Turning Straw Into Gold

Life through a Buddhist lens

What It’s Like to Take a Vacation While Chronically Ill

Am I sorry I went? No. I freely agreed to go. I’m writing this piece to share what it can be like for a sick person to travel. Thankfully, it’s not this difficult for everyone who is chronically ill (which includes those who are in chronic pain). Nevertheless, I thought my experience might be helpful to others, both to those who are chronically ill and to their loved ones. Read More

Travel

In 1995 nearly twenty years after the start of my husband illness we went away for our 25th Wedding anniversary. We knew that with his chronic illness and MCS he would struggle, but he bravely faced and achieved the whole three weeks of continuous travel from the UK to Africa and onto Mauritius. He had to coped with his fear of flying that played havoc with his balance problems and seizures, and his continuous pain and tiredness as he completed a packed daily programme and maintained a pace that was was hectic even for a well person. It took him a year to recover from the old symptoms and to come to terms with some new health problems it caused. Did he regret it? NO! Why? For that short time it gave him back his self-esteem and some wonderful moments. In the long term we as a family, use those wonderful and precious visual memories that he has on film to remind him how proud we were then of him then, and how proud we are of him now as he still struggles to cope with the increasing pain and chronic symptoms every day! It requires understanding of his limitations, thoughtful planning, and safe support and supervision,but now we are encouraging to visit the French Battlefields in September, and God willing, he will make it and come back with more memories that will help both of us to make the most of a very long, difficult and damaging illness.

Thanks for sharing your experience, Kate

I'm sure it will help others to decide whether to travel or not.

With gratitude,
Toni

Vacations

Totally understand. I realized a lifelong dream getting a beach house in Mexico, only to have to sell it because preparing and then driving 7 hours to get there was something I could no longer do.

I remember crying my last trip there. I was in too much pain and too exhausted to enjoy it. I never went back.

Thank you for the peace this

Thank you for the peace this piece brought to me. The part about hiding your vacation resonated within me. I have found similar feelings around work issues. I was bed bound for an extended period but have been ambulatory for the last couple of years since. I continue to have all my pain, all my health issues and all my cognitive issues but I am getting up each day. Those close to me and friends around me see my ability to get out of bed as a "completely healed" status. What they don't see is that even if I attend a gathering or am able to work a day that I am still sick. I still have 24/7 pain, I still throb from head to toe, still have gastrointestinal trouble and still have cognition trouble. The balancing act of trying to be involved in life and letting my illness take control if fragile. I push to be part of making memories with family and friends because without that there is just suffering and tears. There are many days where making the effort just isn't possible so if I am able to do even a small thing with my daughter I push. No one sees the dark, lonely middle of the night where I can release the tears of pain and frustration from over doing myself. Learning to mask, cover and hide are symptoms of illness that I have had to adapt to. People don't want to be around someone ill or in pain and rather than being lonely you find a way to push through and endure. Exhausting work to be chronically sick.

Dear Anonymous

Your comment brought me to tears. That balancing act can indeed be exhausting. Your last line —Exhausting work to be chronically sick — sounds one of the themes in the book I'm working on on chronic pain and illness. Everything you said resonated with me. Thank you.

Warmest wishes,
Toni

I so understand...

I rest-before and have planned rest for after just so I can make it to church on Sunday and sing with the worship band. It is a HUGE effort for me and I don't always make it on Sunday, let alone to the weekly practice. But over the last 10 years they are starting to understand that when they see me looking "normal" for that hour on Sunday that there are many hours invested in rest, in managing pain and the other uncomfortable symptoms, along with "not doing other things so I can be there," several days in advance, and many hours of flat out sleeping required for the next two days after, for me just to be there that one hour on Sunday. Yes it is worth it because it is important to me. But it has been hard for me to learn to accept the "trade offs" and to share that with my faith community. Very few see how hard we work to be there - and how even when we are there we are still dealing with and managing our symptoms. It is exhausting to be sick ...

Cognitive issues of chronic pain

I would be interested in hearing more about the cognitive issues that often times accompany chronic pain: the why and how of it and how sufferers deal with it. And while we may be addressing that, how about regular old aging and c.p. I look back on some trips I took 10 years ago in my first year sick and wonder about how, 10 years down the road at at the age of 66 I was able to accomplish it. Pain is not worse now; I guess it's because I'm older and/or more fatigued by it.

Travelling with CFIDS

I have had CFS/ME since 2005 and was forced by it to retire from a job I loved in 2007. Without working I am able to pace my rest and activity and sleep on a schedule similar to what you describe in your article. When we travel to visit family or destinations we take our fully equipped Truck Camper - with a queen size bed, full bath and kitchen. My husband fully accepts my limitations and our family understands when I need to nap at 10:30 a.m. or go to bed for the night at 6 p.m. The "just getting there" part (including packing, driving, arriving) usually requires a "full rest day" within 36 hours. But everyone understands that. I personally have to watch my "duration of activity" - as well as intensity, both physically, mentally and emotionally - and if I can stay within my limits I can be o.k. I have to take more medication at time. I have to skip outings, meals or events I would love to be part of at times. BUT I AM THERE. After a couple of weeks living in the camper I am re-balanced and able to maintain my "usual limited life of short activity and resting/pacing/sleeping." The final day or two to get home usually wipes me out, and I have to crash for a few days to a week or more after. BUT I WAS THERE. AND IT IS ALWAYS WORTH IT.

Thanks Robyn

I appreciate your taking the time to share your strategies. I'm certain it will be helpful to others.

With gratitude,
Toni

"happy-sad"

Thank you for this article! I am mostly home-bound from ME/CFS and it's always a balancing act trying to decide what activities will be worth spending precious energy on, especially since overdoing can cause permanent damage. Vacations are extra tricky that way. I just returned from a family backpacking trip. I'm struggling whether or not to post pictures on facebook, because that activity looks so normal and it's a struggle to get others to understand how seriously my life has been impacted by this illness. The pictures are so fun, but they don't tell the whole story about how hard my family worked to make things comfortable for me and how much extra effort and planning it took, or how heavily we had to modify the activity. They even brought a hammock so they could strap me on a pole and haul me out if it came to that. It was so beautiful on the mountain and it made me feel human again to do something I love, but I had to work very hard at focusing on how thrilled I was to be there at all instead of on how much I wasn't able to do or how sick I felt. I was so very "happy-sad!" Thanks for sharing your experience.

travel

I have multiple sclerosis over 30+ years and I love to travel. Was fortunate to be able to work f/t and be a caregiver for mom who used a wheelchair. Grateful that I earned enough to take really nice vacations often. Just so very glad that I took all those vacation trips and took pictures of us and family that we met along the way. I joined the ranks of "chonic ill" about five years ago and "poordom" which ensued not long after. Now I take local trips to a fishing boat that helps me so I can fish. Or visit a friend's garden on the riverbank nearby. I enjoy these simple pleasures much as I enjoyed all the trips I have taken.
Especially learned quickly how to travel and get help while doing it so I am not wiped out on arrival, still having to get to my final destination.
Yes, it is so worth it to me to be able to do these things and it does wipe me out big time afterwards. Sometimes for a few months, it is okay because I got to get out and go somewhere!

To holiday or not to holiday?

For fifteen years I have not traveled or had any form of holiday, due to ME. This article was very timely, as my two adult children have now insisted that I WILL take a short holiday with them in August, as my birthday gift from them.

After considerable discussion about the ease of a resort style hotel versus a cruise, we are going on a one week cruise. Two days at sea to rest up after the scramble of packing etc, three shore days, and two days at sea to recover from the shore days. I am reassured by the fact that the boat will be sitting in the harbour if I decide a shore day is getting too hard.

I am still fearful. What if the bed is not comfortable enough? What if the noise of the boat drives me crazy due to my noise hypersensitivity? What if the boat is full of chemicals that give me headaches and more?

BUT due to the insistence of my kids we are going ahead. I figure that at worst I can survive a week and at best I will do something exciting that as others have said, falls into the "normal" category.

My expectation is that it will stretch me well beyond my limits. My hope is that it will be more than worth it.

Penelope,, Great that you are

Penelope,,
Great that you are taking that cruise! Go for it!
Cruise ships (even older ones) have special wheelchairs that fit the narrower aisles on ships. Let the cruise ship company know in advance that you may need to use one. Is better to know that will be available for you should you get wiped out on boat or shore.
When I make air reservations, I let them know I will need a w/c at curbside to get to the gate. Makes life easier for me.
The beds are generally comfy, they want people to return and a bed is a small investment on their part. Bring your own pillow though, for some reason, cruise pillows are paper thin.
Unless you are traveling in steerage, most likely not hear the engines at the bottom of the ship. I travel with soft foam ear plugs for the noise issue.
The chemical issue? You are on a boat in the ocean with fresh sea breezes, if you have difficulties, try to stay more on the upper decks. It helps to wash the chemical smell away and relieve your symptoms.
For the 1st time in 15 years, you get to go somewhere fun! Let others worry, I sincerely hope you have a wonderful time! and p.s. even if you can only hang out on the deck or by the pool, it is so very worth it!!!

Living with Lyme

Wow! This was eerie to read as it expresses exactly what is in my head. We are planning our first real vacation in 17 years; I've been ill for the past ten. During the last decade we have traveled by car halfway across the country and back nine times to visit my ailing parents. Each time was an exercise in mental gymnastics and most times I ended up in urgent care or an ER. Once I was in the ER all night in New York on the eve of our trip. I forced myself to get in the car the next day for the sake of my young son. The very day we were traveling to see my dying father I ended up at a doctor's office. The day of his funeral one of my many doctors called to confirm that indeed I did have an infection and one of my pains was not in my imagination. Indeed before we ever get in the car I make sure to know where all the urgent care centers en route are located. I joke that it takes me five minutes to pack my clothes but all day and one huge suitcase to fill with all my pain remedies--holistic and otherwise. I have a young son and so I force myself to get through each day for his sake. Even at home each day is often a struggle but at least in the comfort of home I can cope better.

Even planning a day outing in our own city of New York is always an ordeal. A trip to the ballpark requires endless preparation and trying to anticipate which pains may kick in if they haven't already, what remedy to try, how to cope with pain that may come on suddenly while away from the house. Any day can present with migraines, pelvic burning, muscle pains, tingling sensations, sore throat, dizziness, etc. A good day is when only one of these presents itself. Thank you Lyme and other tick-borne illnesses. And I share this with almost no one because no one wants to hear, and what can anyone do anyway. It becomes tedious to answer the automatic question, "How are you?" "Do you really want to know," I wonder.

It really sucks....

Being chronically ill is bad enough, being housebound is bad, not being able to travel or any outing for that matter is really really bad. What do you do when you are single/widowed and no one understands because you are not looking ill, and you have no ways of getting out...
I have posted the link to this article on my FB page may be, may be my children will read it and understand...

best wishes

Dear Jaqueline,

I fervently hope your children, and hopefully others who are important to you, will indeed get to understand. I am very sorry to read they don't already. Best wishes to you.

Dear Toni, Thank you first of

Dear Toni,

Thank you first of all for your wonderful books and blog here. It has helped me so much.

I suffer from insomnia, it comes and goes, I have good days, then bad. It has changed my life and, like you, has limited it.

I have a question regarding point one, when you mention having to "field well-meant comments". Does that mean that you have to find a suitable answer? I am not familiar with the term 'to field' in this context.

I am asking because I often get to hear this when I have a good run of maximum 4-5 days. In my case it is my mother who literally smothers me in 'I am so happy you are getting better' (now I don't have to worry, is what I hear...) And I know I am not getting better and just having to hear this can cause me to get angry and I feel I am not being understood.

Do you have any ideas on this? Thank you!

On another note, I think it is good that you tried the journey. I know that happy-sad feeling so well.

Hi Joanne

To "field" a comment means to deal with it or to respond to it, so yes, it means finding a suitable answer. It's hard to respond when people don't understand that a few good days do not indicate that you're all better. In my life, I don't have one answer. It depends on my relationship to the person. Since it's your mother, I'd try to have a conversation with her about what it means when you have a few good days -- how you're thankful for them and you're glad they make your mother feel good, but that it doesn't mean that the insomnia won't return. Of course, you hope that one day it won't return, but when she jumps to the conclusion that it's happened already, then you feel as if you're letting her down when the next episode comes on.

I don't mean to be putting words in your mouth. The words I used may not fit your situation with your mother. It was just one example of what might work for you. I'm mainly trying to say that I think, given that you're such close relatives, you should try to have an extended conversation with her about the true meaning and implications of having a few good days.

I hope that was helpful. All my best.
Toni

vacations

Toni, I'm glad you went on your vacation- stressful and difficult as it was. Memories (of the ocean, your family)are so important, even if the time was hard. I can relate to how you felt. We go to Maine every year for 9 days. It's an 8 hour drive. Last year it took me 2-3 days to recover from the trip. The first day I could barely get to the bathroom which was 2 steps from the bed. Fortunantely I knew we had enough time there that I could take a few days to recover. My memories of the Maine trips get me thru the bleak winter days.

Susan

Summer Vacation is no vacation at all...

I know the feeling all to well. I've been going through a degenerative process (I still don't have a Dx). Most people just don't get it. During the xmas holidays I was housebound and unable to attend the normal family functions (winter and bad weather seems to be the worst for me), this summer with the kids being let out of school I can't just make them sit around the house all summer so we go camping. Packing up and the first day of camping are so exhausting I'll spend 14hrs of the next day sleeping and then the first 3 days back home doing next to nothing. But that's the price you pay to keep the family happy and not victims of your illness. Our extended family is mad at me though because they can't understand why I apparently avoided all the winter holidays but can manage to "have fun" all summer. Without an actual Dx it just makes it worse.

Thank you for such an insightful article.

The thing that bugs me about traveling is what I call "Trooperism." I am mildly chronically ill (is that a thing? I'm making it a thing) so I can only imagine the experience of those on the extreme end of the scale, but I cringe every time I hear someone say, "You (or she) are (is) such a trooper," when I'm pushing through a flare up because I want to BE at my child's concert/ award ceremony/what-have-you. I know the speaker means this kindly, but what it suggests to me is that when I've reached my absolute physical breaking point and miss events, I am no longer a "Trooper." Actually, those are the very moments that *I think are the most "Trooperish," to know when it's time to take care of myself, physically, even when it means I will hurt, emotionally, to not do the thing I want to do.

wise (non)action

I couldn't agree more. Taking care of yourself, saying 'no' to people or events is much more difficult than pushing yourself. (Even though you do need to do that once in a while to have a life.) But it is difficult for healthy people to understand this.
I think you are a Troo..., no I can't say this, I don't like this word either. :-) Alicia, I think it's great that you also choose not to do things. It's really hard. Good on you. Good on all of us.

vacation

Thank you for yet again another beautiful inspiring peace. I especially love the "not telling anyone". This past spring I have undergone 2 weekend getaways and have been shy about telling anyone so that I wouldn't get the "well if you are good enough to travel surely you can work". But I actually braved the criticism and told people. Tired of being in the "chronically ill closet", so out I came. :)

For both outings I found a 1 bedroom apartment to rent so that we had bedroom/living room and a kitchen to prepare our meals. Also I could be in bed and my partner could have the living room to watch tv or read. Gave us more comfort and flexibility.

My experience.....I had to double up on all my rest periods for 2 weeks before the trip and for 2 weeks post. My trips consisted of....driving 1.5 hours Friday evening. Staying in bed til 10:00 Saturday...going out for 1.5 hours, and being in bed until the next day at 10:00....out for 1 hour....back to bed for 3 hours and then a 1.5 hour drive home followed by 3 full days in bed.

Do I regret it, no. Did it take a lot out of me yes and in that moment I seriously questioned why I went. But it gave my partner and I a little experience of pre-illness life and we enjoyed visiting a new place and spending some time away from home and it was nice to see something besides my bedroom.

I'm also very fortunate that my partner and family are 100% understanding and when I take to bed, they go off and explore on their own. They can also tell when I'm collapsing and will bundle me off to bed if I'm not already making the move to do so.

Will I be brave enough to try it again. Probably in 3-4 months. Luckily there are lots of nice places to visit about 1 - 1.5 hour from home as there is no way I could go farther than that.

Thanks again Toni for tackling this tough topic.
warm regards
Kate

Another Timely & Comforting Article!

Toni, you have once again managed to write an article that timely fits my exact situation. I've been in chronic pain for 8 years due to a failed cervical fusion. I also have auto-immune issues, hypo-thyroid, CFS and idiopathic neuropathy (you probably know who I am). I have just had to reschedule my flight up to my 2nd home near Seattle for the 3rd day today because I am simply not well enough to get on the plane. I'm mostly packed, but that just exacerbated all my symptoms, even though I have 2 of most things up there. Of course I know how lucky I am to have a 2nd home, but I can rarely get there! And my SO lives up there when he is not traveling for business or w/ me in So. Cal. I had a decent stretch for about 3 weeks in June (the best I've felt in 8 years), but have been in a pain phase and fatigue stage again for 7 days running now. Of course I keep thinking, "WHY NOW?? When I'm supposed to go away?" And the constant stress of "should I go or not go" keeps haunting me. I haven't been since Christmas, which is ridiculous since it's only a 2.5 hr flight, but as you well know it's all the other stuff that goes with traveling that makes it so difficult. If a private jet was parked in my drive way and I only had to hop onto it and lay on a flat bed seat, and then be ushered into my lovely bed up there, THAT would be IDEAL. But THAT isn't going to happen. My SO is understanding but I feel very guilty and sad. He's taken 2 weeks off work to be there with me and I don't even know if I can make it tomorrow. The upside is that I can change my tickets just for the difference in fare, if any. And unlike you, I told people & neighbors I was going so now they keep wondering why I'm still home. I read all the above comments and can relate to them all. I particularly relate to the persons who talk about not wanting to share our activities (at home or on trips) because people then view us as "well" or "cured" and we are far from it. I also related to the comment about being a "trooper," as if we have a CHOICE how we feel or what we do. We don't, we just choose whether to try or not. We all have the same difficulties, issues, concerns, stresses resulting from our illness IN ADDITION TO OUR ILLNESS. I know I'm not alone, and your article reinforced that today of all days. So, I will try to learn from it and just "chill" while my body lets me know if I can make it to Seattle or not. I SO want to go even though I know I'll pay the price for a few days on each end, at minimum. I will do some meditation and try to be kinder to myself. Those are things over which I do have control. Thank you a million times over for writing this piece. Once again, you have bared your soul and honest feelings to us -- a gift we can never properly repay. You are a special, special woman. You deserve the best life can offer you. xo

Thank you everyone for your comments

Hello everyone,

I wish I could respond to each of you individually, but there are just too many comments for me to do so. I have carefully read what everyone's written though and am so thankful to all of you for sharing your experiences and thoughts with all of us. All of the comments are so honest -- it's been incredibly moving to me to read them -- and I know they're being helpful to others. You've all made me feel less alone.

Thanks to all of you from the bottom of my heart.
Toni

A Brave Post as are Most of Yours

I first began reading your posts in 2010, I believe; that was the year I began to turn my own life around, which remains a work in progress. Have had autoimmune issues for almost four decades with long remissions between relapses but the last six years have been the most physically difficult and most rewarding, spiritually. Your book, "How to Be Sick," is spot-on and along with your posts has helped me in numerous ways innumerable times. Your other book on Buddhism is also on my reading list as I am "mostly Buddhist."

Thanks are long overdue but just know that there many of us who may read you in silence but "live out loud" many of your suggestions. Perhaps chronic illness helps us be more thoughtful in what we share with the world--re: your vacation--for we have learned (mostly by trial and error) that false hope is quite easy to give but most difficult to receive.

Again, thank you for your words, your openness; they have helped me see my life as it is. That has made all the difference.
Karen

Thank you KM

I'm so glad to hear that my posts and that "How to Be Sick" have been so helpful. It warms my heart to read your comment. Thank you.

Warmest wishes,
Toni

great timing

Thanks again for a good piece, Toni. I have choosen not to go on holiday for a while now, because it is so tiring. Even though I really miss some things about it.
Now a friend made me an offer to accompany them on a vacation that sounds great. I am tempted, but I'm not sure if I will. This friend has a very limited understanding of my limitations. To show them what I will need and what they will be getting themselves into, I think I will let them read this article. That will be a good starting point to inform them. It will make it a lot easier for me. Thanks!

Judith

I hope that reading this article will help to educate them about your limitations. It's definitely worth a try. Your friend's response to the article may help you make up your mind about whether it would be wise to go.

Warmly,
Toni

Depression Barrier

I have a different barrier than most in that there is nothing wrong with me except that I suffer from severe depression. I have no one to travel with, and I fear that if I travel alone, the stress could trigger a major episode. This barrier then creates more depression. A vicious cycle of endless pain. It doesn't help that disorders of the brain are often viewed being "not real." This article tells me to go for it, but still the fear lingers. What to do?

Thank you for providing a forum for those of us who silently suffer and words of hope in your writings.

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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