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, 8 April 2010

It's a disability not a curse....





... I am starting to feel like i am the only person who has ever been disabled, as it is me, or is the world suddenly naive and arrogant towards the less abled?


Ok, so I went in to town as I had to go to a counselling appointment and the counsellor i have been given who spent the whole of today being really abrupt, forward and insensitive and kept repeating about how to get discharged and really making it sound like she hates her job, telling me a lot, that its exclusive.


I am only allowed 6 sessions ever, and that this introduction one counts as one, and what do i want to get from counselling, despite me telling her serious incidents of malpractice about local hospital and other serious incidents and about my disability she still acts like doesn't have time for that as she has more to over explain about confidentiality and to repeat and to re ask lots if i really need this as if i dont some one else can replace this opportunity and despite my joint condition that can cause me to be immobile unpredictably, that i have to ring 24 hours in advance about cancelling a session.


I had explained i would have to call the morning before if i 'lock up' and she kept saying that if a session gets cancelled same day then if that happens twice you get discharged and if it happens where the appointment cannot be replaced or given to someone else then you lose that session, till i repeated myself and said that it would be beyond my control it is my disability after all, and i said all the way through that i have issues NOT being taken seriously, and she said that maybe they can make an exception... maybe... well maybe i am not looking forward to the next session, maybe she has been rude and upsetting and unprofessional and acts like she does not give a crap, not only that she is one of them that just sits and nods at you over and over and over again to act like she gives a crap!!! *sobs*


MORE important matter: (things have been removed to protect identifying people due to the seriousness of the points I have raised....) Disability Accessibility issue regarding only one premises in town: Well i got a response atleast about the Disability issues I put forward about our local towns post office and although things have been put into place I am awaiting for the reasons as to why it has NOT been put in situ...  


I PUT FORWARD THIS COMMENT:  


"On the site www.directenquiries that our local towns newspaper advertised so disabled people could have their say the post office have stated that all entrances have NO steps and are all level, as a disabled individual i am unhappy about this as everytime i visit town i cannot access the postal office and other shops as they have a step. More horribly, the step entrance is the only entrance that leads to the post office and I as a disabled person cannot access the post office due to the step. When i have been helped very difficultly into the shop in a wheelchair i have never been offered a suitable counter and have been forced to use the high counters. 


As a disabled individual i expected them to have a fair report on their premises and i suggest they get a ramp, last time i was fortunate enough for them to have a small queue as I had to go through the exit (the shop entrance) and had to have someone dismantle the barriers to allow me to join the queue. 


People do NOT realise how horrible and difficult it is for someone who is disabled, i have a mobility scooter that i now have to use otherwise i would be imprisoned in my home, this is due to the fact i developed my lifelong disability during pregnancy and my husband who is my full time carer has to push our child in the push chair and cannot push a wheelchair at the same time, people have thoughtlessly suggested putting the child on my knee whilst being in the wheelchair which we did try and had to come home due to health and safety and my joint problems, the disability i have affects my joints and caused immobility.  


The scooter I use is legally for indoor use, pavements and crossing roads only, therefore is suitable for entering shops, I cannot enter the Sue Ryder Charity shop, The Post Office, Have difficulty entering Boots due to doors, The chip shop I cannot enter at all due to steps, the cafe up the ramp i have problems with the lack of space, Pound Stretcher would be more easily accessible but I have difficulty entering and moving around in there due to the layout of stock outside and inside the shop. I can however enter Boyes, and use their lift, and enter YMCA, British Red Cross, Bon Marche, Wilkinsons, and the majority of other shops that have ramps, flat floored entrances etc...  


Thank you to those shops.




I suggest the Post office either change the step to a ramp or alter the queue barriers to allow entrance from the shop, as when the queue is full I cannot get served as I cannot join the queue and more people keep queuing where I could have joined if I was non-disabled. I would also like the offer of the small counters. Just because disabled people have problems does not mean they should be treat as a problem."  


OWNER HAS RESPONDED: 


HIS RESPONSE:


"My name here*, I have spoken to (name removed) the owner of the Post Office and shop next door who tells me he spent £4,000 making special arrangements for disabled people who are requested to enter the Post Office through next door and ring a bell for assistance. He also says there is no need to queue and a low level counter is provided. In view of this you may want to change your letter.


(FROM THE LOCAL NEWSPAPER EDITOR" I HAVE THEREFORE RESPONDED WITH THE FOLLOWING COMMENT: 


"(NAME REMOVED BUT TO THE EDITOR OF TOWNS LOCAL PAPER, When i enter the post office via the shop entrance, there is no bell to press as far as people tell me, i then have to try and enter the queue to which only people in the queue move the barriers, and then i am never offered the low counter and made to use the high counters, if he has spent that much to help disabled people, i would like to know why it is not in use? 


Or, atleast why staff have not had the courtesy to help me or advise me the many times i have attempted to enter via the shop and had to join the queue as customers alter the barriers, as well as having struggled to attempt to enter the step entrance.


The shop is also difficult to move through but i understand that is not the property of the post office, thus not their problem, i will however, next time i wish to use the post office, bring what has been advised to the attention of the staff and will observe if they allow this to occur and how they deal with this situation.


(yes I know I had misread and that the shop is owned by the post office's owner, therefore even more importantly they should put this to the attention of all staff in both areas)


I do suggest that this is brought to the attention of disabled people that wish to use the post office as i have been disadvantaged many times and NEVER yet been offered the counter in the corner by any member of staff who have happily not suggested this and observed me as i have struggled with the high counters to the extent i have had to have my fully abled husband take over." 




JUST SENT SO STILL AWAITING FURTHER RESPONSE FROM THE OWNER...if i get it at all, what would be nice is a comment stating that they have re-briefed all staff so I can safely go there and be served happily... that would be great...  


Additionally, the website has modified the post office accessibilty information...which is fantastic....they have been really helpful with every concern i have raised and have met the needs I have had...shame they don't own the shops as they can listen and understand and empathise.... .....although disability is a huge part of my life, i refuse to allow to have to be forced to fight with obstacles in town too, fighting this is enough!


OK, so i hope that they don't perceive me as a problem maker, but it is genuinely how i feel about such situations and it is about time people like me got help, i am NOT the only disabled person in town let alone the world, it is about time someone opened the world's eyes, isn't it?


All I wanna do is live, a happy life, a one where people accept disability and actually decide to be nice and helpful about it...