A Wasted Physio Appointment

I have taken to Blogger tonight because it's the only place I can turn to when I want to completely express myself, and my annoyance. I'm sitting in my bedroom as I write this. I feel discouraged once again after todays appointment. It was physio this time, & just as useless as expected. The physician's manner was offhand & rude. I didn't want to go there but my Rheumatologist insisted on it, I think she just wanted to pass the book because I am a Marfan/Hypermobility patient, something that she knows little about, neither did the physio though. She asked me why I was there & offered me almost nothing, which I had already anticipated. What I didn't expect though was her rudeness & lack of understanding. She told me to "Park up my health problems, & leave them there"! Apparently that's called managing, wow, why didn't I think of that simple theory?! I felt upset at the time so I didn't respond to her small minded comment, but now I'm at home I'm angry and want to go back & ask her how she would go about parking up Marfan Syndrome & it's related symptoms and leaving them there! If she thinks it's so simple I'd love to get some tips off her. If only I had been brave enough to ask her that before I left!

I only wanted a bit of professional advice from her but once again it looks like I'm left to be my own expert, something that you have to get used to when you have a rare syndrome that certain doctors know little about. The good side of that though is I've had to educate myself as much as I can & do as much research as possible, which isn't a bad thing because the more I learn about Marfan Syndrome, Hypermobility, and related symptoms, the more I can help myself & maybe even others. Whenever I have some spare time now I always go on the computer and pick up as much relevant information as I can manage. I would advise anyone in similar situations to do the same, so that next time you see your doctors, you go along armed with the appropriate facts.

While I'm on this subject I just want to highlight the importance of online support groups. My online Hypermobility/Marfan friends are the real experts, because like me, they deal with these problems on a daily basis. Without them I'd have nowhere to turn when I feel unsupported by certain medical professionals. They can often inform me better than some doctors because they can 100% relate to my symptoms, being part of support groups full of people who suffer in the same way as me is helpful because it lets me know I'm not totally alone with my troubles.

I'm nearly at the end of this blog now but I'm pleased that I've been able to use my experience with the physio to bring attention to my rare health problems. It's not a sympathy thing, I don't talk about this stuff because I want people to say "poor Lucy, she's got this & that wrong with her" I do it because there's not nearly enough awareness for Hypermobility, Marfan Syndrome, or other rare illnesses. Even the doctors don't have enough knowledge, so if I can bring focus to it by speaking about it in my blogs, then maybe it will make a few people want to learn more about it, which will then hopefully raise more awareness..   X

How I feel About Marfan Syndrome...

I said last time that I wanted to discuss Marfan syndrome in my next blog so I should start by explaining what that actually is. Marfan syndrome is a rare connective tissue disease that only effects 1 in every 5,000 people. In most cases, it's passed on through inheritance, meaning it runs in the family, but a very small number of people have got it spontaneously, this is called a spontaneous mutation & means there's no family link, strangely, I happen to be in that category and I was diagnosed after suffering many health problems throughout my childhood. at the age of 13 I developed scoliosis (a curved spine) and needed major surgery to correct it, which then led to further investigations & that's how my Marfan diagnosis was discovered, although it wasn't quite as quick & easy as that, it took the doctors a few years to finally put a name to all my troubles. Marfan syndrome had a lot to answer for!

Being told as a teenage that I had a rare & serious syndrome that only affects a small number of people was hard news to take, I realise now that I dealt with it badly at the time by refusing to talk about it. I didn't want anyone to know & that was because I thought it was easier to ignore that way. I pretended I wasn't bothered by the news but secretly I was kept awake at night by the doctors words. I clearly remember sitting in the doctors room with my Mum as she explained what the syndrome meant, she told me it was life threatening & said I'd need to go for all sorts of other tests, as if I'd not already had enough after all the examinations before my surgery! I left the clinic that day feeling abnormal for having yet another illness that no one else could relate to. I felt angry & shocked, angry at life for singling me out once again, and shocked that all my problems where the result of something so serious.

As the years have passed I've accepted what's wrong with me & I deal with it better now, partly due to the fact that I speak to other Marfan's online who are in very similar circumstances, and partly due to the fact that everything became harder to ignore when my symptoms worsened.My mobility has deteriorated quite a bit lately & I can't walk far without needing to stop due to aches/pains & tiredness. This is because my joints/muscles are weaker than normal so my body gets tired easily. I suffer with widespread pain everyday though weather I am walking or not. Then there's the problems with my back caused by loose & protruding screws but I'll save that for another time.

My family are very supportive & understanding but I don't think they know that I often feel isolated, it's hard not to feel like a small fish in a very big pond when nobody around you can relate to your unusual health problems. A few people might know the names of my illnesses such as Marfan syndrome/Hypermobility, but hardly any of them actually know what that means, which makes it harder to talk about if I ever want to. The photo I've added is a card that I carry around with me now, just in case I'm ever in a position where I need to explain my health troubles. It sums things up perfectly.
I think that's it for now. I hope my ramblings haven't bored you too much... X

The Critique of my Marfan Physique.

Written in response to the unwelcome yet frequently made remarks on her strikingly slender physique, Lucy’s piece will resonate with many ...