Friday, September 30, 2011

It's Past 4:30 AM...Again...

Just like the title of this post says, I am up most of the night again.  It's getting old.  I took my sleep meds, and yes I said that in plural because now I have two different medications to help me sleep.  Sometimes one works and sometimes both don't work at all.  I think this is one of those latter times.

I've always loved sleep.  At the same time, I've always been a night owl by preference but not always by being allowed to be.  When I was young I worked night shifts.  When I had kids my night work ended and I slept nights, out of sheer exhaustion I believe.  Mornings have never been my favorite time of day unless it was to get up early to go spend the day fishing.  Now that I am able to sleep whenever I choose to, I can't sleep at all most nights, although I do have good nights and sometimes good weeks where I can sleep 10-12 hours at a stretch.  But mostly it is a struggle just to fall asleep at all.  

When the night grows silent, and I am alone, ready to wind down, no matter how tired I might feel, or how much I yawn or struggle to keep my eyes open, my mind just won't shut up.  I've tried the "tricks" of making my plans for the next day earlier so I don't think about it when trying to sleep, or of going over the events of the day before I plan to sleep.  Nothing seems to work.  The mind overrides the medications and the tricks, and another night passes until nearly dawn before I can sleep.

It doesn't help that I sleep in my recliner and have been for the past almost three years.  It doesn't help using music that is relaxing or soothing, or using silence.  Silence is worse because at least the music helps me focus my mind a bit more instead of allowing it to roam through all the various thoughts that overwhelm me at night.  The only thing with the music is that I love the music so much it often becomes something I participate with instead of just letting it become a lullaby.  For the music to work it has to be almost the same music every night so that it is more just a sound I am used to, like rain on the roof.  (Tonight it is walnuts crashing onto the roof from the trees surrounding the house.  Not very soothing.)  

It also doesn't help that I am going through some changes in my life.  Even though the changes are for the good, I think, these changes have my mind busier than ever, making it even more difficult to settle down into a gentle rhythm allowing for restful sleep.  My mind is all about planning and creating and next steps.  At the same time my mind is about obstacles in my path and how to overcome them so that maybe I can make some of my dreams come true.  It's been a very long time since I have been able to even think in such positive terms about my life and now I feel the glow of the excitement of the challenges ahead.  So much has happened the past year and a half, some bad things, but mostly some very good things, as well as some very rough hills and mountains to climb.  

There are questions also.  Dreams I don't think I have any control over, and dreams that I have at least some control over crowd my head every night.  When the day ends, and my day usually ends anywhere between 1-3 a.m. by choice, the quietness seems to open doors to all the voices in my head that try to tell me I can't succeed in making any good thing happen in my life.  All the negative voices try to whisper "You just aren't good enough" and I end up in a mental and emotional battle to confront those negative voices with positive ones along with prayer.  

Something special happened this past year that changed my outlook on those negative voices, however.  Without going into great detail, I met the first people who have ever really believed in me and have been a great support to me mentally and emotionally.  These people, I realized, actually saw me for who I really am instead of judging me by my outward appearance.  It's been a refreshing lesson for me and it has spurred me on to these goals and changes I have challenged myself with.  I've been treated most of my life like I was no good, or stupid, or whatever negative things people judge others with when they don't want to take the time to really get to know each other.  But this past year was different, and being told how smart they think I actually am has boosted my self esteem greatly, and given me courage to step out and try, and really believe in myself.  I know they believe in me and I've never known that kind of feeling before.

And it keeps me awake.  Not that these are the only reasons I can't sleep.  My sleep problems started after my divorce but because I was still working I slept out of sheer exhaustion.  Then as I got sicker and sicker and was still working, it seemed all I did was sleep and work.  I could barely function at all.  As medications were better regulated, and as I was declared disabled, even though I still worked part time from home, I started having sleep problems which have gradually grown worse as time has passed.  I don't know the solution.  But for now, it's after 5 a.m. and I think the medications are finally taking effect.  So I will say goodnight...or good morning, whichever you prefer.

Friday, September 16, 2011


Friendship means a lot of different things to people.  For instance with the internet and all the social networking sites like Facebook and MySpace, friendship seems to mean anything from strangers who play the same games as you do, to best friends from grade school, to co-workers, and everything in between.  For me friendship has a much deeper meaning.  I use Facebook, and many of my "friends" on there are family members and people I have met through chat room conversations in the past year. There are also those people on my friends list, as well as people who are not using Facebook but that I know in real, face-to-face life who, I hope will always be part of my life in one way or another.  ALL of my closest friends mean the world to me.

Tonight I just wanted to say that even though things we have to deal with from day to day may take our time away from each other, I know that those people I am closest to will always be special to me no matter what life brings.  Sometimes things happen in our lives that keep us so busy we lose touch for awhile.  At those times it might take some extra understanding to realize that we don't have to take the absences personally.   Sometimes these absences signal a need for extra prayer for our friends.  Other times it might be us who need the extra prayer and understanding because we are going through something and need to get off to ourselves to deal with it. 

It's often too easy to get offended and hurt when a friend needs time and space and "disappears" for awhile.  I am guilty of letting that feeling get to me sometimes, but then I remember that we all need that space now and then, especially if we have something we really need to do to meet life head on. We should not have to know what is going on with our friends at such times.  It's good to be able to let them know that we understand and are there for them if and when needed.  It's also good when we are going through difficult times to know our friends are there for us as well.  I know when I am dealing with the hard stuff in life I want to know my friends really care about me, but I also want to know that if I need time alone, they can respect that, go on with their lives, but keep me in their prayers, while letting me know now and again that they are still there for me.

Sometimes it is hard to tell our friends what is going on.  Other times we need to talk.  The same thing is true of our friends.  We all have our moments where silence is best and other moments when we can't say enough.  I just hope I can be the kind of friend that my friends need and want.  

For all my wonderful friends out there, if you are reading this, I just want to say that I hope you know you all mean the world to me.  And for those of you who are going through difficult times, if you need to talk, I am always here for you.  If you need to be left alone, I understand and send my prayers.  Life without friends is a miserable existence.  I am so glad you are all in my life.  I love you all.

Saturday, September 3, 2011

On Being Prepared and Thinking Ahead and Does Anyone Really Care?

One week home from my first vacation ever has left me thinking about the future and things I want to try to do.  For example, even going fishing the few times I went this season I realized that I was not thinking ahead or prepared, even for being a normal healthy woman who loves to fish.  It had been too many years since I had gone, and I had forgotten many things that I would have done to make things better.  Now I have to think ahead for even more things to help make my fishing experiences, or any outside activities better, as well as safer for me.  In my recent blog on my Coping With Disabilities blog I talked about the importance of calling ahead for everything, and checking out every little detail before making plans.  The vacation taught me that I still can do things I want to do, but it will take extra effort on my part, and on the parts of family and/or friends who might want to include me in things they are doing.  I am so blessed to have a daughter who wanted to include me in her vacation and who went the extra mile to make it happen.  On the other hand, I am still very disappointed in the people I thought were my friends who could not even be bothered with me to even want to stop at my house on their way to church and give me a ride so I could start attending church again.  Simple things!  From them all I got was excuses and false concerns about what kind of vehicle I would need to ride in since I had my knees replaced!  Totally craziness!  Getting my knees replaced did not change what kind of car I can ride in, and if they really were concerned about it, all they had to do was call and ask me!  I did enough calling and begging for a ride.
Something I have learned on this leg of the journey of my life is that it is not always how determined the disabled person is to get out and do things.  It also matters how much support she has from family and friends to help her get out and do things.  I can guarantee you that if it were not for my daughter, I might not have even gotten my knees replaced at all!  I might not have had anyone to get me to all the many necessary doctor appointments as well as to the hospital each time if it had not been for her.  If not for my daughter, I might not be out walking regularly at the park or at WalMart to make sure my strength returns.
I don't generally ask to be taken places to be able to do the fun things I would love to be doing.  I know it takes a little extra effort sometimes depending on what that activity involves.  But there are a lot of normal activities in this area that I can still do all on my own strength without help from anyone else other than I need to ride with someone else to get there.  I have a list of things I could do and would like to start doing again.  At least I would like to try.  Years ago before I got sick I was the one with the mini-van who would make sure other people had rides to church or to our group activities.  The tables turned and I became the one needing the ride and the ride never appears.  In fact, I've only been invited to join my friends once in the last four or five years since I got sick.  All I come up with as a logical reason is that I've done something wrong so that my friends don't consider me a friend anymore.  Either that, or they are afraid of confronting someone else's health issues and/or don't want to be bothered with finding out what they can do to keep this person included in the group.
Well all that aside now, I am left with the knowledge that if I want to get out and do anything the rest of my life, I have to depend on my daughter to help me because no one else seems to give a damn about whether I get to participate in life or not.  Either that or I have to somehow find new friends in the area who would want to take my challenges on and see what can happen.  For myself, I don't think I've ever felt so trapped in my life.  I still can do things.  This vacation proved it to me.  I could have done better had I planned ahead better.  But I learned through it and I know better how to plan for the bigger things, or even the not so big things like going fishing.  But there are other things too that I can still do.
I can still walk!  Short distances for sure, but I can walk.  Sometimes I need to use my cane.  Other times I don't need it at all.  At the store if I am pushing the cart, I can walk a bit further, but not much so I have to sit awhile and rest, or use one of the motorized carts, or take the wheelchair along.  Taking the wheelchair along for some activities is the hardest part of taking me anywhere and I don't need to take it that often.  In fact, on the vacation we only used the wheelchair twice outside of the cottage yard and that was for the Island Hopping Cruise, and only on the boat, not the islands, and the one time we tried to go fishing.  We really would not have needed the chair for the boat ride either but it was better to be safe than sorry so we took it. The rest of the time I walked using my cane, and rode in the golf carts just like everyone else.  It actually was very insulting when I was told that my church friends could not come pick me up to go to church on Sundays because they could not decide what kind of vehicle I would be able to ride in.  I mean, all anyone had to do when they learned I wanted to go back to church would have been simple.  Call me! 
I can still go to festivals and parades, believe it or not!  Thanks Mary Lou for taking me to the Peony Festival and Parade and driving 2 hours to get here!  Thanks Sara for taking me to the July 4th Parade!  You both made things so much nicer for me for my spring and summer.  And neither one of you had to take my wheelchair along, or push me around in it.  I walked, rested, walked, and rested.  Mary Lou had to help with some extra trips to and from the car for me, but that was about it.  And it was a hot 99F that day which took all the energy out of both of us!  But I was able to do it and enjoy it.  We even went out to eat!  My daughter takes me out to eat a lot.  Sometimes I pay and sometimes she pays.  But the point is, I can do these things.  I just need the smallest bit of help, like transportation and friends to spend the time with.
Some things I would like to try to do are to go bowling, and have someone teach me how to play golf.  Okay so how would I play golf?  I am guessing by riding in the golf cart from each location to the next, getting out and walking to where I have to hit the ball.  Only God knows what would happen with a beginner like me when I get lost in the trees or on the rough or in the sand or water hazards.  I think I might need a little help...and if I have to have someone hit the ball by proxy for me....well, I am not in any tournaments so does it matter?  It's just for fun, right?  I'd like to play pool again, if I can play somewhere not in a bar.  I still want to go on day trips just to see things and take photographs.  Those would require some planning ahead, but they are doable.  
So okay, I can't walk very far and I can't stand in lines and wait.  I have to rest a lot because of the heart rhythm.  Sometimes I need to take my wheelchair and sometimes someone might have to actually push the wheelchair if it is an area where I cannot maneuver myself.  But I am still very much the person I always was.  I used to be able to make my friends laugh, and some even said I was a "riot" to be with.  I got sick and everything changed, including losing all my friends except a very few.  I will never understand this if I had a million years to figure it out.  I am getting older, like all of us, but I am not too old to enjoy life and the people around me.  I am not too old to do things to help others, or give back to the world.  Now that I have had both my knees replaced and I don't have to use crutches just to get around my small apartment; now that I can get out of the house and do things like everyone else does, I would like to try doing that again.  I want to live this life God gave me.  But God made us to need each other.  People need people everyday!  And I need a little bit of help doing the things I need and want to do.  All this should not fall on my daughter to be doing by herself.  So if anyone has any suggestions, I would appreciate them.  Just remembered this too, that I even tried unsuccessfully to set up a game night at my place with some of my friends, but they were not even interested in doing that!  I am at a total loss at this point.  But being this young and looking ahead, I don't see a lot of light at the end of this tunnel.  At the same time, I am strong and a fighter, and I don't give up on anything easily.  Time will tell.  In the meantime, planning ahead, I have learned, is crucial for a successful extended outing.
Thanks for letting me vent about this.