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, 28 February 2010

...and i thought it was all over...

..I havent wrote in this for a long time as I have been struggling to come to terms with the fact I am now disabled for life.


I have hypermobility syndrome and I keep seazing up and cannot move, we now have carelink. (this caused my severe SPD)


Something traumatising happened to me at a local hospital to the extent i have to vent about it, i need to talk about it and i need to get over it!


(update urgently, i have just heard an answerphone message from the dr stating her name askign if my husband can come to a and e as i am being violent and aggressive to members and staff and the public and can he come urgently please, i hope they have cctv please God let them have cctv!!!)


Phoned the police and they said i need to complain directly to the hospital...so I am going to do that, I notified icas and p.a.l.s. already and just waiting for some help...


How can she do this to me??? I was immobile left on the floor screaming for help...... i am shaking, i just want to be left alone and she has me crying again...

















What happened?

I was rushed to A and E as i have hypermobility syndrome and carelink had come out to move me and couldnt as i was in severe pain. At A and E I was left on a bed and found i could move a little with gas and air like i had at home to get to the chair for the ambulance. I was dizzy and still in pain and thought i heard my husband/24/7 carer... anyway i fell off the bed.

I was on the floor a man saw this happen, nurses and dr came in an i moved a little to hold to the rail and they said i should get onto the bed i said i couldnt and the gas and air wore off i immediately fell heavy and hurt and fell cheek down to the floor, i could only see feet, they started prodding me and hitting me with the door in my right arm saying if you don't get up we will continue to hit you, i said i will put in a complaint if you dont stop, as i am disabled and i am, severely disabled, immobile and wanted my carer and said i can never get up, the dr said that i am 22 i am lying i am perfectly fine and can get up myself and i disagreed and she said she would complain about me then she accused me whilst i couldnt even move my arms!!! 

she said i was lashing out and being abusive even though i have masses of evidence from june and july 09 to prove i have been immobile for 9 months march, I sware and will sware in a court of law I never harmed anyone and did not deserve what they did to me.

They said i was seeing a psychiatrist and i said yes theyve proved its not psychosomatic and im in severe pain and have hypermobility syndrome, dr said so have i, im getting the police now (my name here) and im getting security, your being abusive, i said get the police make them come here i need HELP! I was left approx 40 mins in that position on the floor, she phoned my mam twice said i was ok, dad and husband came she told them i had trashed room an lashed out, dad hit me with door by accident as dad/hubby didnt know i was there and just took me home, knowing i was telling the truth, room was fine and the police that were there dad asked. they said theyre not here for me and they took me home! *sobs

During it I had asked for my husband, they shouted at me "he has a baby to look after" I shouted back " I know, thats my son you're talking about!" "That's MY SON!"

I was hysterical after being hit with the door and left on the floor, I think anyone would be and I hope to God, as I am a christian that they do feel ashamed of what they have done!


what i liked:



Dad and husband who is also my registered by law 24.7 carer finding me on the floor after screaming for so long and helping me up into my wheelchair from home and taking me straight away out of the hospital. I am traumitised and will provide any evidence i can in a court of law if they decide to act on this which i dont think they will as they lied.




What could have been improved:?

They should have believed me even though I am young that i am disabled. They should never have used lies and bullying tacticts as they thought i was a psychiatric patient when i was and am disabled and will and can prove all of this in a court of law, they lied about calling the police to frighten me to stand up and lied to my dad and husband and i just wanted to die. I was on that floor, im not coping with being disabled this young as its only been 9 months as opposed to life long and if there had have been anything i could have done i would have done it to end the suffering they put me through. I have physical non visual pain from being hit with the door and dad hit me full force by accident entering the room to run to my screams for help and thats how hard they hit me. I have never been in a situation like that in my life, i kept telling the dr and nurses to phone social services a specific name i gave them, to prove i was disabled and not lying.... ok so maybe they thought i could move or that they could lie as i was a psychiatric patient but truth is they were wrong as i am not a psychiatric patient n was screaming and crying due to pain. They said they cannot lift me as theyd hurt their backs yet they never got a hoist they never believed me and they said i wasnt allowed gas and air until i got onto the high bed, i cannot even get up stairs. and i needed the gas and air to get onto the bed, but never could get onto high beds. they should have read my notes and allowed me the gas and air that i needed.


Also:


I have to now live with the above happening to me.... I may tell social services tomorrow, Monday as I have a meeting about my stairlift then.

I feel they should know how bad I am.... I mean I am currently suicidal from it all and my DR/GP knows and my husband / carer for life and bestest person in the world is helping me thorough but if that happens to me again, i don't know if i can cope.

They should feel ashamed.


The MRI incident:

AT the same hospital as mentioned above!!!


"im hurting the lady that worked for the NHS deliberately lifted the back of my wheelchair up high by the handles and smacked it down saying 'for goodness sake' as she took off with me when i didnt want her too and had asked her a second time politely and calmly could i please wait with my husband while he fills in the carers form (the one he should have been given anyway) she has made me immobile now and she hurt me sooo much i couldnt do the spine mri scan and was crying through the pelvis one. 

Tried to make a complaint about the physical non visual harm she had caused as there were many witnesses but the receptionist gave me wrong leaflet. 

Additionally on the way out, tearful and polite i told her quitely and calmly she had hurt my lower back she looked at me and tutted loudly and rolled her eyes as if i was a kid being naughty, no apology for the abuse whatsoever i liken it to if i had deliberately smacked her in the face so why has she been allowed to do that violent abuse to me. She should have read my notes, i mean i was in a wheelchair anyway! 
she didnt care she had me screaming and in tears in the waiting room either... 

she had no right to attack and hurt me physically like that or take me away when i was unwilling, just because i cannot walk does not mean i should be forced somewhere which was pointless anyway... as i would have needed Rob anyway and his help, and because i asked her twice nicely to take me back thats the abuse and violence i received, she was from darlington hospitals MRI, many witnesses and i have her name. 

Never have i been attacked like this by NHS staff, ever!"