Need advice from members who have been in the "cp battle" for awhile

Well you definitely are right,-- this is a warm and welcoming community! So you are in a good place by being here. You're among friends who have both compassion and understanding. Our sources of CP may vary, but we're all in the same battle.

One thing I found that was helpful was breaking my day into very, very small blocks of time. I learned, for me anyway, that on my good days, I would push it because I felt so great, and in turn, I took part in setting myself back a little.

We all have bad days, and we all periodically take steps back...but when we pick back up, we're further along than we were before.

So I started choosing smaller goals. Even on good days. I'd unload the dishwasher, and take a break, even if I felt like I could do more. Then I may fold the clean clothes, and take a break.

The key, for me anyway, was taking those breaks "before" things started feeling stiff and sore. I limit how long I'll do something....even sitting at the computer or watching TV. Frequently changing positions and activities, and actively choosing to take those breaks in advance,....

I still have bad days, and I assume I always will. Most people do. But we can lessen them or make them more manageable!

I know we want to do all those things on our good days that we couldn't get to do on our bad days....but keeping in mind we're also trying to preserve our quality of life. Mind you, this is an on-going, and very tough lesson for me because my nature is to push it. And I'll pay for it.

So I'm right there with you!



M.

IMHO one important thing to do is realize and accept that you will have bad days and that on those days what you can get done is going to be minimal.

I remember the days when i was under treated and there were no good days when!! The weeks turned to months of not knowing if i would ever get up again .

I come here to the forum and see those who struggle in that dark pain filled place that was once my life before the right Dr ,med,treatment and even a diagnosis. All in a time where i wasn't actively fighting back but i was merely existing .

I then feel hope that this is one day and tomorrow i will be back . I thankful that this forum and these folks that showed me the way exist and thank whatever fate out there brought me here and allowed me to learn a how to be get better and taught me that having a bad days okay because now there's more good days.

Thank you everyone for the great suggestions. Gives Me hope and strength. I feel I have come closer and closer to accepting this. Then a really bad say hits. Lol. My son is only 2 so still at home with me. My husband and I had a big discussion last night about me not giving up the fight. Between that Amd you all it has helped. Thank you. Just gotta keep pushing forward, looking for answers, and living for the next low pain day. Thank you all for your wisdom and suggestions.

I'm really working an that too, that it's a part of me. Giving myself permission to take a break is hard! Not being able to work is hard too. I grew up "you work your butt off and EARN everything you get." I feel pretty useless when I can't do that. Lol. "Pull yourself up by your bootstrap"s and "cowgirl up" won't leave my head or heart either. :)

Good morning Kt, the others have given you some excellent tips. Acceptance is a bitter pill to swallow. It does not happen over night either. You will grieve for your old life, old ways, anything that you did before CP hit you. You can rebuild though, it is one of the hardest things I have ever done. Just remind yourself, you did not ask for this new life but it is here & you can make the best of it. You are a fighter so you will get there. It is ok to have a pity party once in awhile, we all do we are only human. Just don't let those parties last more than 24 hours & always invite us to the party. People that dwell on their pain lose & miss so much by doing that. I think we all have done it though, it is very easy to do & can happen before you know what hit. Just don't stay there long.

Learning to pace yourself is another big issue. We get in the habit of on a good day we try to set the world on fire by cramming everything in or getting everything done. I think that is just human nature. We all do this too & then we end up paying for it. As Josh said take some time for yourself, that is for your survival.

Keep us posted on how you are doing......Susie

I would like to emphatically ^^echo^^ the above.

I agree there is a process we must go through, which is grieving. I'm still in that rocky boat, so I can sympathize with you. I was very athletic, and my job even involved me being athletic (personal trainer). When things started to degrade to the point where I could no longer do my "work" OR my "fun,"....I sank into a deep hole.

I spent 4 years in that hole, angry at myself, feeling everything from embarrassed to depressed. I kept thinking (as some people would bluntly tell me) maybe they're right, I just need to snap out of it.

Easier said than done, especially by those who don't have CP.

Part of coming to terms was finally giving in to the fact I needed a surgery. I had people around me who would make comparisons saying "well so-and-so has arthritis/scoliosis/stenosis, etc." and "they're doing fine, so why aren't you?"

This cut like a knife.

I've had several surgeries these past 2 years, six+ years out of work. I lost my "identity" when I lost my ability to be physical and athletic.

I had to define a "new me" which included accepting what this "new me" could and couldn't do.

Char brings up an excellent point, something I learned the hard way as well. I had a therapist who did not specialize in CP patients. She helped me tremendously in other areas of my life, but she was not trained and had no experience when I started to go through the last few years of my journey as things degraded.

She didn't get it. It's not her fault, she's good at what her specialty is.

But now, with that experience under my belt, I know better, and I'm going to see a new therapist who does specialize in working with CP patients. Towards the end, my previous therapist contributed to me feeling worse, not better, precisely for the reasons Char mentions. There really, truly is a difference.

I'm still mourning and still learning to come to terms. It's a process, and it doesn't happen over night. But you're not alone on that roller coaster ride, not at all! Making adjustments,....and especially accepting them, and not letting others try to convince you to go against what you know is right for you....ohh, can't emphasize enough how vital that is!

Hang in there, and keep posting. We all get it and understand. Compassion all the way around.




M.