Welcome to my PGP/SPD blog: Links and Info:



SPD is Symphysis Pubis Dysfunction.


PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)


I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.


The main websites I have found for you to look at now are:


The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

(This is a charity support group here to help you as a sufferer.)


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)



More websites you may find helpful:


NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.


Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


More info on SPD and a link to a support forum to talk to others about SPD.


http://www.madmums.com/GH_ShowArticle~HID~147.htm


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)


http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


SPOON THEORY:


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf



It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.


Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Awareness:


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)


We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.


Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!


Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk


(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)



Please enjoy my personal story in the form of a blog below.

Friday, 14 September 2012

Our miracle son, cancer, disability, SPD, Love and Family..

Help us someone...



Some one please help me, as i am suffocating from the system we have in place, a system in which is breaking me as a person as i am already broken as a mother as my son has cancer, this is such an emotional suffocation of hurt for my son and the wish i could change places with him, the hope, our miracle that is our son, can survive and the maliciousness of humankind that has shown its ugly head at
a time our family should be supported, not attacked, could be somehow hidden from our son, so we can protect him from it, but it is him that suffers with us.

We should not be investigated or have a child protection conference for a child that is already protected by my husband and i, and his grandparents.

I would DIE for my son, i would take a knife, a bullet, anything for my son to be able to live, even if for only a second longer than god has planned, because my son IS my life.

He IS our life, and they are all asking us to forget it is happening, put it in the back of your head, but how can a mother forget what they are doing to her son, more so than us as parents. I can never forget about my son or how they are forcing him to be separated from his loving parents who have never harmed him at any time since he existed and never will, and as a survivor of abuse, and i am lucky to be alive, i am more so than ever more protective of my son.

We do not want him to suffer or experience pain, we just want him to have the best life possible.

And this pain inside that suffocates me, doesn't leave with every tear shed, or every scream or sob, or the heartache expressed. My son has cancer. Nothing can take away the pain i feel for my son is going through hell and back.

He deserves better from the services put in place to support children. He deserves better from the nurses caring for him, and most importantly, from me, for bringing this amazing and pure child with a perfect heart and soul, into a society where safeguarding childrens teams and nurses who are supposed to be there to help, protect, etc, are the only ones who are damaging his wellbeing and his family when they should be able to see the wonders we see in our son, and we hope they will come to see who we are as people, as they don't know us right now, so we feel they should atleast get all facts before considering doing anything further to their investigation.

Assumptions have damaging consequences, and once acted upon, the damage will have already been done, even if they learn the truth.

All mainly because i have a disability which is misunderstood, and for those that said its not about me, its about our son, then why is my disability so widely criticised by speculation and misguided assumptions? (i didnt see my OT being asked to report on how she saw our son as a happy child cared for by his mam, but instead my disability ) and i am hurt as a result. Yes i will do everything i am told by social services, because my son IS my life, and no i wont discuss anything discussed in the child protection conference, not because i am not allowed, but because i will go the the ends of the earth to protect my son and i will never give up until he is back home, safe, where he belongs.

More importantly, i am disheartened that the very people there to help assist doctors cure my son, could hurt him like this and us so much through speculation and assumptions imagined by them... and as we all suffer and face their consequences, they go home at night, to their children, all fine and happy and well, and i dont know how they can sleep at night after what they've done.

My son is my life, he comes 1st, did so before even born, very much planned and very much wanted (not that thats important as long as the child is very much loved) in which he is and we just want him helped, want him alive, and want him to be safe in my arms, where i can keep him safe and know he is safe.

He knows i love him, and thats what counts. Who do others think they are when they make assumptions about people they don't know? And, when it comes down to my son, it comes down to my husband and I too, because we are a unit. we cannot be separated, perhaps by ignorance, naivity and the country's system, but not by spirit, love or will.

My son carries our hearts with him and we carry his, i feel his pain, i feel his suffering and it is so hard as a mother to see him go through hell and back with cancer... to suffer as he does. And still yet, despite all he is going through, he still paused and rests his arm on my shoulder, sensing i am worried about him and seeing gentle tears fall down my cheeks. He then says softly, "Don't worry mam, i make it better for you, wuv you mam" and he says this whilst staring me eye to eye in the face, gaze meets gaze and he smiles at me and that image is recorded into my brain and engraved into my soul as it is the most beautiful thing i will ever live to see, and i am filled with warmth and calmness as he passes me one of his comforters, known as one of his babies, given to me to cuddle. And with his tiny arms engulfing me close into him, despite all the tubes and sore wounds, and we cuddle.

At that very moment everything surrounding us disappears. As if it never even existed, and as we cuddle the tightest cuddle we can, despite both being in pain, despite everything, my son, at 2 years old, shows more love and compassion and understanding and comforting, than most people i know and he is wonderful, and it shows great strength, and great intelligence and love that my son at 2 years old can comfort me and hold me and make me feel better, just as i with him when he needs me to.

For that split moment my son and I share, that feels like a lifetime, we share this warmth and affection and nothing else matters, we are one, our hearts beat together and we breathe each other in.

We are in a completely different place, space or time to the rest of the world and the warmth that glows from my sons spirit reminds me that these 'professionals' know nothing. If they were right, he wouldn't even exist right now, and he reminds me of the good that does exist in the world, and is living proof that miracles do happen, and can happen if you believe enough and feel it's your life's purpose to be a mam, you just know in your heart, that you will deliver something remarkable one day, the gift of life, that's given by two loving parents who will grow old together. This is our very own miracle, and we feel blessed everyday that our son exists. That we knew he would and some things you just sense. Instincts accurate and important and is given to each of us as well as the gift of life, so please remember we are all people, and we all have families, and to treat each of us like people, like how you would treat your family. I know my husband and I do this, because we genuinely care and will help people as much as we can. Please help us to pray for another miracle.

Please pray for an important miracle, a very precious and hoped for miracle: the miracle of survival in which i ask of you, to pray that our son can survive this cancer, be alive into adulthood and experience life where he can be safe by our side, where most of all we can keep him safe, somewhere he can always stay.

Amen.

Thank you, and please believe as miracles do happen when you least expect them to, no matter what anyone surrounding us at this difficult time does; as long as our son's given the miraculous gift of survival, i dont care what else happens. As if i could trade places with him, i would in a heartbeat. There is a difference between putting children first (which were accused of not doing with our son, by the strangers that do not know us, in the 1st week of our son's diagnosis, where we sat by his bedside and made sure he was comforted anytime day or night) and there is having a child that IS first, was born a first, and will always BE first, no matter what people choose to believe, as he is the center of our universe, and there is nothing else more important than him. And if our love, care and empathy cannot be seen in such circumstances, then that's not our fault, as it is there and always will be, for those who know how to look.

DEDICATED TO MY SON, MY LIFE, MY MIRACLE, IN WHICH MY DISABILITY WAS SUCH A SMALL SACRIFICE IN COMPARISON TO, I WOULD DO IT OVER AND OVER AND OVER FOR HIM. HE SEES HIS MAM, NOT A DISABILITY. PERHAPS HE CAN TEACH THE WORLD HOW TO SEE PROPERLY. THEN MAYBE PEOPLE WOULD HAVE A HEART, FOR HE AT 2 YEARS OLD, CAN TEACH A LOT OF ADULTS, ABOUT WHAT LIFE IS ABOUT, WHAT BEING A PERSON IS ABOUT, AND TEACH THEM TO SEE WHATS ACTUALLY THERE, NOT THE COLOUR OF SKIN, NOT THE DISABILITY, NOT THE SEXUALITY BUT WHATS WITHIN, WHAT SURROUNDS US ALL WHEN WE ARE WITH PEOPLE WE LOVE. WHAT I CAN SEE, HE CAN SEE, AND MOST PEOPLE FAIL TO SEE, REAL LOVE.

Love you son

-mam and dad.