38 Tips To Make Traveling With Fibromyalgia Easier

38 Tips To Make Traveling With Fibromyalgia Easier

Fibro Travel, A Reality Check.

I just went on a three-day two-night trip from Utah to Laramie Wyoming, located on the far eastern side of Wyoming. It’s a six to seven hour trip and about 580 miles one way.

My wife is a professional photographer. She had a friend that paid our way to drive out to Laramie and she paid our gas and food. All we had to do was drive out there. I will tell about things learned from the road trip and things we did right by comparing our experiences to the lists in the previous two articles on traveling.

Let’s see how I did on this short little trip. I am analyzing this trip against the 31 Tips For Traveling With Fibromyalgia . We left Sunday morning and arrived home Tuesday about 12:30 a.m. What did I learn from what I have written and from past experiences? How did I do in reality?

1. Don’t be negative but know your limitations.

Not only did this limitation issue go well, but when my wife and I were planning it, my wife was thoughtful of my limitations.

2. List of medications and Medical history.

Numbers two, three and four are on the same piece of paper in my wallet with a small overview of my health history.

3. List of allergies and a list of illnesses and which meds are used for which symptoms.

4. Take three extra days of medicine.

Did this one as and usual I didn’t need it, but it is smart to do because you never know.

5. Manage your own expectations.

Knowing your limitations and managing them are two different things. Did a good job with managing our expectations.

6. Manage others expectations.

My wife does well with this by now and our friend we went to see was very understanding. We did have to explain some issues but she was accepting of them all.

7. Plan ahead for things you may need like an electric scooter or wheel chair.

Didn’t apply to this road trip.

8. Plan for the flight, the check in time, and security lines. Give yourself more time than you normally would.

Didn’t apply to this road trip

9. Consider what is realistic when planning your vacation.

Knowing I would not enjoy being a part of Monday, the photo shoot day, I looked up tourist things to do in Laramie and Cheyenne and the Nebraska boarder. I did some research but my wife reminded me of my limitations so I kept my notes but didn’t plan on using them. I didn’t. I used Monday as a rest day. I worked on my Fibro Novel and read one of my books.

10. Always consider hot tubs.

Hot tubs would have been nice but we didn’t stay at a hotel and our friend didn’t have one. Thankfully I didn’t need one. I felt pretty good most of this short trip.

11. Always plan for rest time.

We were told it was a six-hour drive but it took us seven and a half hours. Probably do to the rest time we took. We didn’t rush while gassing up. We would use the restroom facilities and walk around the store. One rest stop managed by the State of Wyoming I actually did some walking.

12. Heating Pad.

I can cover items 12, 13 and 14 in one paragraph. Have not replaced my convertor so it’s not strong enough for my heating pad. I did use my converter for my I-phone to charge the phone and listen to music. My wires on my tens machines are broke so I didn’t bother bringing my tens machine. It always comes in handy and I missed it.

13. A convertor.

14.Tens Unit.

15. Make sure to get up and move around every couple of hours or as needed for your situation.

38 travel tips for fibroWe did this well. Could have done a little better but we did it pretty well. A shout out to the great state of Wyoming. The rest stops they have, are outrageously awesome. Clean indoor facilities, not “outhouse style” but really nice. They even hand out State maps for free and the have placards that tell of interesting things about Wyoming. It’s a great place to move around and let your dog out if your traveling with a dog.

16. Pace your self.

The only time things were out of control and I couldn’t pace myself was driving to Laramie. My wife drove about one and a half hours then got extremely sleepy tired, the tired that drives you to sleep. So I drove the rest of the way to Laramie which was about five hours. It wasn’t smart, but It didn’t hurt. I was blessed.

17. Know your limits.

My limits were well figured in but there was a new limit I learned about. Driving fast. Last week I read a study that said for women with fibro, their reaction time while driving is slower than someone without fibro. Fibro men didn’t show any issues. Turns out this guy with fibro when traveling at speeds of 80 to 90 mph has a slightly reduced reaction times. After a couple of scares I slowed down and felt much safer and better. I know another limit now.

18. Don’t be afraid to stop and rest as needed.

We ended up stopping every two hours and that worked for us.

19. Generous use of pillows if needed.

I have a special hypo allergenic pillow made from micro beads that is perfect for my neck problems and the mask I wear with my CPAP machine. I took it for sleeping but I didn’t need anything for driving. The mini van we have as extremely comfortable chairs for both my neck and head as well as my legs and back side.

20. Dramamine

Didn’t apply. No motion sickness for us.

21. Preparation. But remember that with all the preparation you make you can’t plan for rough days or flare ups. But you can plan to be prepared for them just in case they happen.

For me with flare ups I use a heating pad, a tens machine when it isn’t broken and my medicine as appropriate. I read, write or watch TV depending on the situation. So with my laptop and plenty of reading material and the heating pad I took care of this item very well.

22. Extra money.

We had very little. Couldn’t have made the trip if my wife’s friend hadn’t paid for it in exchange for the photo shoots.

23. Small squishy pillows.

My application of this item is the same as #21

24. Pics of pill bottles.

This is a different approach as item number

25. Plan on rest days.

We spent Sunday driving to Laramie and Tuesday driving home. The photo shoots were on Monday. I want to learn about some Wyoming history since I am a history buff and a fan of Western cowboys circa 1800’s. But I wisely took it as my rest day and it really helped.

26. Good reading material.

I had some excellent reading material in the way of novels and my scriptures are on my smart phone. I did a lot of reading and didn’t touch the TV at all.

27. A handicap parking placard.

Never go anywhere without it, in case I need it. I don’t always need it but it’s there for the days when I really need it.

28. Anticipate med. refills before you travel. I use Wallgreens which gives me access to my pharmacy records and refills if I mess up with my medications.

While I didn’t pack very well, I did go over my meds and made sure all was in order.

29. Prayer.

Prayer is a personal choice. My wife and I always start any road trip with prayer as well as starting our day with it, wrapping up our day with it and whenever needed during the day.

30. Bible study

Oops. I didn’t read my scriptures on this trip. Shame on me.

31. DVD’s – Videos

Due to the knowledge of the shortness of the trip I did not bring any DVD’s.

32. Extension cord.

This one is important if you bring a laptop, CPAP machine or any other electronic device, even to charge your phone battery. The room I stayed in had a very ackward layout for the outlets. My friend found an extension cord which helped a great deal. I recommend at least a six-foot modern extension cord that has three pronged out lets on it. This is probably even more important in a hotel room.

33. Pack ahead of time, proper luggage

Since we were leaving for three days it didn’t seem like a big deal to pack the morning before we left. It worked out ok, but it was unpacking when we got to our destination that was problematic. It was hard to find the toothbrush, and it was hard to find my packed medicine. Taking a little more time and organization for packing, I believe is wise.

34. Medical equipment.

Make sure to pack your durable medical equipment wisely and carefully. For me, my only equipment is a CPAP machine which comes with a case designed for the unique shape, the cord, hose and mask. My tens unit has a case as well but since it was broke I didn’t take it. My heating pad was difficult since it is so big and can’t be packed tightly. I just placed it loose in our van.

35. Don’t experiment with new drugs.

I didn’t experiment with new drugs but came up with the idea because earlier last week I tried Exedrine for my increased number or tension and stress headaches. I was comfortable with it enough to take with me for day time headaches. I don’t use it at night because of the caffeine.

36. Prepare for a travel crash after you get home.

From my small history of traveling with fibromyalgia, so far my crashes have occurred the day after I got home but this time my crash was two days after getting home. We need to be prepared for it. It can and almost always will happen within one to three days, from what I gather by feedback from other fibromites.

37. Clearly understand what going off plan will mean, consequences.

This idea came about because as we were passing Rock Springs, Wyoming and I thought of Carla and Russ, some old friends of ours we hadn’t seen in 25 to 27 years. We talked about seeing them on our way back to Utah. My wife talked to Carla and got it all set up. We knew that if we said we’ll only stay for a half our it would be an hour and we knew it would make us late in getting home. No big deal but my wife needed to get to work early the next morning. Long story short we were there for three and half hours. We got very late. It was worth it and we knew we would be behind schedule. You can’t plan everything perfectly but it’s nice to be as well planned as you can be. As long as you are aware of the consequences to a deviation in the plan then you should be all right.

It’s nice to be well organized when you plan. Chronic pain patients and other with chronic illnesses loose a degree of control being sick and being well planned gives you some control back so plan well and is there anything on the list I missed?

38. Message Seat Cover

This message seat cover isn’t very power full but it does the job. I took it as an experiment. The experiment was successful. I sat on it the whole time I was driving and it seem to make a noticeable difference. The big question is why didn’t I sit on it on the way home in the passenger set? I recommend it.

Here is an updated vacation prep list:

1. Don’t be negative but know your limitations.

2. List of medications and Medical history.

3. List of allergies and a list of illnesses and which meds are used for which symptoms.

4. Take three extra days of medicine.

5. Manage your own expectations

6. Manage others expectations.

7. Plan ahead for things you may need like an electric scooter or wheel chair.

8. Plan for the flight, the check in time, and security lines. Give yourself more time than you normally would.

9. Consider what is realistic when planning your vacation.

10. Always consider hot tubs.

11. Always plan for rest time.

12. Heating pad.

13. A convertor.

14.Tens unit.

15. Make sure to get up and move around every couple of hours or as needed for your situation.

16. Pace your self.

17. Know your limits.

18. Don’t be afraid to stop and rest as needed.

19. Generous use of pillows if needed.

20. Dramamine

21. Preparation. But remember that with all the preparation you make you can’t plan for rough days or flare ups. But you can plan to be prepared for them just in case they happen.

22. Extra money.

23. Small squishy pillows.

24. Pics of pill bottles.

25. Plan on rest days.

26. Good reading material.

27. A handicap parking placard.

28. Anticipate med. refills before you travel. I use Wallgreens which gives me access to my pharmacy records and refills if I mess up with my medications.

29. Prayer.

30. Bible study

31. DVD’s – Videos

32. Extension cord.

33. Pack ahead of time, proper luggage

34. Medical equipment.

35. Don’t experiment with new drugs.

36. Prepare for a travel crash after you get home.

37. Clearly understand what going off plan will mean, consequences.

38. Message Seat Cover

Ten Tips For Dealing with Fibro

Ten Tips For Dealing with Fibro

ten_tips_dealing_with_fibro1

1. Let go of any guilt

2. Recognize the contradictions of fibromyalgia

3. Manage your expectations of yourself

4. Manage the expectations of others

5. Allow for rest

6. Pace yourself

7. Understand the illness

8. Forgive

9. Exercise and move around

10. Don’t give up

IS FIBROMYALGIA END THE OF LIFE AS WE KNOW IT? PART 2

IS FIBROMYALGIA END THE OF LIFE AS WE KNOW IT? PART 2

Is fibromyalgia the end of life as we know it? Yes, it is. It is common sense to try and be as positive as we can be when dealing with a chronic illness such as fibromyalgia. I agree, we should be positive. I have had fibromyalgia for more than thirty-one years. When it comes to fibromyalgia I do not know it all, but I can speak with a degree of experience.

fibro_end_of_lifeBefore we can improve our situation we need to come to terms with the idea that life as we knew it before fibromyalgia, is over. But that doesn’t mean our lives are over, only that our pre-fibro life is over. That’s not a negative thing to say, it’s a reality. If we can accept that reality, then we can move forward in our new life. A life filled with chronic pain, fatigue and fog. We can move forward in spite of the painful flu-like body aches and muscle spasms and bone crushing pain in our joints, lower back and hips.

We can go on to a somewhat fulfilling life in spite of the memory problems and other cognitive issues we call fibro fog. We can get some meaning out of life despite all the other symptoms of this dreaded disease. But first we need to understand the things we once did, will need to be eliminated or greatly modified. The expectations we once had, need to be adjusted to meet our current circumstances. Once we come to this settlement in our minds, we can do great things relative to our new pain filled life.

If you have fibromyalgia, then I know you feel the pain and frustration, but do you feel unfulfilled as well? Do you feel as though life is passing you by? Doesn’t it seem like all we do is try to make it through the next flare up? Are we so consumed with the pain, the fatigue, the fog and the malaise that we cannot seem to focus on anything else?

Here are four steps in moving on to a fulfilling new life in spite of all the symptoms of fibromyalgia.

1. GUILT.

So how do we move beyond the confinement that fibromyalgia imposes upon our life? Most people experience guilt because they are no longer doing what they used to do. The guilt comes from letting people down who continue to expect us to perform at the same level we did prior to fibromyalgia or chronic fatigue. We feel guilty for agreeing to do something for someone and then can’t live up to other peoples expectations of us. Living with fibro you know that symptoms can rise and fall on a daily basis. We have no control what this afternoon will bring or what tomorrow morning will bring.

We can wake up one morning feeling good and by the time we shave, shower and eat breakfast we begin to feel weak from the pain and exhausted for no good reason and can’t remember what you ate for breakfast. All our plans for the day are shot. That makes many people feel guilty and guilt causes stress and stress can easily contribute to feeling worse. Guilt has its place in life, but not for the way we are forced to live as fighters and survivors of fibromyalgia. If we commit a transgression we should feel guilt, but we do not need to feel guilty for letting people down because we are in too much pain to move about or we are too fatigued to get off the couch or out of the bed. For those kinds of things we do not need to feel guilty as it will only compound our pain, fatigue, fog or other symptoms. GET RID OF GUILT!

2. EXPECTATIONS.

We need to manage our own expectations and we need to help others understand our limitations.

We cannot do what we once did. The pain is unrelenting and the fatigue is so overwhelming. There are so many symptoms that constantly get in our way. There is no way we can do what we used to do. We need to be realistic with our expectations. We can plan to do whatever we want, we have that right. But living up to it, that’s a whole different issue. We cannot control how fibromyalgia flares up or when.

A friend calls you up and wants to go see a movie tomorrow night. You say “great.” Tomorrow night comes and we get hit with a flare up. You call your friend and cancel your plans because the pain is unbearable. It feels like you have the flu and can hardly breath thru the pain. You ache all over. Do you feel guilty? You might, but you shouldn’t. Why should you or I feel guilty about the chronic, invisible illness we have? We didn’t ask for it. We didn’t choose it, it chose us.

It’s hard for us to plan in advance any kind of activity so we have to manage our expectations and the expectations of others.

3. LET GO OF THE PAST

When we talk about giving up the past, we’re talking about letting go of the past that motivates our actions today. We’re talking about the past where we worked fifty or sixty hours a week and still had time for activities with family and friends and have a full and fun filled weekend. We can hold ourselves to the old standard. We need to let go of it and accept our new standard and plan accordingly.

Since we can no longer hope to live like that again, why should we obsess over it and make ourselves feel guilty and stressed? We shouldn’t. We need to focus on a stress free life and obsessing over the past will do you no good. We need to let go of that type of our past while holding on tight to the memories of the past.

4. UNDERSTANDING

We need to learn what we are capable of now that fibro afflicts us on a daily basis, on an hourly basis or on a minute by minute basis. We need to understand that while there is still life left in us and we can still live a life worth living, we have limitations. Sure, we can break those limitations, but fibromyalgia shows no mercy, it has no grace, it demands consequences to our actions however unfair that may seem.

We need to understand that there are things we can do if we pace ourselves. What we might have accomplished in a day, back before fibro set in, may take a week to do now.

Maybe you can’t go hunting anymore, maybe you can’t move the refrigerator out to clean behind it anymore, maybe you can’t do all the housework and laundry and spend time with your kids like you used to. We need to understand that we can do some of those things with proper planning and with extra time figured into those activities.

So focus on what you can do. Instead of moving the refrigerator focus on the fact you can still sweep the kitchen floor once every few days. That’s better than nothing. Maybe you can’t go hunting anymore, but you could perhaps enjoy a mild walk on a simple nature trail.

Forget that fridge and prioritize. Perhaps it’s better to forget certain house cleaning chores so you have the energy to spend time with the kids.

I have found these four things, and several more that will be covered in later posts, have been valuable to me in coping with fibromyalgia and helped me achieve a new normal living with fibromyalgia. Life is far from the way it used to be but life is tolerable now.

Share with us what has helped you live a new life with fibromyalgia? Please make sure you have elected to follow this blog so you won’t miss the rest of these posts and other fibro related posts.

Troy Wagstaff ©

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