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Wednesday, September 26, 2012

I'm Afraid

Yesterday, I had several errands to run.  I had to pick one of my sons up from school, and then I had to do a few run of the mill errands.  I was in the car for about two hours, and luckily for me, my boys are able to do minor grocery shopping.  So, I sat in the car while they ran into a couple of stores and pumped gas for me.  By the time we got home, I could barely move!  My wonderful boys helped me out of the car and up the back steps.  I was in tears by the time I got in the back door.

My youngest son, Jack, took my shoes and socks off for me, and then my husband had to come in the bedroom and basically undress me and change my clothes for me.  Talk about embarrassing!  I know they love me, and they don't mind doing these things, but who wants to admit that they can't take their own shoes and socks off, or change their own clothes?  I made it to my recliner and just sat there and sobbed.

This morning, every inch of my body hurts.  I can barely move, and I know that today is going to consist of trying to recover from yesterday.  I miss the days when going out and running errands was just that!  I hate having to have a day to prepare myself for things like this, and then another couple of days to get over it.  I am angry with my conditions and with my body.  I feel like I am being betrayed by someone who has always been there for me.

As you know, my husband has a progressive neurological condition which has confined him to a wheelchair.  He is no longer able to drive, although he is a wonder around the house.  I have handled all of the "running" since he became ill.  It hasn't always been easy, but I have always been able to do what had to be done. I accepted that it was my role in the household.  Even though I usually hate doing it, I knew that this was the main thing that I did to contribute to the household.  I almost feel like I'm losing a part of my identity.

Pain has been my constant companion for many years now.  I go to bed with it at night and I wake up with it in the morning.  However, I've always been able to keep it at bay a certain amount of the time.  But now, the amount of pain I am experiencing is getting much worse.  It is the type of pain that makes you catch your breath and wonder how you are going to make it until the next minute.  How does a person keep going with pain this severe?  How do you continue to have a semblance of a normal life?  How do you keep from feeling like a burden to the people you love?  These are questions that I just don't have the answers to right now.

Dale and I aren't getting any younger.  Our children are starting to leave the nest, and in just a few years, it's just going to be the two of us.  I am terrified about our future.  What will happen to us if both of us are no longer able to function in the real world.  We aren't wealthy people and we can't afford to hire people to cook, clean and run errands for us.  Will our only choice be to move into a nursing home while we are still relatively young?  This just isn't the future I had pictured.

I still have hope that someone somewhere will find a way to treat chronic pain.  I still have hope that at some point, I will start to get better.  I still have hope that this is a temporary setback and I will start to feel better soon.  But, it doesn't take away the fear that I am experiencing right now.   I don't want to continue living like this and I don't know how to stop the fear.  It's not an easy life, but I'm not giving up.  I am going to keep fighting this until I don't have to fight it anymore.

Monday, September 24, 2012

The Power of Prayer

I am a firm believer in the power of prayer.  Now, before you stop reading, this isn't going to be a treatise on the power of religion.  I am not here to preach to anyone, anymore than I want someone to preach to me.  I am simply talking about my personal experience with prayer.  I also believe that prayer can take many different forms.  Some of us pray to God, some simply meditate.  I think that the effect is the same, in the long run.

As most of you know, I was born with a birth defect, requiring brain surgery at the tender age of six weeks.  My parents were actually told not to get attached to me because I would most likely die from the surgery.  Well, there was an army of people praying for me.  Not only did I survive the surgery, I was the first baby to do so without being severely mentally handicapped.  Now, the surgery is a pretty basic one.

Because of the type of defect that I had, a bone graft was taken out of my forehead.  It is a fairly small area, but for years, it caused horrible headaches.  Sometimes, the area would look caved in and it would be very tender to the touch.  At other times, it would bulge out, and those would be the times that I would develop the headaches.

My mom took me to several doctors, all of whom told us that there was nothing they could do about it.  It was just something that I was going to have to learn to live with.  Now, I was raised in the Episcopal church, which is very similar to the Roman Catholic church.  Our services are not loud and boisterous like many of the more fundamental faiths.  We do, however, share something with the more evangelical Christians.  We believe that God is the Great Physician and has the ability to heal us.

When I was around 15 years old, my grandmother announced that she was going to take me to an Episcopal healing service.  At that point, the only healing services I had ever seen were the ones on TV, where people were whooping and hollering, and people seemed to get knocked over a lot.  I told them I wasn't going, but my Grandmother could be a very persuasive person (meaning she didn't take no for an answer...EVER!), and I soon found myself sitting in a pew at the church.

I have to tell you that I was scared to death!  At that point in my life, I was very quiet and shy, and I didn't like being the center of attention.  I just knew that they were going to drag me to the front of the church, yell a bunch of things at me, and then knock me over.  But, as the service progressed, it was a very normal church service, and I became a little more comfortable with the whole thing.  Soon, the priest asked that anyone needing healing come forward to the altar.

"Here it comes," I thought to myself.  I tried to scooch down the pew, but my grandmother got hold of my arm, and dragged me to the altar.  Everyone knelt down, and the priest would quietly walk up to them and ask what they needed healing for.  I couldn't hear what anyone was saying, so it boosted my confidence a little bit.  When he got to me, he asked the same question, and I explained about the place on my forehead.

The priest laid his hands on my head and prayed, then he put some holy oil on the spot.  I went back to my pew, thinking it wasn't so bad.  I also thought that the only thing that would happen was that I would probably break out from the oil.  I hadn't been back in my seat long before I started to feel a burning sensation in my forehead.  It was centered right inside my bump, and it really started to hurt.  The pain got more and more intense, and I got really scared!  I told my grandmother, and she took me to the bathroom to wash off the oil, thinking it might be an allergic reaction.  By the time we got to the the bathroom, the pain had stopped.  When I looked in the mirror, the very prominent bump in the middle of my forehead was completely gone!

That was 35 years ago, and the bump has never come back.  There is a slight indentation where it used to be, but it has never swollen up again, and it has never caused me pain since that day.  Because of this experience, I quickly became a firm believer in the power of prayer.  Now, I don't think that every prayer for healing results in something dramatic like what happened with me.  I have prayed for my pain to be taken away, and it's still here.  I don't think that God caused my pain, but I do believe that it serves a purpose.

Because of my pain, I have made wonderful friends from around the world who understand what I live with everyday.  Because of my pain, I started writing again, and I love being able to do something creative.  Because of my pain, I am hopefully able to educate others about what it's like to live with a chronic, invisible illness.  And, because I have experienced God's healing love in my own life, I have hope that one day, my pain will be taken away as well.

Friday, September 21, 2012

How do I Explain?

Living with chronic pain is never easy; explaining it to someone who doesn't live with it can be even harder.  I have had people ask me what it feels like, or how I cope with it.  A lot of the time, I just look at the person like I have lost my mind.  Pain is such a subjective thing, and telling someone else what it feels like is almost impossible, especially if the other person doesn't have a frame of reference from which to work.

We have all had a healthcare professional ask us to rank our pain from 1-10, and to describe what the pain feels like.  I always find this so difficult.  What may be a five or six for me, may be a three or a ten for the other person.  My pain is mine, and it isn't easy to have someone else relate to that perception.  I once told a nurse that my pain was an eight.  She actually looked at me and told me that it couldn't be that bad because I wasn't in tears!  I looked her in the eye and told her that when you live with intense pain, day in and day out, it takes about an eleven to bring me to tears these days.  I could tell she wasn't buying what I was saying, but at that point, I didn't care anymore.

Ranking the pain isn't that hard for me anymore.  I'm very in tune with my body, and I can tell when the pain changes even slightly.  I function well at a five or six, but an eight starts to cause me to shut down.  And, ten isn't high enough when the pain is really severe.  Most people never experience a pain level of ten, so they can't grasp how those of us with chronic pain keep going.  I believe that a lot of people don't take us seriously because they don't have a field of reference for this type of pain.

Describing my pain is much harder for me.  How do you tell someone what agony feels like?  A dull ache?  Well, a dull ache sounds like a good thing most days!  I have tried telling people that it feels like someone is taking a sledge hammer and slamming it into my back repeatedly, to which they respond, "Is that stabbing, burning, throbbing, or a dull ache?".  Usually, I simply tell them yes, and then I am asked which one I'm saying yes to.  The answer is simple....I am saying yes to all of the above!

Honestly, I'm glad that other people don't understand what living with chronic pain is like.  I've often said that I wouldn't wish this condition on my worst enemy, and I mean it.  That being said, I do wish that I could educate other people about what it's like to live with a chronic pain condition.  I want people to understand that the condition is debilitating, but most of us force ourselves to keep going.  It's the only way we can have a semblance of a normal life.  I want people to understand how strong people living with chronic pain are.  I want them to know that we have learned to function despite the pain.

Everyone living with chronic pain wants one thing....a cure!  We don't want to live this way.  I would give just about anything to still be working and living a normal life.  But, until the day comes that they can cure chronic pain, I want understanding.  I want people to understand that we didn't choose to live this way.  We aren't exaggerating the amount of pain that we experience on a daily basis.  We aren't lazy, and we aren't looking for the "easy" life of disability.  We don't want people to feel sorry for us, either.  We simply want people to understand that this is the life we were dealt, and we are doing the very best that we can.

Thursday, September 20, 2012

Dealing with Frustration

Living with chronic pain brings on a whole lot of frustration.  Having to schedule your life around pain is frustrating; not knowing from day to day if you can do what you need to do is frustrating; having to depend on others for help with simple things is frustrating.  I know that, for me, all of these little frustrations can add up very quickly and turn into something else, if I allow that to happen.

I remember the days when I didn't even think about running errands!  I remember the days when going to the mall sounded like fun!  Now, going to the mall is like being asked to run the gauntlet, and I avoid it at all costs.  I have found a way to deal with that frustration, however.  Now, I do almost all of my shopping on line!  I can spend as much time browsing as I want and I can compare prices easily.  Not only that, I can do it all from the comfort of my living room, wearing my pajamas!  Can't get much better than that!

I really get frustrated with not being able to make plans in advance.  I know that people get frustrated with me because of this, but I hate having to cancel plans at the last minute.  I know that I have lost friends because of this.  I tell myself that if they can't adjust to being friends with a person with a disability, then they weren't really friends with me to begin with.  But knowing this doesn't really take away the sting.  Luckily, I have made wonderful friends through an online support group.  They are always there for me, and I am always there for them.  Knowing that I have someone I can depend on makes this far less frustrating for me!

Right now, I am dealing with feeling frustrated with my own physical limitations.  Yesterday, I had to take my son to get a new pair of glasses.  In order to get the glasses on the same day, we had to go to an optometrist in another town.  It's only about a 30 mile drive, but I was worn out by the time we got there.  I spent about 45 minutes on my feet while we looked for the perfect pair of frames.

 It takes about an hour and a half to make the glasses, so we had some time to kill.  We went to Mickey D's drive through for lunch, and then I decided to run to Walgreens and get my annual flu shot.  Just walking from the parking lot to the back of the store nearly did me in!  By the time the glasses were ready, and it was time to drive home, I was exhausted and in horrible pain.  Luckily, Matt has his permit and was able to drive home.  Today, I am really suffering from the pain, and I am completely worn out.  I have a doctor's appointment this afternoon, and I just don't know where the energy to get there is going to come from.  Needless to say, I am really feeling frustrated about this at the moment!

Life is full frustration, whether we live with chronic pain or not.  It's how you handle those frustrations that really matter.  Quite often, we can find ways to deal with this.  Sometimes it requires thinking outside the box, but there are different ways to do some of the things we want to do.  And then, there are other times when there really isn't anything we can do about those frustrations that face us.  It's important that we realize that beating ourselves up over it isn't going to solve the problem, or make it go away.  We have to face what's going on, and realize that it isn't the end of the world.

Friday, September 14, 2012

Find a New Dream

One of the worst parts about having a chronic illness of any kind is that it can steal our dreams right out from under us.  My dream was always to be a singer and actress.  I have been performing most of my life.  Nothing gave me as much joy as being on a stage, singing or acting.  In fact, I started out in college as a theater arts and voice major.  That didn't pan out, and I had to accept the fact that I wasn't going to be world famous, but I didn't let that stop me from performing.  I did community theater for years and loved every minute of it.  I also sang at weddings and funerals, and performed Karaoke.  I loved every minute of it!

Marriage and babies made it more difficult to perform as much as I wanted to, but I still found times to indulge my passions when I could.  I always thought that when my boys got older, I would be able to get involved with community theater again, and continue to perform when possible.  It was something that I looked forward to for years.  But then, my back problems began, and I developed fibromyalgia, and all of my dreams of performing again seemed to disappear like a wisp of smoke.

It is impossible to commit to doing a play when you don't know from day to day if you will be able to get out of the bed, much less spend 2 or more hours on your feet rehearsing.  Even singing became difficult.  I still did it when I could, but it would make my back throb when I was finished, and I quit doing that publicly as well.  I squared my shoulders, and told myself that the creative part of my life was over and that I would just have to accept it and move on.  However, letting go of a dream that you are so passionate about is a very depressing thing, and I went through a lot of difficulty accepting the fact that I no longer had that creative outlet.

The energy that I once expended on the stage was now poured into fighting my illness.  As you all know, there is nothing more exhausting than fighting an enemy that you really cannot beat.  Nothing I did would make the fibro or back problems go away.  So, I would conserve what energy I had and use it when I needed it.  I didn't have the energy reserves to even work in a technical position in theater.  You can't commit to doing theatrical makeup for a play when you don't know if you can get out of the bed.  Letting go of my dream felt like a death in the family. I buried something that I truly loved.

Stepping away from performing didn't kill my need to do something creative.  I needed an outlet of some sort, but for a very long time, had no idea how to feed this part of my soul. Painting or drawing wasn't an option because I can't draw a straight line with a ruler!  Crafting didn't interest me in the least.  Due to the brain surgery that I had as a baby, I have very poor hand-eye coordination.  That sort of prohibits making anything that anyone wants to look at!

In my search for a creative outlet, I reminded myself that I had always loved to write.  When I was in my teens, I decided at one point that I was going to write the Great American Novel.  My parents gave me an old typewriter, circa 1940, and I would sit in my room, pounding out novels full of teen angst, and schlock historical romances.  I never finished any of these, because eventually, I would read them and realize how truly bad they really were!

Eventually, I decided to try my hand at writing a blog.  Back when I was in school, I would always get excited when the teachers would assign us to write an essay.  While the other kids in the class were moaning and groaning, I was grabbing my pen and paper and getting started right away.  I decided that writing a blog couldn't be that much different from writing an essay, so I started looking into it.  Once I felt like I knew a little bit about it, I took a deep breath and dove in head first.

Writing and publishing that first post was very scary, but it was thrilling at the same time.  It's never easy to put yourself out there, but writing filled that creative void in my life.  I'm always nervous when I hit that send button, because you never know if people will relate to what you have written, or if they will even like it.  But it has been so worth it!  I can honestly say that I have found my joy again, and it is such a blessing.

Living with a chronic illness steals so much from us.  The things we used to do with ease are often so very difficult now.  It takes away our ability to live life the way we used to live it.  And, quite often, it robs us of the very things that brought us so much happiness.  I have come to believe that it is essential to our quality of life to find something else to bring us joy.  Writing has been the thing to bring that joy back to my life, and I love doing it.  What is something that could bring joy back to your life?   Perhaps you life to crochet or knit?  Even if you can only do it for a few minutes at a time, try picking it up again.  Once you start doing something that makes you truly happy, I think you will find, as I have, that your life only gets better.

Monday, September 10, 2012

Sometimes, the Water IS Thicker!

We are all familiar with the saying "Blood is thicker than water".  And, we all know this to mean that the family we are born with is more important than all the other people in our lives.  For a long time, I bought into this idea.  Even when I was a little girl, I believed that my family was the most important family on earth.  I believed that it was my job, up to a certain point, to take care of my little sister.  I'm sure those of you with siblings have experienced this before....I could treat my little sister any way that I wanted to and she had to put up with it.  But nobody else better think that they could treat her badly, or they had to deal with me!

As the years have gone by, I have lost the bond that I once had with my little sister.  We really don't have anything in common, and we don't really associate with one another.  In fact, my mother says that she finally had to accept the fact that she somehow managed to raise two only children under the same roof.  I am sure that my sister would disagree with me, but nothing I have ever done has been good enough for her.  I never had the right job; I never had nice enough things; I didn't marry the right kind of person, and my children were never perfect.

For many years, I have tried to force a relationship to be there, but it hasn't worked.  I used to call my sister a couple of times a month just to talk.  Pretty soon, however, I started to realize that she never picked up the phone to call me.  Eventually, I quit calling, in the hopes that she would notice and actually call me.  That was four or five years ago, and I'm still waiting for her to pick up that phone and call me.

For a very long time, I felt so broken hearted that I didn't have a relationship with my sister.  I still think about the fact that when we lose our mother, it's just the two of us.  I think we are both going to regret not working on a relationship.  But, as time has gone by, I have come to a grudging acceptance that this is my reality with my sister.

Now, to the part where the water can be thicker than the blood.  I have to give a lot of the credit to Facebook....yes, Facebook!  When I first came into the 21st century, thanks to my lovely boys, I started looking for support groups for fibromyalgia and chronic pain.  Lucky for me, I found some wonderful support groups.  Within these groups, I have developed friendships that are closer than my actual relationship with my sister.  These wonderful people have become my family.

I would never try to sit down with my real, blood sister and talk about my disabilities.  On the few times that I have done this, I have been told that if I would start walking miles and miles a day, and drinking gallons of water a day, all of my physical problems would go away.  At first, I tried to explain that my doctor's understood my problems and had told me that this was not the answer to my problems.  Well, these protestations of mine fell on deaf ears.

But with my Facebook family, I can share everything, and I feel safe.  I can tell them that my world is falling apart, and I feel loved.  I can cry that I don't know how I am going to go on, and I am encouraged.  I now have many sisters, and brothers, and I know that I am respected, and that someone thinks I am important.  These wonderful people have shown me that sometimes, water really is thicker than blood.

Tuesday, September 4, 2012

A Confession

A little while back, I wrote a piece about learning to accept the condition of chronic pain.  I still believe that it is easier to learn to live with this condition when we are able to accept it and quit fighting against it.  So what is my confession?  I am learning that this is far easier said than done.

To be honest, I really did believe that I had come to terms with what I am living with.  But the truth is, I am really pissed off about the whole thing, and I am trying really hard to come to terms with the anger I'm feeling about this devastating condition.  I don't like the fact that I feel the way I do.  I mean, what is the point in being angry with something you have no control over and can't get rid of by wishing it away?  This anger takes a lot of energy, and the stress that it brings on can and does make the pain worse.  But, this is the way I feel and I don't know how to get rid of these feelings.

Prior to my knee surgery, I really think that I had come to a place of peace about my condition.  I wasn't happy about it, but I knew that I couldn't make it go away just because I wanted it to go away.  I was in a good place as far as my treatment was concerned, and while it wasn't always easy, I was able to function. Since my surgery, I have lost a lot of my ability.  And I am just so angry about the whole thing!

I used to hate having to go out and do all the errand running, bill paying, shopping, child chauffeuring, etc., for our family.  I often felt like I never got a break, and there were times when I just didn't feel like I could keep it up.  Now, I would give anything to have that functioning back.  I really can't go anywhere by myself right now.  We only have three steps going out my back door, but I have to make sure I have someone with me now because getting up and down those three little steps is agonizingly painful.

I can't sleep in my bed anymore and I'm pretty much living in my recliner.  Lying down makes everything hurt and finding a position that's comfortable is a complete impossibility.  Every once in awhile, I will decide that I'm bound to be able to lie down for at least a little bit.  But within 20 minutes, I'm back to the recliner, and in tears from the pain.  It just isn't fair!

Because the only place that I can get comfortable is in the recliner, I am in the living room pretty much 24/7.  It's driving me crazy!  I'm one of those people who has to have a certain amount of solitude in her life.  I have to take a step away from everything and just have time alone.  Now, I'm never, ever alone, and I don't know how much longer I can take it.  I keep telling my husband that I want to move the bed up against the wall in the bedroom and move the recliner in there, but apparently, this just isn't going to happen.

I'm not proud of the way I'm feeling right now, but I'm not sure how to get rid of these feelings.  I'm normally not an angry person, but I'm walking around with a knot in the pit of my stomach all the time lately.  I hate my body right now.  I feel like I'm trapped in something that doesn't work anymore and there is just no way out. I actually am starting to resent people who have never experienced chronic pain!  This isn't me, but I'm afraid it's who I am becoming.

There have been times when my kids would look at me and tell me that something I had done wasn't fair, and at times, I would tell them that sometimes, life isn't fair, and you have to learn to deal with those times.  Well, right now, I want to climb to the top of the tallest building and start screaming that what I am going through isn't fair!  It isn't fair that I am in pain all the time!  It isn't fair that I can't sleep more than 3-4 hours a night!  It isn't fair that I can't lie down in my bed like a normal person!  It just isn't fair!  But then, in the back of my mind, I hear my own voice telling me that sometimes, life isn't fair.