Megan is a sweet lady that I connected with in multiple ways before I realized, hey wait that’s the same girl! So, now we are friends on Facebook, G+ and Twitter, cuz that’s the way we role. I also started following her blog and got to know her a bit better there, and I definitely suggest that you do that as well.
When were you diagnosed? How old were you at the time?
I still haven’t officially got a diagnosis for my chronic pain, however I got diagnosed with pelvic congestion syndrome, chronic fatigue syndrome and chronic pain in October this year .I am 28 years old.
What lead up to your diagnosis (symptoms, Dr visits, etc)?
I’ve always had problems with fatigue but over the past 2 years there have been multiple events that have slowly reduced my health. To begin with I started having strong adverse reactions to my contraceptive pill. It was causing constant nausea, breast pain and dizziness. I solved this by stopping taking the pill. But 6 months later the dizziness and nausea had returned in full force. Nothing the doctors recommended helped it. In the end changing my diet for a challenge at the gym seemed to help, so I requested a referral to an allergist. The diet change seemed to have increased my energy and reduced my asthma and eczema until I woke up with extreme pain in my stomach early one morning in April this year that sent me to the emergency room at the local hospital.
What did the diet change involved?
The challenge at the gym followed a Paleo diet, which involves cutting out all dairy, grains and legumes. The allergy testing showed that in regards to dietary factors I was intolerant to dairy and gluten, so they are both out of my diet now, and a slight allergy to yeast which is impossible to avoid completely so I just try to minimize my exposure.
Since then it’s been a whirlwind of doctors appointments. I’ve seen 3 GPs, a consulting physician, a gynecologist, a psychologist, an optometrist, and an acupuncturist. I’ve been through a barrage of blood tests, eye tests, ultrasounds, CT scan and a laparoscopy.
Where did the eye doctor come into play?
I saw an optometrist because since about the 3rd month of being sick my eye sight was going blurry and double vision when ever I moved (driving, walking, etc) and as a result I couldn’t read and I stopped driving because I didn’t feel safe.
Did they find anything from the laproscopy? (or any of the tests for that matter)?
None of the blood tests or scans really showed anything, except that my cortisol levels were low to begin with. The laparoscopy showed I had varicose veins all over my uterus, which is unusual in someone my age who hasn’t had children. This is what led to the diagnosis of Pelvic Congestion Syndrome.
Were you working at the time?
I was working full time as the coordinator of Environmental Projects and Strategy for a local council and I’m still employed by them, however I’ve been on sick leave since the stomach pain related ER visit
What was your family life like (married? kids? etc??
I’ve been married 2 years, and with my husband for over 10 years. We don’t have children yet but our extended family lives close to us so I’ve had a lot of support from them.
How did your family initially handle your illness?
My husband and our extended family have been great about this so far. They are constantly doing things for me and researching what options are available near us for treatment/support.
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| Megan and hubby on wedding day |
How has your family/ work situation changed since Fibromyalgia entered your life?
As mentioned above, I’m currently on sick leave. It’s been over 6 months now and I’m not sure I’m anywhere near going back to work. They have hired someone to cover my role for 12 months so I have that long to work out what I will be doing .
In terms of family situation, my husband and extended family have taken on a lot more of the house work and have driven me to many, many appointments. They have been an amazing support and I could not be any more grateful!
What do you feel is the most challenging aspect of Fibro?
To me the most challenging aspect of this has been having to reconsider my future. This is something I have been struggling with a lot recently. The fact that there is no known cure means that I have no idea if I’ll ever be free of this pain and fatigue. I believe I can make a purposeful future but it may not be the one I’d originally planned for myself.
[Tweet “the most challenging aspect has been having to reconsider my future plans. @MegLiveKen”]
Do you believe that what you are dealing with is Fibro, or that there might be more to it that they just haven’t found yet?
I do believe that Fibromyalgia explains all of the pain symptoms I have been experiencing. I believe that I have both ME/cfs and Fibromyalgia, I’m just struggling to find any doctors here who are actually willing to make an official diagnosis.
I do believe that Fibromyalgia explains all of the pain symptoms I have been experiencing. I believe that I have both ME/cfs and Fibromyalgia, I’m just struggling to find any doctors here who are actually willing to make an official diagnosis.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have many coexisting conditions! Since a young child I’ve had asthma and eczema and multiple allergies. I also have ME/CFS and Pelvic Congestion Syndrome. The ones diagnosed this year tend to play off each other; usually when one is bad the other are bad.
What (if anything) have you found/ done that has improved your symptoms?
I’m trialing a few different things at the moment and it seems as though gentle yoga, acupuncture, Bowen therapy (and possibly Lyrica), reduce the pain levels reasonably well. Nothing yet has helped me with the energy levels and brain fog.
What is the best advice you’ve received regarding Fibromyalgia?
Listen to your body and pace yourself. Do not do things just because a doctor or a friend has said it will help, do your own research.
[Tweet “Listen to your body, don’t do things just because a Dr says to. @MegLiveKen”]
Listen to your body and pace yourself. Do not do things just because a doctor or a friend has said it will help, do your own research.
[Tweet “Listen to your body, don’t do things just because a Dr says to. @MegLiveKen”]
What made you want to blog about your health issues?
I needed to find a way to connect with others that were going through the same thing and to share what I was going through with the friends and family I don’t see as often. After having read other people’s blogs for quite a while without commenting I built up the courage to open myself to the world and share my story.
What was the worst advice that you followed?
Increasing exercise too quickly. Several of my doctors were pushing for me to do Graduated Exercise Therapy (GET) but I had done my own research and had read it could be extremely bad for you if you had ME/CFS. But, my husband seemed to be siding with the doctors so I started walking and swimming again on top of my yoga. I wasn’t doing much (5 laps of the pool over half an hour or 5 minutes walking) but each time I did it I’d end up back on the couch for at least 2 days afterwards. I’m still doing the exercise but instead of forcing myself to do it no matter how I feel, I’m pacing myself and doing it when I have the energy to spare after any other necessary activities like feeding and cleaning myself and going to my doctor appointments.
What is one thing you’ve learned about yourself since your diagnosis?
I’m more resilient than I thought. Since realizing this might not be a short term thing I’ve been brainstorming other ways I can use my skills and passions to create a meaningful life for me and maybe contribute to the household income. I’ve taken up sewing again when I have the energy, and I’ve started writing a children’s book that parents who have chronic fatigue and pain illnesses can use to introduce their children to their symptoms and explain why they can’t do the things other parents can. I’ve found a fellow sufferer where I live who is an artist and I’ve asked her if she’d be interested in drawing the pictures for it. I’m hoping it’ll be finished sometime early/mid next year.
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