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 husband can, he can go over and pick him up and say no. But i am stuck sat there and it reminds me of the early days again when he was in the moses basked crying and i couldnt pick him up, i was helpless, when he needed me. He needs me so much and I am trying to be there but it is still really hard when all your plans of things you would do as a mother has been stripped away from you as you have limited abilities. Very limited.
I know i need to be in control as opposed to the disability but at the moment, the disability is in control of me.
There is no one to blame for my disability because it was hereditory and my mother has it.
Underneath it all my husband and I (people forget he has gone through all of this as an onlooker) are both struggling to come to terms with the negative experiences of unfairness we both have experienced and more, and right now i cannot go to hospital because the notes wont be amended, and cut a long story short they dont believe im disabled (so i have to bring all my evidence) and as well as that, one abusive incident i experienced (all in a previous blog, i fell from a bed, they hit me with the door and prodded me) they lied to my dad and husband as true honest witnesses and said i was lashing out and had trashed the room etc but they both knew i had not and saw so. i was left on the floor that specific incident and i dont wish to go into too much detail as it is in all honesty so embarrassing for me.
All the incidents we are both dealing with here are very serious in nature, and we are terrified that we were not the 1st and wont be the last and many disabled people or spd sufferers are going through this!
Cut a long story short, if anything serious happened (life threatening) to me right now, i could not go into hospital because they would think im abusive and treat me bad or think i am not disabled and damage my pelvis or joints etc or let me fall and leave me, so we have looked into everything and the only option for us is to speak with a solicitor and take them to court to amend the notes so i can be treat with respect and properly like any disabled person/ young mother deserves.
And i am scared!
I dont want to do this, my husband who has dedicated his life to being my 24/7 carer and cares mostly for our baby too, wanted closure, as did i.
And they wont give it and they are leaving me in a very vulnerable position.
Nobody wants to take anybody to court and everyone wants an easy pleasant life, well we do and we assume most people would!
Sometimes i am thinking, end it all, give your husband and son a good life! Because the problems with others are all surrounding this disability which is beyond my control!
BEYOND MY CONTROL being the emphasis! :(
I am in need of some good coping mechanisms....
I need to cope better right now...
I am having problems with the DPN, (disabled parents network) the advocate wanted to close my case over and over and well i guess she has what she wanted now but its left us without help when i have recommended them to over 600 members of my support group and was planning a charity event to raise a lot of money for them and the advocate would not even let me talk to them, the only time they ever phoned me was this morning to tell me she had got what she wanted and when i tried to tell her the things i needed to before, when she was trying to close my case in the first place, she accused me of arguing so i cried said your mean and hung up.
So now i have to retract all my recommendations as they refuse to help us, she obviously doesnt like her job is what my husband said. personally i dont know but maybe she is over worked, but she should have listened to our needs and what we need and helped us.
I phoned up and spoke to a nicer lady who should be advocate because she wants to help people and understands disabled parents problems, and she will be getting the advocates manager to call me next week but im not expecting anything other than, shes closed your case.
yes i know thank you shes ignored our serious needs and left us in a vulnerable position, erm thanks??
As well as that:
Some one used my details to set up an IT account, and from past experiences, we have reason to believe it could be my ex, so it has been noted to the police and we will take action to anything that may happen at any time in future, of course we hope nothing will.
SO much stress
I am going to try and eat today and have a cup of tea, and i hope to God i dont cry later.