My name is Isabel Wills; in Weehawken, NJ, I ‘m living. I am a caregiver for my 90, an Acute Chronic Vertigo sufferer. She incarnates positivity and strength for me. I love photography, nature, writing, crochet, painting and supporting the uncapable. Most of these, since I was diagnosed, I have learned to relax.
I had time to think about when my symptoms came to light, and when I was a child, I would need to date them again. Since then, I have always felt sick, I am nervous, I just never have been myself again. I had a traumatic event that happened to me.
In October of 2013, I was diagnosed with Fibromyalgia. After many years of doctors, tests, fear and frustration, the diagnosis was made. I finally felt a great relief to get a diagnosis and I knew it wasn’t all in my head. I never heard about Fibromyalgia, so I had to do a great deal of research and find ways to manage my disease. Many trials and failures have occurred like medicine, therapies, etc. But I have discovered some healthy lifestyle changes that have helped.
Since my diagnosis, I have experienced dramatic changes in my life. I can’t work any more, that’s so hard for me, because I work since I’m twelve years old. The major change was that negative people were eliminated from my life. Changing a game. In volunteering for The American Fibromyalgia Care Society, writing for the Mighty, changing my diet, light stretches, meditation, stress reduction (not easy), photographing, etc., you find solace and a sense of value.
When I first got my diagnosis, my mother, my aunt and I were extremely confusing and concerned about the exact nature of Fibromyalgia and its impact on my life. During my flares and my desire to research and find relief, they have always supported me. I’m a fighter, you know. I couldn’t find many doctors that trusted or knew how to treat Fibro.
My other members of my family had no notion at all, and I still thought I could visit them, do the things I had done before, or thought it wasn’t so bad, or did not believe me. I always thought it was more difficult for me to say, “No, I can’t go.” I had many negative people to let go in my life, and finally I am grateful for my decision.
I think the hardest thing about Fibro is to adapt to the constant new symptoms that the disease brings. Surprises always lead to fear and uncertainty. Also, I accept and embrace a life-long illness, as I try to live as I can and do not let my life go. The worst thing is how limited physically I am. I’ll have Fibro, but I don’t let it have me. I still believe I could do things like a healthy person after all these years.
Since the diagnosis, I have been open to my friends because I feel awareness and voice is essential in order to help someone else knowing that I’m not alone. Not all are willing or willing to hear. Some people may find it to complain. Let’s just talk about it; let’s find relief together, let’s be there for one another, and I try to defend the positive side.
I have a degenerative disc, neuropathy, radicular disease, glaucoma and arthritis, as well as fibro.
My best advice is to breathe, to pace, to listen to my body, to learn how to rest and to say no without guilt. Set limits. Set limits.
I manage my fibromyalgia twice a day with a meditation, light stretches, eats healthier, yelling and cursing when I have to. I always seek new ways of bringing self-care into my life.
My mother was my greatest inspiration because she suffers from Vertigo 24 hours a day. “I’m not going to lose myself.” “Go up all day and do things that will bring joy,” She tells me, “this is what you have, so find ways to make your life as quality as possible.”
My greatest struggle is my physical mobility struggle. It feels like in my own body I’m trapped. I face it every day by trying my best to keep pace and do my best. Not to feel culpable because I can’t do it all. It can be very deceptive and frustrating.
My best thing because of my illness is that I found an unbelievable sense of force and resilience which I would never have imagined to have. I and others struggle for myself. The worst thing would be my disease’s emotional roller coaster.
I’ve been disabled recently and I can’t work anymore. It can be difficult to balance a personal life with my illness, because I don’t know how my body will be from one day to the next. I can’t plan, and I’ll make things that don’t need to walk or travel too much. On the way I lost many “friends.” But I’m always looking for and enjoying things.
I fight with depression and anxiety. Twice a day I meditate on writing in my newspaper, crocheting, painting, nature, ‘me’ time, care for myself, trying and breathing. In order to avoid repeating it, I try to see when my moods fluctuate and discern why I react to a situation. I face it sometimes, take it and move on when I’m ready. Sometimes you feel heavy.
My words of encouragement are that I know how overwhelming this disease is, so it is important for everyone to know that they aren’t alone. Find ways to find relief, improve your health, discuss fiber with others, join a group, participate, sensitize and train the healthcare community. Learn how to keep pace, rest and listen.
I’ve only learned the strength of myself. Sometimes it still surprises me. But I face things differently, I’m not strong all the time. I found that it was a blessing to advocate for this disease. I also have a lot of faith and I’m resilient.
I can advise someone newly diagnosed with Fibro to never give up, research, join a group, advocate, and find understanding physicians. I want people to know this can make us feel lonely, make us feel lonely, make our whole universe change — if we allow it to happen. There is so much to be thankful for, to fight for, and you can only be surprised how strong you are. We are all fighting, and when we are sharing with each other, we treat each other so much better. We take a deeper look at it.
I am a member of the Why Fibromyalgia Community committee to raise awareness about Fibro. I let everybody know that I have fibro, and if they want to talk my door is always open. I tried to educate many medical people, who need it desperately.
Because I’m strong, I am trying to find the good, the gratitude, the faith, the beautiful moments outlines illness, I feel like a Fiber warrior. You’ll find me to smile, try my best and help everybody I can.
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