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.

Wednesday, 9 December 2009

Update: Physio, wheelchair, registering birth, pain, meds, health visitor etc

Well right now I am on lot's of morphine. 2x 10mg of morphine slow release morphgesic tablets in AM and again in PM can be increased to 3 AM and 3 PM if needed and 4x 5ml of Oramorph allowed every 4 hours daily = 40mg Morphine.

I have had to stop breastfeeding to do this when baby was 14 days old and it's really got to me, had plenty of tears and just gutted, miss it sooo much... BUT I am more use to baby like this as it allows me to be a little more mobile sometimes. Mainly I am completely immobile and my pelvis is constantly locking up but atleast morphine is helping.

I cannot lie on flat surfaces and had to sleep on sofa for ages! I am only just in bed now by piling lots of pillows up and i mean 7 pillows in total and another one making it 8 cushions that goes under my knees.

My pelvis still locks as I have not had my O.T visit yet and the pillows keep falling over etc... so i need something else to aid me with the bed height or I am stuck immobile completely and cannot even use commode or end up stuck on sofa.

New health visitor:

Luckily our new health visitor is a nice lady, however she is defensive against my ex midwife and simply doesnt understand how unprofessional, offensive and aware that she is upsetting me as I have told her over and over again to her face and she still continues, that she is. (she said that it could have been my fault and that we may have clashed etc)

We have found health professionals are all too happy to diss us/blame us and things and allow such behaviour and malpractice to continue but are not too happy to help solve such problems or suggest PALS or any help or complaints dept, as if they actually condone such behaviour(s) and actions.

Our health visitor stated "I heard that you don't want me?" I said she must of heard that from midwife as I just said I am sick of people being in and out of my life when they are supposed to stay in my life for a while, and being passed from pillar to post like a parcel! Which I am.

I merely requested that the previous health visitor came back to us as she said she was going to be with us for 2 years. My midwife even kept saying that "she was never assigned to you" when we were told otherwise.

Just while I remember my midwife has robbed us of the opportunity we had to get healthy start vouchers whilst I was pregnant too, (Just what did she actually do? She just upset me all the time and never did her job!) Anyway we got an app form from the midwife and we have applied.

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HAPPY DAY:

We registered our baby's birth on 3.12.09 and it was a memorable and happy day.

We did end up talking a lil' about the way I have been treated and my lack of faith in Drs etc now and the lady that did the birth cert. had some horror stories to tell us too, she saw a top consultant that could have killed her had he put her on medication he was going to (not going to explain the details as it is not our story to tell but yes the meds would have killed her) and when her partner spoke up about it the consultant ripped up the prescription and refused to discuss it further.

We have come across so many horror stories associated with SPD and now many not.

Anyway, we thoroughly enjoyed registering the birth of our son and we were extremely proud to confirm his name, the name we had prior to his birth :)

About time we had a nice day! Shame I am constantly reminded of my inability to walk as it was hard to move around their offices and lift etc in my wheelchair.

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Wheelchairs!

I phoned my old hospital O.T and got the number to change my wheelchair, having tried to get in touch with the Red Cross all day and leaving several numbers and trying to get through to the NHS wheelchair dept I was about to give up as that number was busy.

I phoned O.T dept again and thankfully got a different number for NHS wheelchair dept, which were VERY HELPFUL and sorted out a self propelling one which will help sooo much for next week, to replace my old manual wheelchair that needs someone to push.

I appreciate it always when we get some help and it is such a nice feeling when a dept. actually helps you and is polite, friendly and understanding. Very happy with that NHS dept. Very happy.

Cannot wait to have more independence when I receive my new wheelchair.

The helpful lady even said if i have any problems don't hesitate to call them! :D

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PHYSIO:

I saw my physio yesterday and she was fantastic!

She said she cannot help me until we know for definate exactly what is wrong and was shocked to find I was left like this to struggle with a baby and that I had not had an MRI scan, a gynaecologist or a professional to help me or diagnose me.

She also knows the physio I keep asking for a referral to and I have given her permission to talk to him and my GP.

SO i am now hopeful and finally got someone who is polite, friendly, approachable and I feel like I can trust!