PGP / SPD My story:

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 ...

Finally our council tax issues are resolved, may have taken over a year but thankfully all is sorted now. I am in absolute agony today, the front and back of my pelvis are just excruciatingly painful today :( Got a support cushion from the internet to hopefully help me when I am sleeping, help with my position and if I ever get the chance to restart breast feeding it will be really useful then too. Keep phoning the Dr.'s as they keep prescribing me only 2 days worth of Morphine and I constantly run out, which is why I am in absolute agony today, it's really hard to have a prescription written at my Dr.'s and I am still waiting for a Dr to call me back so I can explain to them what I have explained over and over again to the receptionist already, how much pain I am in and how desperately needed the Morphine is, you'd think they would give you a bigger bottle wouldn't you? I am on the slow release tablets too but they are not doing much on their own, the Oramorph and ...

Social services and my OT have said that I won't be able to get a stairlift at all. So I am going to definately be left without a stairlift: access to bath and shower and toilet till 2010, minimum february and maximum 2012. They expect me to have a quick wipe down downstairs in regards to hygiene and use the commode. Bearing in mind I am having a baby too, due dec 2009!!! The charity/church I phoned cannot even help with a stairlift. We really don't know what to do as I cannot even wash my hair as I cannot do it in the sink downstairs and don't have a table to rest a dish on or anything. I have a shower seat to get into the shower but that is no use to me if I cannot get to the shower. I am going to miss out on being a proper mother till 2012 when my childs 2, and thats if i fully recover. :'( They are taking everything away from me! :just want to be left alone: