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Member Spotlight: Strength in Numbers

Posted on May 23, 2019

My name is Jessica. I am 55, and I have had fibromyalgia for over 25 years. Fibromyalgia frequently coexists with multiple medical conditions, and I am no exception. I am also bipolar, which predisposes me to fibromyalgia. Chronic pain and bipolar disease is a toxic combination.

Fibromyalgia has changed my life dramatically. I have been a disabled nurse for over 12 years now. Between the bipolar disorder, which is extremely difficult to manage, and the chronic pain, I can no longer hold down a job. Luckily, I was able to get social security benefits with the help of a lawyer who is extremely knowledgeable about the legal pitfalls of being on disability. I get nowhere near the money I used to make, but it does help. I have a very supportive husband, but even he can get frustrated and short-tempered with me—especially lately, as I suddenly lost my godchild in November and have been dealing with bipolar episodes since.

When I have bipolar episodes, I have severe mood swings, from being happy one minute to being so depressed I don’t want to get out of bed. I also sleep poorly, which means I frequently wake up my husband in the middle of the night. I have severe pain at night and restlessness, which is hard on any marriage. Taking care of my house is difficult because I get tired so easily or I am in just too much pain to do it. You are also at greater risk for falls, and I have had multiple falls in the last six months—two requiring trips to the emergency room for stitches. I recently had rotator cuff repair surgery on my dominant shoulder, which makes me more dependent on my husband lately for everything. And I mean everything. Simple things you take for granted are no longer possible. My right arm will be in a sling for a total of six weeks. No driving for six weeks, which means if I need something or need to go to a doctor, I have to ask for help. The typical fibromyalgia patient has appointments with multiple doctors. My husband frequently goes into work at 4 a.m. so he can take me to my appointments in the afternoon.

I have one sister in Switzerland who I last saw three years ago when I made the trip with my elderly parents. We have occasional contact by email or WhatsApp. I have another sister and her family who live out-of-state, so text or cell phone is the best we can do. She has made two plane trips to in last three months since my nephew's death to visit and check on all of us. I have one sister locally who I talk to frequently and see once a week. I try not to burden her with my problems, as she is struggling herself, and her other son is having a difficult time now too. She has had to make time to take me to doctor appointments lately.

I am the healthcare proxy for my 85- and 88-year-old parents. This means taking them to doctor appointments, managing their medication, coordinating community services, dealing with elderly housing, etc. I have had to reschedule all my mom's appointments lately while I have been recovering. Dad can still go with elderly transportation, but there are times I need to go to coordinate his medical care, too. It is a never-ending job seeing their medical needs are met and their wishes respected at all costs. There are days when I don't feel good but have to force myself to assist them. Luckily I am not embarrassed to ask for help for them, as my health has not been good in the last six months. My mom and I usually have a running date for lunch every week but that is on hold right now. Dad has severe back pain from arthritis, so trips out are few and far between.

Having multiple chronic illnesses causes people to lose friends over the years. I have lost contact with all my friends now, as frequent cancellation and illnesses make relationships difficult.

How has MyFibroTeam changed my life? Well, I have met other people like me with multiple medical conditions. I have friends all over the United States, England, and Australia. MyFibroTeam is built on teams and you learn a lot about each other's lives and struggles. Some of it is discussed on MyFibroTeam and other details discussed privately off-site. Each day you look forward to a picture, hug, or short note from a teammate.

I don't know what I would have done in the last five months without MyFibroTeam. So many prayers were offered to me, gentle hugs, and pictures to make me smile during this extremely difficult time. We support each other in good times and bad. I strongly recommend this site because of this. We reach out to each other if we do not see someone online for several days. We truly care what happens to each other. Cell phone numbers and emails are exchanged on an individual basis. One day I plan on meeting some of my closest friends from this site. My true soul sisters. We refer to each other as brothers and sisters, as we truly are one big family brought together by fibromyalgia.

This article was written by MyFibroTeam member Jessica as part of the Member Spotlight Series. Jessica is a former nurse who has been living with fibromyalgia since 1987.

Do you want to be a part of the MyFibroTeam Member Spotlight Series?
Let us know here: support@MyFibroTeam.com.

Posted on May 23, 2019
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