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Need advice for long car trips and how to handle the pain

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Posted 5/16/2012 3:33 PM (GMT 0)
My family must go to Washington DC this weekend for my brother-in-laws graduation from Georgetown Medicine. In a way I am looking forward to taking a trip, but I also dread the pain that comes along with a car ride anywhere. We are about 2-1/2 hours from the hotel on a good day with no traffic. We are planning on stopping at the Baltimore Aquarium on our way down as a fun activity for the kids, and I will have my wheelchair with us for periods of long walking or standing. We will head to the hotel to rest and relax Saturday night. My husband's entire family will be at the same hotel, just a room away from us.
I don't always get along with my sister-in-law, and my hubby fears if I am in the same level of pain as I have been this past week, that I will be too short or the sister will find some fault with me and pick a fight or disagreement. So I would love some advice as to how to make this trip as painless as possible. Or maybe advice on how to deal with difficult people so I don't end up taking the focus of the day away from hubby's brother.

He has accomplished so much, and graduating from medical school is a big deal, but for him, Georgetown was his dream. He is going into pain management and anesthesiology eventually, and I would rather eat crow than ruin his special day.

How do you stay comfortable on long car rides? Any ideas on how to make the sitting before the grad ceremony bearable for me? I can't sit up for more than an hour before my pain starts spiking out of control. With my abdominal muscles bound to my bowel, sitting up is agony after a few minutes, and standing for any length of time is the same. Heat always helps. Does it seem silly to get heat packs normally used for hunting to place on my abs when I need it at the ceremony? You should see the prescription locker my husband got for traveling with controlled substances. UGH. Help please so I stop stressing about what his family will think of me!!! smhair

Thank you for any suggestions, or just a reminder not to stress. I hope everyone's pain is low.
Mindy
Posted 5/16/2012 4:14 PM (GMT 0)
Hi Mindy...

One of the things that I have learned when dealing with anyone that I may have some issues with is kill them with kindness! Seriously....it's not worth YOUR health by getting stressed...angry...or upset about anything someone does or says...

YOU have the control over whether you let something they say bother you...or just roll of your shoulder.

Now...this is completely different if this was a spouse that you were living with 24/7 and they are harming you physically or mentally...Then that needs immediate intervention and getting out of that situation....(Just using an example here)..

But for someone you see periodically....just try to be as kind and caring towards them as possible...Don't discuss your pain issues or anything like this with them because you won't get the response you want...

Just keep the topics to generic things....

Now...for the car ride...I just plan out the trip to take a bit longer with more stops so I can use the restroom and stretch...I also make sure I have my iPod plugged in with all my favorite music to sing along...

And for me...I am a bit different in that I love to drive...and actually prefer this over to just being a passenger. It helps me focus on something else besides the pain...and it makes it so much easier with bumps or starting/stopping in traffic/lights....I can anticipate the movements....

But that's not for everyone...If it's best for you to take medicine...and watch movies on a laptop or iPad....or use headphones for music or listening to an audiobook....Try to do whatever you can to make the time go by faster...

As well as try to plan the evening once you get to the hotel to take a nap/rest before dinner or have an early evening....

Bring whatever you need to for the Aquarium and ceremony...If that is heat packs...then do so...Please don't care what others think or feel about this..Do what YOU need to do to take care of yourself...It's going to be pretty warm here so make sure if there is anything outside...then bring a hat and way to not get too much sun.

And have a nice, sit down, but calm and kind conversation with your hubby before you all leave about what you need from him to make the trip easier...And to help stick up for you if you need to rest the evening you all get there he can just tell them you will be along shortly...or will see them in morning....And that you may not be able to do every single thing/activity that they want...Because you want to be fresh for the actual graduation ceremony and celebration afterwards...

Those are just my thoughts...I've traveled a lot both personally and professionally for my mission work. As well as I mentioned...dealt with some people who are not my favorite...LOL...This is where I use my Christianity to be kind and caring towards others.....Lead by example....

Good luck....and hope that you can have fun...Hope that there are great moments that you can find to enjoy with family:)
Posted 5/16/2012 4:27 PM (GMT 0)
Mindy I really don't have anything to add, Snowbunny covered it all well. Just be sure to make several stops to get out & move around. I am betting you will handle this trip better than you are giving yourself credit for, instead of thinking of the negative things, think about the fun at the Aquarium, getting a change of scenery which many with CP do not have the opportunity to do and getting out with your kids & husband. Like Snowbunny said its up to you on how to handle the unpleasant people. Now, unless you are wanting to sit with the entire family at the ceremony, take the wheelchair and sit in it where you will be more comfortable. I am sure there will be arrangements for people in wheelchairs.

Go and enjoy yourself and don't sweat the small stuff. This is really a short trip so you will do fine. Have fun!!!
Susie
Posted 5/16/2012 4:42 PM (GMT 0)
There are some specialty cushions you might want to look into.

I use the following:
http://www.amazon.com/Drive-Medical-Protection-Wheelchair-Cushion/dp/B002VWJZHE/ref=sr_1_2?ie=UTF8&qid=1337186326&sr=8-2

A more expensive option is:
http://www.amazon.com/Roho-Cushion-removable-Charcoal-Fabric/dp/B000OXDJ1U/ref=pd_sim_hpc_1

I've tried regular pillows, memory foam, etc. and for my needs, I want something that does not crush flat under my meager 165lbs weight.

If you want something for your back, have a look at the obus form.

Lastly, if heat helps, have a look at:
http://www.amazon.com/Wagan-IN9738-Black-Heated-Cushion/dp/B000ANOUHQ
Posted 5/16/2012 5:34 PM (GMT 0)
Hi Mindy

I know how you feel all to well. I hate long trips. I too would rather drive as Snowbunny mentioned. Just wanted to make a suggestion if heat helps you. I just purchased a pack of ThermaCare HeatWraps. They wrap around your waist and provide heat for up to 8 hours and work quite well. I find it helps to have something to distract you during the ride as Snowbunny mentioned. Having a portable DVD player or computer or IPod or IPad can be a great source for a pleasant distraction. Also stopping when needed to stretch and walk a little seemed to help me a lot. As for any possible confrontations, just remember your in control of your emotions. Like the saying, water rolls of a ducks back. Just refuse to allow anyone to upset you.  I wish you all the best and hope your trip turns out to be a lot better than you expect. Please let us know how it went. Take care and stay strong.

Stingray

Posted 5/16/2012 6:12 PM (GMT 0)
Traveling is difficult. It is umbearable so I send my good wishes and stay home. But, we are going to southern Ariz. in late june. We live in Texas. We have a van and we are able to fold the 3rd seating out of the way. That way I build a bed witch is very comfy. That is the only way. So, I love to drive too so I will just change back and forth a lot. My hubby understands and goes along with me to keep pain at a minimum. I am from Texas and many Texas cowgirls keep their ladies 38 pistol in their purse. Probably just letting your trouble making sister-in-law see the pistol as you are cleaning out your purse. I hope you know I am not serious about shooting anyone, or almost no one. Hehehehehe........Like someone else said, have your toys available for music or movies. I hope there is a way to make a bed so you can really stretch out. Thats my main suggestion that I know works for me. Have a great time and let any negativity role off like water off a ducks back.
Posted 5/17/2012 5:46 PM (GMT 0)
Thank you all for the wonderful advice! We bought the heat packs and therma care wraps, and my husband and I planned out times to rest and what to say to his family.

I found out truly why I fear this trip. His family is going to get to see how much pain affects my life and his life. They don't see us more than a few hours at his parent's home for visits, never overnight or when walking has been required. I am afraid that some in his family may decide that its their mission to help him see how much my illnesses affect his life.

So I talked to my husband and realized that he is proud that I am even going, because it would be easier for me to just stay home. He loves me, illnesses and all, and no amount of anyone telling him to be ashamed of me, or that I am not good enough for him, would make him stop loving me or leave me. He knows that my illnesses affect both our lives, but he is committed to loving me for life, not his family.

So I feel a bit better about going on this trip. My sons, my husband are proud of me going, not ashamed and taking me along because they have to. No one will be embarrassed if I can't stand, or need someone's arm or assistance. My husband said if I feel bad, he will hold a heat pack on his abdomen too, so I don't feel alone. He bought enough hand warmers (hunting ones) and therma care for an army!

This trip will be good. I get to do things with my sons, like the aquarium and maybe the zoo down there if I am feeling up to it. We can see the graduation, eat at some wonderful places, and have fun as a family. If anyone starts anything, I can simply kill them with kindness or say that this is not the time or place and let it go. The problem person doesn't plan to sit anywhere near where their are places to accommodate wheelchairs, and have told hubby's parents to choose between sitting with their family or our family. What a laugh~ who would put their parents in a place to choose between each other?
Oh well. I am going to choose to have fun and make the most of this trip. We don't have a van, only an old 90s sedan, so I can lean my seat back, and my boys are going to allow me to use the ipod, I have my nook, and lots of support.

Thank you all for your help.
Posted 5/17/2012 5:52 PM (GMT 0)
Thanks so much for a great update Mindy!!!

I bet you feel SO much better after talking out eveyrthing with your hubby and good for you for recognizing what the real fears were...That is a great sign of a healthy relationship to discuss these type of issues...

And you sound like you are prepared for anything this weekend and going in with a really positive attitude I think will make a big difference!

As so many of us know with chronic pain...we are going to hurt no matter what....so finding the good and cherishing those fun times with our family when we can helps us have things to look forward to...

So yea for you!!!!

Sending you hugs and prayers for a safe and joyful trip:)
Posted 5/17/2012 6:45 PM (GMT 0)
Hopefully if anyone does have any comments in regards to your husband it will only be to praise him for taking his marriage vows seriously and his strength of character to be with you no matter what may come.

Should anyone choose to say anything negative like he would be better off with someone without any health issues then either let it go in one ear and out the other or respond with a reminder that you both vowed to be with the other one in good times and bad, for richer or poorer, in sickness and in health.

It sounds like you have things pretty well in hand. The only other thing I could even begin to suggest is to think about taking a reusable microwaveable heating pad with you to help save the wraps for when you must use them and also as a backup/additional source of heat. All truck stops and most all convenience stores have microwaves that you can use while enroute to heat up the pad and if your motel room doesn't have a micro then odds are good there will be one in either the snack room or in the office. Depending on the pad, some will stay quite warm/hot for 1-2 hours.
Posted 5/17/2012 8:17 PM (GMT 0)
I generally use a pillow for my back but I might try some of the things listed above because after about 10 minutes the pillow is flat and does nada.

Mindy I hope your trip goes smoothly and that you have a good time. It sounds like despite his family your husband is ready and willing to do whatever it takes to see that everyone has a great time...what a wonderful man. Lol.

I myself have a trip coming up, I'm going up north (CT) for a week to see my dad and that side of the family. I'm nervous and excited, I'll be traveling alone, and taking my wheelchair. At least the flight is non-stop both going and coming home. I think I'm going to end up using some of the great advice here.

DEFINITELY update us when you get back and tell us how awesome the trip was!
Posted 5/17/2012 10:59 PM (GMT 0)
You can get an adapter that plugs into a cigarette lighter so you can plug in your regular heating pad in the car. They are not too expensive and are probably cheaper than using the disposable ones in the car. They sell them at Radio Shack, Best Buy, and other electronics stores. I suggest you bring the heating pad with you to make sure you get one that is appropriate.

I have heated up the microwave heating pads and put them in an insulated cooler for trips. It works ok but I would only recommend it for shorter trips (4-5 hours). If you do plan on microwaving your heating pads while on the road, bring a small towel to wrap them in, roadside microwaves can be pretty grungy.

I used to fear trips because I would guilt myself into doing everything then suffering terribly afterwards. Now, I do what I most want to do, then I rest in the hotel while my family does their thing. If I don't want to go to dinner, they go and bring something back for me. They understand that even though I am not with them, I am enjoying knowing they are having fun. Once we all got rid of the guilt, we really started enjoying trips. Plus, I love having some time to myself.

I hope you have a great trip!
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