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.

Monday, 28 November 2011

DISABLED ARE NOT EQUAL CITIZENS:

WE ARE NOT EQUAL TO ABLE BODIED PEOPLE, WE ARE NOT WORTH IT:




I AM MORE THAN UPSET.


How many more rights do we have to lose as disabled individuals?


COURSES AVAILABLE IN MY AREA: are FREE for people on JSA, and ESA (those worthy as they are capable to work) but NOT disabled individuals or disabled charity workers or volunteers.


WE DISABLED HAVE TO PAY, FOR A COURSE THATS JUST MIXED CRAFTS! £3/hr, but when we are not receiving much in the form of benefits and are not able to work, how do we cope? This seems a small fee but it shortly adds up for those who cannot work, cannot improve their lives or financially progress.


How do we meet other disabled people or MAKE NEW FRIENDS?


In our area there are no DISABLED coach trips or meeting groups! (And especially not wheelchair accessible for any of the groups that do exist)


I am working to set up the first SPD support group, if i ever get my own transport since there is no DISABLED TAXIS, and the only transport available is for the town only.


THE BUS COMPANIES: SAY THEY ARE AIMING TO BE DISABLED / WHEELCHAIR ACCESSIBLE BY 2013! *fingers crossed*


THE CINEMA nearest to us has 3D screens that i cannot access because they are not disabled accessible, no wheelchair ramps, stairlifts and no lifts as its a listed building. Why no ramps?


The 3rd small cinema room they state will be made 3D equivalent by 2012.


Will our whole lives be waiting for the world to catch up to the fact there are still a minority (becoming a majority especially with SPD and underlying conditions being diagnosed on a rapid basis), still a minority that cannot access their services!


Apparantly all i have been working towards, freedom, the freedom people take for granted every day, i am not allowed to have. I have been stripped of my rights as a human being completely now and they may aswell have put a plan in to shoot all disabled people in wheelchairs, coz theres nothing left for us to live for, other than our families, which we are housebound and not allowed to do anything we are capable of doing, so we have been stripped of our abilities because of disability and stripped of the rest because of NHS, COUNTY COUNCILS and now Disabled Car Depts!


I am more than gutted right now.     :(


Whats the point of DVLA deeming me SAFE TO DRIVE if Disabled Car Depts wont let me?  (previously told me otherwise!)


Disabled Car Depts told me before i am eligable for a grant for a WAV, 1)im disabled in wheelchair, 2)have 24/7 carer and a son. 3)On higher rates of both DLA (which i wouldn't be on if i could work or be sole parent to our son) 4)on benefits.
YET the gentleman i spoke to today says i HAVE TO BE ABLE TO WORK or BE SOLE PARENT to be able to get grant for Wheelchair Accessible Vehicle from Disabled Car Depts. So im not allowed to drive and get the free lessons i was promised (under 25yrs) because I AM DISABLED.


AS IF IT IS A CHOICE!


He says i am NOT ALLOWED THE RIGHT TO DRIVE, by saying i have to be passenger and my husband has to drive me, when they wont give him free lessons because ONLY THE RECIPIENT of DLA can get the free lessons. DESPITE DVLA DEEMING ME SAFE TO. (i have spent 6months following what they said already, not to apply until i have provisional etc etc.)


My husband does not drive because i was the one that did the lessons prior to SPD in 12weeks pregnancy! And because i cannot work due to disability and because husband is my 24/7 carer we have no money to afford lessons. It's true!


ITS A PARADOX NOW.


HE NEVER SAID CRITERIA HAS CHANGED BUT IT HAS BLOODY CHANGED IF THESE ARE THE RULES NOW!


Dr. and DLA made us homeless at 35wks pregnant, its no secret!


When were disabled people 5th class citizens or lower? Were they ever equal to 1st?


SO WE CANNOT GET A CAR THATS SUITABLE FOR ME, YET THEYLL LET ME GET A Disabled Car Depts CAR I CANNOT DRIVE AND WASTE MONEY?!?!


ITS NOT ME WHO PUTS THE PRICES UP FROM £600 TO £30,000 JUST BECAUSE ITS WHEELCHAIR ACCESSIBLE!!! THATS PENALISING US! WHY HASN'T ANYONE DONE A STORY ON THIS?


(SAME AS TAXI'S, ITS £3.20 FOR A ABLE BODIED PERSON, MAKE THAT £14 FOR DISABLED-IF YOU EVEN HAVE DISABLED TAXIS AVAILABLE IN THE AREA!)


OTHER LOSS OF RIGHTS:
What's the point of council giving us 1 fire exit instead of 2 (WE ARE NOT ALLOWED 2 RAMPS, ONLY 1 BECAUSE WE ARE NOT THE SAME AS ABLE BODIED PEOPLE AND WE WON'T BE MISSED IF WE CANNOT ESCAPE, IF THERE IS A FIRE AT OUR ONLY EXIT) and wait 12 months for adaptations. (SUFFER FOR 12MONTHS WITHOUT ACCESS IN OR OUT HOUSE, UPSTAIRS, NO ACCESS TO LOO OR BATHROOM)


THIS IS THE 2011 TRUTH FOR THE DISABLED behind the scenes, whilst THEY PRETEND publicly to be an investor in people and help people. REALLY THEY ARE stripping us of our rights and making us suffer for 12 months without access to basic human rights like toilet, bathroom, upstairs just because THEY DONT HAVE a suitable bungalow.


WHEN DID WE LET THEM TREAT US LIKE THIS?


When did we let them make us live like this? Who will stand up now and say the truth if no one else will? i will. I have lost everything else and its not just me that suffers, its my husband and son. Do they deserve this too?

NHS: Treat us like scum when we have not been diagnosed, treat us like psychiatric patients just because we have an invisible condition, that they choose NOT TO TEST FOR and INSTEAD treat us with abuse, malpractice and lies on our notes.

And who are WE to take on a council? The NHS? The Disabled Car Depts? The GOVT.?

HOW can we?

We have been left with nothing but a lot of traumatic stories, experiences people pretend they already know about because they don't want to think about them?!

That people don't want to know because as long as they do not go through it they are OK. And when they do go through it are HELPLESS to do anything, because the LAW doesn't protect disabled people over the age of 18years, there is no legislation in place to protect us. Just a workbook known as no secrets workbook.

ALL THESE LIES ABOUT DISABILITY DISCRIMINATARY ACT, WE CANNOT AFFORD TO TAKE ANY OF THEM TO COURT UNDER THAT ACT OR OTHERWISE!

3K MINIMUM! Did people even know that?

THEY HAVE LEFT US NOTHING TO LIVE FOR!

BECAUSE THEY ARE NOT GIVING US ANYTHING BECAUSE WE CANNOT WORK, BECAUSE ARE IN A WHEELCHAIR, DESPITE WORKING AND BEING IN FULL TIME EDUCATION FOR MOST OF MY LIFE!

ONLY THIS IS NOT JUST MY LIFE! ITS THE LIVES OF MANY!

WHEN WILL THIS STOP? WHEN WILL THIS CHANGE?

I can only see it getting worse from here.... slippery slope system to dispose of those who cannot contribute to society just like the nurses pushing women to KILL their babies if there is a risk of them being DISABLED!!!

WE ARE PEOPLE, NOT TERMITES!


Disabled Car Depts: Cannot give actual name due to being a respectable blogger. All names, places and identities are kept confidential.


PLEASE NOTE: Disabled Car Depts have decided i may still be eligable because i do the charity work that i do. So there may be hope for me still.


However it is still really sad that others are still suffering and there are SO MANY situations we are less than second best! Less than fifth best!


We should be able to get more help than this!