Friday May 1st, 2015 ~ Living With Chronic Illness

There was a time that I never slept past 4:30 a.m. on weekdays, and never past 5:00 a.m. on the “weekends”.  I worked anywhere from 60 to 100 hours a week (depending on the season), took care of the pets, the house the kid the yard ~ all of it.  Made all the practices and games, always had plans on top of all the responsibilities and loved it.  Then I got sick.  Talk about a freaking life change.

I’m not able to work ~ not because I’m not “mentally capable” of it but because I no longer know from day to day if I’m going to be able to get out of bed ~ let alone be considered reliable.  I’m so NOT reliable, even to myself.  I honestly don’t know if the next five days I’ll feel “ok” and be semi-functioning or if I’ll literally be in bed in pain and sick for those five days.  It’s a SERIOUS wake up call to adjust to what “living” means when you go from a fully functioning existence to this and it’s not an easy change.  Quite the opposite actually it’s been super hard, and it’s a continued struggle.  Even though this whole mess started back in 2011, gosh has it really been four years?  There are times that it feels like it’s such a struggle day to day.

These past two months have in fact been a struggle, a big one just because I have not been feeling so great ~ and this past week has been absolute hell.  I’ve been in bed and miserable more days than not, and not feeling well of it’s own accord sucks ~ but the impact it has on your life is somewhat devastating.  When you have days – multiple ones at that – that getting up to shower is absolute agony your psyche is impacted, I don’t know how it couldn’t be.

    I’m lucky actually that I have a good friend who had become “disabled” some time before myself and she really gave me a lot of good advice and insight into “making the best of it”.  Her advice has helped me a great deal and I force myself to remember it frequently just to remind myself that though this is difficult it’s not impossible.  Even as I try though ~ I have to admit that god I miss my life.  I miss being able to make plans without wondering which ones my sickness will make me cancel.  I miss being able to press on full steam ahead and feel productive.  I guess that’s a big part for me, feeling like I have PURPOSE.  Sure I know any good friend or therapist would tell you to find value in “new” things and that “everyone has value”; on an intellectual level I understand those things and I agree. On an emotional level though it’s not as easy as it sounds and lately I find myself struggling all over again.

    I find that when I have a period where I’m “doing pretty good”, my mental state follows suit and even though my life is still different I’m able to adapt and accept the “new life”.  Times like this when things are not going so jazzy physically it’s a lot more difficult to maintain the positive outlook.  It’s actually quite difficult lately and I guess I am writing this blog today to remind my OWN self to focus and to not get bogged down in the negative.  I am hopeful that after these tests tomorrow that I will be able to make some plans with the G.I. doctor to hopefully improve some of what I have going on.  I’m trying hard to concentrate on THAT positive outlook for the future and not dwell on how crappy things are at the moment.  I guess for the reader the point is that if you DO in fact suffer from some chronic illness (whatever it is) ~ please know that all that crazy stuff you feel does NOT make you crazy.  I think you are quite normal, it’s not an easy gig to have to endure and if you don’t struggle then I’d say you are a stronger man than me.  I DO struggle and often (more often than I’d like to admit) and right now I’m in a serious fight not to allow the negativity and depression to take over.  

    So a big shout out and hug to anyone who know’s what it’s like to live with such a devastating chronic condition, and a huge amount of respect and love to all who are doing it with grace and a positive outlook.   You are an inspiration to me and I’m sure to many others out there, some you likely have no clue that you inspire.  I’m curious if anyone is reading who DOES struggle like this, what are some of the things that YOU do to help yourself stay out of that black hole and to overcome to psychological aspects of your condition?  Please share, I’d love to hear!

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