Hi Everyone, I could use your help with a very personal dilemma. On the surface it's about travel issues, but really it's about so much more.

I'm fortunate to be in a relationship with an absolutley wonderful man, a "keeper" as my grandma would say - the love of my life. In general he's incredibly understanding about the TOS and the pain and very patient and I'm very grateful. The exception being - travel. He doesn't understand how/why it is so difficult for me to travel. His brother has cancer and we have travelled twice this year to see him, plus two other trips - and each time i got sick (on top of the TOS flares and fatigue). Now comes Christmas and he will go visit his brother on the East Coast for Christmas and, as supportive as i am of the situation, i feel i just cannot travel anymore this year. This, of course, is not going over well.

Part of me feels like i should make the effort but then again i'm always making the effort and part of me feels like it's his turn to understand what I'm going through and to understand that I do have limits. And that if I go, I'll just be making it worse by making it seem that yes I can in fact do anything if i just grin and bear it, even if I'm miserable. When in fact I'm getting tired of being miserable and feel like just saying no for a change. What would y'all do? Any advice?

Thank you!
Nolina

Nolina,
I hope communication will help, somehow a worakable agreement is there for both of you.

You have your hands full, I don't know how much or how close this friend is to you to really see how the pain affects you. His compassion for your travel, actually should be as caring as if travleing wiwth his ill brother. How difficult it would be for his brother to travel to him. You God bless you, may not have cancer, but you have a pain that eats away at the strength and creates pain many could not imagine.

If he knew when he got on a flight he would ahve a migraine, the head would feel such pressure, then it would make his neck stiff. It would hurt to hold his ehad up. So when he arrived at his distanation he would have to take medication, rest, maybe even end up at a medical clinic or ER if it gets so bad. Then traveling would be not so high on his list for himself.....

It seems that the wonderful man may only be so understanding to a woman without health issues. It maybe already that he expects you to "look" OK so you can freely travel. My heart has broken as I watch my daughter lose three relationships, because as they say her disabilities are not a part of the life they invision.

The young men wanted to pick up and travel, seek out hiking at the last minute, with a bed roll on the ground, get in a car and travel for 6 hours to the ocean. They felt she could "look" ok to do this, and when it was so difficult, the fellas eventually bailed.

Once she moved to Rehoboth for the summer, rented a home with a fella, all into each other. The expectation that she would work and pull her half of the relationship. I knew it was unrealistic, but what does a mother know.

In trying to do that, She worked as a hostess for JR Ribs, she ended up in the ER twice in two weeks and missing several days of work the next week.

He screamed, called me to get the lazy free loading *^%&^# out of there. Her pain scales were off the wall, her hands clawed, face dropped on one side and all he say was wasted weight he had to carry.

Some keeper he turned out to be. I was 6 months pregnant with my youngest and had to drive 4 hours there, pack a U-haul and move her back as the police could not help. It was a rental of his parents...

I am so glad that was the end of their relationship though, no marriage, nor children. It wasn't the end of those types of "keepers" that turned into warthogs.

If they could not see beyond the outside picture of of a whole body to the torment of the broken one underneath, there was never going to be compassion, understanding, acceptance of ER trips for pain control, of loss days, or even a true deep concern for the pain of his love one.

As a married woman to a man I knew my whole life, I cannot show my pain, I do not let them see when I hurt, what they see are " I must be being lazy", undone chores, huffs and puffs when they see something undone and have to do things their self.

The traveling is so difficult for my daughter, I am OK, I accomadate myself and do fine, however, I know after our trip to Orlando last month I will no longer take my daughter on a plane. That will be our last trip, she is not able to travel. Yet she says she wants to go to Paris or England, a boat cruise or even to California......dreams. I understood her pain and still couldn't handle the flare from her.

Before we left the ground, people on the flight were bothered by her walking about, she complained loudly of the seats at the back of the plane, no room to move, this was only the first flight. She was so bad that before the fight took off the flight attendant wanted to put us off as she was unfit for travel.

That is scary, like being on that show Airline where they take people off the plane.
Sorry to not paint a pretty picture, but your young man has to have a reality check of what life is going to entaol as a whol, the bad with the good.

Hi DiMArie, Thank you so much for the words of wisdom and understanding. Seems you are always there knowing just what to say. Breaks my heart to hear all your daughter has been through - must be so hard as a parent watching her struggles. God Bless the both of you, i truly mean it.

Guess i should have explained a little more about my relationship in fairness to him- we have known each other for what seems like practically our whole lives; dated all through college about 20 years ago, then, being young and foolish, broke up and went our seperate ways but fate brought us both to Texas and we ran into each other 3 years ago and have been together ever since. We have lived together for a year. When we met again 3 years ago i was still working - just barely - and had just had my 1st carpal tunnel surgery , and things quickly went down hill for me healthwise from there, with antoher CT surgery and the two TOS surgeries that following year. I think part of the problem is exactly the long history - he's always been in love with that healthy 18 year old girl from college and though he's been down the whole road with me and adjusted to the changes it's got to be awfully hard to reconcile the new limited me with his image of the healthy me he knew and fell in love with. I can't blame him. And the part of me that loves hime like crazy wants to just forget about the pain and go on the trip anyways just to make him happy but the other part says if he really cares, he wouldn't even ask me to put myself through that, you know?

Ugg. I think I'm just making too much of it all. I should just count my blessings (including not having cancer!) and leave it at that. Di Marie Thanks again for the thoughtful words and advice. You are indeed a blessing to us all here on the board.

Hugs
Nolina

could you make a compromise of sorts?

he goes alone for a short visit maybe a week before or after the Christmas Holidays? or on new years? Then you and he can still have your own Christmas and you wont have to travel??

My son's girlfriends family is in lower CA we are in OR - they are having Christmas this weekend with her family- so no one has to travel in the holiday rush.

Nolina,

Have you discussed this with your doctor?

I ask because my doctor allows me to temporarily increase my medications when I have an activity planned that will raise my pain/symptom levels.

For example - every summer I go on vacation with my whole family to a lake house that my family owns. It's a lot of stress on my body to travel there, sleep in a bed that is not mine, do family activities, etc... so my doctor increases my medications during my vacation week.

She also allows me to increase during the holiday times so that I can be more comfortable to travel and spend time with my family.

Also, my husband is a cancer survivor. He has some mild nerve pain in his feet on a daily basis as a result of the chemotherapy. Normally he does not need pain medication, but for things like family vacations or when he goes to a major sports event and he has to do a lot of walking or standing he has a big increase in his nerve pain in his feet.

His doctor prescribes a small amount of pain meds to use on these rare occasions when the nerve pain escalates due to increased activity. This allows my husband to be able to enjoy a family vacation, go to see a NASCAR race.... in fact he is going to a NFL football game this month - and he will be able to enjoy the game and do all the walking and standing without having to worry about the increased nerve pain because his doctor allows him to take pain meds for these types of events.

The only downside is that because my husband uses the pain meds only rarely, he gets a bit lightheaded and loopy when he does take them - so he makes sure to plan ahead so that he never has to drive to or from these types of sports events.

I don't know what types of meds you take or whether you have a doctor that would be willing to work with you to make travel more comfortable, but maybe it is something you can discuss with your doctor.

Take care,
Liz

Hi Nolina,
I can relate to you in many ways.. But it isn't my husband it is my family.. I live in So California and my family in Az. My means of travels are via car as when I fly as Di said there is virtually no leg room unless you fly first class and who can afford that.. And even though the planes are pressurized the pressure that is in them sets off my headaches.. Oh.. Life Sucks sometimes If I don't make it home for a major holiday.. My Mom becomes depressed, as my Dad has passed on and she lives alone and she is getting older and that just kills me.. My brothers live there but then again they want me to come home too.. So most of the time I take my pain killers and my husband God Bless him he at my wish packs me up and drives me to Az and then he flies back home so he can go to work.. Then flies back out to pick me up and drive me home.. Anyways by the time I get to Az I am so beat and so Sore I am virtually unable to do anything for a couple of days.. And this Christmas my husband has to work Christmas eve and Christmas day so we will not be able to have Christmas together.. I hate not spending Christmas with him..
I guess I am just too soft and too easy.. I need to think of my own well being a little more too..
Next time I will have to make the painful decision to not go home for a holiday they will have to come to me.. It is too hard to drive so far..
You will make the right decision. I guess we just need to put our foot down and stand by our decision and know it is the right thing to do..
Hang in there.. You will make the right choice..
((Hugs))
Dawn

Wow, thx all of you, you've given me many good ideas to consider. Still not sure what i'll decide but it's wonderful having your suggestions & support. Good luck w/ your own travel issues this holiday season! Hugs, Nolina