Falling for a Person with CFS
By Sam Oldham
When the CFIDS Association asked for stories from family and
friends of people with CFS, I decided to share my story. I fell in love
with a person with CFS.
My story is a little different from most because I wasnít with
Victoria when she was diagnosed with CFS. She had been very ill before we met.
Doctors at first told her she had everything but CFS, with one even telling
her she didnít have long to live. She was in bed for months. Finally, she got a
CFS diagnosis about 10 years ago.
Through Victoria, Sam Oldham began seeing up close the trials a person with CFS experiences.
I met Victoria five years ago, and we soon started dating. It
was as we were getting to know each other that she started sharing more details
about her disease. Of course, I had heard of chronic fatigue syndrome, but since
Iíd never known anybody with it, I just assumed it was only bouts of extreme
tiredness. As I noticed more symptoms with Victoriaóstomach problems, headaches,
spasms, fainting spells, etc.óI began asking more questions, and she eventually
referred me to the CFIDS Association website. I was stunned when I read all the
symptoms and conditions associated with the disease. My initial thought was,
ďHow on earth does she do so well, all things considered?Ē
I started going to all her doctorís appointments with heróan
endless battery of blood and urine tests, ultrasounds and MRIs, to name but a
few. Again, I was amazed at her strength. Fortunately, she has a wonderful
doctor in Los Angeles, Dr. Galpin, who understands and believes her, and that
certainly makes it a little easier for us both.
Even though I understand the illness much better now, I canít
say that Iím still not a little scared every time I encounter something new with
her. Iím the guest services manager for a ski resort in the southern
Victoria canít commute during the week, so she has an
apartment in Los Angeles. There are
times when Iíve had to drive into the city to bathe her and carry her to bed
because she was so exhausted or she was having fainting spells. A few weeks ago
I thought she was having a stroke. She shook violently and lost her capacity to
talk. Iím sure my blood pressure was through the roof!
On her good days, Victoria
has relatively high functionality for someone with CFS. Despite everything she
goes through, she is going to graduate with honors with a B.A. in English
literature in December of this year, and she made the Deanís List and the
National Honor Roll. She works full time at a medical malpractice company and
also got an additional job recently as a staff writer for a local magazine. She
is going to get her masterís and will teach at a community college, somewhere
she can make a difference.
Although she tries really hard not to let the disease get her
down, sometimes Iíll just look at her and I can tell she feels horrendous. It
happens a lot more often than she lets on. Once I had to feed her, and
was just mortified. She
said, ďI canít believe Iím 28 years old and youíre having to feed me.Ē She was
embarrassed and apologetic. But I just told her that it doesnít matter. She
wonít let her illness define her, so why would I let it define her? She is much
more than a bundle of symptoms called CFS.
Victoria and I are to be married in the summer of 2005. She
has a disease that more than likely will be with her for the rest of her life,
and although itís a big disease, itís such a small part of her. Iíll be marrying
her already having a pretty good idea of her health, and yet I canít wait to
make her my wife.
We hear that about a third of people with CFS get better, a third get
worse and a third donít change. The two of us have talked about the fact that in
years to come I may be pushing her in a wheelchair. Or there may be times when
we can run along the beach together. We just donít know what the future will
hold. But thatís true of every couple, so Victoria and I will face whatever