Migraine

My name is Lois Woken. I have been a spoonie all my life, however I didn’t know I was until about two and a half years ago. It seemed like growing up I was always sick. I got told I was faking it a lot. I wasn’t supposed to feel lethargic at my age,must be because I was lazy! At least that’s what my step father would tell me. I also was told I was faking how bad my joints hurt, however no one was laying with my while I cried myself to sleep every single night I was in pain. I learned to believe those lies. I told myself I hurt because I was fat, or not exercising enough, not eating healthy enough. I also told myself it only hurt when I exercised because I was so out of shape. I figured the sharp pains in my back and feet were normal after after 8 hours on your feet.
After the birth of my second son at 21 my body really changed. The bouts of fatigue were intense but short lived, and always accompanied by a slight fever and body aches. (some of the lovely symptoms of RA.) I thought I was getting frequent colds so I started taking tons of immune boosting vitamins and herbs, but it never helped, in fact I felt worse. (I now know that’s because I have rheumatoid disease, so I have an immune system that doesn’t work right, so by increasing my immune system I was only increasing my symptoms, by boosting an improper immune system.)

I pushed myself more and more, tried different diets, different exercises. Any thing I could think of to keep going. Then one day my body had enough. I went in to work one night ( I was an ER nurse at the time) and the pain in my abdomen was so severe I became sweaty and couldn’t draw in a full breath. They put me in a bed and began a work up, and that’s when I officially became a spoonie. I was diagnosed with gastroparesis and autoimmune hepatitis at the time. A year after that I was diagnosed with fibromyalgia and my doctor, at the time, was on the hunt for something autoimmune. Finally four months ago I was given the diagnosis of rheumatoid arthritis. I prefer to call it rheumatoid disease since it is not arthritis but an autoimmune disease. I also have Reynauds, migraines, asthma, RLS.

Becoming a spoonie was not an easy transition. I went from high paced, fast working, always going, active ER nurse to stuck in bed ill person almost over night. My husband suffers from PTSD which was quite severe at the time and also had a very hard time adjusting. I was not able to return to work. It took me a year to get disability. In the mean time we were struggling to make ends meet as we had a house payment an RN could afford but a disabled me could not. I had to give my car back to the bank, we tried everything to save our home but lost it as well. In fact we had to sell 75 percent of our belongings in order to be able to move. It was devastating. I was fairly ill at the time (this was 2 years ago). I had a PICC line with 24 hour fluids running and could only eat liquids. I weighed about 105 pounds. The stress of the move made things even worse. We moved from Texas to Las Vegas and put our belongings in storage. But due to just losing our house, belongings and owing in medical bills and everything else, we didn’t have enough money to cover our bad credit to get an apartment. So we left our stuff in storage and went to live with family in Washington until we could get on our feet.

During that time I was incredibly ill. All I wanted to do was die. My husband and I were struggling to get along because we were both grieving over our total loss and had no clue what to do. Thankfully I had my father during this time. He never gave up on trying to help us get through it, help us to see there was a light at the end of the tunnel. He honestly helped me to see that this was not worth life being over with. He helped me see I have a choice in how I feel. I was feeling like a complete loser. I lost everything and had to live in a studio hotel room. He helped me see how wrong I was in my self talk! I didn’t ask to become disabled. I didn’t ask for a body that hurts and wants to die. I certainly didn’t work my butt off for years to earn my RN and now be unable to use it. Becoming disabled does not make me a loser. It makes me a person who suffered through some terrible circumstances. I am a person who is strong enough to survive total loss and still find happiness in this world. I am still worth something. So with my fathers help and a husband willing to fight with me, I made some major changes to my self talk.

Here I am a year and half later. We live in a beautiful apartment in Las Vegas, doing many things we always wanted. Like art for instance. I have been able to access the best doctors I have ever had. We are finally able to pay off bills and will be out of debt in a year. I became very active in Spoonies for life and now have become an administrator, able to help others once again. I also get to be part of the Spoonie space talk show, another way to reach out and help others. I have found I cope better when I am able to help others. It fulfills the part of me that loves being a nurse and helps me feel a little more normal. I hope everyone who feels like giving up has someone in their life to help them see that there is always a light at the end of the tunnel as long as you keep going. Spoonies for Life has been an amazing game changer for me. I finally found people who could understand my pain. People who could help me make sense of the craziness my life had become.

My body still hurts and I still get flares but they are not as bad as they were. Changing how I think about my chronic illness has helped me achieve a better quality of life. I search for things every day to make me smile, things that remind me of the beauty in this world and in this life. My wish for everyone suffering a chronic illness is that they can find the beauty in their lives, whatever that may be.

Lois is an admin of the Facebook Spoonies for Life Support Group, as well as a panelist on the Youtube webshow Spoonie Space.