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!


Baffled said...

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.

Shelli said...

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.

Alison said...

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 :)

Georgina said...

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,


Pris said...

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

Ms.F. said...

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!

Elaine said...

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!



Dusty Bogwrangler said...

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!

Anonymous said...

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!