Sticky Blood-Hughes Syndrome Support

A poem I wrote early after diagnosis

Hi all

Don`t know if this any good, My fella and daughter say it is, so here goes.::

Hold My Hand!!!

What is this shadow trailing me?

It is so dark, it`s hard to see,

It follows quietly, with so much stealth,

Along it comes to steal my health.

I feel so helpless, my blood runs slow,

Another clot when? I just don`t know,

Why me I ask? I don`t understand,

I need someone to hold my hand.

I hear it`s call, the roaring in my head,

I close my eyes and I see red,

I know it`s hard to understand,

But please reach out and hold my hand.

The name of this is APS,

Does it hurt? The answers yes,

My plans, my hopes, my dreams,

Oh my lifes become a mess.

I don`t ask much, just that your there,

A text, a call to show you care,

I don`t expect you`lle understand,

I just need you to hold my hand!!!

Is just how I felt!!

Take care gentle hugs Sheena xxxxxxxxxx Jessielou xxxxx :-) :-) :-)

16 Replies

It feels like you have written this for me. My husband understands my condition but my sons 24 and 18 seem to not see the seriousness of the situation. Thanks for posting this poem. Warm hugs Mystynz.


Yes me too-quite an emotional poem that we can all relate to !! I feel that my family do not understand also - sometimes when I am in pain and feel so exhausted , I feel they think I am moaning and being a wimp - I try not to show the pain I am going through and to be honest I do not share my thoughts but sometimes you wonder whether they don't want to know or they do not understand and feel useless - I don't know - They still expect me to carry on with everything but I don't think they have noticed how weak and tired I have become - It upsets me that nobody asks how I am but if only they knew !!!!!


You have captured exactly the way ive been these last few months. Ive had 5 clots on my lungs since march and i feel as if i m just waiting for the one that kills me. I am well past the age for child bearing so after 5 miscarriages i thought my problems were behind me but obviously not. I have really needed some one to hold my hand thankyou


Super... and a real description of what it is like. Have you copyrighted it? Can we use it? I have to give a talk, and it would be great.



I agree wholeheartedly with your fella and daughter, your poem is brilliant and sums up exactly how I felt after I was first diagnosed 5 years ago.

I was thinking along the same lines of london-lass. Have you copyrighted it as I was thinking can't you ask Kate to print it in the Hughes Syndrome Foundation newsletter as it's too good not to be shared. Wonderful - thank you jessielou.


Sheena that is really lovely. I had a tear in my eye! You can always tell if something is good and has meaning if other people can relate to it and clearly most do, so really well done.

Copyright it. It could earn you a few pennies.


Brought a tear to my eye, so how most of us feel. Amazing poem, well done. x


It was very good Sheena :)

sad but true :(

well done xx



That;s beautiful. And not only for those who suffer with APS - but also for those of us around them that want to help make them better - but can't. My husband has APS and Leukocytoclastic Vasculitis, and it pains me to see him a shade of the man he once was physically. I wish there were support groups here in the states like there are in the UK - it's hard for me to express my feelings and utter dismay to others since they cannot 'see' his illness. And to top it off, I am an RN - used to helping people, and I can't help the one I love the most.


Hi milliken

thank you for your lovely comment.

I'm so sorry your husband so ill,

I think lots of our loved ones must feel like you. I know my fella does!!! Frustrated cos we can't be fixed. YET!! I have great faith in professor Hughes and others around the world working on making our lives better!!

But honestly just being there and loving is enough!!

Take care gentle hugs sheena xxxxxxxzz jessielou xxxxxx :-) :-) :-)


Hi all

Thank you all, so grateful for the lovely comments!!

As suggested have sorted copyright!

Welcome to use if it helps people understand our illness. very happy if you do,

Take care gentle hugs sheena xxxxxxxzz jessielou xxxxxx :-) :-) :-)


Hi Sheena

this is briliant and i knew once you got the bug you would start doing more and its from the heart which is what matters and people can realte to.



Your poem is lovely and very touching !!!

Had to hold my tears back -

Take care ! x All in this together- Thank God we can share our thoughts !! And we all understand what we are going through x


Write some more !!! You are talented and that poem was very comforting !!! You are a very supportive member on this site and very caring-I would like to print your poem off and frame it because I find it hard to express how I feel with this illness and this poem sums it all up in a few words-so this would be ideal for my friends and family to read ..perhaps I would not be laughed at so much when they realise how we are suffering emotionally and physically !!!!


Jessielou-Just had a thought !!! If you could write some more poems and have a little book of poems printed, I think you could do well- I would certainly buy one off you !!!

Well done - and I hope to see your name printed on a little book of poems one day !!!



Hi all

I am so glad you all like my poem. If it helps people to understand then use it. You are all welcome.

My nan loved poetry, she wrote quite a few beautiful poems, my mum and both my daughters write too. I have written some in the past but never had the confidence before. So thankyou all for the lovely feedback.

Take care gentle hugs sheena xxxxx jessielou xxxxx :-) :-) :-)


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