Family, Friends, and Relations

[Alijon]

I really need to hear how everyone is dealing with their friends and family. This disorder, apparently being terribly enigmatic for those without it, despite repeated attempts to explain, seems to place and unusual and added burden on those with it, namely the "just push past it" guilt trip.

My disorders used to come and then stop. When the pain stopped I'd be out the door. That was years ago. Now... I have very few days without some kind of pain and even when I do feel relief it isn't to totality. This past year I just quit trying to do things. But adopting this approach means not seeing any of my extended family - mom and brother included. Do we just get used to living without them? It could be years or the rest of my life.

I know my mom and brother are having to adjust to the new me too. I don't like it any more than they do. But they refuse to stop asking me to come see them. I have become somewhat frustrated and guilt ridden. I know they just want to see me and I would love to see them (as well as enjoy an endless list of activities I used to do) but I can't. I have no idea whether or not I'll be able to get the groceries today muchless plan a vacation. Communicating via email and phone aren't enough. They offer to look after me and let me be sick at their homes. Which is kind, I know, but I can do that at my home (and it would be easier on me). The driving is hard on me and having to deal with the personal and embarrasing aspects of my disorders in someone else's home is just not what I'm going to do. But that may mean not seeing any of my extended family for years. They could stop by my home for an hour or so but they don't understand that they can't spend the night.

What in this world do we do?

[ICNDonna]

I'm fortunate that most of my family are very close (several within 15 miles; the furthest 550 miles) so I do get to see them often. We do go to their homes and if I'm not feeling well, I just lay around there, but enjoy their company. If you can make it at all, it's good for you to get away from home occasionally.

Have you seen a pain specialist? Sometimes they can really help us to get back to living. Are you following an IC diet? And if you are a smoker, that can definitely cause added pain.

Warm healing thoughts,
Donna

[Alijon]

Hey Donna,

I have seen a specialist in Greensboro, NC. He has me on Elmiron and lg doses of Percocet. I was already on Neurontin. I don't smoke and my diet, such that it is, is almost entirely rice. Its about the only thing my husband I have been able to identify as non-reactive to either the ic or the ibs. I've had the un-known digestive disorder since birth. My mom tells stories of how much pain I was in as an infant. The ic started around 13 yo after an accident. But for some reason I enjoyed a long near-remission through my teens and early twenties from both disorders. They began to ramp up after baby number two (who is now 14).

I understand their frustration because when I say I was active that's almost an understatement. I snow skiied, I hike all over the US, I repelled down mountains, I homeschooled the kids (through elementary sch), I took my kids to see everything there is to see is the great big world from the time they drew their first breath, I traveleld extensively, and I always made sure that my entire family got together at least once a yr. Now... I sit, I crochet, I watch every Agatha Christie movie ever made, and I watch TV. When I can cook I fix big, wonderful dinners (that I can't really eat much of it but they love it so... :).

I would love to be able to have short visits that I could control when needed. But my mom is either 3 hrs round trip away or 6 hr one-way, depending on which house she's in, and my brother is 4 hrs one-way. My mom is always asking me to take European trips with her. I'd give up a couple of teeth to do that but she's knows I can't.

There are just so many feelings. Being reminded of what you no longer can do. Guilt and loss over not being able to see them. Frustration of not feeling understood. And at a complete loss for how to handle this.

I try to help them understand for a while then I just have to give up and hope that time helps them grasp it better. Then I answer the phone after ignoring their calls for a few rounds and hope its better the next time. Its maddening.