Monday, July 23, 2012

Coping With Other People's Expectations

Why is it that other people always seem to either think you can do more than you actually can, or they think you can't do as much as you actually can?  Why don't they just see you as you really are? 

Do the ones who won't accept your limitations just not want to deal with the fact that you need more help than they are able to give?

Do the ones who add to your limitations with what they think should be your limitations do this out of guilt or out of needing to feel needed?

I don't have the answers.  What I do know is that I would just like it if people would accept me as I am, help me when I need help, and let me do the things I can do without trying to take that away from me.  But I also see that it can be a fine line here.  Those who feel I can do more than I can may think they are being encouraging and helping to push me to improve but not seeing that they may be pushing too hard.  Some may also just not see the limitations at all because they want to think of me as being the strong woman I always used to be.  Then those who take pity on me and want to help with everything whether I need the help or not, or worse, want to help with things I don't need help for but not help with things that I do need help with can hurt me too.  It makes trying to deal with my issues even more difficult when I have to also deal with how they respond to me.  No matter which way they see me, how they respond to me can be a real setback to helping me improve.

I wish it were easier to make people understand.  But all I can do is work on myself and just hope that they come to know what I can and can't do, for now.  Maybe down the road I will improve more.  Maybe I won't.  But for today, I am what I am.  I just want them to know that and accept me as I am.

Thursday, March 15, 2012

Some Days...

Some days I would just like to tell everyone I know that until they've lived my life and walked in my shoes, to just back off and stop judging me.  

Some days I would like to be doing all the things I used to be able to do and now either cannot do them for either physical or financial reasons.  

Some days I would just like to shut off that tape in my head that plays over and over again whenever I say I can't do something that "Can't never did anything."  Because maybe one day I will be able to do it...but just not some days.

Some days I love to dream.

Some days I love to make plans and set goals, small and large.

Some days it feels like breaking down these walls of problems will never happen.

Some days I get tired of trying to learn new ways to cope or new ways of doing things I used to do so easily.

Some days I want to get in the car and drive.  I don't care where I am going as long as I am going.  Then I remember I don't have a car.

Some days I want to share how I feel with my friends and family and have them just listen for a change instead of criticizing or judging or giving unwanted advice.  We all need someone to just listen and give us a hug now and then.

Some days all I need is a hug or two.  I haven't been hugged by another adult in so long I can't remember.

Some days hugs from grandchildren are wonderful.  Some days I need more than that.  

Some days I just need to be away from everyone and everything and just enjoy some peace, quiet, and solitude.

Some days peace, quiet, and solitude is overwhelming and I need someone to talk to, go somewhere with, play games with, or dance with.  I think I can dance, but it's been so long and I've been through so much, I am not sure if I know how or if my body can handle it anymore.

Some days I wish I could go out with friends and have some fun again.  It's been far too long.  I wish I knew who my friends were...and where they were.

Some days I just want to be able to tell someone all these things and know that they understand. 

Some days life is just too hard and all I want to do is go to sleep for awhile.

Some days I want to play and laugh and have fun.

Some days I wish people understood that invisible illness means that you can't always see when someone is sick or is not feeling well or is in pain.

Some days I wish people understood that I mask my feelings very well and don't allow anyone to see how I am really feeling physically or emotionally.

Some days I feel really blessed.

Some days I feel really depressed.

Some days I can accomplish something I haven't been able to do in a long time and it makes me feel good.

Some days things I want to do but find it to be something I can no longer do make me feel useless.

Some days I wish people would realize that I've changed and my life has changed and that I did not ask for this.  

Some days I wish people would not assume that I can do more than I have the strength or energy to do just because they wish it so.  

Some days I feel like I should be able to do things I used to do and when I try it, I end up crying because it didn't work and no one even knows or seems to care.

Some days I can't even accept my limitations and I get very frustrated because I want so much to do more.

Some days being alone is more than I can deal with but knowing that others in my life don't understand makes me feel even more alone.

Some days I feel like all of the above all in one day.

Some days the pain hurts so badly that all I do is cry, and nobody knows this about me except for God.

Some days I wish I had a really good human friend who understood all this stuff and wanted to spend time with me anyway.

Some days I write things like this because it's the only way I can get it all out.  But I don't know if anyone is listening...or if they truly care if they are listening.  

Some days I wish someone would really hear me.  I don't think I've ever really been heard.  I thank God because I know He hears me.

Friday, November 4, 2011

Counting My Spoons

There is a website about invisible illness that talks about spoons and spoonies.  The theory goes something like this:  You wake up in the morning and take inventory of how many spoons you have to get you through the day.  I don't remember exactly why they use the terminology of spoons, but to continue, these spoons represent the amount of energy you have to last you through the day.  So if you wake up and feel really good you have more spoons than if you wake up and feel bad.  

As you inventory your spoons you also inventory the activities you have planned for the day.  Then you try to figure out how many spoons each activity is going to need for you to get through it.  Again, I don't know how spoons got into the mix, but the concept works for me.  

I am just now getting used to this "Spoon Theory" and learning how to apply it to my daily life.  Most days I  don't have a lot planned.  Unfortunately you can't collect unused spoons to use on another day.  It just doesn't work that way.

Now when some event comes up that you really would enjoy participating in, you know ahead of time that it is going to require a lot more spoons.  After you have done this for awhile you kind of start to figure out what you can handle and what you can't.  The best teacher is at the end of the day when you have depleted all your spoons and end up exhausted wishing you had not used them all.  It's those lessons you tend to remember.  Other great teachers show you the next day what happens if you use up all your spoons the day before.  Sometimes you wake up already with a deficit and wonder how you will make it through the day.  It's these times you decide whether or not the activities that used up all your spoons were worth the effort.  It's these times that help you decide whether or not to participate in future activities that require many spoons.

Over the past year I have learned to always include driving time both ways, along with any waiting time involved, and any extra activities that might be included.  This comes in handy when planning activities.  For example, the latest event is an invitation to a big concert that I would really enjoy attending.  In itself the concert is not a big spoon-consumer.  However, when I include driving time to and from, getting there early and waiting in line, the concert itself, the time spent in traffic when leaving, finding a place to stop to eat out (even fast food counts in spoon time), I come up with a seven to eight hour trip.  Yes having a wheelchair MIGHT get us in quicker because we would get to ask for help, but it still makes for a long day and more spoons than I have on one of my best days.  I have no guarantees ahead of time what each morning is going to be like or how many spoons I will have on any given day to work with.  So the result is that right now going to this concert is a big MAYBE.  

This is how all activities outside of the "normal" daily stuff usually go for me.   I make tentative plans to go but then might end up changing my mind at the last minute depending on how I feel that day.  What a learning experience it has been for me.  I understand so much better what other people go through now and what it takes for them to get out and do things they want to do.

For more information on the "Spoon Theory" please check out TheSpoonTheory and other information on the But You Don't Look Sick Website 

Monday, September 26, 2011

Two Roads Converged In A Yellow Wood...

Have you ever felt yourself coming up on a crossroads in your life?  Somehow I am there now I think.  The trouble is, right now I don't see down either direction as clearly as the poet, Robert Frost, did when he penned The Road Not Taken.  But even so, when we do come upon these points in life, we cannot see very far ahead no matter how hard we try.  As I look ahead I see possibilities mixed with obstacles.  There is no going backwards, nor would I choose to if I could.  There is only forward.  But which way to go?

As I sit here contemplating where I have been this past year and where I would like to go yet before this year comes to a close, I am also wondering about what lies beyond.  Right now I have no idea which direction I may choose to take.  What I do know is that I can't continue in this place where I am for much longer.  I never imagined in my life that I would have been through the things I've been through the past few years.  But come through it I did, with the help and grace of God.  The lessons I have learned, the people I have come to know and love, and the opportunities I have been given this past year have just overwhelmed me to the point that I know there is more out there waiting if I just step out in faith to find it.

Looking out on the road choices ahead I do see the obstacles standing boldly there trying to convince me that there is no going forward for me.  I've overcome a lot of obstacles and challenges in my life but today these particular obstacles seem to loom up taller and stronger than any I have faced before.  Maybe they are so big that they are blocking my view of what is down those roads waiting for me to choose.  I remember days past when I would simply pick a road and rush ahead to see what was there, almost without even considering what might be down the other road, or what the consequences of my choice might be.  I also remember more recently being timid and afraid to make the choice and letting the road choose me, again not looking at the possible consequences.  But this year has been a mixture of both options I believe.  I've made many strong choices.  I've also had choices made for me that I would not have picked, as well as those that I was very excited about.  This time, as I sit here reflecting on past choices and past forks in the roads I've traveled, I think of where I would like to go and what I would like to be doing next year.  

Friends, I am taking some time this time to think it through.  I am no longer rushing into this path or that path.  Neither am I sitting back and allowing the path to choose me.  If you don't see me for awhile during this decision-making process, don't fret.  I'm still here and I definitely plan on keeping you posted on my progress.  I love you all more than you know.

The Road Not Taken, by Robert Frost 

Monday, September 19, 2011

30 Things About My Invisible Illness You May Not Know

The following post is something the Invisible Illness Websites asks people to do if they want to.  I didn't do it last year but decided this year was a good time. I think my answers are better this year than they would have been last year.

1. The illness I live with is:  Atrial fibrillation, arthritis, mild depression, PTSD, panic disorder, obesity
2. I was diagnosed with it in the year:  The atrial fibrillation was diagnosed in May 1994.  The arthritis  was diagnosed in 2001.  The mental health issues were diagnosed in 2007.  I became officially disabled in 2007.
3. But I had symptoms since:  I've had symptoms of the atrial fibrillation since 1990, the arthritis for years before it was diagnosed, the mental issues I've had most of my life.
4. The biggest adjustment I’ve had to make is:  Loss of my independence.  I gave up my car when I was at my sickest and now that I feel better, I still have no car.  I need assistance with household chores at times such as a full house cleaning once a month.  My mobility has drastically changed and even though I can walk, I use a cane and can only walk or stand for a very short time period.  I need to use the motorized carts if I go shopping.  And I own my own wheelchair which I am thankful for but I have not fully accepted.
5. Most people assume:  That I am not as sick as I claim to be and that I am faking most of the time.  At least the ones I know from before I got sick and at the time I got sick.  The ones I have met since my diagnoses have been much more accepting.
6. The hardest part about mornings are:  Mornings are actually my best time IF I have had enough sleep the night before and IF it isn't one of those days when every inch of my body aches.  I had both knees replaced so the stiffness problem for me grows worse over the course of the day.  Nights are worse for stiffness for me.
7. My favorite medical TV show is:  HOUSE
8. A gadget I couldn’t live without is:  My computer
9. The hardest part about nights are:  That I can't sleep without taking sleep aids and sometimes they don't even work.  I am a natural night owl so I have always stayed up late anyway, but without the sleep aids I would not sleep til 5 or 6 am and then have to sleep most of the day.  I want to participate in life so I have to get some good sleep.
10. Each day I take:  9 pills regularly plus either extra strength Tylenol or Vicodin for pain as needed.
11. Regarding alternative treatments I: am not interested in alternative treatments at this time.  I don't trust them.
12. If I had to choose between an invisible illness or visible I would choose: I think I would choose the invisible because I have the visible ones as well and I don't like the stares I get or the snide comments you can hear as you pass by some ignorant people.
13. Regarding working and career:  I enjoyed some of my jobs I've had but I've always had difficulty on jobs until the last two jobs I had.  I always wanted my career to be full time wife and mom, but that didn't always work.  After I was divorced I had to support myself so working became a hugely stressful part of my life, adding to the stress that contributed to the atrial fibrillation.  I worked from home for 15 months after being disabled but the stress was still too much.  Not having to work leaves me a lot less income for sure, but it also reduced the stress levels immensely.  I've learned how to be content with what I have and just not want so much I don't need.
14. People would be surprised to know:  Those people who see me as faking would be surprised to know how limited my activities have really become.  Those who do know I am sick would be surprised to know that there are more things that I can do than even I thought possible and with assistance from friends and family I could do even more.
15. The hardest thing to accept about my new reality has been: That I lost friends that I thought were real friends.  When I was at my sickest and needed those friends, they had turned their backs on me.  It's been over 4 years and I still never hear from any of them.
16. Something I never thought I could do with my illness that I did was: Go on vacation this past August!  It was difficult and not having done this in my condition before, or even healthy, I was thoroughly unprepared for a lot of things.  But I learned from that and if I get to go somewhere again, I will know more about what to do ahead of time to make the trip go more smoothly.
17. The commercials about my illness:I don't watch TV and don't see many commercials.  But the one that gets me is the "Hoveround" and the person sitting on the edge of the Grand Canyon.  I've never been to the Grand Canyon, but after the trip I just went on with just a regular wheelchair, I can only imagine the difficulties of getting that scooter up there.
18. Something I really miss doing since I was diagnosed is:Being active in my church and going out with my friends from church, along with just having my friends there to talk to or play games with like we used to.  It is like I suddenly became some kind of freak that they don't want to look at.
19. It was really hard to have to give up:  My car.  I want another car but cannot afford to buy myself one.  I also am not sure I could afford the insurance.
20. A new hobby I have taken up since my diagnosis is: It's not a hobby actually, but I have become involved in an online support group for people who have become victims of romance scammers.  It is a very rewarding thing that I am actually able to do at any time of any day.
21. If I could have one day of feeling normal again I would:That would require also having a car, but if I could feel normal for one day I would get in my car, take my fishing equipment with me, my camera, and set out on a road trip for just one day on back roads so I can see the landscape and nature.  Now this is something I can do on any day if I had assistance but getting that is not easy.
22. My illness has taught me: I've learned who my real friends are and they are wonderful people!  I've learned that I am still a capable person and that I can do just about anything I ever could do before but I just need some help doing it.  I've learned that getting help is not easy.
23. Want to know a secret? One thing people say that gets under my skin is: One of two--"You can do better than that." or "Get over it!" (depression issues).  Another one would have to be when they say they will get together soon and take me somewhere fun but then never do.  Sorry that's 3 instead of 1.
24. But I love it when people: Follow through on their promises, offer assistance, ask me what they can do for me or if I need anything.  I would love to have a friend who enjoyed the outdoor activities I enjoy and had free time to take me so we could have some fun together.
25. My favorite motto, scripture, quote that gets me through tough times is: It can be different ones at different times. I don't think there is any specific one.
26. When someone is diagnosed I’d like to tell them: If you don't like or trust your doctor, keep looking until you find one that is good for you.  They all have different styles.  Don't just settle for the first one, unless he/she is great!
27. Something that has surprised me about living with an illness is: How people you have known for years and been close to and done things with regulary can just walk away when you need them.  The same thing for a church and its pastors and staff.  They are the ones who are supposed to be there for you especially when you are part of their membership.  They should not abandon you when you are sick.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me a meal, cleaned my house, ran errands for me...take your pick.
29. I’m involved with Invisible Illness Week because: I've seen it on Facebook for the past couple years and I like the message presented.
30. The fact that you read this list makes me feel: Either you are curious about what I wrote or you really care.  Either one, I am glad you are reading it because maybe it will help you understand the next person who comes along in your life and has an invisible illness. 

Thursday, September 15, 2011

To be happy...

I was talking to some friends today and somehow the subject of my New Year's "Resolution" came up.  I realized that this is September already, and already half way through the month!  It will soon be another New Year coming around with another resolution to make or break.  But what really got my attention was that, so far, this year I have done my very best to keep my resolution I made back at the end of 2010.  

My resolution then was: "To be as happy, healthy, and strong as I can be physically, mentally, and spiritually whether I am with someone special or alone."

Somehow, with getting older and having health issues like I have had the past few years, I just wasn't into making the same old type of resolutions people make such as to lose weight or to change jobs, or move, or whatever specific, easily breakable resolution they might make.  The year 2010 had been a year of exhaustive changes, some good and some not so good, and I just wanted to see 2011 be the best it could possibly be but without all the pressure we usually put on ourselves.

In May, 2010, I had my first knee replacement.  A few months later I also decided, without giving it much thought or prayer, to join online dating sites and give myself a chance to maybe find someone who might see me for the real person on the inside and not have an issue with the "house" I live in that is this body.  What I got was a Nigerian romance scammer instead.  It was a total shock to even realize that this kind of thing was going on over the internet.  It was even more of a shock that so-called human beings without consciences could actually do such horrible things to other human beings.  But every cloud, they say, has a silver lining.  I say that the bad things in our lives often are stepping stones to better things if we have faith enough to trust and wait on God.

As a result of meeting this scammer, I did some research and found some websites dedicated to reporting the scammers, and educating the public on how to be safe online and protect themselves from online dating scams.  One such site included a chat room which is something I was very much interested in.  They also have a very active email group, but I wanted more real time conversation with other people who knew what this romance scam stuff was all about.  I am not one who really likes dealing with email in the first place and I felt more comfortable talking to a group of people who had been through this and knew how to help me deal with the emotions involved.  In that process I found some of the best friends I have ever had in my entire life.  Like I said, sometimes the bad things are stepping stones to better things.
After ten months in the chat room, in mid-July, the owner of the email group and chat room decided to pull the plug on the chat room for whatever reasons.  This left those of us who really loved being together as a sort of online family out in the cold.  We felt like passengers on a sinking ship with no land in sight.  At that point, we banned together and came up with a lifeboat solution, temporary as it was at the time.  We got together on Yahoo Messenger in a conference chat while we decided what we could do.  A plan formed and within an hour we had a temporary new chat room where we could at least stop and breathe awhile before deciding what to do next.  I cannot describe the way we all felt that night.  It was as though we had been scammed by the one who had rescued us in the first place.  We felt lost.  We felt betrayed.  Mostly we felt hurt and scared about what would happen to our family.
Three weeks later we had a permanent home.  Thanks to the generosity of one of our members, we had both a domain (6 in fact that all point to the main URL) and a chat software just like we had in the previous location.  Thanks to another member we had graphics that included beautiful background and logo.  Coding was in place.  Now it has been two months since we began this new journey and we have grown to include other ventures as well as the chat room.  We have brought back together 30 of our regular chatters and we are officially open for business to help anyone who comes along who has been or is being scammed by a romance scammer.  We are there to help friends and family members who are trying to get loved ones to break free from the scammer's hold on them.  We are there to do what we were doing before we lost our first home.  We feel maybe this was what God had planned all along.  (For anyone who may be in need of this help, please feel free to visit Scams Of The Heart .)
For me, what did all this mean?  This chat room, the first one and the one we have now, have been a lifeline to me in many ways.  For me it was first a place to heal from the emotional upheaval of the scam.  Secondly it became a place where I made some really wonderful friends.  But it also became something I have wanted all of my adult life.  It became a mission for me.  As a Christian I always wanted to have some kind of way to serve God and did my best in the little ways I could while I was raising a family.  Now that I am disabled and limited in what I am able to do, knowing I found somewhere to serve online is amazing to me.  The night the first chat room was closed down I felt like I had lost everything I was working for in life.  I felt like I had lost my chance to do something with a real purpose where I could make a difference in someone's life.  Getting that chance back again gave more meaning to my life than I could imagine.  
Today when my friends and I discussed whatever it was that lead up to talking about this resolution I had made, got me thinking deeply of how far I had come this year since I made the resolution.  You can read my other blogs for more details of things that have happened this year already.  But I can safely say that I have actually lived out this resolution to the best of my abilities and I have been as happy, healthy, and strong as I could possibly be physically, mentally, and spiritually so far this year.  I've made wonderful friends.  No that special person and I have not found each other, yet.  Maybe it's not in God's plans for me, but I am still very hopeful.  This year, even with the few low points, has been a tremendous year for me.  And there are still three more months left before another resolution will need to be made. 

Who knows?  Maybe I will just extend this year's resolution for another year!

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.