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, 7 January 2010

*Dreams of the days to come* ...will be like winning the lottery.....



Hopeful finally...to be able to have a shower in our own home and use a real toilet in its own private room!!!
I cannot wait! It's gonna be like Christmas or winning the lottery!!! <3 YES!! I


Having got myself a caseworker from an organisation called Shelter, I am now feeling hopeful:


summary of conversation:


Apparantly due to my deprivation of much needed services, i.e. toilet/bathroom, and with being registered as a disability, and suffering for 7 months+, etc... I should have been awarded a stairlift regardless of any letter from any consultant before now.


They apparantly need to assess on the needs of the individual and how high the needs are in which a commode is not suitable for use long term and no access to a toilet/bath or shower is not again a long term solution, along with no access to upstairs.


I am not going to state anything that is confidential or important to the case but the caseworker will now write to social and myself and I am waiting for that to happen now.


If things need to be taken further they can be as well, so it is not a lost cause after all and sometime soon i may be able to see the upstairs of my house which is extremely exciting, as i have been in here 4 months already and don't know what its like other than on camcorder!


They also should have sent me a copy of the assessment which they have not and they wouldn't even define the criteria all they kept saying was that the disability needed to be long term and the physio cannot write to them, nor will the DLA award (official benefit for registered disabilities) be suitable and only a medical opinion from a consultant will do, which i feel all the consultant i have is willing to do is say it is likely to go which they have and have already been proved wrong, if they keep being proved wrong and are happy to write the letter as they are not responsible anyway as they use the word likely why can't they tell the truth and say it is likely to continue?


He (consultant) won't even see me now when i needed him 3 wks ago and have tried to make appt's as it keeps getting worse! Bet he hopes its all gone by 11th week hence why he's making me wait till then, but how can it magically sort if it keeps getting worse.


I had undefined/undiagnosed pelvic problems before, since i was 14 actually and even after diagnosing polycystic ovaries and endometriosis the pelvic pain (and times where i could not walk) would still occur but nothing like to this extent, to the extent i thought maybe it was period pains, but have found out it is not, so it is possible but i dont know if it was, that it could have been SPD all along, and if i don't have SPD then it could be the problem i had before getting worse whatever it is.


Either way, I cannot go on living with such deprivations, they are affecting all of us badly, me, my husband and my son, if I have to continue to suffer, my son is getting older and he will need his own room soon.


I know he is only 7 wks old now, but he is babbling, making sounds that actually sound like words now such as, 'yeah', 'ah', 'cah' etc, is in 3-6 and 6-9 months clothes, and is teething two large back teeth top, back left and right, and bottom front middle one small tooth. He is already established his 2 night feeds now and is just hurting teething hence keeping us up, and when we should be asleep i am in too much pain. He is doing so well and we are so proud of him.


Last night and early this morning i have been in so much pain. Had to overlap dose of morphine as advised by ambulance crew that came out and my GP is not even available until next week!!! I was expecting him to call as in phone this morning and no one must have asked him to which is shocking!


BUT!!! Now I am extremely excited at the possibility of having a shower, being able to wash my hair, in my own house! Being able to go to the toilet in a private room using a proper toilet, as i kept getting embarrassed in the living room i started using the commode under the stairs in the dirty, dark dusty cupboard until i wacked my head off the cupboard door handle trying to stand up and stood on a screw/nail.


Then it went back to horrid and embarrasing living room, no privacy, scared incase someones gonna knock on the door, are the doors locked, are anyone going to just walk in? Or any professionals expecting to be let straight in but I wouldnt want them to know i was on the loo either.


Absolutely dehumanising it is, degrading and horrifying.


So anxious.


Being able to see the bits of carpet we got given from relatives and friends for upstairs, all apart from babys room, stairs and hallway.


When we can move our bedroom upstairs we can finally also use the decorating vouchers and it can feel like a proper home, we can get carpets for kitchen and living room now too!


We can have proper space in our dining room for our baby to play and change etc!


I can stop living out of a suitcase with only minimal access to only some clothes.


We can unpack.


We can open our living/dining room curtains now!


We could even get a dining table and a travel cot.


Wow we can do all sorts and i can feel normal again and clean and a woman and happy and i can then be confident to leave the house in my wheelchair and go to surestart with our baby when weathers better.


I wont be scared of getting stuck upstairs and health and safety.


I can put pictures up.


Baby can have his own bedroom! Could give him the small room for now as it has a radiator now and his cotbed will fit in it! Till he gets bigger and his own big boy bedroom which can be his playroom... or vica versa!


We have so many choices now, I am so looking forward to being able to shower any time i want to now, (well with help from husband who's 24/7 carer).


I really hope this gets sorted, I can wear my nice clothes and feel nice enough to wear make up again and feel more like a woman and myself. 


It feels like I can start and be me again soon.... the suffering can soon be over!