SolveCFS

Donna 23 days ago

Help others that suffer from this much misunderstood chronic illness that has ruined so many lives. Not just women, but men and children also. Without donations we will not be able to fund much needed research. I cannot stress enough how debilitating this illness is. It not only affects the patients life, but everyone around them. The hardships are too many to count.

Claudia about 1 month ago

For some people CFS comes at once, and they can recall the exact moment when they became ill. For others it has a more subtle onset. For me it was gradual for a long while, and then it gained momentum. Sort of like watching a movie on a DVR; when it gets closer to reaching “real-time”, the action begins to fast forward. Just as you can skip through sections of the recording, some parts of life are missed when I am not able to participate. In those spaces there is pause, but life continues around me.
I know for me it all began in 1986 during my divorce. I got sick with a virus, and although I recovered from the viral infection, it lay dormant in me. At the start, I experienced days when I just felt depleted, and had to go home after work, get in my robe, do nothing, and go to bed early. But I didn’t see a pattern. I was 26 years old. I continued on with my life; raising my daughter, meeting my then-boyfriend, who would later become my husband, obtaining my bachelor’s and master’s degrees, enjoying an 8 year career as an audiologist, followed by a 3 year stint in pharmaceuticals. My boyfriend and I enjoyed an active, athletic life, riding and racing mountain bikes together, and participating in many other sports and activities. I was capable of much, and enjoyed a very busy life.
But in the early part of our 9 years living in Dallas, Texas, while in graduate school, I continued having days when I just didn’t feel quite right. I was drained of energy and started having frequent headaches. Later, when I was working as an audiologist my symptoms began to affect my ability to work. There were days when I felt like I couldn’t work as hard at my job because I was too tired, just didn’t feel right, or had a headache. After my family and I returned to Albuquerque in 1998, I noticed the headaches were increasing in frequency and intensity, and I had to take sick time off from work because I just did not feel well. I continued to see doctors to try to figure out what the problem was; always with the hopes of a solid diagnosis, a treatment, and a cure. When I told my endocrinologist that I was thinking about leaving audiology and taking a job in pharmaceuticals, he told me it would be worse for my health, although he had no tangible medical solutions to offer. I left audiology and entered the world of pharmaceuticals in 2001, where I continued to be rewarded for my work ethic, even though all the while I was experiencing a terrible decline in my health. My illness was escalating, and I was in a free-fall, but I still didn’t see that the ground was quickly approaching. It is only now, after I have paused for reflection that I can see that my feet had left the ground a long time ago, and for a long time I was in a free fall.
Fast- forward to 2004, when I began to notice that I was struggling to find the energy to cycle, I was experiencing pain even after minor exertion, and I was not recovering from any activities, no matter how minimal or how much I rested or slept. I had reached a point where I needed prescription medication to treat the migraines that were coming 2 or 3 times a week. I would later find out from my neurologist that I have a lesion on my brain, probably the result of the vascular effects of migraines. I could no longer muster the energy to get out of bed, and if I did, getting ready for work was enough to exhaust me to the point of having to go back to bed. I was having difficulty carrying on conversations in my job, it was uncomfortable to look at people while talking, and I found it challenging to concentrate and remember things. I started excusing myself from social events. Being with people exhausted me. Sometimes standing upright was difficult. I kept pushing to do the things I loved to do, but found myself in the hospital on a few occasions for exhaustion, dehydration, and although I live at a mile high, and ride my bike to high altitudes, I had to receive hospital treatment several times for altitude sickness. My search for an answer to my health problems continued, but my hope was that after taking some time to rest I would later return to my job. But November 8, 2004 was my last day at work. My diagnosis of CFS came in March, 2005, and I received an approval letter from Social Security Disability in April, just as my daughter and I began to plan her June wedding. I remember getting that letter, and the horrible feeling I had when I read it. I only applied for disability because it was a requirement for applying to receive long term disability from my job until I could return to work. I did not see myself as disabled, nor did I want to think that what I was experiencing was going to be long term. It was a Saturday night, and our best friends were visiting. My husband got the mail and brought it in the kitchen where we were all enjoying snacks and drinks. It was a small envelope, so I assumed it was a rejection letter. I read it twice, and as I told them what it said I remember feeling choked up and teary. I said, “I don’t want this”.
It has been 13 years since I first got sick, and nearly 5 years since my free-fall ended with an abrupt impact. I used to refer to segments of my life with the terms “before” and “after” certain events. Now I say, “Before I got sick, and after I got sick”. The impact from my free fall was like a change of character in the middle of a movie. The only way I can describe it is to say that I am missing a vital part of myself. It is as though a vacuum has sucked the life force out of me, and I function in a constant deficit; always concerned about pacing myself, managing my activity levels, ingesting the right things, drinking enough water, and sleeping enough, just to maintain status quo. It is not me who I see in the mirror. I wonder if I will be this way for the rest of my life, and hope that I won’t. I miss using my education, and working. I miss the activity level I once enjoyed. I miss my inner glow. I don’t talk about this too often for fear that it will be met with doubt, judgment, and skepticism. I also know how important it is to be mindful, to live in this moment, and maintain a positive attitude. Frankly, telling my story takes a great deal of energy, but I know that if I tell you, then you will ignite the possibility to make CFS widely understood, diagnosable, curable, and preventable in my lifetime. Please take a leap for me and donate one dollar, one thousand dollars, or whatever you can to help SOLVECFS for me!