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Feb 20, 2017 5:00 PM

So,ive got a busy week coming. My PT plus med appointments. My pain has been out of control the last week. Gonna speaking the physical therapist about a change in my program. I've also got my first counseling session tomorrow. Very nervous about this. Never thought I'd need to have cough time. In addition I've got my infusion prep later this week.
All this while I've been struggling with lossing weight now thst the rumor is gone. Although it seems I'm left with nerve damage and pain. I've been advised by many to just don't think of it. But it so hard when all you want is a little bit more progress. So I'm very stressed and worried about all of this. My mind has been unable to close or shut off.

Feb 20, 2017 10:17 PM

Newfibrogirl it's still relatively early since you've had the surgery to remove the tumors so your body is still adjusting. What may have helped you a couple of weeks ago might cause you more pain now with all of your body still adjusting....organs still trying to settle into the space left, nerves still not realising that the tumors are gone and how you are coming to terms with the big change in your body....you might of thought you'd prepared yourself for everything that was removed in the surgery but the realisation of the magnitude of it probably hadn't quite hit home yet.
The mind and body are amazing and terrifying in how they work....what you thought you had come to terms with before the surgery doesn't really hit home until after and at the same time you might be repressing your emotions about it so it comes out in pain instead.
Looking in from the outside everyone is telling you not to think about it and you should of come to terms with everything already....I mean come on you had time to get used to this before the surgery....and you yourself probably feel you should be over it already as well (thinking yourself what I just put).
So by everyone including, yourself, thinking all that has actually made you repress your true feelings about everything and repressing your feelings can cause your body to bring more physical pain out in your body. You've known these appointments are coming up with also makes you more anxious which can also cause more physical pain as well.....all this adds up to the unbearable pain you've been feeling over the past week.
There is no way to close or shut off your thoughts when it's going round in your mind like this and using distraction can give you a little peace one moment at a time....if you find something that takes your mind off everything for one minute then it's worth doing for that one minute but don't try to force yourself to do more if it annoys you or stops working, stop doing it then try again in 5 minutes or do something else.

What may be helpful to you is if you write down what you're feeling and why your feeling it so you can get it 'out' of your system....write your worries down as well but don't reread any of it just move on to the next thought or feeling or worry. Get them out on paper or say them out loud when no one is around.....you can also include the irritations that people do and say then write/say why it irritated you - example

"Emma when you said I was being lazy because I went back to bed at 1pm it hurt me even tho you said it as a joke it still hurt because I was exhausted and in soo much pain"

This way you get what's bothering you out of your system without upsetting the person who said it to you.....I've found it very useful myself and that example is something that my sister said to me, even tho she said it as a joke and I know it would upset her if I went and said it to her, doing it this way means I get it out and can forgive her for saying it without causing anymore issues that actually saying it to her would have.
So if you're friend Sophie told you not to think about the pain you could write or say -
"Sophie when you told me not to think of the pain I felt you was being insensitive towards me, I'm in soo much pain that it's hard not to think about anything else"
- or something along those lines.

I'm sorry I've gone on a lot but I hope you can understand my ramblings and that it helps.
If I've said anything out of turn please forgive me and please let me know so I won't do it in the future as I've not meant to cause you any more distress.

I hope between all your appointments you find something that will help ease your pain and help you be more at peace with yourself xx

Feb 21, 2017 1:28 PM

Sezzy, thank you for your detailed comments. I did follow what you were saying and it all makea sense. I am having a hard time with the " baby steps" program my recovery team has me in.

I know it's the best place
for me to be in. I'm new to standing up for myself.
I appreciate all the advice and support I'm getting.

Feb 21, 2017 2:05 PM

Newfibrogirl I know it's hard when you feel you should be more able to do things that you were even able to do on your worst day before but please listen to the baby steps....I've found that I'm my own worst enemy and I can and have sabotaged my own recovery at times with trying to push myself too far and too fast because I thought I should be able to do it now, already, yesterday!!!
Be patient and try to use distraction as much as possible.
It might or might not help but my mental health nurse has been trying to give me real time coping strategies....I've found some of the strategies any of my CBT counsellors have given me were unrealistic in real time....in theory they looked and sounded great but I just couldn't use them in the moment!!!!
One of the things she gave me which helped (plus a lot of the stuff I said in my previous reply ⤴) is the flow chart picture I've posted with this. If you need me to explain just let me know (I'm not sure if the quality is any good for the pic)

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