Melanie's Journey

I have a hard time explaining, even to my closest friends and family, how this illness impacts me day in and day out.

Because I choose to push and “look” good on occasion, doesn’t ever mean I feel good. I do have days I feel better than others, but I always feel sick.

Yesterday, I found a very simple, but very profound description of this illness. It does a good job of defining and describing how I feel and why I feel that.

This was in answer to a question from a patient that wondered why all of his family members were sick with M.E./CFS. Here is the quote:

It is very possible that you and the family got exposed to an infectious agent like the cold virus and had an immune response against that virus. In most people such exposure to an infectious agent leads to an activation or stimulation of the immune system. This leads to all of the symptoms one gets with CFS and related to conditions since the symptoms come from the outpouring of products from the immune system. In most people the immune system is later quieted down by other cells of the immune system and the symptoms will go away. It is our impression that in people with CFS the stimulation of the immune system is not dampened or suppressed by the response of other immune cells to bring immune system back into balance. Thus CFS reflects a chronic immune activation condition. ~Jay Levey

(Jay Levy studies HIV/AIDS at the University of California, San Francisco. The main focus of his work is HIV pathogenesis. In July, he published a study in Science that failed to find XMRV in chronic fatigue syndrome patients.)

So basically, when the immune system kicks in to fight a bug, it creates all the “symptoms” we get… sore throat, headaches, fevers, achey, fatigue… etc etc.

The problem for CFS is that the second step of the immune process is not working. The immune response is not turned off… therefore the symptoms go on and on and on…. and on!

Just as a normal person forces themselves to work even though they have a sore throat and are achey and fatigued, I too can have times where I am up and interacting with others. However, I don’t really have the “luxury” of taking a couple of days and ignoring everything and everyone. My couple of days have turned into 9+ years.  If I always dressed and looked the way I feel, I’d have no friends – no family – and a very very sad and lonely life. I choose to push and “look” good on occaision – because I have to.

I choose not to let this chronic immune activation to take away my life.

The flip side is… people see me smiling, dressed, sometimes with make-up on and they have a hard time believing that I’m getting worse… or even sick! One kind word and a smile at the doctors office and they hardly believe I feel ill. (And yet, if I don’t smile and am not friendly, I’m labeled “depressed”,  or a difficult patient)

But it’s in my nature to be kind and friendly. It’s my personality and I don’t want to lose that. I’d much rather be misunderstood, than walk around with a mopey, down-trodded face to show off how sick I feel inside.

I hope this quote helps my friends and family understand a little more about how I feel all the time. I also hope it helps those of you who also suffer with M.E./CFS.

Filed under: Health | Tagged: CFS, M.E., M.E./CFS | Leave a Comment »