Disabled adaptions for BRAIN INJURY SURVIVOR

Hi

I was a previously very active and independent lady, who worked my butt of for the “wonderful” NHS, travelled the world (going off the beaten track to meet and help locals), did all sorts of charity work, hosted people in my home from all over the world (often for free) and did whatever I could to help anyone in need, without judgement.

Unfortunately I haven’t had an easy time of it, always having an unprecedented amount of bad luck, not helped by my inability to put myself first and say no to others, when I didn’t have the capacity to to take on even more. Ultimately this resulted in body shutting down and the simplest of tasks being like a marathon!

The onset of my current health issues was triggered by a skiing accident back in 2017, hitting my head. I didn’t receive the help I needed at the time due to a non existent support network, a Narcissist partner (now long gone), being let down by the NHS that is given my life to and not being well enough to understand the help I needed, let alone fight to get it. This led to serious life altering condition and making massive lifestyle changes, trying reduce the stress, distance myself from people who where a drain on me/where a negative impact on me, go at a slower pace and find an alternative way to support myself (now that I had been unfairly dismissed from work, for them to get out of paying me my disability pension) and was not well enough to work full time in such a demanding role. I achieved this to a certain extent but still struggled with saying no to people and coming to terms with my reduced functioning, then in 2019 Family tragedy struck back home and I stupidly dropped everything spending the last of my funds to getting emergency flights home to support the very people I had needed to distance myself from, without considering the consequences to myself.

I then ended up stuck due to lack of funds and covid 19 and got more and more unwell from the stress of trying to support myself against the odds and with all the additional stresses being piled on top and with people still demanding more and more of me instead of offering support and being stuck in the most un therapeutic environment with prospect of escape, still trying to support others and doing charity work when well enough (and when not well enough, because again my hidden disability wasn’t understood) and even meeting more people in need through my volunteering and trying to take in helping them too. I then stupidly helped family move house, and had a secondary accident (someone went up my backside in the van), and I declined even further to the point where I could barely get out of bed. Still I had virtually no support and was even taken advantage of by those I had supported and being neglected and discriminated against by health and social care and welfare services (the limited support is impossible to claim for people in genuine need without huge support already in place). When I finally got a Doctor to come out for physical issues caused by being stuck in bed, he advised he would advocate for me having someone here to support me 24/7 due to the inaccessibility of services and how limited I am when at my worst (which is 90% of the time now, due to lack of support and horrendously untherapeutic environment). The noise where I am stuck is horrendous for me (I can’t wear headphones/ear defenders etc. Due to the pressure and the white noise), and I now can’t even escape when I’m well enough to, because my “friend” broke my Van, which is the only way I could get about anywhere due to multiple health and mobility issues (and already was far from ideal for my increasing needs and declining health and mobility), but I’m already in massive debt (having never owed a penny in my life and always been incredibly frugal), so there’s no way I can afford a properly adapted vehicle (and I’ve been waiting 4 years for a proper OT and Social worker - keep being allocated and then re-allocated or discharged without them even completing assessment let alone getting anything done) and I can’t complete basic forms let alone jump through the hoops needed to get actual help. Even when approved the wait is Years!

the limited input from specialists I have had (massive waiting list, nowhere near sufficient services available and no way to get to appointments - I can’t speak on the phone and I have paralysing flare ups in busy noisy environments so hospital appointments are impossible anyway - I end up unable to move or speak let alone engage with the medic etc.), have identified that the only way for me to regain any level of independence is to have an adapted accessible and therapeutic environment with significant support and then work on graded exposure and increasing independence and regaining some sort of quality of life.

The adaptions needed are looking at £50,000-£100,000 and although would completely change my life (make it just about bearable) are not covered by the non inclusive disabled facilities grant.

I am never ever going to get back the life I had, but if I could raise the funds needed for adaptions it should not only mean my life is bearable, but also reduce my need for support (practical and financial) and even lead to me being able to contribute (pay taxes) again and be able to help others again, but there’s no way other than asking for the kindness of strangers for me to have any chance of ever achieving that! And unfortunately brain injuries and complex disabilities are not well recognised or funded by anywhere including health and social care services!

I am usually a very private person and I hate people knowing how bad things have got and judging me (with no idea about my actual situation and experiences and everything I’ve done). I have always been happy to give help (often to my detriment) but asking for it is the hardest thing I have ever had to do!

I haven’t given all the details of my condition or everything I’ve experienced or avenues I’ve already exhausted. Because I’m not able to write a novel (writing this has taken me weeks), and I’m sure nobody wants to read even more and I hate people knowing anything! … But I hope you will find it in your hearts to help in whatever way you can and share with others who might be able to help. Helping me now will also lead to me being able to help others again in the future! The thing that gives my life meaning.

☮️❤️