Positive Post!

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So after a hellish couple of weeks I had an amazing time at Comic Con! Whilst it cost an arm and a leg, it really summed out that all the forward planning required for getting out of the house was worth it. Jerry Cantrell show the night before was a disaster as the venue was appalling accessibility wise but it was a useful lesson - stick to conventions and/or places with superb access ability - don't bother with anything else, it isn't worth it.

In spite of various organisational issues, I had a blast at the event - met some of my all time favourite actors and it was great being around fellow nerds. Whilst I'm finding social interaction really overwhelming I didn't mind it there as everyone has similar interests so it was really easy to strike up conversations. My Mum also really appreciated a break from caring for me so she's keen I go to more. Plus, staying in a nice hotel in an accessible room means all my needs are met. I've booked to go to one in Birmingham purely based in a hotel, so whilst travel will be more laborious, the trade off is that everything's under one roof and then another one in London at the end of October. Given how much dedicated disability holidays cost, I think this is a much better way of getting out!

In terms of all the health stuff - the neuro-physio can do the referral to UCLH directly, so no need for a GP. Had a really good council assessment from a social worker who's going to try and sort out a care worker to get me out and about and also some autism support groups. I've really regressed post Long-Covid so think I need a lot of input and help autism wise. It's like twenty years of progress have been undone as, due to disability, I can't use many of my old coping mechanisms anymore and without much social interaction, I'm back to square one in that regard.

So I'm feeling a bit more positive about everything - just need to keep hanging in there really.

 

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Congratulations on working what works!!
And finding Neuro psych doctor who is professional

Very glad you are constantly moving forward to create your best life no matter what it contains

 

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it's so nice to see a positive post thank you for sharing

 

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Yay for you!

 

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It sounds like it was a lot of fun!

 

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In the next chapter of me trying to come to terms with living with a disability:
- I've found a Meetup group that meets up once every two weeks in an accessible location every other Saturday. I'll still have the 'will the lift work?!' stress at the station but I've messaged them and said there can be transport issues. It'll be the first time I've been out to socialise with people my own age (bar a couple of times before I had to a break from uni) in about two and a half years! I'm pretty anxious but then it's geared towards shy people and people that don't like loud pubs and clubs so I'm hoping it'll be okay.

- I've signed up for a singing class at an adult education college where I've done numerous things over the years. If I change trains then it means no need for a taxi the other end! Given I'm getting no physio for my breathing issues, it should be therapeutic in that respect. I just really want to do something musical. I've never been a confident signer (was always a guitar player first and foremost) but it should hopefully get me connected back to that side of things.

- I've also signed up for a songwriting course which is completely online. It's impossible to travel with a guitar so this should be a good compromise. Plus, I have issues playing guitar for a prolonged period now so, as you're encouraged to use GarageBand, I'll be able to loop stuff and avoid that bit of it. There's also some homework in between each class so it'll be a good testing ground to see how my brain is.

I'm still very anxious about using the new powerchair out and about but I've got the highest tier of insurance for it so if I have to claim then so be it. I've found a very weird route that means I can get to the station more safely but that's pretty much all I can do around here as all the terrain in the local area is shockingly awful. I also need to know if I can get to the station independently regularly as the only way going back to uni next September will possibly work is if I can get there and back myself as getting cabs door to door was killing me.

In terms of uni, I think the course I was doing was a big problem as my brain can't make any new connections. The neuro-physio is confident about this new referral and if that fails, I'll pay to see someone privately. I'll assess the situation in October/November and see how things stand. I've talked it over with my Mum and given that the main reason for doing it was to account for time whilst being unwell and showing future employers I can do stuff in spite of disability, we've agreed I should reapply to do a course I know well (such as English Lit) and just try and do that. I've got a shortfall student loans wise but saving all the Universal Credit should cover that. I think in a year's time, after some proper treatment and doing a course drawing on my long term memory, I stand a better chance. I'm saving a lot now as, if I'm able to do a part-time Master's come September, I won't be able to claim Universal Credit but given the stress that's put me through that's not a bad thing. I think doing a very non-taxing thing in person, once a week will be a good test of fatigue levels and brain functioning. Anything more than that's a no go at the moment but I'm trying to mobilise now I've got the new chair.

 

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You ARE Power in a chair!!

 

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@scififan:

That is excellent news! Im not too familiar with GarageBand - but I think it's an apple application if I'm not mistaken?

I agree with what Maymay941 said; you are POWER in a chair! And by that, never let anyone or anything stand in your way because of any physical disability.

In fact, "what doesn't kill us makes us stronger" in that regard. I've found our biggest testimonies come from our biggest trials. I know that to be true with my own journey of dealing with bladder issues and PTSD.

The one unique thing about life is that everybody has there own unseen struggle that we do not know about; it's not all glitz and glam like we see on social media.

I'm happy to hear things are going well and you are able to start to enjoy the hobbies you enjoy doing. That's awesome dude!

Blessings In Christ,
Honeeecombs