PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee. Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site.
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(David) When were you diagnosed with fibromyalgia and when were your first symptoms? |
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(Minnie) I was diagnosed in late 2002. However, my first symptoms started as early as 1998, and then became more prevalent and frequent in late 2000. |
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(David) How has fibromyalgia changed your life? |
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(Minnie) On its onset, the changes were negative. I couldn’t engage in my usual social activities and I was getting sick more often than I was used to. It was a shock to me, having always been such a healthy person all my life. I limited myself even further using my “strangely named illness” as a crutch, which led me to be even more dormant. That was early on.However, in the past 2-3 years, I have to say that fibromyalgia changed my life for the better. It has given me purpose in life – to improve my own life and help others improve theirs by example of exercise, healthy eating and proper treatments.That said, while I still manage a fairly active and busy lifestyle– from having a full-time job to training for triathlons– I did have to make certain adjustments in my life to make sure I can work within my limitations. First of all, I had to make the huge adjustment mentally to be ok with admitting that there are just certain things I can’t do. For a type A person like me, it was one of the most difficult things I had to change (and it took a while). I limit the number of errands I run in a day, even if I have a much longer list of things to do. I spread them out over several days – which requires planning some things ahead. To ensure I get good sleep (in both quality and quantity) to accommodate my training regimen, I make choices every day that make sleep and rest a priority. If this means limiting my social engagements and having to cancel certain commitments, so be it. I also had to make a mental shift at work to not get as affected by stressful situations, which has helped me greatly. |
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(David) What motivates you to train for triathlons and half-marathons? |
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(Minnie) There are three major factors that motivate me. First and foremost, this was my promise with God – to turn this negative situation around into a positive one. I made a promise to swim, bike and run to not only help myself but to help others find hope in their every day lives. Secondly, it is my fellow patients that motivate me to get up and moving. I know there are people out there whose conditions have gotten so bad that they cannot engage in any kind of exercise. I can’t imagine the pain and suffering they go through, and I want to dedicate my races to them, while giving hope to others that anything is possible. I know that these endurance races are a rather extreme measure to promote the benefits of exercise, but I think by doing something extreme I can make a better point about what we’re capable of. (If I can do a triathlon/half-marathon, you can definitely go for a walk and see how you feel!) Lastly, my motivation is my own past. Four to five years ago I was drowning in self-pity, dependent on muscle relaxants and pain killers, spending a lot of my leisure time in bed, and was frequently missing work enough to make me feel concerned about keeping my job. They were some of the darkest days of my life. Now, all I have to do is remember those days to get myself moving on a tough day. |
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(David) How do you see PatientsLikeMe helping the fibromyalgia community? |
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(Minnie) Launching a community site for fibromyalgia on PatientsLikeMe has significant meaning. First of all, it adds to the recent recognition the illness has been gaining in the medical community. It is time for any discussion of this illness being real or not to be over and done with. Secondly, and more importantly, it has massive potential of being a crucial resource for patients that lack information and options about their conditions, by having every possible symptom and treatments laid out in one central source. Additionally, patients can and will find friends that understand what they go through (and we don’t have many of those, because fibromyalgia is still a foreign language to many people). Another amazing possibility is that this can be a great source for doctors, because knowledge and understanding of fibromyalgia among doctors can always be improved. This can be the perfect linkage between patients, their support system and health care professionals. I can’t help but be so enthused and excited about this endeavor PatientsLikeMe has set forth. They are bringing such a helpful platform of information and communication to the fibromyalgia community. Thanks!!!! |
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I was inspired by this article. I am a former Tri athlete, golfer and general sports participant. Since contracting Fibromyalgia I have sort of given up.
The depression, fatigue and pain make it difficult to even want to get out of bed.
Thanks for your story.
Good for you Minnie!