Sad

Everyone else is making plans and you are sitting back and watching... when you used to be the planner.

Plans to go to a special occasion in another state, approximately 5.5 hours away. Hop in a car, enjoy the ride. For them, sure. For me, not so much.

Anything over 2 hours I have to take shots because of my blood clot risk factor. Breaking it into more nights still leaves a drive longer than 2 hours and an additional expense of a hotel.

Take the train so I could walk around and not need shots? Leaves at 7:30am. My body won't even function til after 10, 11 sometimes. And the train is an hour drive away, so two hours just to get me to the train and back. And the added cost of a train ride on top of the gas of those who are driving.

Even if I take the shots...

I use a wheel chair if there is lots of walking. Put that in a tiny car and there's next to no room left.
And add extra needed space for my legs because of the blood pooling. My legs have to stay up. I need a whole back seat to myself for a longer ride.

My back also needs to be supported if it's longer. Or my muscles go weak and it will affect my diaphragm.

And all my dietary needs/restrictions. No I can't just let it go for a few days. I need coconut water every day. I drink regular water more than anyone I know. No fast food, how does that work while on the road? And not just foods. I need to eat and do things at certain times. Not because I "want" to... because if I don't my body gets thrown off so easily and I can't function. Routine is important. Routine is necessary.

Leave Friday, occasion on Saturday, return Sunday. Where is my rest day? It doesn't exist.

Oh but wait someone I would really like to see from out of town will be here at that same time which means plans immediately before or after all this as well. Not sure how that's possible.

And that's not even the end. I apparently have to travel 1000 miles away immediately after that.

How is this all going to happen?

It's probably not. I'm too complicated, and regardless of what anyone says, the fact is I am an added burden. I require accommodations, accommodations that sometimes aren't possible and sometimes aren't worth it because by the time it's completed I'll have absolutely nothing left in me to enjoy what I was even going there for.

Solution? First of all not having to be 1000 miles away on short notice, that would superbly help. That's probably the biggest factor in this. I just can't be go go go for that long straight. Not take that out of the picture hypothetically. Solution? Drive down 2 days there with a bigger vehicle accommodating to all those things, have 2-3 days in town, and drive down 2 days back. Which turns it into a 6-7 day trip instead of a 3 day trip, but then I could do it. Though I still can't because it comes back to the need to be 1000 miles away during that time.

I'm not complaining. I'm stating the facts. The facts of life... with chronic illness. Sometimes the hardest part is realizing how much it affects everyone else... and sometimes you just don't want to put them through that. But even if you don't want to put them through it, you hope they always want to be by your side. I'm glad for those who are.