The Time has Come, No Traveling

[Seasha]

Craig - you are remarkable and I would love to have known you beyond MSW! It sounds like you have had a life well lived (and traveled too) with the wisdom of a sage. Not too many folks could say the same.

I'm sorry that you can't go with your family to WDW. If I were you, I'd get a bucket of cookies to fill up your new jar and "eat your heart out"!!

A favorite quote of mine is by Lao Tsu:

"A good traveler has no fixed plans and is not intent of arriving"

Good thoughts to live by. Peaceful journey to you and hugs~~ Please keep in touch when you feel like it!
Seasha

[Tawanda]

Sorry to hear about this. I hope that it was your decision. All your doctor can give you is an opinion, but ultimately, you know what's best for you.

Long vacations are so hard with M.S. I can still get through them, although it seems like I am trying to hide my resentment the entire time because I'm not well. I do it for the sake of my family, mostly, because I have just enough ability to still "get through it" (more like "get it overwith"), and that seems more important than expecting to enjoy myself the way I did when I was healthy. Eventually, I'll be all done with them altogether. We all know that this is a progressive disease, and I guess as sad as these life changes are, I suppose we aren't completely suprised when the reality hits. I often wonder what it will be like when I can't drive anymore. I can't fight forever...

Nice story about the cookie jar. I watch all those shows like Pawn Stars, American Pickers, Storage Wars, etc. (don't ask me why, because I can't figure it out!).

Do you/grandkids have a cameras on your computers? Perhaps you could have some videochats with the Grandkids during their trip. Good luck to your wifey-poo, too...sounds like a challenging gig for even a healthy gal.

[NeuroNixed Craig]

Please, allow me to address some of the thoughtful concerns as best I can to better explain the situation.

Tawanda: "I hope that it was your decision." Excellent point we ALL should keep in mind. Yes, this was a solid decision made by me and my wife with my doctors input for serious consideration.

"I do it for the sake of my family, mostly, because I have just enough ability to still "get through it" (more like "get it overwith"), and that seems more important than expecting to enjoy myself the way I did when I was healthy." This is 100% my situation with the exception I would make every attempt "to enjoy myself the way I did when I was healthy." To be more concerned with the getting through it does have a serious impact to be a wet blanket.

The bottom line in my specific case, taking this trip with everything we all know is involved, could seriously increase the progression - permanently - at a much higher level, shortening my time considerably more than right now and staying home.

Sparky: Thank you, I felt the analogy to be right on target for all chronically ill people and most healthy people have no conception.

DianeD: I very much appreciate your perspective and recommendations based on your experiences. Currently, I have progressed very much passed that point and everything you say would have applied to me almost two years ago. My disease is very aggressive and insidious beyond PPMS, thus regrettably, what you share would have no positive impact on today's decision.

This decision was made with the insights and recommendations of my doctors and counselor. My wife and I seriously evaluated my downhill progression and results of traveling on the 16 day Hawaiian cruise last November, daily activities, and at the end of September, our 7 days at the beach. Each becoming obviously more detrimental in their effects.

My time is growing short. Why intentionally do something causing severe discomfort resulting in a serious lack of enjoyment and seriously jeopardizing my life by shortening that time much more? No, I don't like it but will still not begrudge my situation with bitterness or anger. I am at peace with my decision, but that does not remove the "Dyson Factor" from the whole scenario.

Thank you all for reading my post and responding so thoughtfully with your observations and recommendations.

Side Note: Many of you have seen me use the term, "Dyson Factor," in my comments and descriptions. It is my way of politely stating a situation sucks at the highest level possible without actually saying it that way.

[ShakespeareMama]

Hehe I like your "Dyson factor" term.

I don't have too many words, at the moment, but I'll say what I can get out.

I'm very happy you got your cookie jar. It was suggested that that's sunshine on a cloudy day and I think that states it perfectly.

I also wanted to state that I think you are wonderful for being so positive about your wife going. What a fantastic husband you are.

One last thing... Will anyone be staying with you during that time? At the least, please come here for some company and support, if needed. No matter where you are, you deserve to smile.

I hope everything I wrote makes sense. I'm quite tired. Not too tired to send you a hug, though! *HUG!*

[NeuroNixed Craig]

Thank you all for you warm comments of support and concern, they are ALL appreciated.

@ ShakespeareMama Very perceptive of you to ask such a question, which I'm sure many have thought of also. I am blessed to have three very good friends from my church I've known for many years stopping by daily to check on my. I've provided them with their own door keys, which the one key will open all doors.

I look forward to their company however brief it might be at any particular time. Even if I'm in bed and asleep, that's OK too........as long as I'm still breathing.

I've tried to cover all contingencies and I am at peace with the decision. After all, isn't that what chronic illness and life are all about? Evaluate, Adapt, And Overcome: Accept No Limits In Life. Sorry, I just had to plug my book on that one. It was just hanging out there waiting for me to pounce.

[DianeD]

Sorry, Craig

I didn't read all your posts, therefore I'm a bit clueless regarding your MS situation.

Sounds like you are totally award of your situation, therefore making a good choice not to travel.

I always encourage my family to go ahead and take their vacation minus me (if it's not going to work out for me). I have MS, but my loved one's thankfully do not. I would actually rather stay home rather than be a burden or not enjoy myself due to troublesome symptoms.

Unfortunately my sons and my extended family do not live near me; they are literally thousands of miles away. This Christmas we will get together for a rare family Christmas. This will require me to travel and I know it will be difficult. I will only go if I am NOT going to be a 'spoiler'.

If it were just a Christmas at home I'd be okay and if things got bad i'd just go lay down. Everyone knows I need to have this alternative and they leave me alone.

Sounds like you have traveled quite a bit and I'm glad to hear it.

I do think you should try to find something special to do while they are vacationing. Make sure they leave you with some special treats and I hope you can vicariously watch them with camera technology.

I'm actually relieved at times when I can't go on the adventures (skiing, sailing, etc) which I'm klutsy at in the best of times. So I take my Kindle, crossword puzzles, computer and anything that I'm interested in that is portable.

I hope things work out for you. Hang in there.

Diane

[palmtree]

Craig. You are not alone. My MS has not yet progressed very far, but I had to give up traveling in the year 2000. I went to Puerto Rico to a salsa dance festival and I got such a severe asthma attack that I was on the phone with my allergist the whole time.

There I was, on these gorgeous beaches, laying there in the evening watching the minutes go by, struggling to breathe. The dr called in prednisone to Walgreens in San Juan and was preparing to air lift me home.

The only other trip I took was to Denver to a lung hospital. It's a short flight but flying has become impossible. I was in a wheelchair so the singled me out for a complete search, insisting that I stand up and take my shoes off. I couldn't breathe in the airplane cabin and I was airsick.

I've gotten used to not traveling, except I feel sad when people ask me if I went anywhere last summer. I enjoy hearing about others' trips. It's like going without having to suffer all the health consequences.

My son has had a girlfriend from Holland for 5 years. I don't know what I will do if the wedding is there. I would have to make myself go, somehow.

Are they going to Disneyworld or Disneyland? i live right by universal studios. It's been 100 deg. here and not expected to cool off soon. No one should be out in this heat.

With all the technology, now. You don't have to miss it. there is SKYPE and the whole thing can be recorded on an Ipod.

I'm sure your family will make sure you enjoy it from the comfort of your own home, taking extra good care of yourself.