Perspective on a Chronic Illness (It sucks)

I like to complain to my primary physician a lot.  She sees me every 6 weeks to help me manage my chronic illnesses and coordinate all the various specialists I see.

She also helps keep things in perspective.

That perspective is not always what I want to imagine it to be.

I was complaining about having great difficulty in planning anything.  At any given day, and indeed at any moment in that day, I do not know if I will have a flare from my arthritis will pop up.  I don’t know if I will suddenly for no reason just feel totally exhausted and need a nap.  I don’t know if I’ll get a horrible headache or a dizzy spell.  A side effect from one of my many medications could just decide to really bother kick it up a notch.  I’m a total crap shoot when it comes to making plans.

My doctor just looked at me and said “Well, you know you have a very serious illness.”

Oh yeah, I forgot that.

My doctor doesn't laugh, but she does have to keep reminding me....with a smile.
My doctor doesn’t laugh, but she does have to keep reminding me….with a smile.

Normal is out for me, for a very good reason. My doctor has to remind me,  I suffer from a very serious illness.  I just like to pretend that there is some other reason for all the things I’ve had to change about my life since becoming ill.  Perhaps a new medication will help?  Maybe if I could get more sleep?  If I could manage my pain better?  There is always this deal I am working in my head that will make my life normal again.

Then I am reminded, I have a serious illness.

My doctor, who has been my primary physician for over 20 years, tells me that after the first year, most chronically ill patients begin to find the little things in life are also important.  That much joy and happiness can be found in places other than Bora Bora.  I didn’t at first believe her words of experience. I was sure at first that doing what I used to do,  was the key to happiness. I think most people newly diagnosed with a chronic illness also feel this way. Did you play tennis for hours each day before… well tennis will make you happy again!  Loved horseback riding?  Sure, you can probably show jump horses again!  Hiking in the mountains, that 5 hour hike up the mountain, as soon as you can do that again, you’ll be happy!

It’s not that what  you could do before won’t make you happy.  It’s just that it won’t be easy, and you may need to modify it greatly.  It’s going to be impossible for it to make you as happy as it did before because now you have to plan more and perhaps do less.

I love to travel. Well, it’s better to say I love to be in new places and enjoy seeing new things. No one really loves the “travel” part!

Flying is no longer just annoying, it's almost impossible.
Flying is no longer just annoying, it’s almost impossible.

However, that travel part is now a far different thing than it used to be. A plane trip requires wheelchairs in the airport.  It’s not as much fun as you might imagine. Flying in those small seats people normal complain about is horrifyingly painful to many with a chronic illness. A recent plane trip I took was accomplished only by taking painkillers that were only for use “on the plane”. In other words they would knock you out if you took them at any other time.

The compression on my spine from sitting up straight, despite the use of pillows and even a special steroid shot, is enough to make me feel faint at times. I do want to travel more in the future, but I plan to travel far less than I did in the past.  Flying now requires pain medication that makes me feel nauseous and much planning.  It is not just annoying and bothersome, the complaints we all have about flying, it’s something to be endured if possible. It’s just not going to bring me as much happiness as it did in the past.

When I complained once I returned from the trip to my physician said again “Well you have a very serious illness.” 

I’m allowed to complain, but there is a reason flying is hard.  There is a reason planning things is hard.  There is a reason sleeping is difficult and even the simple chores of living are hard work.

I have a very serious illness.

Learning new things close to home, appreciating what is around me, that's tough to accept but what's required.
Learning new things close to home, appreciating what is around me, that’s tough to accept but what’s required.

Forgetting I have that illness is not the answer.

Adapting, following difficult and sometimes complex medical directions, and taking many drugs is not the answer either.  Rather is it not the answer I want which is “feeling like I used to feel”. No, all the new routine and medication is a way of managing my illness.  A day of feeling “better” doesn’t mean I am better.  I can’t get better, better being “normal”. It’s impossible.  It’s just that part of my brain wants to believe it is possible.

 

But, the fact is, as much as I like to pretend I don’t….

I have a very serious illness

Slowing down means looking longer.
Slowing down means looking longer.

Plane travel will hurt.  Side effect from medication that helps will bother me.  I will not be able to control when I have the energy to do things, no matter how much I want to do something.  This is not going away.  Things will get better as I manage this illness with the help of my doctors, but it will not be cured.

The perspective is fairly grim and often I just refuse to accept it!

That’s when I need a visit to my doctor to remind me. This is the reality of what you have to deal with, so let’s deal with this together. Just waiting for it to go away, so life can get back to normal, is not an option.

The media likes the happy stories.  There aren’t a lot of happy stories with chronic illness.  There are a lot of brave stories.  There are a lot of stories of compassion and friendship and how good people can be when something bad happens.  Those stories are rarely told.

It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.
It would be nice if there were clear signs of just how to deal with the anger of adjustment. Instead we make our own way.

There also aren’t many road maps for those of us with chronic illnesses.

We all have to make our own map for this seemingly much smaller world.  We have to begin to appreciate that all we are missing, maybe isn’t all there is to life.  It’s a world perhaps viewed from a sitting position rather than a rapid pace of seeing more and more and more.  It’s a world of reflection, of appreciation, and hard work to manage our illnesses.  It’s a world of friends that get it, and family that maintain it’s “fine” even though you know it always isn’t fine for them having to take on a new role of care giver.  (If you are lucky it’s mostly fine. But you understand it’s never 100% fine for anyone in the position of caregiver).

So, I thank my personal physician for reminding me ,because of the honest relationship we’ve developed over the years….

“You have a very serious illness.”

I don’t need an excuse for not doing things I want to do.  I don’t need an excuse for wanting to travel and being unable to do so.  I don’t need an excuse for a nap, or for having to break an appointment.  I have a very serious illness.  I just have to remember that!  It’s harder to do than you would imagine!

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5 thoughts on “Perspective on a Chronic Illness (It sucks)

  1. I think Doctors just say that to make sure that you ” understand ” what you have. However, I believe, once you reach a certain maturity and a level of knowledge about your illness, you know which are the things that you can do and the ones you cannot do.
    If a Doctor tells me that I won’t be able to do anymore a certain thing, my answer is always the same ” I will beat the odds. I’ve always done that “.

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    1. well and that is the way you have to deal with any chronic illness. The joke of the site is “We Aim to Complain” as most of the other blogs demand we be positive and upbeat all the time. We all know, there are times it’s difficult. I’m going to Europe and both my doctors (main ones) are “oh don’t do that”. I was “Find a way for me to fly there….” We’re working on medication to get me there. BUT….the thing with this site is it is a SAFE PLACE to complain. For those moments. When you kind of get it. I have a dear friend who still owns his mandolins. He was an extraordinary musician, played in public and with groups. He had a massive stroke, and lives in a wheelchair now. Half of his side is paralyzed. I also play the mandolin. I offered to help out financially at one time by purchasing some, and the family and my friend were “no one day I will play them again!” (I wanted a vintage one that is very rare and expensive). Now, that collection is his goal. It’s helping him cope. Will he ever play again? I don’t know. But I admire him for believing he will.

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      1. I think it is because ” Believe ” is all we have. Doctors don’t want you to go to Europe because they look at you as a ” patient ” and not as a ” person “. They have medical points of view. You have your hopes and dreams.
        Unfortunately , to have a chronic illness , often means invisible illness and people don’t understand.
        You are ill and you wanted to help your friend because, aside sharing the same passion, you know what it means ” to be sick “.

        I learnt that people around you, friends , family, boyfriend, husband etc… Can love you, can feel bad for you, can try to understand you but in the end , they wouldn’t understand the pain you are living because that’s on your body and in your body. Other people that are ill can understand because they Experience that pain.
        Is that makes sense ?
        Ah … And I would totally go to Europe.

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      2. wonderful suggestions! I’m going! It’s NOT going to be like when I walked for 6-8 hours a day! I was trying to tell my doctor, who has treated me for over 20 years, I’m FINE with just walking an hour each day broken up. I don’t have to have the experience I used to have… I can find new ways to enjoy my favorite places! I think she is worried about my feeling sad I can’t re create how it used to be. I have two elderly gentlemen on FB, a wonderful married couple, and they are in Europe NOW. At each city, they have had to visit the hospital! Every single city it seems. But they keep GOING! So, I’m going to keep going. Right now working on walking a little each day… and learning to deal with the PAIN of walking. I can handle more pain each week. Walking WILL BE PAINFUL… but with muscles built up, I can ignore it if it means I get a crepe at the end of the walk! Thank you for your wonderful input. If you would EVER like to write an article for the blog, let me know (I don’t edit….when I offer the chance to write I am “Whatever YOU WANT!”)

        Liked by 1 person

      3. That is the right attitude towards your trip! I had my first surgery on July 3rd. I had to go to Orlando,Fl at the end of August and I decided that since I was there I was going to Disneyworld! I haven’t been there in so long! The Doctors didn’t want me too.
        My friend came with me to Florida. She was so worry I couldn’t make to walk around Disneyworld all day. I just wanted to make new memories, take pictures .
        I bought a pair of collapsible crutches . I took one to Disneyworld with me.
        It was the best thing I could have done for myself. I took pictures with all the characters! It was hard but I was there till the park closed.
        I’m glad I did because shortly after they told me that my illness was getting worse anyway and I had another surgery.
        Life is short. Sick or not, enjoy what you can knowing your limits.

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