Wednesday, May 13, 2009
ME/CFS Awareness Day
As many of you know....I was dx with CFS just before Christmas 2008. I think, it was a quick dx according to how long it takes for most people with CFS to be dx, but it seemed an eternity for me. Many, many unrelated symptoms, many various Drs. and specialists, many tests. The more I investigated, the more unanswered questions there were and the less we knew.
The second last appt. though, before visiting the Dr. who was finally able to dx me, was most disappointing. After almost a year of sometimes very frightening symptoms, I was told my problem was ......
I was insulted and humiliated. To think I'd been so sick for so long...been tested for breast cancer, (among other cancers) as well as many other illnesses.....and then to be told it was gas. I may not be a trained medical Dr., but was quite sure it was more than just gas. I left that appt., disgusted....I really just wanted to crawl into bed and stay there. My attitude was quickly becoming "either this 'thing' (whatever it was) is going to finish me or I'll get better on my own"....either or....it was better than this.
If the last appt. (the one where I finally received dx) hadn't been already booked for months, I would have cancelled (and actually the thought crossed my mind). Thankfully, I did not and went to that appt. That specialist (an internist), dx me right away. He got what I was saying. He did not look at me like I was talking Martian. He did not look at me like I had three heads. He knew where I hurt, before I told him. The dx was made fast and more importantly correctly.
Thank you, Dr. Joshi!
I am so thankful for the internet. Finally, with a dx in hand, I was able to start my own research. I was amazed at some of the things I read.....there it was in black and white..... my condition, feelings symptoms and struggles summed up...right there before my eyes.
The name, Chronic Fatigue Syndrome, is such a misleading name and one that really makes a lot less of the disease than what it really is. Yesterday (May 12) was CFS Awareness Day, although it was not a very good day for me, so I missed it (yesterday, I was painfully aware what CFS is).
I've asked for permission to repost a couple of excellent posts about CFS. When/if I get that, I'll copy and paste them here. In the meantime, you can read them for yourself. Both of them are excellent descriptions of CFS and what it is really like.
This one, CFS Warrior, is written by a person who had just been awarded their PhD before being struck with CFS. In the profile on the right hand side bar of the blog is a brief look into what life was like just before the dx. The above post goes into a bit more detail of the fight with CFS.
This one, Renee's Reflections, is written by Renee. She is living with CFS and Lyme Disease. In the post above, she lists some of the symptoms of CFS.
Both are so worth the read for anyone wanting to learn more about what living with CFS is really like.
(Just as an update for my own situation ....through many avenues.....such as these two above-noted bloggers who have left many tips, links, info etc. about this disease, as well as my own reading, research, the help of a homeopath, speaking with others who battle this, I'm making some good progress. I have a way to go yet, but I'm hopeful. I've learned I need to evaluate my progress over months rather than days and that helps immensely. Looking back to where I was a year ago....I have improved greatly.)
Edited to Add:
I received permission from both bloggers...but am having difficulty getting some of it copied and pasted here properly.....(computers....grrr...)....the alignment seems to be off here, so I encourage you to check out the above links. They sum up symptoms and what life is like/can be like with this illness.