Still finding limitations
 

I have small fiber PN for over 11 years and my husband and I are on vacation with good friends and we r at Disney world - I found myself needing a wheelchair and slowing everyone down. I thought I knew my limitations but this was way over my head! Disney is so accommodating for wheelchairs but I didnt think I was there yet. Very humbling. I took the day off today with everyone off to the beach - hard not to get discouraged. Just kind a want to go home ----- understand?

I do understand. So, so, understand. My family's activities have to revolve around me. All activities depend on my pain level; whether we go to a function, stay home, whatever, everything depends on how I feel or how well I can cover up my pain. So when I think I can do something and we say yes, then I find out it is too much it seems like such a large failure. It makes me just shrivel up inside. I literally huddle-over and feel very, very small. So I can understand how you feel. I dread the time when we finally have the money to go to Disneyland, because you really have to have endurance to go there, and I know I will end up in a wheelchair. And like you it will make me realize what my situation really is. I have had to really work at accepting my situation, I've only had pn for 3 years and for the longest time I was sure it was going to go away; you know, denial. Now I'm beginning to guess that this is just my new life. I am sorry your going through it. I really do empathize with you! It can really catch you off guard sometimes when you see you own limitations. It happened to me the other day: I saw a couple of other moms getting ready for a fundraiser and I used to be a very involved mom, especially with fundraisers. Now I have to accept my limitations and one is that I can't be on all these volunteer committees. It was very hurtful to me to not be involved and I just wanted to go home and crawl into bed and hide. I understand that this condition can get discouraging. It really, really can. At least I hope you haven’t experienced this: It has even got to the point in my family where I am used as an excuse to not attend those "undesirable events" by my husband and his aunt (the caregivers for me and my children) even when I feel fine -which sort of is annoying :p! Please know there is a ton of empathy here!:grouphug:

it long ago got to the point that my familys activities dont revolve around me. there are many things i cannot do, but I will not hold them back from doing them. They have lives to live also.

Yes I understand but I give you huge amount of credit for going. I would not even attempt this or a vacation in general. I think Disney is like a marathon so though yes it is sad to not be able to that does not mean you can't take part in other more low key things like going to dinner or maybe to some shops? I know it is hard to not focus on the can't but still other things can bring pleasure too. I am not trying to take away from this battle just hope you see that you tried something many like myself would not and also to maybe focus on some things you still can do that are not so extreme.
Sending warm thoughts and hope today is brighter.

It becomes a depressing cycle, you stop getting involved and "accept" so we stay home and start reducing our exposure at first gradually and then we seem to be home all the time and its an effort just to go to the letter box.

There is a real danger here which I discovered when I got better and started walking a good distance again and that is atrophy. It really sneaks up on you.

Its taken me 2 full months of climbing stairs again (we use an elevated train here) to be able to walk without holding the rail.

The trick is to push hard through the pain barrier so your muscles dont become 'untrained". It really is a matter of use it or lose it, easier said than done though :(

Thanks friends
 

Im not sure why I posted at the time - but I sure do now! As much as my husband and friends try to be so understanding ---- it really is all of u that truly understand. Most of the times I am so positive, but the reality of it all is my life keeps getting smaller - still at Disney world one more day and I have been in a wheelchair each day and still got POOPED. Taking yesterday off just to rest was a huge help - we go home tomorrow. Thanks for understanding sometimes we just need to vent!

Try and enjoy some of your last day, it will be hard for the rest of the week but come on here and we will help you through. I almost felt as if I was in the hotel room with you because I could feel your pain and frustration and anger at a different life gone by.:hug:

Thanks for being there everybody it is such a comfort!

Thanks for understanding!
 

You all have made my week work - knowing someone understands is huge. Off or home tomorrow thanks friends. Love this site!!