PGP / SPD My story:

HOW TO SURVIVE WITH SPD OVER THE WINTER PERIOD: Here are a few things you can do to help you stay well and as pain free as possible this Christmas Period: Avoid going out if your SPD is very severe and if the weather is very poor,the cold can make your SPD much worse so you must stay warm. Shop online, or get a relative to shop for things you need for you. We understand that being stuck at home can make you feel trapped and can affect your self esteem, so we suggest that you invite people over to you and invite people who will understand and can help you be happy and remain positive about the SPD and the situation you are in. It does not matter the severity of the SPD or whether or not you are pregnant with SPD or have had your baby and still have your SPD, SPD at any level, in any situation causes pain, makes you uncomfortable, and can affect your mobility and can make you feel low or affect your confidence. You are not alone and the support group is a great place to start...

Some people advise speaking to people older than them about SPD but it really does not matter who you speak to about it as long as they understand it or have experienced it themselves. I spoke to a retired midwife when i became disabled with my joint condition which caused the spd and i have it and diastasis permanent now, she just said the same as everyone else to be honest, SPD was there even BC she said she had read one of the philosophers actually mentioned it too, and her advice was the same as all the advisors and pelvic partnership. Unfortunately you pretty much just have to try and live your life with it as best as you can, with the right pain relief and help you deserve. Im on pain relief and have my wheelchair as im severely mobility impaired now and I still need my stairlift, (for readers who maybe new to the blog) but I have been like this for 2 years and im 23 years old now. Why I started my support group? I created the group so women of all ages can talk to w...

I have just heard on the news that a little child has died from being dismissed and going back to the hospital I have been dealing with, from lack of diagnosis of a majorly recognisable condition without pain relief! I have put a complaint into the same hospital about the lack of care and clinical negligence I received from / in the same department, thankfully I was not at a point in my life where I could have died, however as a disabled mother being left to fall off a high bed, having the pain relief of gas and air taken away and then being left on the floor, hit with the door and prodded (and much much worse all in a previous log/blog) and they did not care then, and they are pretending to care now by labelling themselves as having a high level of care 'usually'. Instead of an apology they have made false and offensive allegations towards myself and my husband that will consistently affect the level of care every time I would need to go into hospital by writing abusive and ...

Headache after headache: Small reflect on the situation: I am now in a wheelchair and I have an underlying joint condition ( a genuine disability ) that caused my spd during pregnancy, i am now disabled for life and its all still really raw for me because its only been 2 years that i have been disabled and i have just got a counsellor who is lovely and i have not had that, its wonderful, BUT its opened the box of problems up so im very sensitive right now. Whats going on with my life: I try to be as strong as I can be and i like everyone to believe i am a strong person but those that know me know deep down, i have such a big heart and because i care, things do bother me. I am grieving a past life and some deaths of people i care about, I am wanting to be a better mother and my baby is a year old nearly and we need to organise for his birthday, and i feel he is slipping away from me because he is into everything and pushing boundaries but i cannot say no to him like my husba...

OK, so i was getting somewhere, everything has been sorted.... so hopefully there should be nothing to make me ill again ( been so ill from the stress of social services etc i have been passing out / fainting - ending up in hospital , banging my head and that, ECG's, palpitations, chest pains , fuzzy headedness, the works) and now i thought it was at an end, the bathroom and toilet accessibility for the disabled (that is me) 'works' been finally submitted to be done etc i get a council worker who should be doing the work phoning me and insulting me and my family and questioning everything , which if he was supposed to know 'everything' they would have sent him copies of the letters etc wouldnt they? There was a letter received this morning saying that the council had acknowleged my complaint, and so i phoned to find out what this alleged complaint was as i had not made any, to find it was about a gentleman who we had problems with, so i cancelled the complaint...

I have read and responded to an article posted in my local towns newspaper, and i have also found another response which I thought was interesting. The original article: " Can We Afford This Level Of Care? Thursday, 15 July 2010 ... Dear Sir, Reflecting on the current need to cut costs to reduce the country’s enormous debt I was drawn to an instance which bears investigation. I live near a bungalow which has been purchased and converted to house a disabled person. I notice three staff in attendance 24 hours a day and if you calculate the cost of the house and the salaries of all these professional people, it is colossal. Whilst I agree with the policy of accommodating disabled people within the community there has to be a limit and a sensible economic approach especially when NHS funds are stretched to the limit. Concerned Name & address supplied." MY RESPONSE: "Don't Make More Problems for Disabled. Friday 25th July 2010 Dear Sir, I am a 23 year ol...

I got asked a question today on my facebook wall (not inbox) openly about Disability and I do not mind as I am a strong person when it comes to things like that and did not take offence but i warn you some disabled people will. Remember not everyone knows even anything at all about disabilities so I am happy to post the question and my reply on here! I am here for anyone who needs me on my facebook support site and will help those that are worried about SPD and help make sure SPD sufferers whether previously unaware they were disabled, previously disabled or even not disabled at all, know what help they are entitled to, who they can go to for help and hopefully prevent SPD and / or DSP developing into a lifelong uncurable disability in itself: Q: This was an open and public question posted on my wall (visable by every internet user) therefore I will post it as it was: ( to help answer peoples concerns about SPD and Disability and any further open questions can and will be posted on...

... 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 ca...

Reference from: http://ghr.nlm.nih.gov/condition=ehlersdanlossyndrome Please note: Some links may have been disabled as it is a quoted extract which copyrights all belong to the reference link above and at the bottom, all rights reserved to original copyright proprietor. "Reviewed May 2006 What is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications. In the past, there were more than 10 recognized types of Ehlers-Danlos syndrome. In 1997, researchers proposed a simpler classification that reduced the number of major types to six and gave them descriptive names: the arthrochalasia...