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.

Friday, 9 October 2009

Ok... so no help they lied... we're in crisis! No wonder society is depressed and suicidal.

Seriously considering swallowing whatever pride and dignity I have left if I have any left now, and go to the media... to let the media know what the system are doing to people.

I can see myself seriously ending up in hospital as no one can help us.

Because I have this disability that is SPD I need:

A stairlift = cannot get help for one cannot rent one due to financial situation and due to L shaped stairs.

The internet: Costing us £60.00 to move to our council property to avoid homelessness. (we have to do online shopping/banking/the only communication i have with the outside world etc)

The phone line for emergencies and the internet: £122.50 cost from BT as the council house doesn't have any wiring or a phone socket/access.

The key meter is no good as we cannot top it up due to my care so Npower were willing to change it for free as we have been customers for nearly 2 years but take 28 days from the date we move in, and they said the gas and electric are with powergen. The lady I spoke to was exceptionally rude and due to what she said to me today we are no longer going to be a customer of theirs for any longer.

Called Powergen they more helpful and they said that they could make me an account now as the property is empty and say I moved in there today to get me a credit meter for the 23rd when I move in the 19th due to my disability they have waivered the fees, bless them so someone is helpful in this society of sh*t.

The credit meter for the gas is not with powergen it is with british gas so we need to sign up to british gas today, which we havent yet as the following has happened:

We received my husbands claim for income support as he is not working and some of the questions he answered have been typed up incorrectly and some questions he answered they have left as 'unanswered'. So we phoned the number they gave us to sort the claim and confirm the move, this number was the job centres so the department that deal with the claim have got it all wrong. New claims on wednesday when we applied said it was out of their hands at the end of the call and we need to phone the claims processing dept.

Having phoned the job centre ( the claims processing number they gave us in black and white on a letter) they gave us an 0845 number to call instead saying it was the wrong number.

We phoned them, and they said the claim would only be declined as he is not eligible as my DLA has not gone through and he is not on carers allowance which he cannot get until my DLA is accepted (but they have no clue about severe SPD) and I cannot get it as I am on higher rate M.A £23.06 a week over what the govt. reckon a couple can live on, and he cannot even go on JSA as he cannot work as he cares for me and cannot get to the job centre once a fortnight without having to take me there and pushing me all the way in my wheelchair (only people in wheelchairs will understand the problems that we have with curbs, bumps, steep footpaths, no footpaths, weather, and traffic etc). If my husband went on JSA and did all of that he may not get a penny as it is contributions and I earn 123.06 a wk non taxable Maternity Allowance. So we would be signing on for nothing.

We phoned crisis loans, they keep hanging up on us saying they are busy.

We phoned DLA and a nice gentleman took over as I broke down over the phone worrying about my baby and the fact I will end up hospitalised if I don't get the help I am eligible for, and he passed my file (will refer to him as 'S') to the decision maker who needs more medical advice who is passing it on to a medical team that work for the DLA that they cannot give a time limit to. So 'S' has requested I call back thursday to see what progress if any has been made.

If they falsely decline me again I will just have to go to the tribunal and I'm panicking now as that will take longer.

We need for our new home also:

a cooker
carpets
stairlift so i can access bath/shower and toilet
money for food
money for rent for the council house
money for bills: gas, electric, water, council tax, home insurance, crisis loans payments, flexiloan payments, overdrafts interests and so on....

...and these things we won't be able to sort without any benefit help till we get back on our feet and back into work...

We have a baby due in 8 weeks if not born premature...*fingers crossed he stays in there as that would really be the cherry on top...*

On top of all this, there is my constant pain/agony! The fact I am now a useless painful immobile blob, depressed and the fact we have to move... so need to sort things out.

A friend I made who also has SPD severely has offered kindly for me to bath at hers and I feel so sh*t already and like a charity case, I cannot be dehumanised in my situation more. I am however extremely grateful that she cares enough to help us as such and I will have to take her up on her offer soon as I am so depressed now... and need the help. She has been fantastic, when there was no social services, o.t's or anyone to help yesterday she phoned me and we vented for about 2 hours nearly and I really appreciated it!!
She's a godsend.


So if you see me on T.V. as I have nothing left to lose or hide, spread the word about SPD and disabilities in general as well as benefits as people deserve help in general whether they work or not.

Just because I married someone under 25 too we were not eligible for working tax credits, so it looks to me girls like the government want you date older men to have the help you will need to survive outside of school even if you manage to get a job, unless you have lot's of children and a partner over 25 or bceome a single parent, which I don't think that it's fair we as women are given those options to survive!

....sooo desperate, down and confused and scared for my baby!