Monthly Archives: September 2016

The danger of Optimism

This is a bit hard to write, but I think others with illness, especially invisible illnesses might find comfort and company in my words.  Yet, I know by putting them out there its a bit counter productive for me, making me a bit more vunerable than I prefer to be, maybe some in my life will feel like I am ‘guilting’ them, that isn’t my intention.

I feel a great many people, especially those who have invisible illnesses, go to great lengths to hide their pain, not to appear whiney, not to become burdenous, and not to let their pain or illness become the focus of their friendships and relationships.  Our illnesses already take up way too much of our own lives.  Even on bad days, we say we are fine, on really bad days we might say “oh, I don’t feel great today, I think I will say in”, but we rarely say “Oh, I feel like I really might die today, just from the pain, and I don’t even know if I can get myself grapes and a glass of water from the kitchen”.  When we have pain that might send a grown healthy man to bed we might smile, get dressed and think, “oh good, today I can handle enough to do the shopping, and run to the post office, and maybe if I can handle it, make myself a healthy smoothy” because after all, its less pain than yesterday.

So who’s fault is it when someone says “Well you don’t look sick” or “You don’t act sick” or even one step further “are you sure  you are sick and your doctors aren’t just trying to get rich off of you?”.  Can we blame those well meaning friends and aquaintences?  I recently had someone who I consider a good friend tell me that maybe if I stopped going to the doctors so often I wouldn’t feel so sick.  This is a person that calls me for every problem they have, no matter how small, and I always try to help them, no matter how much pain I am in.  This is a person I have taken care of when I was in a lot of pain and sick, because they were sick, and they are not used to being sick and I am.  I was stunned.  Without medical care I know I would be dead by now.  Years ago I was using a cane, which I no longer have to use because of medication.  I had at one time lost the use of my hands and could no longer paint, which is my career.  Of course my reaction was that this person, who is suppose to love me, didn’t want me to have a life as fulfilling as possible, wanted me to have even more pain, did not care if I breathed, did not care if I could paint, or walk. Did not care if I lived.  Why would someone say something like that to me.

Then it hit me, there is only one reason.  It wasn’t that that person wished me ill.  It was that he didn’t really believe I was sick.  That is because I never give up.  I show up to work if I can possibly walk.  If there is a funeral or a wedding, or a childs first birthday, or a baby shower, or a friend having a breakdown, I will show up for my friends if I can take a breath and take a step, without moaning outloud in pain.  Maybe that gives people the wrong idea about me.  Maybe that is why people will tell me I don’t look sick when I am honest and tell them I just can’t go out to dinner because I am having a not great week.

I know I am not alone.  I know there are hundreds of thousands of people out there, who hide their illnesses every day, in little and huge ways.  I also know its hard we we do such a good job at hiding it, that we fail to get the support we need from those we care about.

I partially started this page so I would have a place to share my pain freely, and yet I hardly do.  It still feels too much like complaining. I encourage everyone who has an invisible illness to have at least a few friends they can talk to, tell the truth to.  Or at least a blog where they can spill it all out, maybe for no one at all to ever read.

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A Change in Perspective

I haven’t written here in a while, and not because I haven’t been having trouble with my arthritis, but because so many other health problems have been so much worse.  Infact, I seem to have drawn the short straw with health, and have no less than half a dozen long term health issues, and it seems like I always have several short term health issues I am dealing with as well.  I kept waiting though, until I was over them.  I have been waiting for years until I was healthy again.  Maybe many of you are on the same boat, waiting for the magic medicine, or health regime to work, so that you can be healthy and finally do all the things you have wanted to do, and be yourself again, like a normal person.

The last two years have been rough.  On top of the arthritis, I have had severe asthma and acid reflux that have really made it hard to breathe and effected my lifestyle.  One thing I have learned is that psoriatic arthritis, can make any health issue, however seeming unrelated worse, because if our body is a mess somewhere, the inflamation will get worse in that area.

I had surgery a couple months ago, to help with the reflux, which made the asthma worse, and caused a horrible, embarrassing cough.  After the surgery I suffered from several miserable side effects, some still going on months later, that I have learned I may be dealing with long term.  On top of that I am still coughing, a lot.  In fact I am coughing nearly as much as I was, about 70% as much as I was.  I was disappointed, cressfallen.

I went to my doctor, who has been helping me all along with the breathing issues.  I told him I felt the surgery was a failure.  I told him I was still coughing, a lot.  He reminded me that although I was still coughing I was off three medications, all of which I was taking a dangerous amount of, any of which could have been life threatening alone.  He reminded me the goal was to stay alive and to keep breathing.  He said he felt the surgery was a great success.  I was coughing, it was annoying, maybe a little embrasssing.  So what?  I was breathing.

I was told before the surgery that with my health conditions they wouldn’t even do this surgery on me, except that they felt they needed to in order to save my life.  Now I am breathing, every day, and very rarely having to take emergency asthma medications.  The surgery was a success.  The point wasn’t to turn me into a perfectly healthy person, it was to make sure I kept living.

I think that every day I was feeling like a failure because I was tired by 4 pm, or I would be fine one day and exhausted for two after, or I would just hurt all day long and feel like not doing anything at all and getting a little done was all I did.  I was a failure because I wasn’t healthy.  I wasn’t like everyone else.  I wasn’t my ideal self.  I wasn’t this being who could hike, and travel whenever I wanted, or go dancing like my heart yearns to, or even who can make dinner every night.  But I am alive, I am breathing, I have good days, and not great days, and even the bad days I manage to make it through.  I am not failing, I am surviving.

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Filed under Chronic Pain, Coping, exhuastion, Health, surgery, Uncategorized