by Jody Smith
One of the things that can strike fear into the heart of a person with ME/CFS is the prospect of going to the doctor. Worse yet is the ordeal of having to travel a long distance for such an appointment. An hour or two traveling is bad enough but sometimes it’s necessary to be on the move for days, particularly if a specialist is involved.
Even a few minutes in the back seat of a car, lying down with eyes closed, can be crash-inducing for those who are severely ill — that is, the people who need medical help the most.
Ironic, isn’t it?
Consider having two people accompany the patient for the journey, if at all possible. That way the person with ME/CFS is surrounded by helpful people who are known and trusted on the plane at all times. So if one has to go get her something there is still another person to stay with her so she is never left alone. I repeat. A person with ME/CFS who is traveling should Never Be Left Alone.
What to bring along
The topic of this article is in response to an email from someone in extremely fragile health who needed to travel from the East Coast to Arizona. That’s a long distance, involving a lot of time traveling, and being far from home.
I talked with several people with ME/CFS who have had to hit the road or take to the air for some grueling medical tests and appointments.
– One caregiver gives her son some Ativan before he goes to the hospital and then again right before he is set to go back home.
– Bring ear buds to provide white noise. And put noise-cancelling headphones on top of the earbuds. Have extra cords and a charger for a white-noise program on an iPod hooked to the earbuds.
– Bring an eye mask to block the light.
– Closed eyes and a light baby blanket draped over their head may work better than a pair of sunglasses or eye mask for some.
– Bring along blankets and pillows that the patient likes. Have a pillow seat for the wheelchair in case sitting in it for a long time is necessary.
– Bring a hat with a wide brim. Transport can involve unwanted sunlight which can have negative effects on people with ME/CS.
– Bring food and water.
– Bring heat packs and/or cold packs and soft towels to protect their skin.
– Does lavender oil soothe your patient? If so, then bring some. Bring ginger if it helps relieve nausea.
– Make sure clothing is loose and light.
– Have ID cards, insurance cards, power of attorney document, living will on hand, all in a colored plastic folder. Prepare a card or page with an explanation of ME/CFS and the patient’s needs to give to people like flight attendants, etc.
– Bring extra bandages and supplies.
– Take along some kind of folding table or pad so it’s possible to lie down in the airport or other places where waiting is necessary.
– Is the person with ME/CFS able to talk? If not, consider cards, or pictures, or a Scrabble game, or other ways for her to communicate.
Plan, plan and plan some more
The most important thing is to minimize crashing as much as possible. Plan every detail so that what the sick person has to do and the amount of waiting required can be minimized.
Thinking everything through and having things in place beforehand can determine what this journey will be like for the patient and the caregiver. Precious moments lost because of uncertainty, indecision or having to search for something can demolish the smooth transition we’re hoping for, and can mean the difference between being functional and crashing.
Don’t leave anything to chance. Make no assumptions. Better to be over-vigilant than finding yourself stuck.
No pressure. Just a reminder of what’s at stake.
Visualize and make notes for every single part of the trip and have supplies ready. Have everything the person with ME/CFS might need right there, readily available, especially the things you know will be needed during the day.
If you’re driving
Traveling by car? Here are a few things to keep in mind.
– Make some stops along the way with the engine off and the car window open. This provides some precious silence, and avoids the need to be dragged in and out of the vehicle as much as possible.
– Consider bringing a stool if it will help to exit and enter the car.
– Give some thought to the seat’s position. Know before it’s time to head out what is the best positioning for the patient.
– Be prepared to do the work for the person with ME/CFS, by taking their arms and lowering them to the seat, and moving their legs.
– Help getting out might also be needed. Know exactly how you’re going to accomplish this before the trip.
If you’re flying
– If you’re taking a plane, there are plenty of people and scenarios to wrap your head around beforehand. Contact everyone possible involved in the trip well in advance. Get the airline personnel to help streamline and make things easier as much as possible.
– Take advantage of the airline’s wheelchair service if a chair is needed. Wheelchair service bypasses security lines and lets you board first.
– Wheelchair attendants will take you to buy water or food and take you to the restroom. You’ll want to tip them for each leg of the way so have your tips ready and in your pocket.
– Don’t lift anything. Really. Not anything. If you are traveling alone ask for help.
– Bring food. Bring an empty water bottle and fill it after security and put electrolyte powder in it. Use a lot of electrolytes.
– If you are on a longish flight, pay for premium economy so that you can stretch your legs out and support them.
The very thought of taking such a journey, and all the preparation needed beforehand can be daunting. You may be exhausted before you start out. But taking that time to plan every conceivable detail can pay off.
Keep your eye on the prize which in this case is having a shot at getting some expert advice and treatment that may help to turn your health around.
Have you ever had to make a trip across the country to see a medical professional?
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– Image by StockSnap from Pixabay