Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Anyone struggle with learning how to live again.

Aug 08, 2016 3:40 PM

So today I had PT and met my new therapist. I'm working so hard in therapy but I tend to push to hard. Which is so odd to me. Learning how to be easy with yourself. Does anyone else have this issue. Learning how to manage your activity and movement? It's crazy to me the one thing my PT says to me is that I push to hard to fast and end up setting myself back a bit. They are adding cancer rehab to my PT schedule due to side effects of the lupron therapy.
Sometimes I feel as if I'm.seen as stubborn when I try to push or do a little extra outside of therapy. I was told that the additional therapy is actually gonna be focusing on quality of life training. So hopefully this will help me learn how to be easy with myself where I am now. So that my bidy will be ready when it's time for surgery again.
Sorry if I'm babbling just wondering if anyone could relate?

Aug 08, 2016 4:02 PM

Yes I can relate; although it sounds like our troubles are quite different. I don't have cancer - I don't think. Among other things, I was diagnosed with a brain tumor 1.5 years ago and so far, I haven't been told anything more about it - I haven't even been sent to a specialist.

But in answer to your question, I have been struggling with learning how to live again since my accident 9 years ago. In fact, it took me 7 years to understand /believe that I am disabled now. I guess that must sound kind of ridiculous, but I so wish that in the beginning instead of being loaded up with drugs, I'd have been given counseling instead.

I'm sorry to hear that you have more surgery coming up. It's so hard knowing that no matter how well you do in PT, or any other part of your life, that your life is essentially on hold. And I hear what you're saying about "pushing too hard". After I shattered my Pelvis, I was in 3 different hospitals for 6 months. I wasn't allowed to have PT so instead of turning into a complete vegetable, I would lay in my bed and use little 5 pound weights that I had smuggled into my room. I got caught one day by my doctor and, to put it mildly, we had such a fight over it that she transferred me to another hospital. After that I was kind of labeled something of a trouble maker. So be careful with that - they tend to take their authority rather seriously.

Well my dear, I hope that having a bit of contact with someone who really does understand will help with your day. Lately I have more poor days than good ones, but I'll check back when I can. And please don't feel obligated to write, but if you want to check in or need someone to talk to, I'll do my best to be here.

Take best of care,
Katie.

Aug 08, 2016 4:41 PM

Thanks Kate..it does help to know that people understand. I love this group for that very reason. I'm relatively new to this life unlike u who have had year to live with your new you. It makes me feel good to know that it does take years to get it.
My diagnosis is fairly complicated. I don't have active cancer persay. My tumors are non Cancerous. however,they went untreated for so long that they have be one massive and multiple in size. At last count 15 eleven cm tumors in the abdomen uterus and attached to blood sources near and on the bladder and spine. Shewww...ha..that's a mouth full.. so considering my situation and the fact that I have 1 generation tie to cancer. ( Dad and sister) I'm being treated as a cancer patient.
I appreciate your advice on following drs orders I will be more mindful of how closely I follow orders. As with you if u ever need to talk feel free to PM me or write here.

Aug 08, 2016 6:24 PM

Newfibrogirl, I am familiar with a few places, Mayo, being one that does a multifaceted pain program similar to what you are describing. I wanted to do it, but they have you stay at a hotel for 4 weeks and take you off of many of the pain meds that are narcotic. I know that if I am off of my meds, going to group from 8am-5pm probably won't work well for me. If you don't go for the therapy and groups they kick you out and you have an against medical advice discharge on your insurance. I feel lucky that I am a recovering alcoholic so I get therapy and AA. I think if anyone was to say that they didn't need or want the extra help than they've given up. If it works for you,do it! You will look back and be proud of your accomplishments!

Aug 09, 2016 3:08 AM

It's not easy giving up you and reinventing you. It sucks but it is necessary. With time you will know when you can push the envelope a little more, knowing that there will be a payment for dping it and being prepared. Badically, you completely reset your life so you can become positive and have a life, not just breathe. Gentle hugs!

Aug 09, 2016 11:30 AM

Fibrosucks, I love how you said "not just breathe". 5 years ago I thought I was just basically taking up oxygen. Between my sobriety and learning to live with Fibro and RSD, I have learned that I can accomplish a lot, just different than before.

Ready to start relieving your pain?

Join Community