JVes

(That said, anyone who grabs a wheelchair's handles and just starts moving a wheelchair without so much as ASKING fully deserves a verbal takedown by an absolutely irate wheelchair user.)

Quoting one specific part of your message, Banditswife:
"Those offering the assistance gain so much pleasure by giving assistance when needed."

This is something we in the disabled community (including our families) need to learn to do. Accept with grace. We are so stubborn about doing things ourselves, about keeping as much independance as we can. Or we can stubbornly refuse to see ourselves as disabled, or as needing help - even if the help is simply a tool to pick things up off the floor.
Some of us feel like we're imposters when taking a disabled parking space, or the space intended for mobility scooters in public transit - when using such a scooter.

Accept with grace.

Using a reacher helps us remain independant.
Yes, I am in the disabled community.

Yes, I need help.

Yes, I need medication or physiotherapy or a psychologist or that space for a mobility scooter.

And yes, I will learn to accept it with grace. Smile and sincerely thank the person providing the help.

Even if you thank them for the offer but turn it down.

On 5/26/2024 at 8:25 PM, shadow 123 said:

Thank you. I keep telling myself that pain at my age is normal. That what I'm going through now is just part of the process. I have to accept it but doesn't mean I have to be thrilled about it. But the upside is we're still here and we're still upright so good for us! Bless you 

Pain is not normal for a healthy body. Even an old body. More precisely, unexplained pain is not normal."Oh, that's because I have arthritis in my knee" is a normal pain. Rather like stubbing your toe or hitting your elbow just the right way.
Please talk to your family doctor about unexplained pain. You might discover that it's fixable. If it's a non-fixable arthritis, at least you'll know why it hurts.

And if it can be improved, you'll have more fun on your next cruise! Good luck.

On 5/24/2024 at 10:50 PM, shadow 123 said:

Therein lies the problem,, asking for help. I don't think it's so much that I  do not want to bother anyone It's that I hate to think that I need help! It's very difficult for me to accept I'm not who I used to be. I'm not ready to give up but I'm very uncomfortable with being unstable mobility wise , with not being able to do the things I used to do comfortably. It really changed my life.

 

I envy older people who run up and down the stairs on cruise ships. I used to be able to run up and down the stairs

 

 With me, it's mostly the pain and the stability issues.. The walking. I can't walk as far or as long as I used to but I do it. I hate trudging along but I do it. Of course I have the Rollator!

It took me years to accept that yes, I need help. Maybe even decades. Even now, I hate it. I hate it so very very much that it's a constant scream in the back of my mind. I rage against my body, sometimes quite literally screaming into my pillow.

Shadow, I'm glad you took the courage to post that. I don't have answers. All I can tell you is that it's normal to grieve your former freedom and what your body used to be able to do.

On 5/14/2024 at 10:35 PM, Hlitner said:

We have been fortunate to have embarked on cruises from 5 continents it many different ports.  Some have decent cruise terminal facilities, and other ports have little (sometimes just a tent).  Cruise Terminals are expensive to build (and maintain) and somebody must pay the big bucks for that type of facility.  In the very busy ports around the world, facilities have been improving.  Other ports, lack the money or do not have the volume that would justify the cost.  In some cases, the major cruise lines (primarily owned by CCL, RCI and MSC) will help finance cruise terminals.  But again, this usually happens in ports where the volume does justify the cost.

 

My question to the OP is "are you prepared to pay more for your cruise if it gets you a nicer terminal?  The reality is that while we all appreciate nicer facilities, many are not willing to pay the extra money to subsidize the construction of new ports and facilities.  I should mention that over the past thirty years, we have seen lots of improvements of port facilities around the world.  Places like Tokyo, Barcelona, and Istanbul, have spent millions to improve their cruise terminals.  Others like Civitavecchia have been slow to spend the money, but even that port now has one very nice terminal (unfortunately it is not nearly enough to handle their volume).  Other ports, such as Venice, spent money to improve things only to later ban most cruise ships due to environmental concerns.

 

Hank

You make an excellent point. And thank you - all of you have managed to explain not only that it's normal, but why.

It was all terribly confusing to me, but I get it now.

9 hours ago, KBS1607 said:

@JVes I remember you and you are an inspiration to me!  I’m working on balance and I would love to get into my physical therapist's pool. However some issues are keeping me from that. 
 

I cruised November of 23 and had a lot of trouble. I’ve since been prescribed a brace and now we are working on balance with it. 
 

You are an inspiration. 

Thank you!
Not all of us will find cruising a good match, sadly, but for me it's a way to put all my entertainment desires in one place.
The only advice I have for someone where mobility is the main problem: try cruising in a smaller ship, and try to book far enough ahead to get an accessible cabin close to the central lifts.

You mention that balance is a major problem: talk to your PT about walkers/rollators. I find them frustrating, mainly because when I'm physically okay I can move around more freely - I don't have the same turning circle & the like.
BUT, mine has stopped me from falling many times. I'm a terrible falls risk.

If you're happy with your PT, work with them. Do what you (reasonably) can, and give yourself small sub-goals so you get that nice 'I succeeded' emotional rush.

I hope your next cruise is more successful!

The specific port is Port Melbourne, in Australia. (Melbourne is on the south-east of the continent, having a staring match with Tasmania.)

I was expecting something a lot more like an airport. But you're right, the airport has people stuck waiting for planes, and makes money off hosting shops and cafes. The cruise port just has to make sure we're not carrying contraband and get us onto the ship as efficiently as possible.

Is it normal for a cruise terminal to look more like an empty warehouse than something enticing?
We arrived from the taxi into what was basically a concrete shell, and the security screening stuff seemed to be something pulled out of a closet. 

It was difficult to find the disability area, too.

I have a wobble board. My physio doesn't want me using it yet.
You have a good point about the ship & balance.

20 hours ago, Chiliburn said:

You are going to love this one !!

Its only resent and this is what the cruise lines are up against.

 

I think it was put together by Rod and his mates ,what did he call cruise ships?  Floating disease infested garbage cans .

 

 

 

Question for this guy: how much stuff does a non-floating city of 10K people use/generate?
Wow: probably about the same as the floating city of comparable size!

7 hours ago, cruiser3775 said:

I guess it depends on how many people from countries other than Australia and New Zealand are prepared to fly long distances to connect with the ships in South Pacific waters.  I know Australians accept that they will have a nasty long flight to get almost anywhere in the world, but maybe that is a deal breaker for those from Europe and North America?

I've talked to many people who want to come to Australia 'some day'. And for them, yes, the travel time is a deal breaker.

On 3/20/2024 at 11:17 AM, colourbird said:

 

For me, distance between things is good. I wake up every day at 4am and start walking around the ship from 4.20am till 7am for breakfast and do lots of walking all day long and never use lifts. I'm looking forward to Icon with more places to walk around and explore. When I was on Vista as it was so small, I managed to work out a 10 minute lap of the upper decks / jogging track, up and down stairs at the front and rear which made it a really good walk with lots of different views (once the sun came up) (although I had Venus keeping me company for most of the cruise). 

I wish my body allowed me to do such things. I need to use a walker just to safely get around at home. I like small ships, for an obvious reason.

As for the mega-ships, I don't think that Australia/NZ has the cruising population to support those.

I used to live just off tram 96' route. I think it was that one.
I no longer live on a tram route, and I miss it. It led past some lovely places, so sometimes I'd just ride the tram, get off on a whim. There was a great supermarket - independant so I never knew exactly what was in stock (other than the basics).

I love the Melbourne trams. I really do.

If you're looking for a city which has a wide variety of 'you never know what you'll find' shops, move to Melbourne and live close enough in that you're on a tram line. 

I just had a tooth break, and now extracted.

I need a cruise.

11 hours ago, ChrysFox said:

Try it fried.  Little crispy bites.  I love fried okra, but can barely tolerate it in any other form.

When I see it like that, I'll definitely give it a try. I'm not sure if it's in our mainstream supermarkets, but I'm sure a grocer or a farmer's market might have some. If I can find it, I'll buy one and hunt down a recipe.

My brother is also severely ill: he's actually worse off than me, and his prognosis is bad. He came up with a plan for the rest of his life.

He works on giving his wife and children good memories of him.

 They're the most important people in his life. He's also sharing life with our parents and with me, but (understandably) his kids and wife are his main focus.

In my own life, my mantra is that every day, I

teach something, learn something, and make someone smile.
If I achieve that, it's been a good day. Since I took up that mantra, I have had 99% good days. The one day I didn't had a bad fall that took me from Emergency to Short Stay. I think that's a reasonable excuse!
(PS: I now have balance excercises in my PT folder.)

Having a way to decide whether or not a day has been successful helps me a lot. Consider making up one of your own!

On 2/20/2024 at 3:03 PM, ceeceeDee said:

Totally get what you're saying JVes and always try to assist when I can (even if it's just getting out of the way 😀). However, one time I saw a blind person obviously struggling to get on a train. I tried to assist and got abused by that person for my trouble. I first asked if I could assist, so it's not like I came out of nowhere and startled them but boy did I get an earful. Left me feeling quite shaken.

All I can imagine is that she was having a horrible day. But no, she had no right to talk to you like that. And thank you so much for asking first. That's extremely important.

22 hours ago, Ozwoody said:

JVes actually I can identify with the wheelchair issue.

One of my daughters had to have corrective surgery to both of her knees when she was about 9, and she spent about 6 months in a wheelchair.

When we were out people would ask us what happened, or speak to her very very slowly.

How       are       you              dear?

This annoyed her immensely, then one day when a woman started talking to her like that, she snapped, "There is nothing wrong with my brain, its my knees that are in plaster".

I did not know whether to chastise her for being rude, or cheer her on.

I don't know whether I should be ashamed, but I did the latter.😟

You did right. People behaving like that are the ones being rude. Unless clearly indicated otherwise, treat a disabled person as a normal one, except for the visible disability. When I'm using a walker, I take up more space on a footpath or in a hallway so I appreciate people making the space for me. But (as your daughter said) "there's nothing wrong with my brain".

Those of us who have invisible disabilities have a problem unique to us (I think). We take a disability-only parking spot, put our tags on the dashboard, and get out of the car. Only to be abused (sometimes quite seriously) for 'pretending to be disabled'. Same with special seating in busses and trains.

JJK and MareBlu

Thank you so much for your kind words. And I know you both mean it, you're not 'just saying' that. You have no idea (maybe you do) how much it means to have that sort of kindness.

I leave you with a phrase I cling to on bad days:

I GET KNOCKED DOWN, BUT I GET UP AGAIN, Y'AIN'T NEVER GONNA KEEP ME DOWN!

16 hours ago, Ozwoody said:

 

Hi JVes

I checked out your thread above.

Wow; yes you did need a cruise, and yep I would go along with you need another one.

Certainly hope it works out for you.

 

Its common for someone like me, to not grasp what challenges other people face, as I fortunately have good health. But then you hear the challenges someone else faces, and its then you start to appreciate what you do have.

 

You sound like a fighter, and I feel, you will make it happen. Keep fighting you can get through it.

 

Its not just our own mischief that makes us need a cruise, but sometimes what life dishes up, is also a need for a cruise.

 

Regards

John

I have three choices, and the first two are unacceptable.
Die. (Unacceptable.)
Become so apathetic and lethargic that I have to get dumped into a nursing home or equivalent. (Also unacceptable.)
FIGHT LIKE HELL and GET AS HEALTHY AS I CAN. (Very acceptable.)

So yeah. Option 3.
And I hope everyone reading this chooses option 3 if/when they get faced with these three choices. And help loved ones to choose, too. Make sure they choose it for themselves, so it sticks.

John, I am very happy to see that you do have good health. Treat it as the gift it is, and make sure to enjoy it. Take your friends and family to a park and play frisbee with them. Fly kites. Climb mountains and enjoy the view. Go to the beach, and wade in the surf. Swim in the surf if you have skilled lifeguards patrolling. Hunt for shells. Get a stick and water shoes and explore the rockpools, gently poke things with the stick to see if they're an animal or a plant.
And think of me when you do these things. Just for one or two tosses of the frisbee!
 

What you can do to help people like me:
Notice if someone's wheelchair is stuck in paving. Ask if they need the help, and get them free.*
(IMPORTANT NOTE: always ask before moving a wheelchair.)
Hold a door.
Speak to the disabled person, too often someone will speak to the person helping them. ("Do you think she'd like this?" "Why don't you ask her!")

* A real incident. The wheelchair was stuck in cobblestones on the edge of the road, and in the four or five minutes it took Bestie to reach her, noone - noone! - helped her. Bestie, of course, did. Got her past the cobbles and onto smooth pavement.
 

One of the most memorable times someone helped us: Bestie and I were struggling to manage one person in a wheelchair (me), one pushing (Bestie), me loaded with carryon bags in my lap, and I was trying to manage a pair of suitcases in front of us, like pushing two prams at once.
An apparently able-bodied person saw us, saw that we were aiming for a lift, took about two steps to his left and pushed the lift call button, and was on his way before we could even say a proper thank you.
I've never forgotten that kindness.

On 2/18/2024 at 7:03 AM, Ozwoody said:

I sincerely hope that's from work-outs etc, not impact.😬

Sadly no. Chronic illness. 

Cbtours: I laugh at my problems. A lot. Otherwise, I'd cry.

That said, look at the first post in this thread: 

So major, major YAY!
Also: I need a cruise. It obviously has a positive medical effect on me!

My body hurts.
I can't sleep.
I need a cruise.

20 hours ago, lahlah57 said:

Ha ha ha!!! You said okra and that's what I grew last summer and pickled them! Okra is delicious and some breeds are slimier then others but fresh are excellent!

As a traveler you have to have an adventurous spirit and willing to try!

There are things I draw the line on though which I will not start on so as to not offend! 😋

Fortunately, I can't eat the things which I draw the line on. Not a true histamine I-might-die allergy, just an uncomfortable gut rebellion. Makes a nice 'excuse'. Mostly fish and shellfish.
Things which leave me feeling 'do I really want to try it?' include haggis, snails and blood pudding. I'll try them twice. Maybe three times if they're offered differently (like the okra).
 

You enjoy your okra and I'll be willing to try it in a gumbo or something.
I'll enjoy my vegemite and am glad you're willing to try it in that different way.
It'd be a boring world if we were all the same.

21 hours ago, lahlah57 said:

So there is an art to trying the stuff. I'll give it another shot as you suggest. A whole teaspoon is a no, no and no! 

Thank you for being open-minded (open-mouthed?) enough to give it another try. Expect it to be salty and bitter, expect it to be something you have to get used to. Like anchovies or olives. Or okra. Okra is my big 'no' and 'why?'

One day when I was sick and needed help, Hubby gave me an okra curry. I love curries, and I love curries from this particular brand, so I was expecting the curry-on-rice he gave me. Yum.
Then I took a bite of it.
And my entire body rebelled. I can't even tell you how it tasted. All I can remember is the rebellion, the absolute and utter NO.
So, being me, I took another bite.
And it was worse.

I think hubby ate the rest of the okra curry.

I'm still open to eating okra. But at a buffet or in some other situation where I can control the portion. Like getting one ladle's worth of a gumbo that includes okra. So if my body does that rebellion thing, I haven't wasted much.

So yeah, I'm just glad you're trying again with something gross. Good for you! Let me know how you go.

tl;dr I blather on about stuff.
If you don't want an update on me or a mini-lecture on how it's fine to accept help, skip ahead to the next post.

NEVER be afraid or embarrassed about getting help when it's needed. Humans give, it's built into the instincts that make us groups. Think about how you feel when you offer a gift and it's refused. I can't describe the feeling, but it's icky.

Our social structures - for most of the societies I'm aware of - provide gifts of goods and services to people who, for whatever reason, need it. If you can't safely carry your food to the table you need to call upon the gifts our societies provide. Let the server at the buffet bring you your food. He or she gets the acceptance of the gift, you get what you need.
But accept gracefully. I make a point of acknowledging them as people: a bit of eye contact, a smile, and a thank you. I also get out my notebook and write their name and department down, along with a summary of them going above and beyond to alleviate my disability.

That notebook comes in very handy for the post-cruise survey.

Enough lecturing about disability rights and how kind people are. Update on me.

My physiotherapy is going well. My carers have a few small things they watch to monitor my progress: I can get up from the couch without needing their help, my grip strength is increasing, I can get into the bathtub (to shower) without my foot touching the top of the bath most days.I can sit down and get up without help except on very bad days. Small things, but important small things.

Storms, hot or cold days, and other such atmospheric events have huge effects on my physical and psychological health. Right now, it's been the second of two very hot days (though thankfully we've not yet had a 40+ Celcius day) and we've had a storm so bad that the city had a 'hunker down and seek shelter' storm warning. So right at the moment it's bad. Yesterday, I wound up having a meltdown.

I'm doing some sort of exercise every day: arms day, legs day, torso day, balance day. Lots of balance days, that's my most important. I don't know if I've ever told people, I had a fall a couple of months ago where I wound up out cold. I wear a panic watch, so once I called Hubby and Bestie, they called an ambulance. Medical checks happened, I wound up in short stay for observation, and I'm obviously fine now.
Because of that - and other falls - balance is the most important exercise. And I'm hoping all that balance exercise will help on cruises.

An easy balance exercise: do with a friend.
Stand in front of the bed or a sofa or something else safe to fall onto. Your friend stands in front of you, and is ready to push you onto the bed if you start to fall.
Close your eyes for ten seconds.

That's all. Just close your eyes. I get very aware of how my feet are keeping me balanced, all the tiny little movements they make.
Let your friend do the counting, and let you know when to open your eyes.

I have bad days, I have bad weeks, I'm coming out (I hope) of a bad month. But overall I'm improving, and I've maintained most of the benefit from the cruise.
My case manager is working on getting me the funds for a "respite", in our case a cruise, and my travel agent has my file close at hand waiting for Nikki to give us the 'go'.
We're planning to stick with Princess for the first few cruises, since we were very happy on the Grand Princess. Diamond Princess is also in our waters.

We'll deal with getting passports maybe later this year, maybe next year. Once we have that, we can do New Zealand cruises. (We live in Australia, so we have the older cruise ships. We also have access to lots of Aussieland cruises, so no urgency on the passport.)

You don't spread it as thickly as you do jam. No wonder it tasted gross. Treat it more like hot sauce, only pretend you've never had hot sauce before. (That's your why. I like vegemite the same way Texans like hot sauce.)

When giving it to someone who's never eaten it, I put it on toast with plenty of butter. I take a little bit on the knife and make a smear.

Me, I can eat it by the teaspoon. In fact at one point I was deficient in one of the vitamins that's readily available in vegemite (I think B-complex?), and the family doctor "prescribed" be a teaspoon of vegemite every day. I'd sit down with my homework, with a teaspoon of vegemite on a saucer beside me. Eventually I'd just pop the teaspoon in my mouth and treat it like a lollipop.

Word to the wise. Marmite is not an acceptable substitute.

To be honest, I've never eaten lutefisk. But I love Vegemite.