Hi, my name is Harriet1998!

Harriet1998

Hi Guys, I’m new to all of this, so, wouldn’t know where to start on conversations? But very grateful for a network that isn’t continuously from health care professionals, Hope you are all doing well!:)

chiarieds

Hi @Harriet1 - & welcome to this friendly & supportive community. Thank you for joining with your good wishes; I hope you are doing well too. You can say exactly what you feel comfortable with, but, if you're willing, it would be nice to know a little bit about you. I've got hypermobility problems.....a genetic disorder, which has caused generalised osteoarthrosis, & I also have neuropathic pain, my worst symptom. So, How about you?

janer1967

Hi and welcome to the community 

Feel free to look around and join in if you are unsure just ask 

You already know now how to post a discussion to reply just scroll down and enter comments in the text box then scroll down and click post reply 

It's a pretty easy site to get used to 

Ami2301

Welcome to the community @Harriet1998 I hope you've had a nice weekend

Cher_Alumni

@Harriet1998 and a warm welcome to our online community.  It's lovely to meet you, and yes our community has lots of members with lived experience of being disabled and having an impairment so that really helps empathise with situations and challenges faced.  How are you getting on?

To get started on the community, you can do various bits!  You could start your own discussion, browse our various categories or even visit our virtual coffee lounge where conversation is more relaxed and light-hearted  

If you feel comfortable in telling us more about yourself, then we're all ears!  If not, no pressure - make yourself at home and let us know if you need any help.

I hope you have a lovely week.  Take care and speak soon. 

Harriet1998

Hi Guys, thank you for the very warm welcome. 

So, I was born with cerebral palsy and hydrocephalus, as well as being later with my milestones, I’ve had many operations and my legs are currently an issue, I wore peidro boots and splints on both legs until around 11. Where my alter ego became more to me than actually helping myself, physically, and I wore normal shoes. I tried to fit in with the “ normal cool” children at school, but this was short lived. 

As I have got older, I’ve experienced many more difficulties than I first thought? I am struggling to walk at the moment, I have fallen over and hit my head many times, had Covid and ended up in hospital, developing seizures and long QT as a result, now more investigations, I suppose knowing people who have been in similar situations or can relate, rather than all this medical help, is more important, I know what’s wrong, but how can I help myself? How can I stop thinking about the negatives and actually try to get on with my life? Before all this with various complications? 

“ could be stroke symptoms”
im 23 and of course, scary things to be a potential? 

Under many Consultants. 

However, no one seems to be able to give me a definite, will this get worse? Will I end up in a wheelchair? Can I help it? 

I am struggling with the new life of very many limits! 

And struggling to keep positive, as I was training to be a paramedic previously and I was an active and very fast runner at school, all this, to all that! 

Current situation sucks, and it’s very rare to find someone who doesn’t look stare with splints, or the way you walk?
talk? 

So on?
I suppose no one would know if you appeared normal? And without all these physical equipments and mechanical devices? How do you get over it?
yes! I will never be in the popular group, and be seen as someone who can go out and party, I’ve lost many friends from not going out and being sociable? Before Covid?
it doesn’t help that I have ASD and everything is 200x louder. But my mind is very clever, and biology interests me an awful lot.:) 
has anyone had similar experiences? 

Tori_Scope

Welcome to the community @Harriet1998  

I'm sorry to hear about everything you've been having to deal with. Unfortunately, many disabled people mention to us how they're viewed different by other people due to the use of aids and equipment, amongst other things. You're certainly not alone.

You might like to check-out our category for discussions relating to cerebral palsy, and autism. I'm also going to tag in our Specialist Information Officer for cerebral palsy, @Richard_Scope, in here in case he has some tips or tricks for you.

To meet other people who can understand some of what you're going through, you might like to attend Scope and CP Sports' virtual CP Cafe. 

Have you pursued your interest in biology in any way? 

Harriet1998

Thank you so much, just read this. 

I have been with West Midlands ambulance service before, and was a student paramedic. 

I’m looking at maybe research in that area?
but I’m still looking at other options? 

Anything medical I love.
I have a huge passion for biology.:)