I just looked at my last post and realized that it was over a month ago. What have I been doing? Well besides normal day to day stuff, I have been working on THE DREADED LIST.
The most frustrating thing about our condition is that it is not only complex, but also confusing and overlapping. Take for instance, one of the conditions that many people with EDS-HT have along with the hypermobility, is that they often also suffer (or seem to suffer) from Chronic Fatigue Syndrome. Now, I went and looked up the symptoms of Chronic Fatigue in Wikipedia to use for the "list", and Nadine and I have every single symptom listed. One would think that that would be a really good indicator that we have CF, AND we have at some point in our lives both been diagnosed with CF. BUT do we really have CF, or, do we have so many overlapping symptoms from all the other conditions we have that it mimics CF, when in fact we do not? When people describe what it is like to have CF, the magnitude and quality of their fatigue and the flu like feelings they experience, Nadine and I actually do not fit that exact picture. That is not the type or quality of our chronic fatigue, and though we feel sick most of the time, and some times we say it is like have the flu, that has more to do with feeling under the weather and having constant pain in our joints and muscles, then it does with having the quality of symptoms people with CF actually live with.
Over the past month I have been sorting all this mess out, and writing and rewriting the list. I have also found that just writing a list of medical conditions in no way informs people of what our life is actually like living with these conditions. I mean, if I just list the medical term Orthostatic Intoleranc, that in of itself tells you nothing about what that is or what it is like to live with that condition, even if you take the time to look it up. So what I have been doing with the items on the list is to give definitions, often detailed ones, along with what our experience has been with said condition. This take time and often drags up emotional issues that cause me to have to stop and take a break from working on the list.
So, I am well over 3/4 done, and I am now doing a lot of simplification, and clean up. To say the least, the list is right now about nine pages long ...... sigh .....
The most frustrating thing about our condition is that it is not only complex, but also confusing and overlapping. Take for instance, one of the conditions that many people with EDS-HT have along with the hypermobility, is that they often also suffer (or seem to suffer) from Chronic Fatigue Syndrome. Now, I went and looked up the symptoms of Chronic Fatigue in Wikipedia to use for the "list", and Nadine and I have every single symptom listed. One would think that that would be a really good indicator that we have CF, AND we have at some point in our lives both been diagnosed with CF. BUT do we really have CF, or, do we have so many overlapping symptoms from all the other conditions we have that it mimics CF, when in fact we do not? When people describe what it is like to have CF, the magnitude and quality of their fatigue and the flu like feelings they experience, Nadine and I actually do not fit that exact picture. That is not the type or quality of our chronic fatigue, and though we feel sick most of the time, and some times we say it is like have the flu, that has more to do with feeling under the weather and having constant pain in our joints and muscles, then it does with having the quality of symptoms people with CF actually live with.
Over the past month I have been sorting all this mess out, and writing and rewriting the list. I have also found that just writing a list of medical conditions in no way informs people of what our life is actually like living with these conditions. I mean, if I just list the medical term Orthostatic Intoleranc, that in of itself tells you nothing about what that is or what it is like to live with that condition, even if you take the time to look it up. So what I have been doing with the items on the list is to give definitions, often detailed ones, along with what our experience has been with said condition. This take time and often drags up emotional issues that cause me to have to stop and take a break from working on the list.
So, I am well over 3/4 done, and I am now doing a lot of simplification, and clean up. To say the least, the list is right now about nine pages long ...... sigh .....
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