Support and Chronic Pain Community Group
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I have been thinking about the things I have had to change over the last couple of years due to pain. Not in a negative way but in the sense that I've learned to adapt to a different way of life and move on, not dwell on what I cant' do. i.e.
1. I buy baked goods - I used to bake alot; cookies, biscuits, cakes and bread but most of it is not worth the pain anymore
2. I don't clean like I used to - for a long time it bothered me that my house isn't as shiny clean as it used to be but I'm accepting a new standard for clean... if I'm not tripping over stuff and the kitchen doesn't stink its clean enough lol
3. I see my family less - they live 1-2 hrs away and I just can't drive that far regularly. I let them come to me and its alot less often than I'd like but that's their choice, they know and understand that I can't drive that far.
4. I take opiod pain medication. I swore I wouldn't ever but that was before this kind of pain. It is helping me and now I understand the difference between dependence and addiction.
What have you had to change about the way you live day to day?
1. I buy baked goods - I used to bake alot; cookies, biscuits, cakes and bread but most of it is not worth the pain anymore
2. I don't clean like I used to - for a long time it bothered me that my house isn't as shiny clean as it used to be but I'm accepting a new standard for clean... if I'm not tripping over stuff and the kitchen doesn't stink its clean enough lol
3. I see my family less - they live 1-2 hrs away and I just can't drive that far regularly. I let them come to me and its alot less often than I'd like but that's their choice, they know and understand that I can't drive that far.
4. I take opiod pain medication. I swore I wouldn't ever but that was before this kind of pain. It is helping me and now I understand the difference between dependence and addiction.
What have you had to change about the way you live day to day?
Same as you with house keeping, it's frustrating but I've learnt to accept that one.
Cooking, I used to enjoy, now I hate it! We need to eat, but to cook so it's quick and easy, sometimes not even being able to, pain variations can't be predicted. I used to freeze some, but the family complained, so I taught my daughter to cook her favorites and my husband will sometimes go to the local Hotel to eat! Doesn't worry me now, but I used to feel weirdly guilty....
Just being able to decide to do something.....and do it without thinking of the consequences ....that is on a reasonable pain day!
Wandering around Markets
Restoring furniture.....I loved that!
Girlfriends, that turned out not to be.....makes me treasure the true ones even more!
BBQ parties........cocktails and Dancing!
Music, I often can't tolerate sound, not even gentle music, I always listened to music!
My ability to concentrate when I want to!
I guess my list is really about not being able to be the old me! I give up....I'll need to work on myself a bit more before I can write too much, I'm feeling frustrated! But I understand how you feel....we do have to "let" so much GO.....but I'm grateful for the pain management Doctor I have.....without him I wouldn't be able to do anything!
The things I can do are limited, but I'm thankful .....it could be worse! A friend reminded me, it's ok to grieve....But The SUN will come up tomorrow! X
We were really into playing music and I was getting fairly good on the drums (still a novice but improving), Now, it hurts too much and takes so much energy that I seldom play. Hubby plays his acoustic guitar everyday for a few min. but we have no one to play w/. Our friends have either passed away or drifted away from us because we can't keep up w/ them any longer. An hour or 2 visiting is our limit and even that is usually a struggle.
When we both worked, we weren't rich or even upper middle class but we didn't have to worry about money all the time. Now its a struggle
We lost our insurance a year ago. I will finally be eligible for Medicare in March, hubby in April, thank God!
I used to belong to several clubs and civic orgs. I had to drop them because I couldn't be counted on to do my part and felt so guilty. And could no longer afford the dues and other little financial contributions that were "expected".
Gardening (one of our biggest bonding/ teamwork activities
I don't feel sexy.
Can't wear cute shoes although I've discovered Rocket Dog Shoes which I love.
My house, my appearance, my creativity have all gone way down!!!!
Can't thrift shop or yardsale except on rare occasions.
I struggle to hold onto my sense of humor. Its still there but part-time.
I feel like a "party pooper"
I feel disconnected from EVERYONE often.
As for things that I have changed or lost or what have you...my whole life!
Some good things:
1. I get to spend more time with my children. This is especially beneficial for my little duck...I no longer feel torn between trying to be at work and be there for her.
2. As I no longer have to spend whatever good energy I have forcing myself through every agonizing moment at work...I have more stability in my pain which helps me feel better because I am able to rest as I need to--most of the day
3. I spend a precious hour or so everyday (that I have rested up for and medicated for as well) making my family dinner from a seated position. I make dinner about 4 nights a week and, make sure my mom has a nice lunch/breakfast packed for work almost every day.
Some icky things:
1. I miss being a manager at my job, having people come to me for advice and policy help. I miss talking with clients, going to meetins, being an advocate etc. I miss my paychecks! I still cry or get teary almost everytime I drive past one of my old offices. I spent over 4 years working my way up--a promotion almost every year that I was there.
2. I miss having a life independant of my family...Able to make spontaneous decisions in a single bound! Able to walk around without the help of a walker/scooter or my family.
3. I miss my privacy! There is nothing like haveing someone help you to dress, bathroom, walk...sometimes, the simple act of roling in or out of bed!
Life has definately changed. I have to live the life I have now and I can't look at what I don't have anymore or what is not going to happen. Just my thought anyway...HEHEH HUGS!
3.
!. I am ashamed to admit it, but I don't think I would be as understanding abt. DH's pain if I didn't walk in his shoes. Yes, sometimes, when we're both tired and irritable, we can get in pissing matches about whose pain is the worst. LOL But for the most part, we're on the same page and try to "tag team" when one feels worse than the other.
2. Yes, thank God I no longer have to struggle to make it through a day a work, knowing at times I wasn't doing my very best. In my last job, I was a District Administrator and managed 4 staff and over 100 volunteers in four very large, rural counties. There were so many times I had to bite my tongue to keep from taking someone's head off and that's not my style. I just was so tired and hurt so bad that what seemed as "petty crap" could take me over the edge. It didn't but was a constant struggle to maintain my calm. There were mornings I'd leave the house in tears not knowing how I could make it through another day!!!
3. Until I was out of work and able to go w/ DH to his doc appointments, he was getting nowhere w/ them. I'm more assertive and communicate better (he was way to stoic and had a hard time explaining/talking their language. But w/ me pushing them and him, we finally got a dx. It wasn't a good one but at least it helped him finally get his disability approved.
/4,I can now foster pups. LOL
It effects and has changed everything in my life. I could write it all down, but that would hurt and take days!
There are things that have been harder to accept than others, but I accept it about myself. I didn't choose to be this way, so why punish myself with negativity.
The single thing that I can do to help myself is try try try to remain positive. Be true to myself and don't blame myself for what my body does to what's really me.
What I have gotten good out of all of it is a much deeper and closer relationship with God. He carries me when I can't take myself any more. He is the One I can always count on.
I also have gained more strength in myself. I have learned not to sweat the small stuff.
I learned many years ago that life isn't something I can plan. It has a way of doing it's own thing and I just have to take it one day at a time!
Hugs,
Toni