Advice from those who have BTDT.

[pls5286]

I am looking for advise and experience for those who have been in my situation.

 

A little background: I am 40 years old, married, 2 kids, 13, and 20. I have been disabled since 2003 due to severe headaches. I have had 2 TIA's although you can't tell unless I get really really tired. Both my DH and DS know how to support me walking when that happens. The TIAs affected my right or "good" side.

 

I have always had a bad knee, just keeps getting worse, and now my next step is replacement. I also suffered a severe sprain to the same (left) leg, that just did not heal correctly. Now, if I do any walking, the ankle is heavily braced up, just to prevent pain. My knee has gotten to if I do more than go to Wal-Mart, it is in a heavy duty brace. It is at the point, that over the past 6 months that a day out with the family now requires a day to stay off my leg, except trips to the bathroom, with pain and swelling up to a week later and more brace time. Our last two family outings, DH has encouraged me to use available wheelchairs, just because it takes so much out of me, and on the last one DS is encouraging it too.

 

I feel like I would be giving up part of my freedom and what mobility I have if I make the decision to take a wheel chair on our next cruise. There are quite a bit of walking activities my crowd would like to do. I feel like if I use a WC, I would be slowing them greatly down and impact where we can go.

 

If it helps any we are cruising on the Carnival Sensation, going to Key West and Cozumel in Oct.

 

Thanks in Advance!

[Enforcer]

Hi,

 

I use a scooter but it took me a very long time to start using one, I thought that I was giving in to my disability.

 

What made me realise that it would be in my best interest to use one was that I wasn't able to keep up with my wife and it was impacting on her life as well as mine.

 

I see using a scooter as a little victory to me as it gives me back some of my ability to be in control.

 

Pete

[xxoocruiser]

As I began to worsen due to having MS, my Neurologist said it best when he told me "Using any type of mobility aid including a wheelchair or scooter does not mean that you have given in to your condition. Rather you need to think of mobility equipment in terms of a energy management so you continue to do the things that bring you joy. "

Edited June 30, 2016 by xxoocruiser

[LokiPoki]

Agree with Pete - I've a progressive disability and fought against a wheelchair for a long time because I saw it as a concession to the idea that my condition was getting worse. It's no longer a choice for me, but learning to accept it for what it is and see my chair as a means to freedom rather than a limitation makes all the difference.

 

Yes - there are places a chair or scooter just will not go, whether because of steps, rough terrain or whatever - but if as you say just one day out is enough to mean a week of recovery time, it sounds like you're going to be putting far more limitations on yourself if you try to do a day of walking and ending up in severe pain, than you are if you take a wheelchair and potentially can't get into a few places. And if you take a chair, there's nothing says you've got to use it all the time - you can always decide day to day how you're feeling and whether you need it or not. Worst is you might get a few funny looks or comments from people if you're seen sometimes in a chair and sometimes not, but they're the sort of people best ignored!

[RuthC]

This is how I see it (I rent a scooter for cruises), using a wheelchair or scooter isn't "giving in" to my disability---it's "taking charge" of it.

Using a scooter has given me a freedom to get out there and do things I never would have been able to do without it.

 

Good luck to you making your decision.

[Sequim88]

My wife had traumatic brain injury (brain stem) in a car accident in 1974 and has been right side hemiplegic since then - with very bad balance. She has used a wheelchair anywhere involving distances because walking wears her out - and on unsteady ships risks falls. So really the wheelchair is very enabling. We've toured many places and it has never held us back. Yes, somethings she can't do but would not have been able to anyway, chair or not. Like climbing up Blarney Castle in Ireland. But we walk & rolled all over Rome, Barcelona, Pisa and London and many cities in USA.

 

You'll probably enjoy a cruise a lot more using a wheelchair.

Edited July 1, 2016 by Sequim88

[payitforward]

I remember how difficult it was for me to give in and use a scooter for the first time at a grocery store. I felt as though my life would be forever changed, and I would now "officially" be disabled. Since then, I've learned what others have said - it's "energy management." A cruise is a major undertaking with a lot of walking. To try and do it without a scooter means missing out on a lot of the things I'd like to do because the extra walking just isn't in my energy "budget." A scooter gives me the freedom to come and go as I wish without imposing on anyone else. I would HIGHLY recommend it. You're not "Giving up" your freedom. You're taking it back.

 

Also, for the swelling in your feet and legs - you can purchase an inflatable bed wedge online for under $20.00. ANY time you're in the cabin, make sure to elevate. On my last cruise, my wedge had a leak. I ended up laying my night stand on the bed just to get my feet up high enough. It was a pain, but it kept the swelling down.

Edited July 3, 2016 by payitforward

[Boozebabe]

First of all if you decide on a wheelchair you need to bring your own. The ship only has them to use for embarkation and debarkation. You can get a really nice one on Amazon for less than $100. That being said, I highly recommend a scooter. You can rent one thru a couple companies that deliver them to your cabin. I purchased my own because it became evident that it was needed sooner than later. Our last cruise was so much better with it. I could get around by myself and didn't have to rely on my husband. I wasn't as tired and not in as much pain since I got it and used it on my last cruise. It made me so much more independent.

 

Either way it will make things easier on your son and hubby. They deserve a vacation too.

[pls5286]

Thank you all for your advice. I do believe we are going to borrow a chair from a friend. The tour we plan to do in Key West does involve a good deal of walking, and the next day is Cozumel, and I definitely want to be able to get off ship and enjoy the port there as well.

 

We took a trip to Stone Mountain for just the Laser Show on Sunday. There was not a lot of walking, plus a huge break before we went back to the car and the knee was huge and swollen yesterday, and going to the dr today. Not to mention the heat and everything here in GA sent me to the ER yesterday.

[Boozebabe]

Key West is very level. You will encounter sidewalk curbs etc but I think you'll be able to get around there just fine. Its a long walk to where you meet for tours so the chair will work out gteat. I take a bike cable/lock to lock mine up when I can't take the wheelchair or scooter somewhere. Just cable it to a railing or something similar (out of the way of course).