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.

Saturday, 19 September 2009

Social Services and benefits

With health professionals (midwives) scaring the sh*t out of me about how we will cope when the baby is born I took it upon myself to phone social services myself. I asked for help for now, told them our situation and everything.

They have been more than helpful.

My husband is now officially my registered carer, they have been out to visit us, opened up our world a bit by offering advice, support and cheaper transport options.

This is the adult section but they have said since my husband is going to be there most days as he is now the baby would'nt be defined as 'at risk'; there is no psychological issues etc.

Midwives are still commenting though.

It has taken me years to conceive and now I have, I have got SPD and my life feels like it has turned upside down.

They are looking into financial help as the govt. are not very favourable to couples under 25 who are married, and we live in a Private Rented house, don't get me wrong we have been trying for a council house for nearly two years now.

I was on ESA (Employment and support allowance) and because of one word 'contributions' we were not eligable for the surestart maternity grant of £500.00 that we really need. So social services are looking into a grant of £150.00 instead. Fingers Crossed.

Without getting into too personal of details I will be honest and say that we had been fighting with the council over council tax for just over a year, in which we just got sorted. However they are now wanting (as it took so long to sort) rounded off to £200 for september and almost £300.00 for every month thereafter council tax.

They told me over the phone I didn't owe any overpayments.

Had an overpayment bill, was that sick of it all we paid it in full using part of my health in pregnancy grant.

Little did we know my husband was going to be seriously ill for 3 weeks and end up with no income as he does not get paid when not in work as he is an agency worker for a local warehouse company. We have also been worried about him losing his job.

On top of that we have bills like everyone else.

I have phoned the Benefit enquiry line only to be made to cry, the gentleman over the phone said basically that there is no help for us and our only option if sh*t hits fan is to be homeless and starving despite me being pregnant and that they cannot 'make a benefit up just for me' not that I had asked him too, I phoned him as I was desperate for advice!!!

So as optimistic as everything is, we are just plodding along as best we can and have basically given up, we now have the attitude where they can take everything from us we don't care anymore, we have worked since 15/16 years old, both of us, I worked whilst going to college and what a waste of time college seems to have been for me as I could get more help if I just hadnt bothered!

Our banks running low and we are just hoping for my Maternity Allowance soon so we can meet Rent, bills and then hopefully food. We have been in problematic situations before due to the benefit system based on our marital status, age and lack of children as well as my past history of endometriosis in which I would have been on Morphine in hospital till 4am and still HAD to work at 6am of course I couldn't hold a job down...who could in that situation? (so have not worked a full tax year). So what's new? Who cares about this? No one!

I applied for DLA as I meet ALL criteria for higher rate and they declined me so I now have to appeal and have asked in my letter for a home medical examination. They said they thought would be ok straight after the baby is born, how I wish that was possible, not only do I have severe SPD I will also have muscle wastage too... how did they come to that conclusion? All i can think is that the physio that was dealing with me who only has experience with the common SPD which starts around 37weeks and clears up after birth will have stated about her literal experience and not taken my situation into account at all.

SO fingers crossed the appeal goes well as I am sending all the evidence I can find including a GP letter.

I was wanting to work as far up to my due date as possible with me start up business, and thats depressing alone... that I cannot do that!

We have no system of help when we need it, never have had, not us two anyway, so we have had no choice but to work, how can someone like me work at the moment??? I would love to and I cannot and I feel like I am being punished because I cannot.

I am glad I am keeping this blog as if things do get worse I want to be a case study atleast to help others if possible from not ending up in a situation like this!!! I wouldn't wish this on anyone!