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Car trips: the necessary torture

February 7, 2012

This past weekend was Super Bowl Sunday. and Jack wanted to watch the game with his sister Sandy and her husband Ed. They were hosting a small get-together – in Washington, DC, where they reside.

Travel is extremely difficult for CPS patients. The conditions of modern American transportation are simply continuously stressful to CPS bodies.  To get anywhere, you most likely need to travel by car. In a car, you are tightly confined, in an almost crouching seated position, and subjected to continuous bangs, jolts, and vibrations. Even a “medically controlled” CPS patient is subject to flare-ups of extreme pain if stressed too much. Automobile travel is nothing but stress. The only way for a CPS patient to travel by car is to limit the days’ entire trip to six hours or less, and budget in frequent breaks of at least 30 to 45 minutes, where you can get out of the car, stretch, and lie the seat back for for non-vibrating rest. Of course, that “non-vibrating” rest is difficult to find in most roadside rest areas. Trucks, especially, make the asphalt in the entire area shake, and their roaring engines are painful to the ears. Or you can pay the price of a motel room – but for an hour? Suddenly “hourly rate” motels don’t look so low-life.

But how can you get anywhere if you don’t travel by car? Mary Simpson, the founder of the CPS Alliance, took a well-planned trip of hundreds and hundreds of miles around the US, visiting fellow CPSA members two or three years ago.  How was she able to stand so much time in a car? Perhaps she can share the secret, because almost all of our CPSA members find care travel to be a form of torture. For the worst affected, even a trip of a few miles can set off a flare-up that last for days. Since so much of American travel is only possible by auto, and so many members can’t really stand it, it means that many of us simply don’t go anywhere. We don’t visit our families; we don’t drop in on our friends. We don’t take a drive into the city to view that interesting exhibit at the museum. We can’t get to the sports event. Holiday festivities held in places hundreds of miles away go on without us year after year, until the participants forget we were even once fellow merry-makers.

For me, drives of over 90 minutes have been eviscerating in the past,. The oscillations from the travel,and the bumps and surfaces of the roads, transfer right up through the wheels, the transmission, and the frame of the car into the seat which contains my body. It feels as if I am being buffeted continuously, and the shaking is erratic. Sometimes the road will be smooth, as we find a freshly-paved section, and the tires will just pleasantly hum. Then, just as I am getting acclimated to the rhythm, there will be a jolting jump as the road surface changes to something else. Gravel, perhaps? A different, cheaper macadam? 0The awful chewed-up surface that is common when a road is in the process of being re-paved is especially distressing.

Most of us are also passengers, as opposed to drivers, and making considerations for the needs of a CPS patient means extending the time that the trip itself takes. Most people in America want to get to wherever they are going as fast as possible. I know the frustration that we are “not making good enough time” that causes my husband to say, “Can’t you wait til we get to Maryland House?” when I indicate that the buzzing is getting bad. He wants to get somewhere, as quickly as possible, and doesn’t want to stop for interruptions. For me, that buzzing isn’t an interruption that just suddenly popped up and began to make its self persistent. It isn’t the yen for coffee that springs up when you see a Starbucks sign, or even the need to “use the facilities.” The buzzing pain has been a continuous condition since the engine started and we pulled out of the driveway. That buzzing becomes more electrical, more chill, more burning. The temperature of the car, and the air blowing out of the vents, exacerbates it. The fact that there is no room to stretch my spastic CPS leg causes a severe need to move it, extend it, change position, find a way to relax it, The same sensation begins to dominate my arm. By the time that 90 minutes have passed, these sensations have gone from irritations that I can distract myself from, to demanding, door-pounding intruders. Nothing works to calm them; they must be obeyed. I need to stand up, to stretch, to move, to feel myself on ground that is staying in one place and shaking. I can’t wait anymore longer, so I ask, “Can we make a stop somewhere?” The response is usually something like, “Chesapeake House is coming up in 20 minutes; how about if we stop there?” All I can think is, “20 minutes of torture.” Those are the times when it’s difficult to remain cheerful, because constant pain makes me ill-tempered.

I understand what motivates Jack’s statement. He drives all day, from appointment to appointment, and he loves getting “into the groove” behind the wheel. Making a stop means breaking that mental state of happy concentration. my request to stop means breaking that happy state of farfegnugen. It also means slowing our progress. Psychologically, it’s a disappointment for him. The further south we get, the closer we are to the place he wants to be. Sitting with me, drinking Coffee at a Waffle House, is not the place he wants to be, and is actually a barrier to achieving his goal. So he’s always a bit impatient and in a rush when we have to make these stops. I feel guilty, and try to keep my requests as infrequent as possible. But what that means is that the trip itself can cause a flare-up.

That is exactly what happened the first time we drove to DC right after my stroke, back in 2007. I’d had my stoke in October, and developed CPS right thereafter. I was still getting used to my pills by the time Thanksgiving rolled around. Sandy held a big family get-together at her house, so we drove down. That trip was a CPS horror show for me. It took four hours to get there, since Jack didn’t really want to stop. I spent 12 hours in bed after we arrived, because I was so sick. I remember Thanksgiving dinner, and driving back, and then spending three days in bed being so sore, so on fire, and so discombobulated by the pain that I refused to make the trip again for years. For at least two years, Jack and Jake had to go by themselves, because I wouldn’t put myself through that again. Trains I can handle; the rails are much smoother, and there is space to stretch out and to move around. But car trips? I avoided them like they were Nemesis, always carrying inexorable divine retribution if I had the hubris to attempt one.

Gradually, I have worked myself up to longer trips, with planned stops. This trip to DC was a fast one. We left NJ on Saturday afternoon, and came back on Monday afternoon. I am fatigued today, after a 10 hour sleep, but am not a basket case. To what do I attribute the difference? Saying, “We need to stop NOW,” before the pain got too demanding, and taking an  extra gabapentin along with a B-complex. lots of water, and lots of protein (even if the protein came in the form of a “Monster Slim-Jim with extra Tabasco!”) helped.  The main difference is that I have come to think of traveling with CPS as if it were traveling with a small, unreasonable, extremely cranky child. Allowances must be made to keep this child happy, or the entire trip will be ruined.

The fact that I am the only person who can see this child, or hear his demanding tantrums, or feel his little heels kicking, his punches, his bites, or his ear-piercing screams, doesn’t make his behaviors more negligible. It means that I must let the others in my party aware of what CPS wants.

This April is my mother’s 85th birthday. I haven’t seen her since my stroke. I truly hope that I can make a 7 hour car trip to Boston to hug her on her birth-day.

Besides, I have to go to Boston to taunt my brother Tom in person about the way the New Jersey Giants beat the New England Patriots.

3 Comments leave one →
  1. Potsy permalink
    February 7, 2012 5:57 PM

    Another definition of CPS – to “Chaff Patriot Supporters”.

    I feel your brothers pain… I dont follow the Patriots, but I do have a sister who also enjoys her regular dose of raillery ;]

    • February 8, 2012 1:12 PM

      Chaff him I will! He was too used to seeing his team win the Superbowl, and certainly gave my sister (who lives in NY) and I a lot of noise about how the Patriots would eat the Giants’ lunch. I think he’s been away from this region too long. He’s forgotten how persistent we can be. If New Jerseyans were a dog, we’d be a terrier, like a Jack Russell or a Cairn. You have to pull us out of scraps once we get into them, and then we emerge from the hole with the stoat or rat crushed between our jaws.

  2. Alison Martin permalink
    March 22, 2012 10:10 AM

    We can fully sympathise with your sufferings, especially as you are in the U.S., where distances are so much more vast than here in the UK. Our car journeys are very similar though – my husband suffers terribly with central pain down his right side and car journeys are a torment … the cramped sitting position, bumps and jolts, air conditioning, heating, etc. It certainly does add to the isolation because we travel much less than we used to. At the moment, he is taking part in a research programme which involves a 320-mile round trip each month – he is absolutely committed to it, even though the journeys are hell for him. It typically takes us over 5 hours to travel 160 miles, due to so many stops. We used to love to travel abroad, but now air travel is out of the question. Tried a train recently but bumps and jolts were awful. I can understand what Jack feels too because I am the driver who just wants to get there but has to keep making stops (which I do willingly of course) and also constantly adjust the air conditioning and heating – he can’t bear to be hot but then the cool air on his face is unbearable. Problem is that motorways only have stops at fairly infrequent intervals and it is so upsetting to see him suffering beside me in between them. Our thoughts are with you.

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