Monday, August 29, 2011

Riding the Emotional Roller Coaster

The vacation was a lot of fun.  But like a roller coaster there were a lot of highs and quite a few lows.  Just getting to be able to go seemed impossible at one point simply because of the extreme pain I was in over the weekend before we were to leave.  A not-so-quick trip to the ER took care of that situation.  Oddly, even though I had just had x-rays on Friday morning at my surgeon's office, by Friday night I was in so much pain I could hardly walk.  Saturday morning was bad.  But by Saturday afternoon I thought I was doing better although I was back to using my crutches, which really upset me.  Saturday night my daughter decided we were going to the ER and see about getting a steroid shot and to make sure nothing was wrong.  I got a new set of x-rays at the hospital and those showed a slight difference in my left knee cap from the earlier set Friday morning.  Three or four months ago when I had last seen the surgeon I was given an exercise to do to pull my knee cap to the center where it should be.  At that time it was slightly off-center to the left.  Friday morning it looked to be closer to the center but more to the right.  But by Saturday night it was way off center and to the right.  The ER doctor seemed to think that because I was using the moon boot for the sprained ankle, it caused the knee cap to move over further than it should have.  So, in short, my knee was sprained.  And every time I would straighten out my leg the muscle on top of my knee/thigh would pop or snap.  The doctor called that "subluxation" which means in my case, dislocation of the knee cap.  They gave me a steroid shot, a shot of strong pain medicine, and a prescription for stronger pain meds than I was already taking.  I went home, slept, and woke up Sunday feeling a little better.  My daughter went to church and had herself anointed in my place for my knee pain.  By Sunday afternoon I was feeling back to myself again, and got myself packed for the vacation.  That weekend in itself was an emotional roller coaster!

The vacation was a lot of fun.  We did a lot of different things and had to pass up other things we would have loved to do because we just did not have time to fit it all in.  One of my major goals was to take lots of photographs, hoping that maybe one or two of them might have some value to sell and help me move into a new area of life as a professional landscape/nature photographer.  I did succeed in taking hundreds of photos using both digital and 35 mm film. One of the "themes" of the photography was to be "Vacation From a Wheelchair", or maybe "Vacationing Disabled".   I went into this trip knowing that things would be different and sometimes difficult.  What I concluded when the trip was over was that it was a lot more difficult than I ever imagined or prepared for mentally and emotionally, as well as physically.  I do know that had I not gotten that steroid shot Saturday night, anything else I did through the week would not have even happened, even if I had tried to go in spite of the pain.

I came up with some thoughts for anyone who might be planning their first vacation as a person with disabilities.  These were things that I may or may not have thought of prior to the trip, but would definitely take care of if I ever plan on any kind of trip again.  Some of these things might feel a bit embarrassing but choose to be embarrassed this way instead of some worse way down the road.

Call ahead!  I cannot stress enough the importance of doing this!  For some things we thought to call ahead about.  We called about the Island Hopping Tour to find out if the boat was wheelchair accessible, and how it would work once at the islands with getting the golf carts.  We should have called ahead about a lot of other things and had we done so, we would have been able to make better plans, and had a lot more fun with a lot less stress!  So what should you call ahead about?  Embarrassing or not....the most important thing I can think of is to check out the facilities for every location you plan to visit including lodging.  Do not ever assume that the public or private restrooms will be adequate for your needs.  The restrooms where you choose to "live" during your trip are very important to have fully accessible.  Ask before booking!  The most beautiful location you could have for your trip could be ruined by something as simple as the location, size, and position of your toilet, shower, sink, etc.  Next, get online and check every tourist site you plan to visit.  Almost all of these places have their own websites or are listed on other websites of the area you are touring.  We never thought we would have difficulty in a town geared for tourism in a country with an American Disabilities Act supposedly in force.  We could not have been more wrong!  On the Island Hopping Tour, for example, on the island where we had the most time to explore, we lost the most time just trying to find a restaurant where we could go have a nice meal while taking a 4 year old child, and 3 adults, one using a cane but having trouble walking very far.  Finding accessible entrances was very hard.  Then, not having to do with the disability at all, we entered one location where not one staff person greeted us or offered to take our order, or do any other type thing to make us feel welcome there.  This place was accessible for the entrance, but the seating was horrible for someone like me.  In fact, almost all the places we looked at had horrible seating for a disabled person.  Most of the places were a combination of picnic tables and those small high rise tables with high rise stools, and of course bar stools as all the places seemed to be bars of some sort.  In this place, however, we were stared at by customers and staff alike but no one bothered to see what we wanted to drink or eat.  I felt like I had entered one of those "made for movies" biker bars where you are just the wrong type and not wanted.  After about 15 minutes we left.  Later at home I looked online and found their menu on their website.  Yes we could have eaten there.  Why we were not greeted or served, I have no idea.  It wasn't due to them being busy.  Staff were just standing around doing nothing.  So look online at everything you possibly can BEFORE your trip to make sure of parking, accessible entrances, comfortable seating, menus, and service.  The first place we tried that afternoon was a multi-level location called The Boardwalk which apparently housed several restaurants and bars.  I think we saw an elevator but not so sure now.  If an entrance is accessible for the disabled it has to be very visible, especially for someone walking because we often have to keep our eyes on our feet and what is in our path so we don't fall.  It makes it even worse if we have to be looking all around trying to find the proper entrance.  By the time we got to The Boardwalk I was so tired and still a bit seasick from the boat ride, that all I wanted was to find a nice restroom and a place to sit down and eat.  Everything looked beautiful outside but inside the restroom, it was a different story.  There were no handicapped stalls and no railings to help if you needed help.  Thank God my daughter was in there with me...well I did have my cell phone with me.  This is another point to remember.  Keep your cell phone where you can get your hands on it easily all the time you are on your trip and make sure the other parties with you have theirs with them in case you need to get hold of them in a hurry.  The last place we stopped at had no visible handicapped accessible entrance.  Getting into this place involved climbing steps without railings which was very difficult for me as I was doing it alone.  My daughter had to drop me off there and then drive half a block away to park the golf cart.  By the time I finally got inside I was too exhausted to even talk but managed to tell them we needed seating for 3 adults and a 4 year old child.  They treated us very well there and the food was good.  Expensive but good.  When we were ready to leave I asked the server if they had an easy accessible exit close to where my daughter could pick me up with the golf cart.  The server had to actually go outside and look and only then realized that even the steps had no railings.  She found the wheelchair ramp.  It was half a block away down to where my daughter parked the golf cart.  I had to walk that far to get to the ramp, and during that walk, we had to pick up and move a couple of bicycles that were parked ON THE RAMP by thoughtless tourists who just wanted to get into the restaurant next door to ours.  Had I been in my wheelchair, those bicycles would have had to have been taken clear off the ramp which was also the raised sidewalk entrance into both restaurants.  I really don't know how accessible any of the other restaurants in the area were.  There were many of them.  The ones we could even see the door had signs posted saying 21 and over which made it sound very unfriendly for families.  The websites I found after we got home showed the town as being a place for exciting night life rather than family friendly tourism during the day.  Almost all the restaurants were bars.  We never got to do even one of the things we had planned for the trip to that island.  It was very disappointing to go there tired, hungry, and grumpy, and leave their tired and grumpier even though we finally did get to eat overpriced burgers and fries. 

There were other adventures during the week that were much better than that and for that I am glad.  Emotionally I dealt with things I didn't want to deal with, especially on a vacation.  Had I called ahead on more things, I might have been better prepared.  Even to find fishing and swimming locations that would be both wheelchair accessible and child friendly would have been a good thing to know about ahead of time.  We only tried to fish once, but could not find anything that was good for my grandson and myself.  His safety was my biggest concern, between the cars in the area and the possibility of him falling in and hurting himself on the big rocks or drowning.  I didn't care about fishing.  We were told about a little pond where he could fish safely so we went there.  In the chair or walking, I could not get down to the pond so I sat up at one of the picnic tables and watched and took my pictures.  That was one of the worst emotional lows of the trip.  I felt absolutely useless and alone since fishing was something I wanted to do while I was there.  I also did not want to fish in a pond since we have ponds here.  I wanted to fish in the lake but there just was nowhere that we could find in the short time we had, to be able to be both child safe and wheelchair accessible. 

The rest of the trip went well.  I did have other low points where I knew I could not do things I wanted to do so badly and I know these are things I will have to continue to deal with in life.  But I also had victories during the trip.  Some parts of the trip I used the wheelchair but most of the trip I walked and that was a victory, even though walking was very difficult and slow. 

There are going to be things I will have to deal with the rest of my life as I continue to learn how to live with my disabilities.  Many of these things I won't like.  I especially don't like making it difficult for those around me.  The worst part of the whole trip were the feelings that if I had stayed home, everyone else would have had a much better time.  There were also the many times my grandson chose his other grandma over me even when we were sitting back at our cottage relaxing, and I knew it was because she could do so much more than I could making it more fun to be with her.  It is one thing to know and understand why these things are the way they are, but it is another thing to process the emotional side of it all.

I hope I remember the lessons learned this trip.  I really enjoyed getting the time away with my daughter, grandson, and my daughter's mother-in-law.  She and I got to spend time getting to know each other better and that was a big plus.  It's now 3 days home and I am still tired from the trip, but I am trying to stay active.  Last night I went to the park with my daughter and grandson and one of my daughter's friends.  Today we went to the store.  The trip was a lot of fun, but I am glad to be home. 

Thursday, August 11, 2011


Wow! Where do I start?  
In January I had my left knee replaced, so now both of them are done.  The left knee healed so wonderfully.  The right knee is still giving me some issues even almost 15 months after having had it replaced.  There's still stiffness as well, but it's not so bad as long as I keep as active as I can.  I started out the spring very well by getting out and walking regularly either at the local Walmart or at the park.  But then it got hotter, and my opportunities to walk dwindled for awhile.  Then I ended up with another sprained ankle thanks to my weak ankles I've had since childhood.  This summer has been so hot so early on, and I don't do well in heat.  It's hard for me to breath when the air is so hot and humid.  So even if my ankle had not been sprained and kept me from going out, the heat would have.
My daughter surprised me the other evening.  She planned a vacation on a whim and decided to take me along!  I've been so excited about this for the past few days!  I so need a vacation.  And I've never really gone on a vacation in my life so this is especially exciting.  My ankle is healing, storms have moved in and cooled things down to a more comfortable level, and I am ready to go.  I can't wait to get out into the beautiful area where we are going with a gorgeous lake front cottage and enjoy every minute I can.
But I am afraid.  Unfortunately, I know my limits.  And I know this vacation is going to push those limits to the max.  It's only for Monday through Friday but that's a lot of time for someone who never goes anywhere!  I don't want to disappoint anyone, least of all my daughter or my grandson.  She has also invited her mother-in-law and I am glad of this because it will give her someone to do things with if there are times I am too tired.
So many things make this vacation something that has me nervous.  One of them is that I don't sleep well.  I am a night owl and up most of the night every night, even when I take a sleeping pill.  I know the increase in activities will make me sleepy and I am hoping I won't have too much trouble sleeping even the first night.  The first full day there is going to be jam packed with things we all want to do...island hopping cruising.  I can't wait!  I want to see everything.  We are taking my wheelchair but probably won't need it for this expedition as we will probably rent golf carts to wheel us around each island.  It's an expensive thing but necessary.  It's either that or bicycles.  My camera is going with me everywhere.  In fact I will be taking two cameras, one that actually still uses film!  On another day we are going to see an African safari exhibition and that is going to be so interesting.  That one might see me using the wheelchair.  I want to at least try to go swimming there at the cottage but am not sure I will be able to.  It's not a regular beach.  Swimming is allowed but no lifeguards and no beach.  I am not sure how the sand bar will be for my being able to get up and down from sitting or swimming positions with my new knees.  I haven't been able to get down on the floor and back up with them yet.  So thinking about it worries me.  Fishing doesn't seem to be one of my worries.  I think I will manage to fish somewhere while we are there, and I've been told I have to be sure to teach my grandson more about fishing so we can feed all of us.  He loves to fish so this should not be a problem.  That is as long as we don't catch anything bigger than he is! 
My daughter is talking about not really going out and doing a whole lot of things because none of us really has money for shopping and other things.  Staying back at the cottage sounds peaceful and with her grilling our meals, what could be better?  Still I am afraid.  I am afraid I will let her down.  I am afraid of being a stick in the mud that ends up staying back while they go have fun because I am too worn out to do anything but relax at the cottage.  For me that could be a good time.  But would it be a good time for my daughter?  I can be satisfied just having my wheelchair with me and walk it or ride it around the cottage area and maybe over to the lake and just take lots of pictures.  
Hey!  Writing about it made me see that it can still be fun for all of us.  Somehow we will figure out the difficult parts and make it work.  Oh I am so excited!  Thank you my daughter for this gift!  I love you!