Wednesday, 24 November 2010
2 Years since 1st diagnosis & baby's 1st birthday...
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 women of all experiences including the variations of time they have had the condition and i feel this is the best way.
We have a discussions section for personal stories and blogs, i have a blog which merges with a huge information section of all the links you need if your new to SPD or need help with dr's or even coping with it if long term sufferer.
I advise people to create blogs and share them, it really helps to find someone who understands you and what your going through as opposed to someone who has merely observed the condition clinically through said career paths.
There is more than whats needed of info on this blogspot site and i cannot emphasise how important it is to help us raise awareness of SPD and that starts here, by you inviting every person you can on facebook to the support group on facebook and linking them to follow this blog so more people can find that we are here to help people with SPD and there will be many women suffering in silence right now, so we need to act NOW to see that the people that need the help get it and the people that do not know about SPD find out about it, remember 1 in 4 women get SPD and 20% get it severely.
There is one thing i really detest and thats staff in the medical profession's ignoring SPD, read what i have been through then you will understand.
I am there as an officer on my facebook support group if anyone needs to talk or ask questions, or just for general support, its what i have dedicated my life to doing now, I am dedicated to the group and helping as many SPD sufferers as I can, my support group's my life and i will do anything i can and go all the way to help anyone who needs me further :)
I would like to emphasise the importance of letting people know this blogspot site exists, so they can learn about SPD and have access to all the information and research I have found continuously since I became an SPD sufferer and can choose to access the support group if they would like to.
Baby's 1st Birthday
I am pleased to say that baby has had a wonderful birthday we did everything we possibly could have for him and he was extremely excited and well behaved. We are so proud.
He even ripped the paper off his presents, but got frustrated when we had to switch to another present as he wanted to play with the first so much but my mam was getting it out of its packaging. We had a mini cake for him to blow the candles out, and a Thomas the tank engine cake so everyone could have a piece.
He got a range of surprises and he loves the Tomy eggs and his Trucks and his Winnie the pooh Spintop ball the most, but we also got him some children's drums and play instruments which he had a field day with!!
It was really nice to have a day like this and i cried happy tears upon going to bed, it was just simply wonderful!
He is walking so much more now, and doing so fantastic, he is speaking clearer and there are a few words being repeated now and I cannot put it into words how I feel, amazing!
He is our miracle baby and it still has not fully sank in that I am finally a mother, although I know I am a mother, it still surprises me everyday, if you know what I mean.
I am really happy at the moment which makes a big change and i feel lucky to have my husband also.
It is not easy for him, and he wants to be able to fix everything that goes wrong, and it hurts him when we are in situations where the healthcare are not treating me with respect or dignity and he does speak up and gets frustrated when they do not listen and just accuse him wrongly of arguing. Not going into specifics we have been through several situations of trauma and the counselling is really helping to vent it out and cry it out, jointly for both of us.
2 years is a long time to wait for such help but it is still appreciated. Our full story for those who are new to this blog, is all here on this blog site.
We have contacted my support worker to organise some more help, and we will find out how much we will have to pay after today, when they do the financial assessment.
That will give us the time we need, as we could not bear to put baby in a childcare situation, for personal reasons. He is very special to both of us and we would miss him.
We do have some family support on my side also so that as well as this help will help us to be more like a normal family.
We are getting there, we are all getting more and more into a routine and things are starting to get more easy for us, well we have my powered wheelchair now, and I still have my stairlift and bathroom adapted, which I thank my lucky stars for every second of every day it is just wonderful. We are starting to get back to normal, well as close to normal as we can get at this point.
We got so much more of the house sorted ourselves now and we are feeling much better for getting it done, although i wasnt a great deal of help, i did sit and organise through some things, and it did help husband which made me happy.
Although you can never get 'used' to a disability, it is getting easier.
All our love.
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