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.

Sunday, 24 January 2010

Well finally got some answers....

...but none that were desired.


We have got a diagnosis that fits as well. I have been diagnosed with Hypermobility Syndrome. Sounds scary but all it means is over mobile joints.


I have had this since a child and I never thought anything of it, didn't know it was a Syndrome and definately did not know it can and will cause the pain I am suffering with, it has triggered SPD and unlike SPD which comes and goes for the rest of your life, Hypermobility Syndrome has no known cure and is a permanent life long disability.


Hard to digest right now when this morning at 4am my husband was rushed to hospital with chest pains and crushing sensations which thankfully turned out not to be cardiac but is caused by stress.


We have NO help, we have my parents but thats all we really have right now. Feel abandoned by family, and some friends. Feel isolated, alone, insecure, gutted, desperate and still we are trying to fight.


GP is doing all he can and he is doing well but right now we are suffering still.


Nothings changed yet.


Scared to death of asking for help for our stress and things, we feel after what had happened with social services and the accusations over our son that have just been proved wrong and are dead and buried we are terrified of them digging it all up again, we daren't confide in them about the help I need, my crying, my desperateness for pain relief as I am tempted to drink up my whole bottle of Oramorph Morphine just to get a break from this pain! 


As we know we are fit and caring parents and wouldn't do anything to hurt ourselves or our child but when we are stressed all they hear is 'stress', they 'cannot cope', best 'take the child' or probably accuse us again of being unfit, they never seem to want to look at the whole picture, examine the child why don't you, not a mark on him, happy and loved, and clean despite the poor souls environment, hardly what i wanted for my son, I started my own business to prove that one, I want the best for our son and my husband and yet they keep making me feel like a slave driver, a problem, a problem maker and lazy, what do they gain from this?


Well we have proved its all real and not in my head now! And I still need to see that Psychiatrist they said to do a check to see if it is psychosomatic, despite the evidence they have of hypermobility. What about a full check up? What about the stress THEY are causing ME, I sware I need a counsellor now, and if they continue people can only take so much? Where is MY help? Or are they waiting for me to naturally breakdown due to their actions so they can maliciously use it as a reason to justify the ex consultant who should be fired for what he said and the way he said it and what he did, to help him save his job and make the social appear to be doing theirs by taking our SAFE child away and then say, well we have saved so many children this year despite the ones who have suffered when:


They should be saying: We have ruined several peoples lives to appear to be doing our jobs and we prefer the homes we can sit and have a cuppa in!


Our social worker who investigated, and this has to be said despite how i feel above, did try and help me, they WASTED her time and i felt it for her, but the leaflet she gave me no one from the organisation worked to help over 16's here where i live. County Durham. (Not afraid to state county as something needs to be done).


Are they fixated on proving me a liar or will they start to believe me and stop us from being a prisoner in our home, living out of a suitcase, stuck downstairs with a 2 month old baby!


Still have no carpets and Freecyle banned me due to some nasty messages i got from their moderators and then THEIR OFFICIAL staff which i still have all because the moderator didnt answer a question i had about the rules, about what EVERYONE was doing with their e-mails and also about the post I made for charity, despite me having evidence it was for charity! 


The organisation themself still to this day don't care that I can prove my innocence and would rather scapegoat me than have to replace the abusive moderators of my local group! Is it easier for you? Well atleast I can sleep at night and yeah! Thanks for your HORRID COMMENTS ABOUT MY DISABILITY TOO!!!! Hope you all are proud of yourselves there at freecycle organisation, sounds you need to hire some new reps for the groups then maybe people wouldn't be treat like this?! But no, you think you are all so perfect and don't want to own up to your malicious actions. 


How much more am I suppose to take and be OK? How many times am I suppose to help people and be let down?


How many times do I have to speak out for HELP and be left with silence? 


What if this was YOU?






Stairlift:


We have our social services stairlift re-assessment tuesday, they already assessed?


Nothings changed apart from a diagnosis of a condition that can be proved and can back up my pains are not psychosomatic???


Still... WHERE is this HELP?!?!?!


DESPERATE here.......... losing faith in the world we live in and suffering all the time!