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

Lack of strength...

My strength? What strength?


I don't have any anymore, just like I am losing faith in society and people.


Over the last few weeks I have encountered some offensive and malicious people that are ignorant and seem to gloat over others suffering.


Online, higher organisations, staff, moderators of groups to help the planet *This one surprised me lot's* and even in shops and supermarkets.






Just as 2 examples and unfortunately not the most offensive and upsetting situations I have found myself in recently which involves disability hatred.
I am constantly shocked everytime I come accross more and more disability hatred towards myself, they should be ashamed of themselves, this is a new disability I have and at the end of the day when i was independent and could walk I would never and have never even dreamed of treating the disabled with such disrespect, I even dedicated almost a year to helping Learning Difficulties Disabled Adults and Children and I think everyone should complete a No Secrets workbook thats in place instead of legislation for vulnerable people. 


The last time I was ever out of the house was the 30th December, briefly. I am now so ill I am extremely housebound and cannot even turn myself in bed.


30th Dec supermarket:


One lady in the supermarket walked into the lift for the disabled with a young lady with her and trolley. I tried to get in and just said "Can i get in here please, i cannot use the stairs" but said this smiling to infer i want being rude and genuinely needed to use the lift, the lady just kept saying nastily "no ones arguing here, no ones arguing" and i decided not to acknowledge it at first as it was silly as she could have easily used the escalator and i was not rude to her about how lucky she is to be able to walk and do everything pain free etc, but she went on and on didn't she!


So i said politely "I never said anyone was" and i laughed it off, all through the supermarket when we saw her she was giving us evils as if she wanted to hurt us badly (My husband who is my 24/7 carer, and I), it was ridiculous!


I said as we left the lift to my husband, and i don't care if she heard me as she was out of order, "i would hate to see what she would do if someone was nasty to her, lol" Which I think is extremely timid in comparison to her attitude.


Please note i was using the battery operated trolley car thingy they have at the entrance to do shopping as my joints are hurting so self propelling was hurting too much.


A second lady, saw me in the queue at customer services behind a man buying lovely flowers for someone special obviously and he wanted to wrap two bouquets as one big one, really sweet, and i was queuing to get my wheelchair back so we could go, this lady kept eying up the queue and knew i was in it. 


So she decided to stand to the left of the man and push in and stand at the desk knowing i couldn't get in to be served in the autocarthingy/motorised scooter with basket.


So, I decided to speak up but politely: I said to her "Excuse me please, I am in this queue." and she said really horridly "Alright, i will let you go next, there is no problem, there is NO problem is there!" but it was said evilly as if i was trying to make a problem etc, and the man buying flowers must have felt sorry for me as he winked at me and nodded to her and shook his head in disgust, bless him, made me feel a lil' better, but she still tried to get served next and i spoke up and said that i am next and can i have my wheelchair please.


Those things are so hard to operate too i try my best to keep out of peoples way thats why i had queued to the right of the man and other people understood that, why couldn't she.


I like where I live as its full of friendly canny people, but where are all of them hiding lately? Im in a wheelchair for gods sake, i am not being rude, i don't play on my disability i am fair, so why cant they be fair, i stop to let people past and things when they cane easily get through anyway and decide to walk infront of me anyway. What threat am I, honestly?


And in regards to services that are free on the internet to help the environment, I don't expect to be treat offensively by owners and then staff of the organisation running it when all I wanted to do was be a member as I rely on such internet services due to my disability, what harm am I to them? They just kept being offensive and unprofessional in emails and made unprofessional and offensive remarks in regards to my disability, so I have left them to it, I know I cannot change people but surely the staff of organisations should have some courtesy instead of threatening me, all of them, unnecessarily and allowing the distribution of personal information which was illegal, no matter what happened previously. It is an outrage.


Its upsetting :( but i keep my chin up, smile, be polite and try to laugh it off. 


Even the Dr.'s I am at, the reception staff have disgusting attitudes, most days in general, but they keep asking for my husband to go to the surgery and leave me on my own despite me being disabled and needing him indefinitely 24/7. I would not mind as much but they ask me up to 5 times and it makes me feel like they think I am lying or I am not being taken seriously so when I phoned up to discuss this today and wanted some notes on the system, they refused to put me through to the office manager and just kept repeating over and over again the same sentence as to infer I am dumb 'You need to speak with the GP I will put you through" even when I asked for a reason as to why I need to be put through and lot's of other questions, that was the answer, do you know how frustrating that feels?


 I looked into changing Dr.'s surgery's to another one, however it is fully booked, but the DR / GP I spoke to instead of saying, o.k. I will address this issue and see what can be done so you are only asked once, decided that he feels it is a perfectly reasonable request to ask my husband to come in to see them, either for him or our son, and leave me alone to soil myself and be in absolute agony with no access to anything and the inability to move or turn in bed, to which my husband refuses to do. The GP replied to his refusal, "Many others do it", to which my husband replied "I am not the others, and I am not prepared to leave my wife to suffer like that."


When I asked the GP what he would do if his wife was in my position and he was asked to do the same he said "You are twisting things now" and I do not how I am twisting things by speaking the truth?


Life ey?


What's the point anymore?


I am housebound anyway and surrounding myself with things I love, including my husband, our baby and lot's of hello kitty stuff is allowing me to have some sort of a break, but it is so frustrating when you are not capable of sorting any of these situations out nor able to prevent further abuse happening to other indivuals, and you are sat or in my case stuck in bed injecting Clexane for blood clots daily (40mg) staring at 4 walls completely useless....


...well and truly useless and feeling unmotivated, not feeling like eating at all, crying, stressed, frustrated, and feeling like a failure....


...welcome to 2010....