Holidays are a chance to get away from it all, relax, unwind. To catch up with old friends or make new ones. To spend quality time with your nearest and dearest.
Holidays are hard. I used to love going away. We would pack up our camper trailer and disappear off grid for a few days. Being out in the middle of nowhere. Waking up to the sound of birds, the breeze in the trees and the laughter of our camp mates.
Now it’s a bit harder. We had to sell our trailer because as CRPS spread it became increasingly difficult to climb into the bed, walk around or be on the uneven surfaces of our campsites. It was a fair hike to the toilet, or to shower. So many spoons were just devoted to this and I had hardly anything left for the day. Watching everyone around me laughing, enjoying themselves, playing cricket. was hard. It hurt.
Now we have to call and book hotels that have easy access rooms. This is quite difficult sometimes because hotels/motels only have a couple of these rooms. The shower over bath combination is my mortal enemy. We have stayed in places where they tell us it’s a walk in shower, no bath. We arrive and it was previously a shower/bath combination and there is quite a large ledge of tiles to step over. How they see it as walk in is beyond me!
Some places we stay though, are beyond amazing. They ensure we are given the correct room, they are constantly opening doors, checking if we need anything. With rooms that have temperature controlled by management, they will always make it cooler for me, without batting an eyelid. Don’t get me wrong, I do not want people to treat me different because I have CRPS, but having them help is something completely different.
Travel is the downside to holidays. It’s hard. It’s sometimes rough and makes me want to scream. I get to the point where I don’t want to leave home, I want to stay where I am comfortable. I want to stay in the place I know I am safe. Where I can avoid masses of people or the states of strangers.
I get a lot less sleep when we are away, then what I do at home. I’m kept awake by pain at night, the strange beds not cushioning the right places. Feeling like I am laying on a jagged piece of concrete. I try to stuff pillows under my hip, but then my body is higher then my head. It does not work. I cry, I moan, I grumble and I get frustrated. I try to wish the night time away.
But the feeling you get being somewhere different, not having to make your bed or cook meals, feels just as good as it did before. Except now I appreciate it a bit more.
I miss the birds, I miss the wind in the trees and the crazy characters we would camp with. But we are getting to see a different side of our country and its pretty spectacular. We get to visit small towns that have been lost in time, and huge cities that are just mind boggling. There is nothing like coming home though, back to laying in your own bed. Some things have changed because of CRPS but not all of them are bad.
#holidays #CRPS #complexregionalpainsyndrome #anxiety #depression #changeisntalwaysbad #gettingaway