We started our life together. I was still sick, but I rebounded a little bit after the big crash. Tony worked. I didn’t work. I was on the couch all day. After so many months of not getting better, we decided to go back to the doctor to try and get some answers. I don’t know how many different doctors I went to, but eventually ended up seeing an internist. I don’t even remember his name. I really don’t remember much about him or our visits. It was the fall of 1996 and I had been sick for about 10 months. I had already had all the blood tests that ruled out everything “serious”. But this man, gave me my diagnosis – Chronic Fatigue Syndrome. Finally a name to this mess. It was so great to have a name for it. I wasn’t crazy. I knew I wasn’t, but many doctors made me feel like I was. I had a syndrome, a real illness. In 1996, CFS was not recognized by a large portion of the medical community. Sadly, it’s not entirely recognized even today, but this doctor told me that what I had was legitimate. So now I have a name, but what do I do about it?
I had so many random symptoms. (headaches, no appetite, constantly nauseous, pale, dizzy, muscle aches like the flu, muscle weakness, painful lymph nodes, sore throat, restless legs, anxiety, profound exhaustion, and the inability to get restful sleep) I discovered there was no known cause or cure for CFS, so the best I could do was try to improve my symptoms. One by one. A main symptom at this point was panic attacks. Not the “I’m afraid of something” type panic attacks, but out of no where some chemical reaction in my body causes me to hyperventilate and shake and feel like I am going to die. (If you’ve never had one, don’t judge. It is one of the worst things and yes, you absolutely feel like you are going to die.) I will blog more about panic attacks some other time, but this was a symptom I was not willing to just live with. They were crazy awful and I wanted to get those under control and I needed something to help me sleep. He prescribed an anti anxiety med. I am sensitive to medication so, I was on a very low dose for two years. It worked well. It helped me sleep and I got the panic attacks under control. This was the first step in my road back to a life.
We only lived in Georgia for 9 months. Tony got a new job in the panhandle of FL, so in 1997 we moved to be close to my parents. This was the second step in my recovery process. Being close to my parents who offer a huge amount of support was very important. And we are still here, all these years later. After the move, I started feeling a little bit better. I was still sick – I realized I would always be sick, but I knew that I could find a new normal. I was working toward making changes that would allow me to function outside of the bed. I remember that it was spring, and the weather was nice. My daily routine consisted of going for a short walk and talking to God along the way. I loved breathing the fresh air and feeling the warm sun on my skin. I loved hearing the birds sing and thanking God for the ability to be outside. I had spent so many months in the bed and on the couch, that I was thrilled to be able to walk a short distance and enjoy the outdoors. Taking walks is not a cure, but taking things slowly, shedding the stress, learning to breathe, appreciating the small things, listening to my body, taking the meds, having family help and support… These are the things that put me back on track to a life out of bed.
I hesitate to write it that way because for those you reading this that are not ill, it kind of sounds like making a few simple changes in life made me well. This is not the case. I am simply saying that in my case, I believe CFS was caused by my driven personality. I pushed my body beyond its stress boundaries and it cracked, allowing CFS into my life. I was predisposed to it because my mother suffered from fibromyalgia and we all know there is some genetic component to it. The FIRST step in dealing with CFS was shedding as much stress as I could and learning a new way to cope with the inevitable stress that is in every life. I found a way to do that by going for short walks and I slowly started to find a “new normal.”