We Want To: But Can’t!

Written by: Shelly Odian

It used to be, that I could work all day, work half the night, get three hours of sleep and get up and do it all over again.  It used to be that I could take my pain medications, drink some strong coffee, ignore my pain, ignore the fatigue and just burn the candles at both ends and get EVERYTHING accomplished I set out to do.  It used to be, that I could leave my house, do mundane things like grocery shopping, working full time, cooking big dinners and still have energy left over for my significant other, my children, (I breast fed all of them) and still have ME time; at least a little bit of me time.  It used to be that I felt organized, accomplished, needed, significant and even sometimes appreciated.  FIBROMYALGIA, CFS and MYOFASCIAL DISORDER, TOOK MOST OF THE THINGS THAT MADE ME FEEL LIKE ME, MY INDIVIDUAL SELF.
I can no longer go without sleep for very long, and sleep either too much or sleep with interruptions of pain each time I move even slightly.  I can take my pain medications and they basically keep the pain at bay just enough for me not to go insane from the intensity.  I drink coffee for a little pick me up, and it does very little and I end up falling asleep from exhaustion, even though I have done NOTHING.  I can no longer grocery shop for more than 5 or 10 minutes at a time and even that can put me in bed for a couple of days.  My house goes undusted, my laundry piles up, the dishes accumulate in the sink and I just look at everything with disgust and guilt.  How did I get here?  Where is my energy?  Where is my life I used to have?  I should be enjoying myself, my husband, my beautiful home and all my many collections of antiques.  I do have plenty of ME TIME.  I can’t seem to get out of the house to go anywhere or do anything.  Just showering/bathing, getting dressed, doing my hair and getting out the door makes me feel like I have run a marathon.  I am drained.  I am empty.  I have only my pain and my fatigue to keep me company these days.  Oh yes, I can take medication and KNOCK MYSELF OUT, but that only makes me MORE tired and what I want, is to DO things, ACCOMPLISH things, ENJOY things, I want to DO LIFE the way it’s supposed to be done.  With excitement, a feeling of adventure and exploration.  What I have ended up with is a Chronic Illness that I have to fight ever day.  I have to keep my chin up, tell myself I am STILL worth SOMETHING…right?  My brain still works, right?  Oh yeah, oops, brain fog!  Ok, so sometimes my brain works.  It’s my body I can’t depend on like I used to. 
One of the hardest issues I deal with is keeping my mind occupied with positive and encouraging thoughts.  It’s so hard to do when you feel guilty for not having a tidy, clean organized house.  It’s hard to do when you can’t even get up enough energy or your are hurting so bad you can’t cook a meal for your husband and children.  It’s so hard to do when you feel like you are letting down and disappointing everyone you love and care about, because you just aren’t up to “par” and you just CAN’T DO IT.  I disappoint myself.  I can’t make plans, I can’t make promises, I can’t confirm that I can do anything.  I just never know how I am going to feel, but the stage I am at, with my chronic illnesses is that 90% of the time I am going to be an epic fail on the DOING ANYTHING AT ALL agenda.  I try not to give up.  I try to remind myself that I didn’t CHOOSE this and It’s an illness and I have to stay focused on the positive.  However, as I lie here, day after day, in pain and feeling weaker, I have to ask myself how long do I fight?  How much good is it going to do?  What benefit really am I to anyone when I don’t even feel like I am a benefit to my own self? 
It is so easy to fall into negative thinking.  However, we just can’t allow those negative feelings and doubts to control us any more than we can let our illnesses control us.  As long as we have a breath in our body, we have to fight, we have to stay focused on the beauty and love around us.  As long as we have a heart beating inside of us, we have the ability to LOVE, TO LIVE and share the essence of who we are with others.  WE DO MATTER.  We have more experience with pain and hardship which gives us a special knowledge and an empathy towards others.  Make sure you talk out your feelings.  Cleanse your heart and soul, reach out for hope and for support with those who understand and have the same issues.  Our disabilities are unique and are not very well understood.  That being said, we MUST make sure we understand each other and support each other.  Keep hoping, keep pushing, keep FIGHTING.  We are all in this together!
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6 comments

  1. I’m in that stage where I’m popping pain pills, getting up and going to work, and shopping/cooking/cleaning when I can find the energy (that’s not often…hubby does most of that). Honestly, I’m scared to death. Is this my future? Not sure I want to get to that point.

  2. I’ve had a rough day today. Reading this did me good. Thank you. My husband and I are having relationship problems because of my fibromyalgia and everything it impacts. We’ve had a rough road. My illness has kept us from having a family when planned. It’s changed everything for us. It’s tough. For both of us. Today was one of the days I couldn’t find any positive thoughts. Thanks for this reminder.

  3. I really like the end of the letter, but the beginning and middle really got me down for a minute. I used to feel the same way, for fifteen years to be closer to exact. I went down the pain pill route. I spent four years of my life in my house. Last year this time I was in a wheelchair. Now I am walking and going and living some kind of life. I did this by snapping myself out of it. Medical Marijuana helped save my life. It got me off pain medicine. It took away my depression and eased the pain. It made life tolerable again so I can do things now and know that I have immediate relief when I am hurting and/or fatigued. Now I am really into herbs and natural treatments. I make up my own teas and drink several cups daily.

    It is possible to have a life again but you do have to fight for it. You also have to be willing to try new things. I never could understand someone who was afraid to try marijuana, which doesn’t kill you and isn’t habit forming and is something that is naturally on this earth but are willing to try pain meds which do kill and are addictive and are man made. Where is the rationalization of that?

    Anyway, didn’t mean to get on my soap box, but I see so many people where I was and I want to help as many as possible.

    SHELL

  4. Thank you for writing what we all want to say but don’t have the right words to describe our feelings. Stick in there. I’m having that kind of day all too often now. I hope tomorrow is better for you! – Meg

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