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, 20 March 2010

Well atleast I made it to being a mam! But...disabled for life too? It was all worth it!






Well atleast I made it to being a Mam, but disabled for life too? It was all worth it.


I found out what made my SPD develop so early and made it so severe, I am disabled with Hypermobility Syndrome, some prefer to spell it Hyper-mobility Syndrome.


I am immobile and severely troubled with it, havin been rushed in ambulances the last 3-4 days too, and in ! and E 12+ hours...


I am now on 240mg morphine and trying Lyrica/Pregabalin amongst lots of other pain relief tablets daily.
Unfortunately there is no known cure for the syndrome and I will have it for life and it will only get worse.


Atleast it is not life threatening and I made it as a Mam, my miracle son, conceived on Clomid, he is here, he is beautiful and I enjoy him everyday of my life and he is spoilt, played with sooo much and treat lots, always has lovely clothes and clean and cared for and I wouldnt have it any other way, he deserves the best treatment in the world and we take him to our local surestart centre's twinkle time every friday and he loves it!


His dad, mu husband (and 24/7 carer) but more loving husband and loving father, adores him, he helps us sooo much so we live as much of a normal life we can until we get the much needed adaptation help we have been promised by social services and are still waiting for.


My husband and my son are my life, and once we get the adaptations, we can have routine and normality as the disability wont pose as a problem as we will never again be reminded of it by the problems we have without the adaptations daily.


So our life can be normal and we can have a good quality of life, but we are having to wait such a long time for the help, they shouldnt be postponing the ramps and grab rails until i get the stair lift as they are postponing the bath lift but that one makes sense, but i need the ramps and rails now!


Will be phoning to try and sort things this upcoming week as we cannot get any help on a saturday, only from carelink in an emergency and carelink are fantastic!!! FANTASTIC!


Much love to everyone/anyone who is reading this and if you suddenly develop SPD, get it looked into, do not be fobbed off by them saying it is psychosomatic without any psyciatry experience nor any grounds or professional assesments to go on, as i never had any help i was supposed to have as outlined by the NHS in the book given to first time mothers and on the internet.


We have suffered enough, we are making our life as good as it can be until we get the much needed adaptations.


My hubby treat me to a new wedding ring and it is beautiful, it says Love Forever and everytime i look at it i read that and feel happy.


We are loving this and cannot wait to grow old together, so many good memories to come, i know there is always bad right now we share, but we prefer the good as would anyone and we cannot wait to be old and sitting still strong, speaking of the good memories we have shared.


Love is bliss.


The other gorgeous treats I have now from my husband, to cheer me up and replace the wedding ring and engagement rings i had before that do not fit me anymore.


 (I gave them away to a dear friend as a present as she is one of my bestest friends and i love her like a sister). 


Here are images of them, the wedding ring image is at the top of this blog.






My new cluster 15pt diamond engagement ring, I have never had diamonds before and this is such a surprise and is gorgeous, I feel so blessed.
















This is my new Wedding Ring and it says LOVE FOREVER and everytime I look at it I know how lucky I am to be loved by my soulmate, the one person in the world that makes everything feel alright and safe with just one hug, the wrapping of his arms around me, snug, and safe, and warm, and protected.


The man who has dedicated his life to being my 24/7 carer to make my life easier, I owe him the world. I love him so much. He and my son are my life.






My 'MUM" ring, now I know I prefer MAM to MUM, as that is the word I have always known, but I accepted MUM in this instance as this ring is the most beautiful symbol that I can wear with pride, to remind me of my motherly love, at the worst of times, when I am in hospital without him, this represents the love my son has for me and I have for him. 


I have had a miracle occur, and that is my son, I have had a child. All those mothers day, passing, me sitting there sometimes in tears, sobbing, wondering when I can make a life with the person I love, the emptness was so huge and for so long, I waited, the quietness, I would stare around the house and imagine a little child, girl or boy with a huge grin, running about and playing, and wondering when I could have a child to share mothers day with, and a fathers day for my husband.


I finally had my first mothers day and we painted his footsies and have prints now, some show his skin creases and everything on silk like white fabric in black fabric paint and the others are on paper, yellow feet and some green feet lol then we did our hands, my right hand, husbands left hand, and baby's hands in the middle and two of them, second he scrunched his hand and the paints curly and its lovely.


It was one of the top days of my life and will stay with my wedding, engagement and the birth of our son, in our hearts.












My husband also bought me some really nice earrings to spoil me, it was a great day. 


I have a choice from alternative styled earrings that are totally me and some other hearts, stars, and pink diamonte styled studs too, so in total I have 7 sets, and it's nice to finally have the choice.






These are the others I was talking about.


Thank you for letting me share all of this with you and when I was in the store on the scooter I bought myself I felt like a princess choosing all these lovely things, we got the baby a baby's play gym too, so we can play with other things whilst being stuck at home in the living room.






We are just trying to focus away from the negativity and stress occuring in our life, and although we are struggling through still we have each other and it has been really nice to focus more on each other and stop the stress interfering as when we are stressed and  not coping well, in all honesty, we dont like how we are, and who we turn into, miserable and stressed individuals, so we have put a stop to it and stopped caring right now about anything other than what makes us happy.






In all fairness so much has been happening and causing misery to our life, although we had hope since we were awarded the adaptations, we are still NO further forward and feel let down, so we are focusing on each other.

Life can be good.

We just wish that they would do the ramps and grab rails now so we can stop being reminded of my disability so much and I am being forced to do things that are hurting me and making me poolie/ill. severely ill/poolie.

We need help.