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

.. have just fallen.

Well, I was OK,


I have just fallen, and really hurt myself, severely, and I am on sooo much meds already.


My husband was taking a shower as I was on this laptop sat on the settee and the baby was fast asleep in his cotbed, and he wasn't going to be long.


My mobile rang, I tried to do what I get help with, but due the lack of promised GRAB RAILS I fell over, knocked a stool over, nearly broke my plaster hand jewellery holder that I am painting and was a present from my husband, and I grabbed onto the bed (all this is short distances away from each other as we are forced to live in our living room still. I used the bed to pull myself up from the floor and grabbed my phone which was on charge on the other side of the bed where the sockets are.


It was my grandma, my great. grandad whom i love sooo much and really care about is still really ill, having been in and out of hospital I don't know if he is out right now or not, she was trying to phone my Auntie instead, she asked after baby and i briefly spoke to her as she had to go.


Husband came down and helped with everything else.


I am so fed up of hurting myself in doors and NO RAMPS for me to use my scooter to drive out, so I fall or hurt myself stepping out of the house (little step as opposed to stairs) and I shuffle out but it hurts sooo much!


When will we get the ramps and grabrails THEY HAVE nothing to do with the getting of the stairlift so I can understand the bath lift being postponed but these could be placed BEFORE the stairlift, which I get ANOTHER assessment for it by the SAME O.T. in APRIL!!!!


The only difference being is a gentlemen from a specific company is coming to assess.


I am fed up of them making this about baby too as they are being ridiculous now, they say our baby is in danger being near the stairlift and we cannot but a safety gate at the bottom or top of the stairs.


I say solution is easy, we are good parents, we are not stupid, I have serious qualifications and OH remember that assessment from child social services themselves???


We put the baby gate in the corridor and we watch the baby upstairs and have safety devices in place for every room, there are doors on the rooms and simple things like putting handles upside down can be done.


NON-Disabled parents/single parents would face same issues, as stairs alone are dangerous incase falls happen.


So why attempt to stop me from getting a stairlift with stupid IFS about our son??


They say that he needs a little rail as children need to be independent and be able to climb the stairs on his own, YET they are pushing us to still have a bungalow,


OK, so lets talk about baby, there are NO STAIRS in  a bungalow so how is he going to be independent?


From what they say about bungalows anyway as you can watch babies easier, that would mean all single parents would be bad parents unless they had a bungalow and that makes no sense.


Right now he is near ducks, swans, a lake, geese and a shop and a school and families with young children, with easy walking distance to the town. With 5mins away distance to his surestart centre, twinkle times every friday, they want to stop him having access to that? Where all child services occur?


They want to change that so he is in a society full of elderly people? Possibly away from town, definitely not near a school or the lake, and we are near the school i went to as a child and would like him to go there.


They are ignoring other things too, like the fact we have friends and family around here, near the surestart centre as already stated. We have bills to pay from moving in, the BT charge for putting a landline in, £122.50, still owed, the amount to pay as SKY services lady cancelled our sky talk without my permission then hung up on me so i had to phone and they said NOTHING was cancelled, so BT has took £80+ from us as they covered the few months instead, when we thought we had free calls.


BT still hasnt sent us the itemised call list to send to SKY to claim that back, plus issues we have had with gas and electric an change of address??


Royal mail charge PER name!! So we would need 3 name changes, my husbands, mine, my businesses, actually 4 now as some send things to Baby for some reason in his name....


And we would have to notify several places/people including carers associations allsorts.


I cannot cope moving anyway as I cannot do what i could before, and its hard to even pack, and we have bought decorating wallpaper and things for this house now too.


PLUS several hundred other reasons that WE CANNOT move, we dont want to move, we cant cope moving....






YET they keep making us out to be bad parents by making up actions we would never do that would put our son at risk in association with the adaptations we have been promised.


Its ridicuous, and we are sick of it.


If it continues we will be forced to look into changing our O.T. she is the same one that ignored all my needs, wrote what was NOT happening (false information) and harrassed me so much to sign it, I kept saying NO.


She then asked again over the phone hundreds time too before, I said NO, and explained facts in regards to my disability and explained that at that time I was suicidal and i want to be taken seriously and the documents lie as they say I can do things I can not do so by signing them it will make my life more difficult and worse as its all false!


She said the commode could be a life long solution to not having a toilet, she said i could have a bed bath or strip wash (cannot do that due to positioning and immobility) cannot wash my hair at all!


She said lots of other things, so after i sobbed down the phone to her, will call her C.S. she just said will talk about that when i see you tomorrow.


She came over with another person NEVER talked about any of that and tried to force me to sign it again, and having explained to her all the facts that contradicted everything she had said, she said to me, which cut me up to the extent my head got heavy and i had an adrenaline rush and wanted to scream and cry, she said well which bits do you disagree with.


disagree with??


I had proven it was all false, i never disagreed, i was explaining FACTS!! Then she scribbled on one of the sentences of many, she spent an hour atleast trying to get me to sign it.


I did not.


She was also the only one that brought up me seeing the psychiatrist and i assume she was trying to use that to prevent me from getting services as thats all she tried to do all meeting, and i stated the truth, its not psychosomatic, i even told him i was suicidal and he did NOT want to see me again, her amazing answer was, oh.


I NEED help, i need these adaptations and C.S is still saying i may NOT GET a STAIR LIFT even now. I am sick of this. She keeps saying i am going to get better and insulted the specialists at hypermobility.org as they told me i had the EDS version of Hypermobility syndrome, but how dare they?


They obviously know nothing about Hypermobility syndrome, there is NO CURE, if i get better it will only be for short periods of time, even if i managed to walk the stairs I WILL ALWAYS need THE STAIR LIFT as there will be periods of time for the rest of my life that I could get stuck upstairs without the stair lift and be immobile and severely disabled again, i have it severely.


They have awarded me a stair lift TEMPORARILY and I can see coming, that if i have a good patch, the will remove the stair lift, then when i am having a bad patch again, i will have to re fight for one as i can see myself stuck upstairs, not being able to attend anywhere.


They have no idea about HMS they say the hypermobility.org specialists are not trained, not doctors, and dont and cannot assess me individually and that i need a individual assessment and that i will get better.


After all that THEY SAY I WILL GET BETTER so... what experience do THEY HAVE to state such things, when slating people who KNOW MORE than them about it as some people in hypermobility.org HAVE HMS!!!


It is ridiculous!


We are just putting up with it all so I can get the adaptations I need, but they are NOT coming FAST!


I STILL HAVE NO COPY OF MINUTES, NO CARE PLAN, NOTHING I WAS PROMISED FROM MEETING!


*Sighs*