Marz
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Member # 3446
posted
I resisted signing up for a Mediterranean cruise because of the uncertainty of when I feel crummy. I let my sister talk me into it.
I have cancellation insurance but was optimistic that I could do it. Lately though, I've been so tired and I can't imagine doing it.
My body wants to be in a horizontal posiiton, the pressure at base of my skull has returned and I can't nap because of feeling agitated and headachy.
I'm kind of upset with my LLMD because I told her of my misgivings when I saw her a month ago and she encouraged me to go.
It was kind of like the feeling when you were a kid when you wanted your mom to excuse you from something but she says do it. Only in this case I want so much to do it.
I know these symptoms will pass and since I don't leave until Sept 15 I could be ok by then.
Has anyone done something like this feeling like this and it turned out ok? Or, if you cancelled how did you live with the huge disappointment?
I will be so depressed if I'm sitting home knowing they're over there enjoying themselves.
When I was healthy I took a 4 night cruise and so I know they are not actually relaxing. This one is 15 nights and we have action packed days meeting friends and relatives in some ports which will be exhausting for me even on a good day.
Posts: 1302 | From USA | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Editing to add this part after writing all below. Now, if after checking in with your body and your spirit for a true sense of what might work, well, if your body just can't, then don't. Listen to your body but don't let it fool you. At the risk of sounding like personality fracture, might you body actually WANT to really be in a different environment?
Get still, meditate about this, check in, deep within yourself. I wrote all this, as I would love to be able to do such a thing.
I'm hoping you will be able to take in some joy and beauty and meet some wonderful people of a warm and lively culture.
==========================
If you don't want to go, I'll take that ticket. Two weeks in the Mediterranean? That's the ultimate chance of a lifetime.
It CAN be relaxing IF you organize your time to make it so. Parry it down to the most simple things and get help packing, organizing. Contact the health officer of the ship BEFORE you go. They can help you and be there to shepherd you out of a noisy situation if you get caught up in the wrong venue on the ship. Ask other ways they can help.
Well, the GOOD news is that a Mediterranean diet is excellent (minus the wine and the wheat). You can probably even get gluten-free meals, etc. if arranged in advance. You'll still have gourmet food choices but it's important to stick to excellent self-care regarding nutrition. Then, you'll have a little leeway to sample some of the local specialties when you are off the ship.
You will need to be very strict with yourself regarding rest and bedtime, though. To adhere to a schedule (and avoid the party-hardy atmosphere - or observe from a lounge chair) will ensure your ability to endure and enjoy.
First question and I suppose it would be "no" or you'd not have signed up for a cruise but lyme can change things. How is your inner ear? Do you manage movement and motion well?
If you need to be horizontal, then be horizontal most of the time. It can work. When I could still go out, even to song circles at peoples' houses, I was ALWAYS horizontal, calling ahead to be sure that would be okay, off to the side, in a separate room, etc.
Whatever you need to make this work, go for it.
Order wheelchair service at all airports and cruise offices, and onto and off of the ship. That will save you a lot of energy and get you some degree special care, moving you out of long lines which can be a problem.
For shore leave (or whatever it's called) can you borrow or rent a wheelchair if you need to do so? Can they suggest out of the way places? Check the web and contact the visitors' bureaus for all the stop and find out what will and what won't work in advance.
You can plan this to work and have a splendid experience. But also be realistic. You may feel better some days - or not.
Don't expect your body to suddenly provide you with a miracle but please don't miss this chance to see this part of the world. You can still enjoy the beauty around you even if you are a bit less than tip-top. It's about beauty and taking that all in.
Tell the ship's crew in advance that you have a neuro-muscular condition, just be matter of fact about it. Get your LLMD or GP to write a travel letter requesting accommodations along the way as you need. You may need that verification.
Get your airline ticket to flag wheelchair service - also in advance. You need to have this reserved but also remind them at every leg of the trip to have a wheelchair at the next stop.
If you are sound sensitive, you need to have a discussion with the ship's crew to know what to expect at every step. And that can help but be prepared for some surprises. Take various kinds of hearing protection and keep some kind in every bag in case of lost luggage.
It may not be the picture of the cruise you would prefer but it can still be a wonderful experience. You can lie down all day at home - or on a chaise lounge while cruising the Mediterranean.
If you need some help to steady your balance: GINGER Capsules are far superior to any Rx for motion stabilization and won't make you hung-over or hurt your liver. Get several bottles, one for each bag.
Some homeopathic remedies are also excellent in addition to Ginger.
You have three weeks. Things I would do to better ensure my endurance:
I'd unplug my TV and my computer. I'd go to bed (or at least turn off the lights) at dusk and rest when I needed.
Qi Gong or whatever your gentle exercise is
Nutrition is key. Tell your body you are in training for a life-changing experience. Enjoy the possibility and anticipation. Put photos of the Mediterranean all around to remind your body why you are already making some changes. Get some Greek music, etc. Watch all the travel videos -
- check out Rick Steves' site for travel tips, too. You can CALL them (in Seattle) and ask their advice. They KNOW people all over the world. Perhaps you can arrange private tours and get way from the crowds. It's all possible. Really.
[ 08-22-2010, 06:37 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Hey Keebler, I was actually wondering at one point who I could give my ticket to if I didn't make it. I was trying to think of someone who really deserved it and you would certainly fit that category.
Thanks for all the useful tips. I'm going to order the gluten-free diet. I was thinking of finding out about that and so will do it soon.
It's been bothering me that i won't be able to eat the wonderful crusty breads and pastas. I've been gluten-free for 6 months and amd just now wanting to rip all the forbidden foods off the grocery shelves. I now know what it must be like to be an alcoholic or drug addict.
Noise is a problem for me and my LLMD suggested using MP3 player when I walk around. I might give that a try, so better get some things downloaded.
I loved the motion of the ship on my cruise years ago so hope it won't be a problem, but bringing ginger along with all the other pills is a good idea.
My sister has promised they will "take care of me" but I just don't want to be a wet blanket on the trip. I don't want the memory of ruining the trip for them.
Posts: 1302 | From USA | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
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posted
- If you do slip and eat wheat - don't do it on the ship but in port where their wheat does not come from the U.S. But, still, is any bread product worth trading your ability to walk? That's what it comes down to for me. I never say I "can't" eat anything but just that I "don't" - I don't eat hubcaps. I don't eat wheat. Just takes the emotion out of it for me when I put it that way to myself.
Thanks for the thought. I'm still in my PJ's dreaming of such an adventure. I'd need a full team of helpers to pull this off.
An mp3 player with in-the-ear pods can cause hearing damage. Be sure to get some headphones that surround your ears and so the impulse is not as close to your ear nerves.
A noise cancellation headset would be best. It's an expense, but for $25 a month, you can have a BOSE QC 15 delivered within days. The QC 15 is the best model they've made and I've had every version.
Just an mp3 player will not be enough to cancel out travel noises. Also remember to keep volume LOW. And, be aware that it's harder to maintain balance when ear plugs are blocking the canal. The noise cancellation sets let your ears breathe and help with balance.
When on antibiotics, our ears can be damaged at much lower decibel sound levels than usual.
Ear PLUGS are better than an mp3 to protect ears. You can put on-the ear headphones over ear plugs and still hear. Just still not too loud.
Sennheiser makes some nice smaller headphones you can use with ear plugs - see Amazon for choices. But there is no noise cancellation unit that even comes close to the Bose QC 15).
==================
Regardless of choices above, you will also need a bunch of these ear plugs. Forget all those others that say they are so soft, they are not as good as these:
Flents Quiet! Please (by apothecaryproducts)
==================
Ear plugs & even the Bose set can do only so much. I also suggest taking something like this:
These have no metal in them so you could go through security wearing them. Okay, these don't block out as much noise as the Peltor's but they may work well for travel anyway and they appear to be less bulky:
Protects Patient Hearing and Reduces MRI Scanning Noise Noise Reduction Rating of -20 dB -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Could you possibly be having your 3-5 wk herx right now?? So maybe you will feel much better in a few days??
Personally, I would go easy on the meds right before the trip. I wouldn't want to be herxing my head off while on a trip.
I hear you on being afraid to go. I would have been afraid while going through treatment too. I still don't like to travel with anyone other than my husband. I have dietary concerns such as gluten also and sometimes I feel like a wet blanket just because of that!!
Maybe it's actually easier on a cruise, but when traveling with others, you end up eliminating certain restaurants because you can't eat there. Period.
Sorry, now I'm rambling!!
Give it awhile on making a decision. I've heard of others here who took a trip they were worried about and they came back so pleased that everything had worked out so well!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
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posted
I actually always felt better when I was away from home (mold at home that I didn't know about). You can always go to the cabin and rest and not worry about being a burden to the others there. You will always be able to find them.
I would go.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sutherngrl
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posted
My first instinct was to say defintely go; that was until I saw that it was 15 days. Thats kind of a long trip for a sick person.
I went on a 4 day trip that I dreaded at first, but it ended up going pretty good. I ended up having some good memories from it; but was exhausted when I got home. I'm not sure that I could have handled 15 days.
However, if you were able to rest say every other day in your cabin, then maybe the trip could be good for the mind and the body. In that case I would say go.
If you would have said a 4 day cruise it would have made my opinion a lot easier. This is a hard one!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lots of ways to look at this...
If staying home will make you NOT sick, stay home.
Chances are you could be sick on the boat or at home, so where would you rather be?
With my luck I'd not go and one day later after the trip started I'd feel better and have to kick myself for not going.
Or look at it like this...
You may be sick in either place. Staying home you'd add guilt and depression to the mix.
Your choice. Either way, hope you feel better soon!
posted
I went on a 2-week vacation overseas before I knew I had Lyme.
I was in tremendous pain by the end of each day, and having a terrible time with the extensive walking and up and down stairs and several hours per day in the car. I just thought I was REALLY out of shape and my arthritis was suddenly REALLY bad. My friends took me everywhere and fed me nothing but carbs (yum, but I'm sure it made me worse). I stayed in bed for 2 days after I got home, and thought I had really terrible jet lag.
Now that I know it was because of Lyme, I would not plan a trip again that involved that degree of physical activity or so little control over my food.
I did take a cruise once, before Lyme, and it could potentially be relaxing. You could spend the whole time lying around in a deck chair, or inside an air-conditioned lounge with a nice view, or in your room sleeping. (Don't go with a companion who snores, or take earplugs.) The food on my cruise was mostly buffets, and you could get some other food when it wasn't a major mealtime. So you had quite a bit of choice on what and when to eat.
As trips go, it was great not to have to pack and repack suitcases and load and unload the car and drive all around in a foreign country. Being on a ship takes away any stress from deciding on destinations, finding directions, coping with the local language, etc.
The part that would worry me is that you're stuck on the ship for a week, so if you needed the ER or felt extremely horrible, or if you had some kind of extra sensitivity that made you more prone to motion sickness, you couldn't get off so easily. They do have medical help available on large cruises, but of course there will not be an LLMD. If your trip insurance allows you to get off at the next port and fly home in case you get really sick, that might help this worry.
My attitude is, I can stay home and be miserable, or I can be miserable while watching a beautiful sunset or spending time with someone who cares about me. If you can't stop being sick, then at least do something that makes you happy.
But don't push yourself so much that you get worse, or spend all your med money on a vacation or something.
If you can manage it, I say go on the cruise, take it easy and enjoy it.
Besides, if you go and feel awful, you can say, "That was awful--I never want to go on a cruise again." Then you'll be happy about all the future ones you don't go on. If you feel great, you will say, "I sure am glad I went on that cruise while I had the chance."
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Hoping you are able to go and you have enough good health days to enjoy it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I've made up my mind I'm going no matter what. Like you said Tincup, if I start feeling better after everyone leaves, I'll really be regretting it.
I finally looked at the itinerary's timetable. I was afraid to because thought I might get scared about the details.
I was glad to see we're always back on board at 4,5 or 6 pm, so can go right to my cabin and wind down. And there are 3 full days at sea, so hope I won't be tempted to overdo with onboard activities.
The cruise itself is 12 nights. We're in Barcelona 3 nights on our own to rest up from trip over and sightsee.
I'm very down about feeling so bad now. I had started Buhner and was doing so well on it. I'm thinking this is bart although we're not sure I have it.
This too shall pass...
I'm going to start practicing going to bed earlier since we're going to have to be up and out at 7 am.
Wish I could take all of you with me. It would be nice to have someone with who understands and we could commisserate with each other and support each other.
Hey, what a great idea! Let's start a Lyme cruise exclusively for lyme people. Think we could agree on where to go?
Posts: 1302 | From USA | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
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posted
- Who says you have to "be up and out at 7 am." ? Is that to be off the ship? Or just to get breakfast (and then be able to go back to your cabin - or lounge about on ship) ?
Can't you have your sister bring breakfast to you in the cabin ?
Won't you be able to come and go as you like - and stay in your cabin if you need to, whether for an hour, or the whole day.
As much as I encourage you to go, if you really have to be out the door at 7 am everyday, that will not meet your needs. You need to be able to manage your schedule on your own.
And, if you are out by 7 am, you might need to be back by 10 am and call it a day. I'd last one hour out every 2 or 3 days. You may be far better than that but I sure hope this provides you much more flexibility than it sounds like.
I encourage you to embrace as much as you can but please be safe in your expectations and the demands placed on your body.
Remember, you can arrange your own private excursions rather than follow the herd. How is this going to work for you if you have to be out the door every day at the crack of dawn - and stay out all day? Once out, will you be able to return to the ship at any time?
Hmmm. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Getting away from here allways makes me feel much better.So I go and hope it continues.
It did this year despite my dodge trying to ruin my trip I felt much better in Wyoming at 11500 feet.
There is 0 polution there !!!!My body is made for high altitude!!!
I would go!!!
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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posted
When I went on a cruise, most people got off in ports but we were welcome to stay on the ship if we preferred. That was when the ship got quietest, so it could be pleasant.
Also, if the ship was in port from 7am to 4pm, we didn't have to get off right at 7am--we could wait until noon or whenever. Or we could get off and then come back early.
The thing to be aware of is if you are anchored and you have to go back and forth on tender boats. If you are at a pier, you can walk on and off so it's no problem.
The only time you have to stick to a strict schedule is if you sign up and pay extra for a tour that takes place while the ship is in port.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
I haven't read everyone elses responses yet...but I'm going to encourage you to go. I've traveled a lot while being really sick (just went to Germany this summer for my brother's wedding). I think it's good to not let fear control you. And trust me...sometimes it controls all of us.
Overall even if you feel bad while you are on the cruise I think it could be good. Maybe you can relax on a deck chair somewhere in the sunshine? Take things at your own pace?
If you travel with someone who is understanding that you might not be the life of the party I think it could be a good time. Let's face it...we feel sick a lot. And because of it we miss out on a lot. You might as well go and try to make it a relaxing and refreshing time
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I called the cruise line today and ordered my gluten free meals. She seemed to know a little about gluten sensitivity and mentioned that European wheat might be ok, but on the ship the food comes from the US.
The idea of pasta and crusty Italian bread has me salivating. I'm going to do a little research to be sure it's really ok.
If it's true that alone is enticing me to go!
And she said we can be leisurely on leaving in the morning.
The only problem is my sister has planned all the on-shore activities. Friends will be meeting us at 4 of the ports and I'm afraid they will pack too much into a day. I hate to slow them down and will be depressed if I can't go with them.
I've been to all the ports but one by land years ago and know I won't be able to say no to any of the plans as long as I'm standing on my feet.
I'm feeling a little better today and hoping the trend continues.
I know my sister thinks she understands. I hope she won't have to see me at my worst.
Thanks for all the encouragement. I think a change of scene will do me good. This is a once in a lifetime opportunity and I think I should take it!
Posts: 1302 | From USA | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
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posted
- Are you celiac? If so, NO wheat is safe.
The only reason that some can "do" wheat outside of the U.S. is that it would (hopefully) not be genetically modified or laden with all sorts of farm chemicals.
But, gluten is still gluten regardless of the continent. If you are celiac, it would still be out of the question.
Remember, it's not the wheat that supplies the flavor. Get the flavor and the food without the wheat and you still have good food and good flavor.
You can also contact the celiac groups here for names of place on your trip that provide gluten-free foods. It's very doable. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Regarding the plans. You can always take a taxi from the ship and meet up with your sister and friends - or leave early and take a taxi back.
It is important that you can operate totally independently at all times. When you can be with your sister/friends, that will be great. But if this is going to work to your benefit, remember that you can get anywhere you need to go according to what your body needs.
Some taxis also will have wheelchairs to loan out. Whatever tools that you can call upon to make this trip work for you - with good memories - be sure to have your tool box at your side at all times, so to speak and listen to your body all along the way.
You would do no less were an ankle to need extra care, so honor the needs of your whole body -- you'll get to do more that way, just spread out. It may be a more relaxed pace but you can still gather marvelous memories. -
[ 08-27-2010, 06:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Fortunately, I'm not celiac. I never had any kind of digestive symptoms. In fact I've always throught of myself as having a cast iron stomach.
My LLMD was concerned two years ago about my weight loss and lack of muscle tone. She suspected I wasn't able to utilize protein due to inflammation from lyme and possibly gluten.
She had me tested and i only have a sensitivity. I have a gene from each parent.
I went partially off the diet and was fine. But before seeing her after not seeing her for a year, I felt guilty and so started being gluten free again.
I know a nutritionist who is better than a doctor for bio-nutrition. He disagrees with her. Says this is a fad for people like me who aren't celiac and don't have symptoms. He says taking enzymes regularly and varying diet is enough.
But for now I'm going to stick to it.
I checked for Italy and evidently they are familiar with celiac disease and know how to cook for it. Just say "senza gluten" and they know what you're talking about in restaurants.
One person who was reporting on his experience in Italy said the government gives celiacs two days a month off from work to shop for their food!!!
I think Serbia and Croatia are going to be more difficult. I'll miss not eating their wonderful dumplings and desserts.I'm just guessing they're not as familiar with it.
It occured to me that I'm always the sickest in August. So hope better days are ahead!
Posts: 1302 | From USA | Registered: Dec 2002
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posted
This past summer I went on the seven day version of the Mediterranean cruise you are talking about and also spent time in Barcelona. We planned shore excursions so I only went every other day - never two in a row, so I could rest in between days, and that worked for me.
If you don't plan a lot of shore activities, you can have a pretty laid back time and choose to do as much or as little on the ship as you want. I really enjoyed the days everyone went places and the ship was quiet and we stayed on it.
I think the advice to really make sure you can control your own plans is good. I wouldn't let the others create a really hectic schedule for you with no way to bail.
The other thing to think about is the plane trip. We had to go at night and then get in during the morning and because of the time difference, there's no time to sleep (unless you can sleep on the plane) It was even harder coming back because we took a late plane which I wouldn't do again if I had a choice.
I can't give you advice on whether or not you should go, but I think if you do go, there are ways to make it easier on yourself.Good luck with this and have a great time if you go.
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- Ellie makes a good point about the airplane travel. If there is anyway you can have a night in a hotel near where you board (or finish) the cruise, that would be best for your body. I would want two nights separating plane travel from the cruise.
Rest is vital. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I needed to travel to Florida when I was in very early recovery -- only a few months on antibiotics. I felt fine some days and not so great others.
Interestingly, for the first time in my life (including on a trip to India), I'd never felt much of a reaction after flying. But I did on that trip. I just took a bath and felt much better.
From that point on, I paced myself. One day, I felt really nasty and had chills. I wrapped myself in a lot of blankets -- it was 87 outside but I was still cold.
And yet, with all that, I was able to spend time with people I love, and I wouldn't have missed the trip for anything!
Posts: 2549 | From never never land | Registered: May 2005
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posted
Marz I sure do hope you go. For what it's worth my oldest could never travel when she was severely ill. But when she was able to the experience was invaluable.
Like Andie we visited the people we loved (but travel to India or anywhere outside the US isn't going to happen any time soon). We had no pressure whatsoever. Thankfully the extended family understands the situation. If they didn't we wouldn't even think of being around them.
Wow Italy...I SO want to go there!
Keebler I nominate you to be the cruise/trip director. Who knows...maybe one day that will happen. How cool would that be? Everyone on a trip totally "getting it" Heck that might even get me over my fear of being on some boat in the middle of nowhere (that's my interpretation of cruise ships). Hey we all have our issues.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
i've done both ... refused to travel and gone ahead with trips- but after experiencing the mishaps of traveling while ill i came to realize that the circumstances were never as bad as i imagined- and after realizing that, learned not to say no going places- so i no longer sit home and let my fear or expectations get the best of me-
Posts: 94 | From shaker heights, ohio | Registered: May 2010
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posted
I just wanted to say that I hope that you go, and that you have some amazing moments. Maybe you will feel good, and I know maybe you will have bad days. Dont let anyone pressure you, when you need to rest, go rest. Do what you can. I just wanted you to know that I send many prayers and much love and light that you can enjoy this trip, and use the "memories" maybe to help you on bad days down the road.
Posts: 41 | From Springdale Arkansas | Registered: Aug 2010
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