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Be Our Guest Fridays {8}: Our New Normal by Sue from Living with ME/CFS

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Welcome to Be Our Guest Fridays!

Be Our Guest Fridays is a weekly feature hosted by Tanya from Mom’s Small Victories and Helen from My Novel Opinion where we feature guest posts by our favorite bloggers and authors. We started this feature as a fun way to give back to the blogging community. We are excited to share with you these creative, inspiring and knowledgeable bloggers.

My Co-Host Helen from My Novel Opinion

You can find my fabulous co-host Helen on her blog, on Facebook, on G+, and on Twitter. See her blog for more ways you can find Helen.

Today’s Guest Post

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Our New Normal by Sue Jackson, Living with ME/CFS and Book by Book

In March 2002, my life neatly divided into Before and After. On March 1, I enjoyed a typically busy Saturday including a vigorous exercise class at the Y, grocery shopping, and hosting a dinner party for friends in the evening. I woke up the next morning feeling terrible, with a severe sore throat, aching all over, and completely exhausted. I thought I’d caught a virus. I had no idea my life had changed dramatically overnight, and I was now in the After.

My “flu” never went away. After three weeks of lying on the couch, I dragged myself to my doctor, but all my tests came back normal. That was the start of more than a year of visiting dozens of doctors and having hundreds of blood tests.

Finally, more than a year after getting sick, I found a new primary care doctor who recognized immediately what was wrong with me. She told me I had Chronic Fatigue Syndrome, which sounded like something made-up to me (outside the U.S., it is known as Myalgic Encephalomylitis or ME). I looked it up online and was surprised to find a CDC page on CFS, which was indeed real. I found two books on ME/CFS in the library, and sobbed as I read them: for the first time in a year I recognized my own ordeal in someone else’s words. I discovered that ME/CFS was actually an immune system disorder that often left its victims housebound or bedridden.

I did my best to cope with the realization that I was now chronically ill, and I tried some treatments with the help of my new doctor. Then, the unthinkable happened: our two sons also developed ME/CFS, which is known to have both genetic and infectious roots. Our older son, who was 10 years old, had symptoms eerily identical to my own. Our younger son, only 6, had different symptoms, including chest and back pain and frequent headaches, as well as the exhaustion and telltale exercise intolerance of ME/CFS, but we soon learned that those were common symptoms in younger kids.

Now, there were three of us sick in the family, with only my husband left to care for us. Those were dark times. Eventually, things began to improve, slowly. We took my oldest son to a pediatric ME/CFS specialist and learned more about our illness and treatments that would help both boys. As for me, I relentlessly scoured the latest research, constantly looking for new treatments and taking study abstracts into my doctor. Little by little, we found our “new normal.”

It’s now been almost 13 years of living in the After. Although my life is still defined by limitations and piles of pills every day, I’ve discovered some surprising positive side effects. Illness has forced us to slow down. I used to go full-throttle through my days, expecting a lot from myself and everyone around me. I still struggle with my perfectionist tendencies, but I know I can only do so much now, so I’ve learned to give myself a break. When I wake up feeling awful, with a list of things I’d planned to do that day, I call it a Plan B day and accept that I need to rest and take care of myself.

One result of slowing things down is that we spend more time together as a family. We try to embrace our necessary downtime and enjoy a movie or TV show together in the family room. We eat dinner together every night, go camping when we have a free weekend, and we all look forward to our annual summer road trip together, when we travel at our own pace.

Our sons have developed a wonderful sense of empathy because they know what it is like to deal with challenges. They are both incredibly kind – to family members and peers as well as strangers. Odd as it may sound, we have all become more positive after living through such trials. We have learned to find joy in small moments and to be grateful for what we have.

Living with chronic illness has also brought an unexpected benefit – the ability to help other people. I started a local group for families affected by ME/CFS. For some of these sick teens who are mostly housebound, meeting other teens just like themselves has been life changing, and we parents trade information on doctors, treatments, and school help. With that kind of support, three of the original teens in our group are now in college. I also started groups on Facebook for parents of sick kids and for teens with ME/CFS, and I write a blog about Living with ME/CFS, with a focus on living.

Today, almost 13 years into the After, our youngest son is recovered, after 10 years of moderate illness. Our oldest son is still struggling – he also got Lyme disease and other tick infections eight years ago – but he is in college, living on his own, taking three classes a semester and enjoying time with his friends, doing his best to live his life in spite of his many restrictions. Life with a chronic illness is seldom easy, but we’ve discovered that it can be rewarding. We’ve learned to appreciate the joys and blessings in our lives, and we are grateful for that.

About Sue

Sue Jackson writes two blogs, one on chronic illness, Learning to Live with ME/CFS, and one about her passion for books, Book By Book. You can follow either of her blogs on Facebook (Learning to Live with ME/CFS page and Book By Book page and Twitter (Learning to Live with ME/CFS and Book By Book).

For more information on ME/CFS, visit Solve ME/CFS Initiative.

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Thanks Sue for sharing how your ME/CFS presented itself and how the diagnosis impacted you and your family. I know it’s scary getting the diagnosis initially and learning how to deal with the long-term impact. What you’ve shown us is most important is redefining what our new normal is. We can’t hold ourselves to unreachable standards. Doing the best we can to manage our chronic illnesses is vital in maintaining a positive attitude. There’s no cure for these chronic illnesses yet so everyday we have to focus on what we can do and cut ourselves a break and rest when we need to. Thanks for sharing your story with Be Our Guest Fridays to help bring awareness of what ME/CFS is and how to manage the disease in a positive way. I applaud your efforts to help others through your positivity, your blogs and the support groups you’ve started. We give you our thanks.

Do you have a chronic illness? How has it redefined what your new normal is? Do you find the best support online or in IRL support groups?

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4 Comments

  1. Sue, I can really identify with what you have been through. In Feb., 2007, I went to a neurologist because of an unhealing frozen shoulder. after doing a series of nerve and muscle tests, he made a diagnosis of Parkinson’s Disease. All I could say was, “I’m going home.” And I did. But, the fact of living with a chronic illness didn’t change. And so, I struggle with how much energy to expend on doing what; how does one deal with a non-curable and progressive disease. Today, I am doing well, several meds, exercize program and a faith in God and a loving family, make it possible to do pretty much as I choose. However, there is always that question, how long will this time last? Thank you for sharing, it helps to see how others cope and win over thinigs they never imagined in their life. Grace, Linda

    1. Thanks for taking the time to leave such a thoughtful comment, Linda (sorry it took me so long to see it!). I’m sorry to hear that you are also dealing with chronic illness. My MIL had Parkinson’s Disease, so I know a lot about it.

      I;m glad to hear you have found some treatments that help (me, too). Have you ever heard of low-dose naltrexone? My son and I take it, but it is also being used to Parkinson’s – it is a very low-risk med because it is used for this purpose in tiny doses. Here is some info –

      An article about someone taking LDN for Parkinson’s:

      http://www.mailtribune.com/apps/pbcs.dll/article?AID=/20080310/NEWS/803100308

      A list of scientific studies on LDN – many of them for Parkinson’s or applicable to Parkinson’s:

      http://www.ldnresearchtrust.org/Clinical-trials-studies

      Thanks again for your comments and best of luck in your journey!

      Sue

      Live with CFS

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