Shelley is a mom of two, who suffers from Fibromyalgia and Lyme Disease. Shelley’s blog, ChronicMom, shares her journey of being a mom with chronic illness.
When were you diagnosed? How old were you at the time?
I was diagnosed in 2011 when I was 27 year old.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I was recovering from a very difficult pregnancy and delivery when I first noticed some weird symptoms. My hands were alternating between numb and tingly and I was exhausted all the time. I ignored the exhaustion at first because I had an infant, but it kept getting worse. I went to several doctors who all tried to diagnose me with postpartum depression, which I knew was not the problem. I kept hopping from doctor to doctor hoping to get someone, anyone, who would listen to me. I kept being brushed off and told I had to be depressed. Meanwhile my symptoms were getting worse and worse, I began to hurt all over and I had trouble sleeping even though I was always exhausted. I never knew it was possible to hurt in so many places at once.
Finally after a year and a half of doctor shopping I found a Rheumatologist who knew right away there was something wrong with me. I cried in her office because I was so relieved to find someone who would listen. After she eliminated other possible causes for my problems, she diagnosed me with fibromyalgia.
Were you working at the time?
I had quit my job in order to have children (I have very difficult pregnancies that often involve hospitalization). My intention was to go back to work after my baby was born, but with the onset of fibro I was never able to.
What was your family life like (married? kids? etc?)
I am married and have two kids, who are now 3 and 6.
How long have you been married?
I have been married to an wonderful man for 9 years
How did your family initially handle your illness?
It was difficult for them. My son was an infant when I got sick and he was really difficult for me to take care of. It didn’t help that he had some major medical issues at the time. My husband had to step up and help around the house a lot. It was hard for him to be at work all day and come home to a sick wife who was able to do very little. My extended family would pitch in whenever they could, even though they didn’t fully understand what was going on with me. I was lucky that I didn’t experience a lot of judgment from them, even if I didn’t receive as much help as I needed.
How has your family/ work situation changed since Fibromyalgia entered your life?
I have given up on the idea of returning to work full time. I’ve always wanted to have a career and it has been really hard for me to give up on the possibility. It’s really difficult to explain to people why I can’t work since most people can’t comprehend the physical limitations I have. However, I hope to be up to part time work by next year as I’ve gotten better at managing my fibro. I have also considered going back to school to get a Masters degree, though I am still searching for the right program that will make allowances for my physical limitations.
What changes have you made to help you manage your Fibro?
The biggest change I have made has been through my diet. I’ve cut out most processed food and have been trying to cook at home with as much fresh ingredients as possible. I’m still not perfect, but I’m getting better at finding the right foods for my body. I’ve also switched from aggressive aerobic exercise to yoga. Yoga is much kinder on my body and it helps me to relax my aching muscles. It also helps to quiet my mind when I get too stressed out about my inability to accomplish the things I want to accomplish.
The biggest change I have made has been through my diet. I’ve cut out most processed food and have been trying to cook at home with as much fresh ingredients as possible. I’m still not perfect, but I’m getting better at finding the right foods for my body. I’ve also switched from aggressive aerobic exercise to yoga. Yoga is much kinder on my body and it helps me to relax my aching muscles. It also helps to quiet my mind when I get too stressed out about my inability to accomplish the things I want to accomplish.
If you went back to school, what would your Masters degree be in? What is your bachelors degree in?
My bachelors degree is in Parks, Recreation, and Tourism Management. I wanted to use my degree to develop after school recreation programs for at risk children. During college I volunteered for a local organization that provided a safe after school environment for kids who didn’t have a place to go and I’ve always wanted to continue that kind of work. Because of the physical limitations I have now, I don’t feel I’ll be able accomplish those goals anymore. I’m now looking at getting a Masters in Healthcare Administration which would give me a little more flexibly in my future work and have less physical demands.
What do you feel is the most challenging aspect of Fibro?
For me the hardest parts are the unpredictability and exhaustion. It’s really hard to function normally when you have no idea how you are going to feel on any given day. It’s really hard to explain to people how I can be feeling good one day and bedridden the next. No one understands the inconsistency until they experience it. I can fight through the pain most of the time, but there is nothing I can do about exhaustion.
For me the hardest parts are the unpredictability and exhaustion. It’s really hard to function normally when you have no idea how you are going to feel on any given day. It’s really hard to explain to people how I can be feeling good one day and bedridden the next. No one understands the inconsistency until they experience it. I can fight through the pain most of the time, but there is nothing I can do about exhaustion.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I had Lyme Disease, which my doctor believes actually caused my fibromyalgia. Because my Lyme Disease went undiagnosed and untreated for such a long time (2 years), I will never be free of the damage that it did. After the Lyme Disease was fully treated, I was left with fibro as a lasting side effect.
Do you believe the Lyme disease is totally gone?
I believe I no longer have active Lyme and I am now just dealing with the permanent side effects of it going untreated for 2 years. I believe antibiotics have done all they are going to do for me and I now need to concentrate on dealing with my fibro and living a healthier lifestyle.
I believe I no longer have active Lyme and I am now just dealing with the permanent side effects of it going untreated for 2 years. I believe antibiotics have done all they are going to do for me and I now need to concentrate on dealing with my fibro and living a healthier lifestyle.
What (if anything) have you found/ done that has improved your symptoms?
I have significantly changed my diet. I’ve been trying to avoid all processed foods and cook from scratch as much as possible. While this hasn’t cured me, I do think it has made me feel better and healthier. I’ve also been doing yoga. Yoga helps me to stretch and relax my muscles so that in the long term, I experience less muscle pain and I still enjoy some of the benefits of exercising. I hate expending what little energy I have to exercise, but in the long term it does make me feel better.
What is the best advice you’ve received regarding Fibromyalgia?
Learn to say no. You can’t do everything for everyone; you have to learn to take care of yourself first. It’s important to not dwell on what people think about you, because there will always be someone who has an opinion on what you do or don’t do.
Learn to say no. You can’t do everything for everyone; you have to learn to take care of yourself first. It’s important to not dwell on what people think about you, because there will always be someone who has an opinion on what you do or don’t do.
What made you want to blog about your health issues?
I felt very alone when I first got sick. I couldn’t find a lot of blogs dedicated to chronic illness and parenting at the same time, so I decided to start one myself. It has helped me to accept my illness and provided on outlet for the frustrations that arise from living with chronic illness.
I felt very alone when I first got sick. I couldn’t find a lot of blogs dedicated to chronic illness and parenting at the same time, so I decided to start one myself. It has helped me to accept my illness and provided on outlet for the frustrations that arise from living with chronic illness.
What was the worst advice that you followed?
That I should just exercise more. I was already exercising a decent amount, and so whenever I pushed myself to do more I would find myself feeling much worse. There is no point in exercising if you are bedridden for two days afterward, it defeats the purpose, but it took me a while to learn that.
What is one thing you’ve learned about yourself since your diagnosis?
I can do hard things and I am much stronger than I give myself credit for. If I can live with fibro, I can do anything.
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Be sure to visit Shelley’s blog, Chronic Mom, and get to know her better.
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