Wednesday, March 02, 2011

Nine Years and Counting

Happy Illiversary to me! 

March 2 always brings mixed emotions for me.  It was the day, in 2002, when my life changed dramatically, though of course I didn't realize it at the time.  Here's what I wrote in my journal that day:
The plan was to stay home today, get some stuff done, and have a vacation day in Baltimore tomorrow.  Today went OK, but now I'm feeling rotten with a bad sore throat...?
The next's day's visit to Baltimore was horrible for me, as I pushed myself through the Aquarium, science museum, shopping, and walking.  Seven years later, in March 2009, we went back to Baltimore and I was able to enjoy the trip (with meds, naps, and pacing).

For many years, March 2 was a depressing anniversary for me.  Here's what I wrote in my journal on March 2, 2003:
A whole year of my life.  Maybe it’s appropriate that I’m feeling so horrible – a reminder that it’s not over.  I just want to give in to whatever this is.  I’m so tired of trying to keep going when I don’t feel well.  I feel like just giving up and being sick, staying in bed.  It takes too much energy to live my life and I have no energy left.
I wasn't even diagnosed yet at that point and was living an exhausting, painful life in limbo.

On my 5th illiversary, I blogged about a mixture of depression and hope.  Even last year, at 8 years, I was feeling somewhat low.

So, I am extremely pleased that today, I am feeling very optimistic, at this 9-year anniversary.  Personally, 2011 has been very good so far.  I started a new treatment in January, beta blockers, that has helped me to be more active.  I just came back from a 30-minute walk with my friend!  Yesterday, I started another new treatment, Immunovir, that I hope will help with my immune system dysfunction.  I'm doing better than I have in years.  Yes, I still have CFS and still live a fairly restricted life, but even the smallest improvements make a huge difference in quality of life with ME/CFS.  And in the wider world, research is ongoing into XMRV, anti-viral therapy, and lots of other aspects of CFS.  Even the news media has started to talk about ME/CFS in a serious way.  Things are good, and the future is looking brighter.

Now, if only I could magically cure my kids, than all would be right with the world.

So, Happy Illiversary to Me!

9 comments:

  1. So glad to hear that your meds are working so well for you. I know, lots of exciting things are going on in the research world. Hopefully treatments will be available soon.

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  2. Happy Illiversary, Sue! You have been a light and a blessing to the CFS community. I'm sorry it has come at such a high price for you. We're looking forward to the day you can graduate from our ranks.

    I know what you mean about the smallest improvements bringing joy. It's like how good 30 degree weather feels after a 5 degree cold snap. You appreciate it so much more. I'm glad your new treatments are working. Good luck with the new meds, too.

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  3. Glad you're finally having a hopeful anniversary! A 30 minute walk sounds divine! If I could do that I would get a dog in a heartbeat :)

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  4. Georgina5:58 PM

    Dear Sue,

    Congratulations on being able to write such a hopeful account of your illiversary! I'm glad to hear that your new meds are helping. I hope that 2011 continues to be good to you and that your boys are back on the up asap.

    Best wishes,

    Georgina

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  5. Good news, Sue. I'm glad those two things are making a difference in your life!

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  6. Dear Sue, thanks so much for your comment on my blog...feels good to know that I was missed :)

    A 30 min walk is fantastic...I'm so glad things are working for you. Now I just hope that your boys feel better soon too!

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  7. Sue,
    I am so glad that I have had the privilage to get to "know" you here in the blog world.

    I found it interesting that your illness started with a sore throat. So did mine!

    I am so glad for you that your meds are making a difference and that you are seeing improvements!

    Happy Illiversary and I pray that each year you will post about more improvements and that soon you will be symptom free!

    Blessings,

    Elaine

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  8. Congratulations. You're a shining example to all of us. I wish I had half your humility and calm determination. You help us all keep hope alive!

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  9. Sue ~

    I don't remember the exact date I was stricken. I just remember that it was right before Christmas 13 years ago!

    What a long journey it is being for all of us.

    What do the beta blockers do exactly? I am going to have to ask my new doctor if he knows about them and also about Immunovir. Glad you are feeling somewhat better! And of course, you know I am thrilled about your 30 minute walk!

    Judy

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