Help Needed From Other Spoonies :)

I’m all about the blogging this weekend it seems.

In fact, this is actually a request for help from other spoonies rather than the standard ‘this is what’s happening’ type blog.

The medical profession scares me, mainly from the previous visits to GPs and consultants  who have used the actual phrases “man up” and “well, what do you want me to do about it?”. I currently have a brilliant GP, but live in fear of trying to explain what’s going on with my body to another doctor or physio, or worse still a PIP assessor. (I’m far too scared to apply for a blue badge despite using the chair daily in case we return to “it’s all in your head”).

So, as a backup (and to stop medical people asking me to remember my whole medical history in a 10 minute appointment and do tricks like a performing monkey), I’ve been creating a mind map of all the dots I’ve been joining up.

If nothing else, it might help my friends understand a bit better what it is and what hurts.

Anyway, I’d really appreciate some input from other EDSers from a “is this a good idea?”, “have I missed anything?”, “have I genuinely lost the plot?” perspective!

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6 thoughts on “Help Needed From Other Spoonies :)

  1. My own mother and father have shown no interest in the mechanics of EDS. My husband and sons just know I don’t feel so good and am constantly worn out. I truly believe we alone can understand our pain, our weaknesses, and our struggles. I don’t mean to sound mean, but I just don’t think that those that “love” me really want to know the gory details.

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  2. Please forgive my earlier remark, it was harsh and simplistic. I understand the need to explain and for you to teach. I just have found, for me, it falls on deaf ears. That is probably a reflection on me.
    I hope your detailing how EDS has manifested itself in your life will give insight and understanding to others.

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    • No offense taken at all 🙂

      The original plan was actually to use it with the various health professionals who seem to lack understanding of how all these things are interconnected. It also helps me as a visual aid when I’m asked to remember every little thing in a stressful appointment where my mind will inevitably go blank.

      My parents are equally in denial, but I’m not taking it personally. It’s a generational thing where you either used your stiff upper lip to jolly well get on with it, or you were shipped off somewhere you weren’t mentioned by the family!

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  3. I think this is such a good idea! I don’t personally have EDS so I don’t know what doctors look for or ask about when you go in for an appointment, (and I am still in the diagnosis stage) but I noticed that a lot of doctors I meet with like family background as well. Like, family history of diabetes/heart problems/etc. You may have that list somewhere else or find it’s not important to your doc visits, but I thought I’d put in my two cents. I think I’m going to have to make myself a chart like yours, that really is a brilliant idea!

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  4. I am currently compiling a medical notebook that will include things like the letter from the geneticist confirming my Beighton score and my diagnosis. I was clear with him that I would never do the test again–it is injurious and painful, and like you said, we are not trained monkeys, we are people. I plan to keep it updated with my daily bp and pulse monitoring and such so that I am not caught out in this moments when a doctor rushes in, demands information, and rushes out. I think you’ve got a great idea and will be a helpful tool.

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