Today, May 12th is Fibromyalgia Awareness Day. I know many people don’t know much about it. The commercials for the drug Lyrica, that I see on television from time to time, say fibromyalgia is overactive muscle pain, but that doesn’t give it justice. Fibromyalgia is a life changer. It’s a fun taker, It’s a relentless pain giver. Taking one pill, 99% of the time, doesn’t help. I’ve tried Lyrica and my result was 70 pounds of weight gain. Needless to say, I couldn’t stay on it. I have a bag filled with medications, and I still have pain.
These are some of my symptoms: headaches, nerve pain, back pain, chronic fatigue, neuropathy, irritable bowel syndrome, rib cage pain, carpal tunnel in both hands. I’m in pain when it’s too cold. I’m in pain when it’s too hot. I have dull pain, sharp pain, persistent pain and aching in my shoulders, I have burning, numbness, tingling in various stages, different times of the day in different parts of my body.
For more years than I can recall, I have had Doctor’s tell me the pain was in my head, it couldn’t be that bad. I had one doctor tell me if I just got married and had some kids, I wouldn’t have time to think about pain. I should do it soon, because I didn’t want to be alone when I turned seventy. He was almost a dead man walking!!!! Seriously, I was about to jump off the table and slap the hell out of him, but my better judgement prevented me from having an assault charge on my permanent record. I have a wonderful pain management doctor now and I’m so very grateful for all he does and how he treats me as a patient and a person.
Some people in my life just stopped calling after I’ve turned down invitations or had to cancel things, one time too many because I was too sick to attend. When I say sick, imagine not being able to move because your whole body hurts. Then imagine, if you can move, you are so tired that if you try to move around, you might fall down. I’ve had falls in the street in the last few years, for absolutely no reason. I use a cane now when I’m going out, because I don’t want to go splat again. One minute I was up, the next down. One analogy to what we fibromyalgia sufferers face is, imagine having the flu 24/7 all day, every single day. If you know how bad the flu can be, then you have a slight clue. I’m speaking about my own situation here but I’m speaking for thousands who have to face the sting of fibromyalgia everyday.
You never know when a flare will strike or how long it will last. I believe i have truly been in a flared state for the past 2 and a half years. I was let go from my employer, when I went out sick ( an injury I received at work started the flare.) and my fibromyalgia specialist wasn’t able to provide a return to work day. I had to file for disability and now live off that money. The majority of my savings is gone. I had to pay doctor’s out of pocket when my health insurance was cancelled by my employer. I went from a manager to waiting on my monthly check. I fought my body, for seven years, so I could get my graduate degree. It was one of the hardest accomplishments, I have completed. I even graduated with honors, thanks to a good friend and a professor who helped me my last two semesters. I can’t work any longer. Bending, squatting, sitting, typing,stretching and standing all hurt me tremendously and were part of my job as a librarian.
It’s difficult to walk up and down the bus and train steps so I now use a service that picks me up and drops me off. They are notoriously late and I spend so much time waiting to be picked up from appointments, I have to pack snacks in my purse or risk passing out from hunger. I used to love going for long walks and lose myself, popping into stores and doing what I wanted when I wanted. I can’t do that anymore. Walking a few blocks hurts too much. If I walk it has to be short, as I also tire very easily.
I take supplements to boost my immune system and keep my energy up. I blend juices, take vitamins. I have rubs, salves, heating pads all next to my bed. I feel older than my years. I pray everyday to not give up the fight for good health. I have accepted my condition and its limitations., but I will also find ways to enjoy myself and not just remember good times past.
My life isn’t over, but it has slowed down considerably. I’m going to concerts of artists I’ve been waiting to see. I’m looking at the summer tours right now. I’m looking for cheap Broadway tickets. Maybe, I’ll hit up a baseball game. I don’t mind doing things by myself. I don’t like making promises to people, that I might have to break. If I make plans with someone, I chant extra for days to be able to go. I buy the insurance that goes with ticket sales, just in case…… I have to find ways to stay upbeat when circumstances could drag me down into despair. When I am attempting to have fun and do something exciting, know that I am hurting, but will never give up living.
Even though on the outside people with fibromyalgia may look fine, just know we are sometimes putting on a happy face when we really want to cry. We fight hard to do things, like bending and tying our shoes or standing up and washing dishes or cooking food. We may have to delay chores in order to lay down and feel better. So, please be patient with us. Support us and continue to include us in your lives. If you don’t know what to say to us, a gentle hug would be just fine. Be sensitive and please ask us first, we may be having a flare.
In the Writings of Nichiren Daishonin there is a gosho named Happiness in this World,that says, Suffer what there is to suffer, enjoy what there is to enjoy. Regard both suffering and joy as facts of life, and continue chanting Nam-myoho-renge-kyo, no matter what happens. How could this be anything other than the boundless joy of the Law? Strengthen your power of faith more than ever. Whenever I read it, I know with all my heart that my circumstances will charge. My mission in life is to show actual proof of my spiritual practice. I will regain my health.