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.

Monday, 14 December 2009

Forget it! I give up....

I hate that I am on 200mg of morphine a day and I am still in agony and my SPD was supposed to start to get better and mines just getting worse *sobs*

I am sick to death of malicious people on the internet that are closed minded and judgemental when you try and help with a situation and suggest something that may be of use in a reply to a wanted post.

If the suggestion is not of use then merely ignore it or state so! There is no need to judge me or make false allegations as you do not know me nor what I have to go through everyday! I am sick of having to justify myself to people and hope that this person is very proud of themselves! Especially when i sent an apology and checked the rules with the moderator by messaging them, this person slandered me and made false allegations to the moderator to bully me and have me removed without knowing anything about me and failing to accept i was actually genuinely trying to help.

Unlike them the internet is my main point of communication and contact as I cannot walk! Charity shops are not too wheelchair friendly and they just do not realise how lucky they are!

If they are trying to help children in need thats fantastic but to accuse me of trying to make money to line my own pockets when that is NOT the case is just closed minded and judgemental and not something that I would expect to come from anyone who genuinely wants to help people!

What happened was they asked for something in an online post, and i said i am sorry i cannot help but i do know someone who is selling one for cheap, he is my husband , here are their contact details, (which i am not responsible for him or his actions which i am not).

Was merely a suggestion like i stated as well as apologising for not being able to help them further and if they are doing what they say they are doing i am sure they can just state, sorry its for a child in need and your suggestion is not of use, please keep an eye out for anywhere that may have one (and i would have been delighted to help if anything came to my attention).

This was not stated but he is trying to raise money to get me a stairlift as i am still stuck downstairs and treat extremely horribly please see below about this as this is another story!

They could be lying about it in all fairness for self gain for all i know but i don't throw accusations around like they do and i have sent justification for everything i have stated, to prove what i am saying is true! What they did is just like me sending a message to the moderator accusing them of wanting toys and bikes (like they have) e.g. nintendo DS etc to sell or for xmas presents for their children, but i dont know this and cannot prove this therefore i do not accuse. I just hope that they are genuinely trying to help people but to act like that towards me can be inferred as them being furious as the email was not a free expensive item like they requested and as revenge they take it out on me.

I also noticed they want things and don't offer things and want things for boys aged 4-5, clothes, coffee table no glass, boys bike, nintendo DS, TV Bracket, Guitar, wooden high sleeper bed, nintendo game cube games, (hmmm.... yeah i really believe her now, sounds like she's kitting out her sons bedrooms if you ask me and not wanting an item for a lil' girl with special needs!) I just dont get why she didn't accept my apology and say thanks anyway, if its for a little girl with special needs surely she would be willing to discuss it, not start insulting people!
It was the first time i sent a message of that nature and even asked the moderator myself to let me know so if it is against policy i would not do it again!

She also publicly sent everyone in the group my husbands personal phone number which I assume breeches the policy of the group in a more serious manner?

Yeah, just hope they are satisfied with their dehumanising and malicious actions today. (People that treat people like that get off on it so I doubt they even feel the slightest remorse for me or feel guilty about what they have done!)

Just a coward hiding behind a computer screen because they can, unfortunately I respect people and I am keeping this blog confidential, or I would have been inclined out of anger, frustration and disappointment to post their name on here, but luckily for them I think that would be a mean and degrading thing to do and don't lower myself to their malicious level!

In another note and moving on before I get more upset, my husband is trying to raise money for a stairlift, so far £0.00 has been raised. We have ran out of things to sell as sold lots of items just to live previously.

I was not getting involved but after all the hassle on the internet etc today, I think I may get involved and try to help him as all his efforts have been exhausted and I really feel for him I do. He is trying his best for me and our son.

We need a minimum of £4,000 as our stairs are L-shaped and nothing in our life is ever easy, thats for a stairlift alone, no maintenance or fitting.

You cannot buy L-shaped stairlifts second hand or refurbished either or hire them, only straight stairlifts which would be of no use to us.

I am thinking of writing in to a magazine to raise SPD awareness, help others and to see if there is any charity that has the ability and finances to help, but I am shy and don't know if I can be brave enough to do it. With this blog I get to hide behind my words as there are no images of me and I am not getting attention and it is here to help others, but in a magazine etc I would be photographed and people could look at me, and malicious people laugh at my misfortune... but I don't know what to do.

If I don't get any help atleast I would be raising SPD awareness which is what I want! But... people close to me will disagree with the publicity and have already talked me out of one thing and say that people could approach me in the street etc and would know who I am.... :(

I am stuck in this paradox and don't know what I can do, my husband is frustrated and trying to help me and social services need a letter to confirm my SPD is long term to get a stairlift but my new consultant whom I thought would be helping me is not at this time and only met me once in which they have written to for a letter confirming this and I doubt they will be able to get the letter, in the meantime I am left to suffer again.

The other night my pelvis locked up and my husband was upstairs on the toilet, (not for long) our son was next to me in his moses basket and I was laid on sofa as I still cannot lie flat and he helped me on there prior to pelvis locking up, anyway our son started crying as he was hungry and I was unable to pick my own son up, you cannot put it into words how that feels!!!

Worst feeling in the world.

I daren't attempt stairs as it hurts and my pelvis locks and I have no way of getting downstairs in case there was a fire, as if I was ever able to get up, I may get stuck upstairs like what happened early on in my pregnancy and it was agony to get down and took ages and I was immobile for days afterwards it damaged me that much. Was stuck upstairs for 3 days!

People really do not know how lucky they are, and I thought the same when I was fully abled and helped Learning Disabled adults and children.

I just want to be able to walk for when we get our son christened and thats not looking likely and to be able to have access to a toilet and a shower (as i won't be able to have a bath ever again unless i get a bath lift, and i am not asking social for one of those, i am only asking for what i need) and just want to be able to be the mam I dreamed of.....

...SPD has ruined all of this and now the health professionals who can change my life and take me seriously are ruining everything for us...

*(This is my blog, I really needed to vent, I am confined to my home, downstairs of my home at that, and never once, throughout my whole SPD experience, have I been offered counselling, or anything that would actually be of help. Keep asking for referral to: Manual Physiotherapist, Pain Clinic, Gynae, Counselling and consultant... nothing as of yet...)*