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, 9 May 2013

I am NOT my disability...

I was in hospital recently and I am not well :*-(     *sobs*

This makes it much harder to cope with defensive and slight ignorant people who are supposed to help you!
I was tired and hurting and they were stressing me out no end repeating things we have already heard/read and already suffered through.

My disability is not me!

I am not being selfish by discussing it after all it is the defined problem that has everything to do with whether or not our child is to return home and perhaps I wouldn't need to talk about it if someone/anyone had asked me about it instead of just judging it/me.

Have they not discovered that assumptions are not facts and only lead to incorrect decisions due to being based on incorrect informatio.

Perhaps instead of jumping ahead why not put in writing in detail the issues and stick to them and not state more issues, once issues are resolved!

Perhaps also have a meeting with adult services and give them issues in writing so I can have needs assessment again, and parent our child with the eligible services I'm entitled to as a disabled mother.
Then all is solved and our child is home. But no, instead, keep adult serv's out of loop and penalise me for having a disability and not being able to be able bodied, but also being prevented from services that would resolve any issues presented.

Waste of court's time and money if it goes thus far.

 *prays for issues written down and stuck to, and prays for meeting and needs assessment again*

 Previous assessment included support from my parents, however child services does no longer allow (after needs assessment was competed, this choice was expressed, out of the blue) ...child services does no longer allow my parents as part of our support network, hence disagreement with needs assessment, yet keep changing issues whenever we resolve them.

I was told to my face early on, we'd never get our child home, it seems they are going to great lengths to prevent this! Why not just allow us the support we are entitled to by law and send our poor child, whom has leukemia, has had for a year now... send our child home where our child needs to be, and don't ever tell us my parents can't have our child a weekend now and then, they're the childs grandparents after all, and they reside very close by.

I hope this surreal and traumatic experience draws to a close soon, as I am a strong woman and I know my child needs me, or else I would be feeling as if I am not allowed to be disabled and the only way to get rid of a disability is to get rid of the person. Child services should not be allowing this to be the only option, as I am very concerned for the mental health and wellbeing of other disabled mother's who may be in this situation, again due to the lack of knowledge that child services have of disabilities. Hence they should be working close to adult services who have training and specialise in supporting disabled parent(s), otherwise we could well have disabled mothers committing suicide as the only option to have their child(ren) return home, in my case to their able bodied father.

We both have successfully cared for our child with the steroids etc, for at least two months prior to acting on wrong advice given to us by a member of oncology staff. Due to this, they admitted their fault and stated that the hospital assumes parents are aware of children with leukemia, and that they are not permitted suppositories. We administered one infant/ baby suppository and it lasted all of three seconds, we followed all of the information that was supplied to us at the time and we faced a very intense and detailed police investigation in which no further action is required.

There are lots of false claims written by the ex social worker that people are not correcting and are taking as gospel. In which we have no chance of having a fair and accurate investigation due to these issues. And some breaches of confidentiality.

We are being therefore penalised for something we were told our child was allowed, we were told our child "was allowed laxatives" and to expect this need as a result of his chemotherapy. We only had the info we were given to go off because we were told not to Google. I advise anyone in this situation to Google because hospitals never admit their neglect. All over the issue of money and reputation, I believe. Frankly, I won't sue no matter what, as all we want is a normal life full of our child's presence and every second our child is awake we will tend solely to the needs, as before, as our child is our life. This child is our miracle and we may never have any other children, and we are missing important milestones in our child's life.

 I feel as if a part of my soul has been stolen and in all honesty when my husband and I are at home it is so silent and empty, it as if and I hate to say this but it is true, it is as if our child is no longer alive. I sometimes find myself in the child's bed, sobbing into the cuddlies and I even sleep with one of the child's favourite elephant comforter he names twinkle as Mr elephant has stars on his ears.

Please let there be a God, and please let him hear our prayers and my cries.

- from a mother, reaching out for the truth to come out and our life returned from us, we will never be able to replace the lost milestones but we can create new memories and witness other milestones.

For my child, know that we love you so very much and I would do anything for you, and I wish I could trade places with you so very much. And I wish we were allowed to take you to hospital using disabled hospital transport so I could come to your hospital appointments most of the time, I'm so sorry child services will not allow this. Perhaps in the future if *hopefully when* you come home.

From my heart to yours, I feel your pain every second and I promise you I will spend the rest of my life fighting for you if that's what's needed. Because YOU ARE my life, and your daddy's too.