January 22, 2011

Moving Forward

For the first time in the past nine months I can finally say with honesty that I am at peace.  I am at peace with myself, as I am.  At my core I know that everything is going to work out.  My perspective has shifted and I am able to frame my situation in a more hopeful way.  Like, for example, having to take medical leave from school for a year.  At first, making that decision felt like a huge, defining event that would somehow alter the course of my life.  I would be distanced from my friends both physically and emotionally while they complete their schooling and I feared that I would somehow get left behind.  Now, I realize that in the scheme of things, one year out of an entire lifetime isn’t such a big deal.  And the fact that I’m not in school right now does not mean that I am not moving forward with my life and learning new things everyday.  Actually, I think that this year has taught me more about life and myself than a year of school ever could. Having experienced total loss of control and becoming completely dependent on the help of others, I know that no matter what happens I have the supports that I need to survive. The fear that used to weigh me down everyday is gone.  I’m finally living in the present, taking each day as it comes, and accepting my illness for what it is.  I have a strong sense of my limits and when to say no, but I can also begin to start expanding those boundaries a bit.

I guess you could say that I have come to terms with my illness.  It’s a part of me, but it doesn’t define me.  And I’m no longer at war with it.  I’ve accepted that it is here to stay and I am designing my life in a way that accommodates my needs.  I don’t feel such an intense frustration when I flare up and have to cancel plans or I am stuck in bed for periods of time, I just kind of go with it knowing that it won’t always be this bad.  For months people would ask me “when are you coming back to school?” or “how are you doing?” and I would always reassure them, I’ll come through this and I’ll come back to school.  While I made this claim to the world, I didn’t totally believe it.  I needed to say it for myself in part because I was probably a bit in denial, partly because I didn’t want people to give up on me and lose hope, and partly because there was a small sliver of a piece of me that did believe I would improve.  My mantra was “it won’t always be like this” and after saying and thinking it enough times, I have actually come to believe it. 

And I have improved!  I started this blog last October but before that I was too sick to do it.  I was either sleeping or too dizzy to see straight, and I was fainting several times a day.  Now, I am able to write, read, walk, and sometimes even drive.  The fainting has been replaced by manageable light-headedness and my focus has returned.  I have a blog with readers who give me a voice and validate my feelings (please leave me a comment and let me know who you are!  I would love to get to know more of you!).  I manage to get out of the house at least once a week and I can handle being in crowds and doing some gentle activities.  I even recently joined an online dating site (long story)!  I am filled with hope for the future and am motivated to continue improving.  This is only the beginning. 


  1. Marah,
    I replied to you via Chronic Babe -- see that's one way to get your blog known!
    #1 I would be happy to put you as a link on my blogroll and will do so.
    #2 I don't know where you live but I can't believe that you are suffering with these kind of symptoms. Check the National Fibromyalgia Association web-site I think it's www.FMAWARE.org
    They are up to date on all the newest medications and help and a list of doctors that treat Fibro/CFS.

    Have you had your heart checked? A lot of the symptoms you are describing are cardiological (Fibro is a Central Nervous System problem and the heart and blood pressure can be impacted)

    I'm not a doctor but I just know there is help for you.

    I'm glad you are doing better. My heart goes out to you to have been living with this for almost your entire life.

  2. For a long time I thought I'd eventually get better and be able to return to my career because I just couldn't imagine the alternative. I think it's an important part of emotional healing to be able to come to terms with that uncertainty about our future and be okay with it.

    I am a new reader from Chronic Babe. Look forward to reading your posts!

  3. @judithwesterfield

    Judith, thank you so much for your support, it would be great to be put on your blogroll and I would be happy to add you to mine as well. Thanks for your concern about finding a good doctor. I think part of the reason my symptoms have gotten so bad is because I haven't gotten the correct treatment until now. It took me 2 years to get a diagnosis and then an additional 5 years to find a doctor with a specialty in CFS/fibro. I live in Connecticut by the way. I definitely have cardiological issues, specifically POTS, which I now control with beta blockers and a vascular constriction medication. I really like my doctor a lot now but he sure has his work cut out for him! Thanks again for reading, I hope you enjoy it.

  4. @Diana Lee

    Diana, I think finding acceptance for my illness has made a really significant difference in my attitude and outlook for the future. Thanks for stopping by, I hope you enjoy my posts!

  5. You have made great strides! Coming to terms with your illness, and accepting how it alters your life is certainly not giving in. You are making your world manageable, which is really important! Hoping you have a good 2011.

  6. PS: I'd like to add your blog to my blogroll of blogs of note/interest. With your permission of course.
    My blog is: http://phylor.wordpress.com where I blog about, among other things, chronic pain, chronic illness and life in general, and my life sometimes specifically.

  7. PSS: my email is phylorsblog@ymail.com
    My memory is just not what it used to be! I forget to include everything in one posting!