Managing Your Life With Chronic Illness – Invisible Illness Awareness

I introduced my 28 Year Headache in my last entry.  How do you function with that?  How do you function with the constant 24/7 pain?  You know, I’m not really sure.  Some days it is too overpowering.  Other days I am able to push through it.  If the rest of my body cooperates I can usually call it a “good” day.  The word “good” is a subjective word.  My “good” day may be your debilitating day.  And sometimes even my “good” days aren’t all that great.

I depend a lot on my family.  A support system is vital to surviving this lot in life.  I don’t know why I have these illnesses.  I don’t know the purpose – although I would LOVE to.  Sometimes I think I know but then the next day I think “not so much”.  One thing I always know though is that I have the greatest family support I could ever ask for.  A person who lives with chronic illness/pain on a daily basis needs to be surrounded by loving, supportive and positive people.  If your family is not that for you then look around you for friends who are.  There are a large number of online support groups available as well.  A wonderful source of support for me is Rest Ministries & the Fibromyalgia support group that I moderate on Yahoo.  Not only are those people caring and willing to listen they also know exactly how you feel because they feel that way too.  You are not alone even though you may feel like it.  (If nothing else you know you’ve got me here at The Journey Leads Home.)  (((gentlehugs)))

Not only do I depend heavily on my support system but I also depend heavily on my relationship with Christ.  Even when laying in bed hurting so much I can’t turn over I know that I am not alone.  I know that I have a Heavenly Father who cares and loves me and has a purpose for my life.  I have a peace in my heart that is ever present.  I may have to remind myself of that a lot.  But that’s ok.  He doesn’t mind.  He doesn’t go anywhere – not even if I’m mad or hurt.  Last week I shared 13 scriptures in my Thursday Thirteen entry showing that even those in the Bible dealt with depression.  After this entry I am going to put together for Thursday Thirteen my list of 13 encouraging and comforting scripture that I depend on every day.

Finally I depend on my medical team to treat me physically.  I have a wonderful set of doctors whose care I have been under for 8 years.  I will tell you one thing though.  Finding the right medical team is HARD WORK.  And it can be a FULL TIME job.  It can be depressing and exhausting all on it’s own.  But don’t stop searching.  The most difficult part is getting a doctor who actually acts like he/she cares about your problems.  The right combination is:  a friendly smile, listening ear, not in a hurry, believes in your illness, treats the whole body and not just individual symptoms.  That takes a lot of searching to find.  Let me explain my worst doctor search experience.  We had just moved to Nashville and I had begun the doctor search.  I had found a doctor at Vanderbilt.  You would think they would be smart enough to know how to treat patients.  Apparently this doctor missed that day of medical school.  Honestly I don’t actually think she understood much at all about Fibromyalgia.  During one of my appointments with her (not at the first appt) I asked for a prescription for something that I could have on hand for the days when I need it – a pain medicine.  She copped an attitude (which I could see all over her face) and actually said “I can’t give you a narcotic because you think you MIGHT hurt one day”.  I was flabbergasted.  I told her “Apparently you don’t know anything about fibromyalgia because I have the RIGHT not to be in pain.  And it is your job as my partner in this process to make sure that doesn’t happen.”  Needless to say that medical partnership did not work out.  But that is the kind of people in the community that you have to plow through to find the right team for you.  But don’t give up.  Keep on searching.  Your Dr. John Nwofia (my pain doctor) and Dr. Colleen Friddell (my psychiatrist) are out there for you.

Somedays all I know is I hurt and I don’t know if I can go on.  But I remember the support I have around me and above me and I press on.  If I can do it then you can too.

September is Invisible Illness Awareness and Pain Awareness month.  Next week is Invisible Illness Week.  You can support those of us who suffer with an invisible illness by blogging or tweeting to spread the word that just because we look so good doesn’t mean we feel so good.  We would appreciate your support.  Visit one of the links for more information.

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4 thoughts on “Managing Your Life With Chronic Illness – Invisible Illness Awareness

    • Thank you, Lisa. I’m working on my Fibro series for next week. I have to set them ahead of time to post because I will be out of town (UGH – OUCH) and am not sure when hubby will let me use his computer – it’s a biz trip for him. HA I hope they all show up. Trying to finish them up today while packing, doing laundry and resting in bed. Praying for you! I know you’ve had a rough time this past week. Praying blessings on your iiwk10 ahead.

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