Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Friday, May 24, 2013

Book It, Then Block It

I have some travel advice as we start into the long weekend when a lot of people travel. David and I do a fair amount of recreational travel, taking weekenders to pursue our railroad photography hobby and see some minor league baseball. When traveling with challenges, planning ahead is important.

I try to remember to pack snacks and bottled water for taking medications and because I know that becoming dehydrated happens faster and is an issue for me. Dehydration can just totally drain me physically and that can definitely dampen the spirit of fun when we travel. I also keep a blanket in the car. I have secondary Raynaud’s with the MS which makes me very sensitive to cold. Even in the summer the air conditioning gets to me and a blanket keeps me comfortable without parboiling my husband in his own sweat. (smile)

Another important thing is a hotel reservation. When we travel I’m in a wheelchair. While I use the walker or “furniture surf” grabbing the familiar stable things in the house sat home, it’s much safer to use the wheelchair when I’m in an unfamiliar place and will be going more than a few feet. When we make a hotel reservation we, of course, always reserve an accessible room. But that’s not enough to ensure that we’ll actually have an accessible room!

Last year when we checked in to the hotel at a conference we attended, my husband and I went to the desk together; he walked up and I rolled up. The clerk at check in addressed both of us, so I was seen. She gave us our keys and we went to the room. The hallway into the bathroom was narrow. There were no grab bars in the bathroom, no hand shower and a low commode; nothing was in compliance with even ADA minimums. We called the front desk to complain and get switched into the room we reserved. She said they were "out of handicap rooms.”

Out of them? We reserved an accessible room, how can they be “out of them?” I reserved with a credit card. If we just didn’t show up they’d charge my card, but they gave up our room anyway? There was still no excuse for not telling us, me sitting right there in a wheelchair, that the room they were checking us into was not accessible.

My research after the fact told me that hotels notoriously overbook accessible rooms. Reserving an accessible room is not a guarantee that you’ll have one. After making a reservation online or when making one on the phone you need to call the actual hotel and say “block the room.” That means they have to have an accessible room for you when you check in.

I don’t think that's okay. It is absolutely necessary, but not okay. Personally, I don’t think it should even be legal to offer to reserve accessible rooms and then not have one at check-in. Something needs to be done to make it impossible for hotels to reserve more rooms that they have. It shouldn’t be difficult to only be able to reserve four accessible rooms a night if you only have four accessible rooms. After four are reserved for any given night, no more show up in the system. Not rocket science or even major computer programming.

But, until a time when that error is fixed, we have to do it for ourselves. Make sure you call the hotel you’ll be staying at and tell them you just made a reservation for an accessible room and you want to block it. Also, while saying “handicap” may not be politically correct, don’t be too proud to use the word. We stopped at a hotel deciding not to drive all the way home one night and asked if they had any accessible rooms available. The clerk said “all of the rooms are accessible.” She must have thought we were asking if they have doors. Saying “wheelchair” made a huge difference in her interpretation. Use words like handicap or wheelchair when reserving rooms in person and when calling to block a room mention that you want to be sure there is a correct room when you arrive. Just because”the system” or some of the people in it aren’t up-to-date, doesn’t mean you should give up any of the things available to you to enjoy traveling.

At another time I’ll talk about the wild differences in quality an actual accessibility in different hotels and different places.

Monday, May 6, 2013

Who Has It Rougher?

A couple of years after diagnosis, I’ve found many ways to deal with MS. I’ve accepted that I have challenges I never thought I’d have and I’ve found ways to work around them or get help when I need it. I’ve worked hard to deal with my situation and be emotionally okay with it. But my state of mind is not where the emotional turmoil of my disease ends
My Dad is owed by a little dog. My aunt got the dog because she wanted a tiny lap dog, but this dog fell ears over paws for my dad. I feel my aunt’s pain there, the cat I brought home many years ago, swearing I’d leave home if he didn’t let me keep her, fell in love with him at first sight and they bonded into mutual adoration quickly too. Animals really do love my dad. Pop also seems to have a thing for females who end up challenged. You see, the little dog, Zara, has recently become blind.

I talked to him on the phone and he told me about her retinas becoming detached. The vet asked if she played rough with their larger dog or if she might have wandered off, but the likelihood is it’s because she is of a new breed that has a number of genetic issues. Like his daughter’s MS, Zara did nothing to cause her challenge and there is nothing she could have done to prevent it. Pop says that she seems to be adjusting; learning new ways to find her way and get to the food, find him for cuddles and get where she needs to be when he takes her out for a walk. Hmm, similar to my using the cane and walkers to get around the house, strategically placed chairs in the kitchen and a wheelchair and paratransit for appointments.  We both adapted to our situations.

While Pop told me what was going on with the little dog and how she was handing it, he made a comment that really opened my eyes and gave me some understanding. He said she seemed to be getting adjusted but it was just really hard to watch her stumble and bump into things because there was nothing he could do to help her. I asked him if that was why he had a pained look when he visited and I was using the walker to answer the door when my medicine was delivered. He said “yeah.” It’s hard to watch someone you care about suffer when you can’t do anything. He’d love to wave a magic wand and make me MS free and give little Zara her sight back, but he feels helpless.

Zara is getting adjusted, the fact that she is dealing with the new blindness says she’s learning and accepting it. She has no choice and instinct stepped in. That’s like me. I’m constantly learning and dealing with the limitations MS gives me. But although I have my frustrating moments, and trust me, I have my occasional burst into uncontrolled tears moments, I am not suffering, I am adapting; It’s what I have to do to survive. The people who care about me are the ones who are suffering. They suffer because they remember when I was able to walk, dance, and clean the house. They cannot fathom what it’s like to not be able to do those things. And I don’t want them to understand because I care about them and wouldn’t want them to live with my limitations. That’s also why I understand their feelings; because I’d feel the same way if it was any of them and not me.

My own husband tells me he doesn’t think he could cope if he had my condition. But he could, if he had to. When you have a challenge, you learn how to accommodate yourself; you adjust the things you do so that you can still accomplish the tasks you really need to. That doesn’t mean it’s easy, but you understand exactly what your limitations are and just how far you can push yourself. Your loved ones can’t possibly know what you’re going through and it’s even more frustrating to them than it is to you because they can’t help you.

I’ve been much more careful in the past week since having my “hmmm” moment when talking with my dad. The toughest thing I’ve had to learn with MS is how to release a little control and let people help me, but it’s made my life much easier to accept and even ask for help. As with any aspect of life, communication is so important to understanding. Whether I ask or it’s offered, when someone helps me I try to remember to include why I’m grateful. For example when someone holds a door open I say, “thank you that keeps me from skinning my knuckles.” I add just one line that lets them know they’re not just being polite, but they’re making an actual difference. We do things to manage for ourselves to feel less helpless, but there are things we can also do to let people, relatives, friends or strangers who actually do want to help, know that what they do is an important part of helping us cope. If we work together to make it easier, none of us are helpless.