Been diagnosed, no idea where to go from here.

Finally got diagnosed PCS last week, was told that remaining symptoms are probably for life, so what happens next?

Had put so much effort into getting to this point I seem to have fallen flat with no idea where to go next.

Have arranged CAB to sort out my finances, DWP and debt tomorrow

Have dealt with advocat service for hospital appointments.

It's weird I don't have the faintest idea of what to do next.

If anyone has been here and been through it can you give a little insight please.

Thanks from a little lost soul.

[Hidden]

My goodness poor you. How long have you had this for? What was your accident? I walked into a concrete pillar at speed. I though PCS was always temporary... so to be told it’s permanent must be devastating for you. Hugs 🤗

[Hidden in reply to Hidden]

Hi thanks, was in a car crash, got rear ended. It's better to know that it's permanent although a small percentage of people can recover over time. It was so hard to persuade doctors etc but finally I got diagnosed, it took 20 months, seems long and is long but some people here can't get diagnosed, so I'm lucky really. Have had a few rants felt a bit lost and wrote the post. Went to CAB today they are going to get everything organised UC, PIP and housing etc. That's a weight off my shoulders have been on the verge of bancrupsy and homelessness for 6 months or more.

Put so much effort into the last 20 months I feel burnt out. The CAB are going to get me in touch with other agencies to try and start some king of a recovery plan.

I think a bit of quiet time is needed to let reality catch up is what's needed at the moment.

Thanks for your reply

[TBI_Survivor]

The strongest bit of guidance I'll offer is to connect with people in this community...brain injury survivors and caregivers can be so very helpful. From sharing their own experience to offering specific guidance, I've found this community to be very valuable to be a part of for both information and inspiration.

I found so very many resources through my first ever social media account (Twitter) that I started a few months ago. There's a strong and supportive community there who share many resources. Just search for #TBI, #braininjury or #postconcussionsyndrome to get connected with folks there.

Other than that, I'd urge you to always be armed with solid information at your medical appointments. It helps if you can ask the right questions.

I'm 3 years into my brain injury, and I'm so thankful for all the survivors and caregivers I've met along the way. Take heart, as you are not alone in your journey.

[Hidden in reply to TBI_Survivor]

Cheers thanks for the advice, will get hashtag searching

[steve55]

youve got the advocay service invilved, great start. talk to your advocate about your fears, thats what she is there for.

[Hidden in reply to steve55]

Yes thanks, seen CAB today too and they will help setting up a network of relevant agencies