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, 24 September 2009

Why are they allowed to speak to you like that?

Are people that work for benefits departments just trained to make you cry afterwards?

This is not the first time I have experienced inappropriate comments and attitude when I have been on the phone even just enquiring about benefits, I just wish I had the guts and energy to stand up for myself to them... I find myself politely debating with them as opposed to actually saying, "well that is not for you to decide is it?" or even "I didn't phone you to take abuse or inappropriate comments, I phoned you for appropriate advice and help not your opinion."

I phoned DLA to let them know my pain has gotten much worse to the extent going out in the wheelchair is now a problem and told them I am on Clexane, the lady I will only refer to as 'S' was extremely unhelpful. She said she can only put forward that I am on Clexane and not update my information in regards to my immobility and she was making comments like "I hope you are not relying on getting this benefit as if I were you I wouldn't get my hopes up!" and her excuse/reason was because she had been in a situation when she was pregnant before. She couldn't understand that SPD can be caused by pregnancy and will last after my pregnancy nor that it can also occur in non-pregnant individuals. Her conclusion was that because I didn't have the disability before I was pregnant it can only be defined as a pregnancy illness and not a disability so my appeal won't help.

She also said I won't get a home medical visit despite me asking for one as well as supplying a letter from my GP and my consultants details.

She was getting a lot more involved than I feel she should have by even trying to work out my 3 month period and adding my 6 month period (eligibility rules) to say that I am not eligible anyway as even if it were defined as a disability which it is her opinion that it isn't, it wouldn't matter anyway as the eligibility months April next year.

She then reassured me, if you can call it that, (knowing I was sobbing in pain and stressed and 30 weeks pregnant which she was extremely uncomfortable that i said 30 weeks and said about 7 months then? ..as if I was making her job difficult by saying that) by saying that it will take several more weeks anyway for them to even look at it and then I will probably have to appeal again if i want to and it would go to a tribunal.

Shocking I know but they don't seem to think so.

I phoned the job centre and spoke to a lady I will refer to as 'S2' she was more sensitive and tried her best to help me, unfortunately we are not eligible for anything else as my husband is under 25. She was great though and her opinion was that if she had some spare cash she'd pop round now to help me, she couldn't believe what we are going through and I kept apologising for putting her in that position in regards to finding out what to do, she said it was her job and she is sorry she cannot help further. She suggested I call M.A for a payment advance as I cannot get crisis loans as we're paying two off (been here before due to the 'age' discrimination the system has) and gave me Citizens Advice's number. 087 number :(

I don't want to run my phone bill up anymore especially after the DLA and in all honesty I doubt the DWP would pay my M.A in advance as it is against their rules and system...exhausted.

I guess it comes to something when we work really hard and want to work and unemployed people (for whatever reason) are able to purchase new things for their babies from the grants etc and we who are working and trying to make our life better cannot even do that and have to watch whilst they have the luxury of doing that.

I e-mailed the council and filled in an online claims form too, so I have done everything I can at this time, I don't know how we're going to pay £400.00 rent AND £195 council tax this month!!

We can cover rent and bills if my M.A. is paid on time but what can we do about council tax??

We will just have to sit tight and see what happens now, but I am too ill and immobile and pregnant and stressed to be able to move home....

Looking for a miracle, anyone know where we can get one for free?