Hello and welcome to my Marfan Page
My name is Vicky and over the
following months I shall share with you my experiences of living with Marfan
Follow me through my journey from
discovering that Marfan syndrome even existed, how it affected myself and
other members of my family and finally through me undergoing Aortic valve
replacement and the road to recovery.
In time I hope to have created an
educational and constructive site to enable all Marfan sufferers and their
families to access the latest information on Marfan Syndrome, and share
their thoughts and fears in our forum - so come on in - join the forum - ask
all the questions you want.
"Why won't you believe me?."
Its been a long
road the last 3 years and one that doesn't seem to be reaching its end. I
have coped with knowing that the illness that took my mother from me when I
was 18 years of age is part of who I am. I have had to make major decisions
early on in life to protect my health, like choosing not to have a baby. You
may think gosh this must be an easy decision to make when it can affect your
health. Believe me it is not, somehow I feel very much cheated, most of my
cousins and family have children and for me not to have any I feel very much
left out, like the leper of the family . I know that this makes no sense,
and I know that my family think no less of me for not having children, in
fact I know that they think I am very brave in everything that I have been
through, but it doesn't help when you are constantly reminded of the fact
that you have no children, family christening, parties etc etc. My choice
not to have children, what a laugh. I feel that the decision has never
actually been my choice, I feel that it was very much made up for me the day
my mother died.
The last 2 years have been the worst ones in record with regards to my
health. I can only hope that it is not a sign of things yet to come and that
the road to recovery is now within my grasp – but I fear that I may only
Most days my back and shoulders ache, I can actually feel it entering into
my bones, and my organs, spiralling its way through my whole system grasping
hold of me and shouting with ferocity” here I am, and I am here to stay, you
are not getting rid of me that easily with painkillers”. It is relentless,
only fading slightly once I am drugged up to the hilt on my daily limit of
tramadol and paracetamol, and then I feel like I am floating around the
It isn’t funny floating around the ceiling feeling sick from all the drugs,
knowing that you have to get dressed and go out. Not even to some where nice
mind you but, to the relentless appointments at the doctors, the Anti
Coagulant Clinic, the Gyni Clinic, ENT or the Heart unit. Every week, it
seems like it’s the same routine.
When I do need to go out I find that is best if I endure the pain and not
take the tramadol, otherwise, as I found out last week when a car nearly run
me over, if I take the tramadol on top of the other tablets that I am on I
cannot sense danger.
Even without the constant relentless pain that I now endure it hasn’t been
easy getting to this point in my life. I am only 36 years of age and have
already experienced so many things that most people never experience in a
lifetime. Somehow I feel cheated, disappointed and mindful at all that life
has thrown at me and at what is yet to come.
Don’t get me wrong I am not usually a depressive person; however I think
that I may actually be going through a bout of depression as I feel very
vulnerable and wary of everything and everyone. I find myself questioning
everything. “Do I really need to do that”, “Do I really need to go there”,
“Can it not wait I’m tired”. I think that I am trying to convince myself
that things are ok when they are not and in doing so I am not facing up to
what I have had to deal with especially within the last 3 years.
Hence, the reason for me writing this, both my father and husband feel that
by me writing down my thoughts and fears that maybe, it will help me come to
terms with everything and in turn that I may accept that I cannot always be
in control of everything and that sometimes we all need to ask for a little
Ask for help, that's a joke, I have asked for help in the past and feel very
much let down hence one of the reasons for the title to this story. "Why
won't you believe me?." All will be explained....
to be continued..................
We control Marfan Syndrome - it does
not control us!
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If you would like to share your story, air your
thoughts or fears regarding Marfan Syndrome, or indeed if you just wish to
ask a question, then please contact me at the email address below. I will be
setting up a question and answer page shortly. All id's will be kept
Enjoy - this site is for us all to learn, grow
and understand Marfan more. Help us to Help you....