I do get stubborn and take those walks with my husband and kids because for me, being a mom and wife is worth the pain I will have later.

I haven't told my family (my husband and kids know about it) that I am seeing a pm doctor because I found out that when I was being treated on a continuous basis with pain medications by my referring doctor, some of them felt that I didn't need pain medications and even one of them felt I was faking my pain. Not a nice thing to hear, is it? They all think the doctor I'm seeing now deals strictly with accupuncture. I wish I could talk with them about it, but they never totally understood in the first place. They had good intentions, but their answer always seemed to be, "it's just going to take time. Be strong." I am strong, but I can't continue to be strong if my pain isn't managed properly.

I try very hard not to take pain medications in front of my kids because I don't want them thinking that popping pills is a cure all for every little ache and pain. I even hide my pain around my husband and kids for the most part because I don't want them to know just how bad I'm hurting. When I really am hurting bad, I tell them to go on out without me, and then sometimes when they leave the house I cry because I feel guilty for not toughing it out and going with them. I hate that feeling because they don't like going anywhere without me. They were used to having "on the go mom", remember?

I've dealt with guilt, sadness, loss, anger and several other things in coming to grips with this issue. But most of all, I've had to learn acceptance. I know there are people out there who have it much worse than me, so I try to be thankful for each "good" day I have, and even thankful for the bad days as well, because each day I wake up is a day that I am alive and have two beautiful, kind, loving kids and the most wonderful, understanding, loving and helpful husband in the world.

Sorry it was so long, but I just really did need to get it all out there. I am going to check this thread often, because I'd like to hear everyone's story. I think it's theraputic the be able to just vent all these things sometimes.

Lezlee

Last edited by ozzybug; 07-09-2006 at 01:47 PM.

 
Old 07-09-2006, 01:35 PM   #3
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Re: Quality of life?

although cp is something that is on our minds all the time its best not to dwell on the negatives.

all the emotions brought about by life changing pain such as guilt,sadness,loss,anger are all stages of learning to accept that pain is part of our lives

but letting these emotions get the better of you only feeds the pain and negative emotions even more.
its a vicous cycle and can get the better of you if you let it.

learning to accept that there is always going to be some degree of pain and making those days when you are feeling up to some activity count is important.

Its true that those who never experienced chronic pain do not "get it"
and at times may say things that may be hurtfull,even those closest to us.
I try to remember that they cannot know what its like and therefore i dont hold a grudge if they say the wrong thing.
Its very easy to feel alone when youre in pain so support is something i am very thankful for.

the support you find on this board is special because everyone here can relate to what you are going through and we can share our experiences with each other.

 
Old 07-09-2006, 01:38 PM   #4
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Re: Quality of life?

Well put Scotty

Lezlee

 
Old 07-09-2006, 04:52 PM   #5
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Re: Quality of life?

I'm fairly new to PM and am happy to say that for the 1st time in 2 years I had almost no pain yesterday!! It was like a miracle to me, although I kept sitting there quietly waiting for it to come, but it didn't. I had a very bad headache but kept taking ibuprofen. Today's a different story, however...the pain started creeping back in and I had to take my BT meds. I've been on fentanyl for about 3 weeks now, started with the Mylan 25 mcg and just got it increased to the Sandoz 50 mcg. Don't know if it was the doseage increase or the mfg, or most likely both. I have hope!! Now that I'm feeling some decreased pain I'll be more able to move forward again in the additional treatments that I've tried already but have been in too much pain for them to be effective.

I'm very blessed in that I have a very supportive husband and a wonderful daughter (she lives next door). And I'm going to be a Grandma for the first time!!! I'm also able at this point to cut my hours back at my job to 16 per week and pick up work at home. This will help me in being able to pursue more healthful time for myself and concentrate on getting better.

I also have 4 large dogs that bring me joy every single day. Oh there are lots of days that they bring me more than joy....sometimes sticks, sometimes muddy footprints but they are always willing to give me love and kisses and sometimes it can be very therapeutic just to pet them and feel their soft fur.

I also act....I do murder mystery dinner theatre and although I can't be in every show (I've had to accept my limitations) I can be in the ones that aren't so strenuous. It's comedy and it's alot of fun to be the one that is making people laugh. My husband and I do it together so it's just another way for us to have fun together. I do pay after a show with an increase in my pain, but it is good to be up and around and active. And as much as I want to help with setting the stage and carrying things around, I don't. I think that has been one of the hardest things for me to accept...that I just can't do everything that I want to anymore. One of the women in the show with me also has CP and she has been such a big help to me.

Every time that I start to get on my pity pot I remind myself of the fact that there are so many more out there that have it much worse than I do.

Probably the worst thing for me is losing hope.....but every time I set out to see a new specialist I regain my hope.

JeanneO

 
Old 07-10-2006, 06:06 AM   #6
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zoey1 HB User
Re: Quality of life?

Qaulity of life issues is different from person to person however one constant is there are down times for many of us especialy when there is a bad flare up and the pain is not in controll.
I use to be very active in my church, community, chior , that has changed due to the limitations and restrictions,
On days i 'fall' i remember and foucs on the things i can still do.
Joy comes in small doses from finishing a simple task to taking care of the chores i have around the house to spending time with my family.
No most folks do not understand what pain managment is i.e. however the one's going though it know.
In a way i still can remember initial diagonsis and railing against the wind with it and not accepting. At the point there is acceptance doesn't mean we have to not fight for on going care but at least we can fight to manage our symptoms.
At this point every moment that isn't dire pain is a win.

 
Old 07-10-2006, 08:19 AM   #7
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Re: Quality of life?

I used to cry & get pretty down in the dumps when I couldn't do things I used to.

But I think i've just gotten used to the pain. With my lupus flares, at least I had flare remission to look forward to. Now I also have problems in my spine & i dont really know what the outlook for that is. But I just think I can't sit here and be miserable all the time. It's too draining.

Yes, I have lost my friends, i've had to quit jobs because of pain, and I am single. THe way i am right now, meeting someone or dating is completely out of the question. I know I cant do anything fun and I don't know who would want to date someone that hunches & limps around and cant walk or stand for more than a couple minutes.

So whatever, it became too draining to dwell on it for me. I just stopped thinking about it all and go about my day every day. I just think it is what it is and that's just the way I am.

The only other thing I think that keeps me going is that I still work full time. My co-workers always say they have no idea how I can deal with this everyday at work and to be honest, I have no idea either. I just have to work, plain and simple. I need an income so to me there is no choice. At least that is 9 hours out of a day to be around other people and feel like im doing something, even though its extremely difficult.

Oh and I also have a pet. It is soooo true how much pets can help you when you're down.

 
Old 07-10-2006, 06:54 PM   #8
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mainecoon66 HB User
Re: Quality of life?

My mom has a saying "try and find joy in every day" and when I first got my diagnosis I found this hard to see. However, as things have gone on I have realized how right she is. Acceptance, and taking each day as it comes, seems to be a part of everyone's story.
JeanneO - I am so glad you had a pain free day - we all deserve those, and may we all have as many as possible!
Best to everyone,
Vickie

 
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