PGP / SPD My story:

... 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...

Well atleast I made it to being a Mam, but disabled for life too? It was all worth it. I found out what made my SPD develop so early and made it so severe, I am disabled with Hypermobility Syndrome, some prefer to spell it Hyper-mobility Syndrome. I am immobile and severely troubled with it, havin been rushed in ambulances the last 3-4 days too, and in ! and E 12+ hours... I am now on 240mg morphine and trying Lyrica/Pregabalin amongst lots of other pain relief tablets daily. Unfortunately there is no known cure for the syndrome and I will have it for life and it will only get worse. Atleast it is not life threatening and I made it as a Mam, my miracle son, conceived on Clomid, he is here, he is beautiful and I enjoy him everyday of my life and he is spoilt, played with sooo much and treat lots, always has lovely clothes and clean and cared for and I wouldnt have it any other way, he deserves the best treatment in the world and we take him to our local surestart centr...

..A noose that is unwanted and put there by so called professionals trying to help, who are just making things more complicated and causing more suffering if you ask me. (Don't worry was merely a metaphor.) I finally gained access to much needed services, i.e. Pain Management Clinic and Physio experienced in Manual Therapy, when we receive the initial assessment from Social Services, which *surprise, surprise* was based on some false information too! The ex consultant of mine and ex midwife accused me of 'exaggerating' my condition and stated that I sought access to Adult Services and additional help RE: my condition, without consulting them. Do these people NEVER write anything down? I asked, I begged, I screamed, I cried, I gave up and tried to help myself, as they refused me the help I need. So now I hope they are happy as Welfare have defined our young son as "a child whose vulnerability is such they are unlikely to reach or maintain a satisfactory level of health ...

You'd think things would get better from here... you would be wrong. I was in agony the same night I was discharged and my pelvis locked up when I laid flat on the bed preventing me from breastfeeding and I had to sleep on the sofa. My parents had to come out at 4:30am and help my husband lift me to the sofa. When it did this again the next day the urgent care dept out of hours suggested I phoned the ward I was on, the ward I was on did not want to know and as far as they were concerned as they stated "You have had the baby now..." and basically I am no longer their problem. So I phoned A and E and and my mam and dad came and took me and the Dr there gave me morphine but said I could breastfeed on it. Morphine made my baby vomit so I stopped it. Second time I was stuck on the sofa unable to move and scared incase I needed the toilet as I couldn't even nudge myself forward or sit up/back so I phoned urgent care at 23:00 and the lady came out at 02:00 and gave m...

It was last saturday, I had a problem when I gave myself my Clexane injection into my left thigh, it was extremely painful and abmormal. I had administered it more than 14 times and never had any problems, I phoned urgent care centre as there was a lump present too and my mam was concerned. (My midwife's phone was switched off). Having told them I was under the care of my parents and at their home and having phoned from a different landline number to mine, I was waiting for her to call me back to state whether or not I could have a home visit. I had told her I was pregnant and had SPD. She sent two standard nurses to my home address whom woke up my husband who had been on a nightshift. He was scared hoping I was ok. I assured him I was just getting a check up and some advice as to where to inject 'tomorrow' etc. He gave them my parents address. 2 hours later I had heard nothing so phoned urgent care who said abrubtly and impatiently that they had passed it over to the nurse...