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, 5 November 2010

Headaches, stress and identity theft.


Headache after headache:

Small reflect on the situation:

I am now in a wheelchair and I have an underlying joint condition ( a genuine disability ) that caused my spd during pregnancy, i am now disabled for life and its all still really raw for me because its only been 2 years that i have been disabled and i have just got a counsellor who is lovely and i have not had that, its wonderful, BUT its opened the box of problems up so im very sensitive right now.
Whats going on with my life:

I try to be as strong as I can be and i like everyone to believe i am a strong person but those that know me know deep down, i have such a big heart and because i care, things do bother me.

I am grieving a past life and some deaths of people i care about,
I am wanting to be a better mother and my baby is a year old nearly and we need to organise for his birthday, and i feel he is slipping away from me because he is into everything and pushing boundaries but i cannot say no to him like my husband can, he can go over and pick him up and say no. But i am stuck sat there and it reminds me of the early days again when he was in the moses basked crying and i couldnt pick him up, i was helpless, when he needed me. He needs me so much and I am trying to be there but it is still really hard when all your plans of things you would do as a mother has been stripped away from you as you have limited abilities. Very limited.

I know i need to be in control as opposed to the disability but at the moment, the disability is in control of me.

There is no one to blame for my disability because it was hereditory and my mother has it.

Underneath it all my husband and I  (people forget he has gone through all of this as an onlooker) are both struggling to come to terms with the negative experiences of unfairness we both have experienced and more, and right now i cannot go to hospital because the notes wont be amended, and cut a long story short they dont believe im disabled (so i have to bring all my evidence) and as well as that, one abusive incident i experienced (all in a previous blog, i fell from a bed, they hit me with the door and prodded me) they lied to my dad and husband as true honest witnesses and said i was lashing out and had trashed the room etc but they both knew i had not and saw so. i was left on the floor that specific incident and i dont wish to go into too much detail as it is in all honesty so embarrassing for me.
All the incidents we are both dealing with here are very serious in nature, and we are terrified that we were not the 1st and wont be the last and many disabled people or spd sufferers are going through this!

Cut a long story short, if anything serious happened (life threatening) to me right now, i could not go into hospital because they would think im abusive and treat me bad or think i am not disabled and damage my pelvis or joints etc or let me fall and leave me, so we have looked into everything and the only option for us is to speak with a solicitor and take them to court to amend the notes so i can be treat with respect and properly like any disabled person/ young mother deserves.

 And i am scared!

I dont want to do this, my husband who has dedicated his life to being my 24/7 carer and cares mostly for our baby too, wanted closure, as did i.
And they wont give it and they are leaving me in a very vulnerable position.

Nobody wants to take anybody to court and everyone wants an easy pleasant life, well we do and we assume most people would!

Sometimes i am thinking, end it all, give your husband and son a good life! Because the problems with others are all surrounding this disability which is beyond my control!


BEYOND MY CONTROL being the emphasis! :(


I am in need of some good coping mechanisms....

I need to cope better right now...


I am having problems with the DPN, (disabled parents network) the advocate wanted to close my case over and over and well i guess she has what she wanted now but its left us without help when i have recommended them to over 600 members of my support group and was planning a charity event to raise a lot of money for them and the advocate would not even let me talk to them, the only time they ever phoned me was this morning to tell me she had got what she wanted and when i tried to tell her the things i needed to before, when she was trying to close my case in the first place, she accused me of arguing so i cried said your mean and hung up.

So now i have to retract all my recommendations as they refuse to help us, she obviously doesnt like her job is what my husband said. personally i dont know but maybe she is over worked, but she should have listened to our needs and what we need and helped us.

I phoned up and spoke to a nicer lady who should be advocate because she wants to help people and understands disabled parents problems, and she will be getting the advocates manager to call me next week but im not expecting anything other than, shes closed your case.

yes i know thank you shes ignored our serious needs and left us in a vulnerable position, erm thanks??


As well as that:

Some one used my details to set up an IT account, and from past experiences, we have reason to believe it could be my ex, so it has been noted to the police and we will take action to anything that may happen at any time in future, of course we hope nothing will.



SO much stress

 
I am going to try and eat today and have a cup of tea, and i hope to God i dont cry later.
The one thing i do have is my support group and i am proud of a few people who have come forward to help me help people by becoming a point of contact as additional officers :)