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.

Thursday, 8 October 2009

No cooker, no access to toilet, bath, shower, no help....

We went to view the council property today and we have accepted it as we have to.

We have no cooker and as it is a council house theres no carpets/wallpaper/decor at all, there isn't even lightbulbs lol but we can sort lightbulbs.

The council told me that they don't have any bungalows for elderly let alone for disabled and that if I sent my information to them about my medical needs the only houses they can offer me are two bedroomed properties in which all two bedroomed don't have downstairs toilets. So we have taken this two bedroomed property.

Only three bedroom properties have downstairs toilets and with the problems I have had I don't think I will ever be able to have a second child. I need to be able to look after my first and at the moment I need 24/7 care myself and life really sucks!

I am just worried and sick of all this verbal promised help and support and there isn't any at all. I phoned my O.T who is not available and her colleague stated she wouldn't be able to help me RE: stairlift anyway and then when I phoned Social services I already knew my social worker was not there from adult services and they couldn't help me either and whoever I ended up speaking to was saying that I am not eligible for a stairlift as my condition as severe as it is may only last two years.... 'only'? That has angered me sooo much, so they expect me not to bath or shower or have access to a toilet for 2 years when I have a child on the way just because this condition has sprung on me???!!!

I may have to hire a stairlift but they are expensive you have to pay for the full year in advance and it wouldn't be available for the stairs in the house we have gotten as the stairs are an 'L' shape and the hired ones are only suitable for straight stairs so yes I have been crying all night and I am still crying now.

We cannot afford to stay here, and I cannot get upstairs here anyway so it's homelessness route to a two bedroomed council house the same or it's we take this one and have a roof over our head but I continue to suffer.

How do these things just keep happening to us!!! They are completely beyond our control!!!

We are under 25 so not eligible for benefit help so have worked all the time even when I had endometriosis and unable to keep down a job I still managed to get through interviews and convince employers I was worth employing then got fired and vicious circle again. We have always been in private rented accommodation as we worked hard and I started a business, my husband was employed and now.... we are both unemployed through no choice of our own, I am on maternity leave and will need to seek advice and financial help on re-starting my business that is if I can even restart my business, and I am disabled in a wheelchair that could take up to two years, and all this happened at the worst time, just after I was 16 weeks pregnant with a miracle child we were told we could never have as I couldn't ever have children and luckily conceived on Clomid.

So yes they are expecting a pregnant married woman who has worked since 16 years old and went to college as well till 19 who started a business, who's husband has been and prefers to be employed to have NO ACCESS to a toilet or a bath/shower. Let alone give us help for a cooker??

What in the world are we going to do.

I don't want to be a friggin charity case and have to beg people to donate a cooker but what are we going to do?? The carpets and wallpaper can wait, but a cooker we need!!! How am I going to be able to eat properly for the sake of my unborn baby!! :'(

I don't know what to do, I am stuck in a non-self propelling wheelchair, in pain, helpless, alone, tired, my husbands practically an unpaid slave (at his own will) due to my stupid pelvic condition when he should be able to be a husband and have a life of his own and we have a baby on the way.

*sobs* I just want to be left alone tonight.... really, really depressed....