Disability=Expensive~ Help Please?!
I never know where to start with introductions... Well, my name is Tria. I'm 30 years old, disabled, British, Unitarian, a writer & bibliophile, a chorister, & a geek of many varieties. In my Twitter profile I describe myself as "eclectic, eccentric and exhausted", which is a fairly succinct description of how I live, though I do my best to get everything done that I can still do, while I can still do it!
To get into why I've opened this GFM page, I should first explain that I'm living with chronic illness both mental & physical as well as sensory impairments; my list of diagnoses include, among others, hypermobility-type Ehlers-Danlos syndrome, POTS (postural orthostatic tachycardia syndrome), rotational scoliosis, dyscalculia, bipolar disorder, OCD (obsessive-compulsive disorder) & PTSD (post-traumatic stress disorder). I use an electric wheelchair full-time, & I have agency carers visiting me to assist with my personal care morning, afternoon & evening.
I've started this page, though I feel quite intimidated by the idea of crowdfunding for my personal needs, because it was suggested to me that it might be a good way of trying to find some of the financial help I need to obtain some adaptations & assistance I've been struggling to afford, and to pay a couple of bills in heavy arrears that mounted up partly because of my difficulties in dealing with budgeting (dyscalculia, for those unfamiliar with it, is the equivalent of dyslexia but involving problems with understanding & processing numbers, measurements & mental arithmetic, instead of dyslexics' problems with language), and one lovely friend-of-a-friend has already offered to give me some money towards this if I set up an account here. (Holy run-on sentence, Batman!)
Firstly: though I have some support from agency carers funded by my local council & from a housing support worker, it's not really enough for me to get by.
In 2012 all my household help time (they gave me 3 hours a week at that point for someone to come in & help me do laundry & keep my home clean) was taken away when my personal care needs increased, as my local council (Manchester City C) claimed I was no longer in need of such support, despite proof to the contrary; since then cuts have been made that mean MCC essentially no longer fund household assistance for anyone in "substantial" need of home-care, which is how my particular level of need is classified. Since I can't bend forward past 45 degrees without my pelvic joints and lumbar vertebrae beginning to dislocate in a very painful & dangerous way, & I can't be in the same room while someone (me or anybody else) is operating a vacuum cleaner, as most I've been able to afford over the last few years make the room so hot I come close to fainting from how poorly my body regulates its own temperature in the face of change, that means that my home is now in a bit of a state - to say the least. I also can't iron my own clothes as my wrists dislocate from holding the iron, nowadays. But the condition of my flat is what bothers me most, because if it gets too bad it may mean breaking the clause in my tenancy agreement that requires me to keep it neat & clean, & risking my home, which I cannot afford to do - for SO many reasons.
So the first reason I'm putting up this page is to try to raise a little ongoing money to be able to pay for a couple of extra hours' care per week from a different (more competent!) agency, so I can get someone to come in & help me with cleaning, tidying, laundry & ironing.
The second reason has more to do with bills & benefit issues. Right now I'm in transition between DLA & PIP, but since by a mishap I'm past the 28-day threshold, I'm not getting either right now until the DWP finish processing my PIP application. My DLA should have been due today, though, in other circumstances. That means all my bills that usually come out in the week when I get my largest benefit payment - on the second Tuesday of four - are set to come out, but there's nothing in my bank account to cover the payments. I can't extend my overdraft of £80 any further than it's already been extended, and my family aren't generally in a position to help me out with money (EDS is hereditary, & my sister has the same diagnosis, & we're fairly certain our father has it too).
In addition to this, British Gas have been harassing me to pay them arrears of approximately £400 on my electricity bill, which I'm finding difficult because one of the reasons this bill ran up so high in the first place had a lot to do with BG making several major, consecutive mistakes while setting up my payment plan(s), so I don't trust them to have access to adjust my payments themselves, & they refuse to stay in touch with me via email instead of telephone calls despite my phobia of using the phone & my hearing & speech impairments.
The second reason this bill is so high has to do with my specific health needs, in that I struggle with self-regulating my internal thermostat, and since May I've needed a large fan more or less constantly turned on & pointed at me in my home just to stay conscious & coherent, day & night. At night I have been using the thinnest duvet available, a 4.5 tog summer quilt, yet still need the fan, as my flat has triple-glazed windows but is on the ground floor next to a main road, & I have been burgled before, so dare not leave windows open for any length of time).
The third and final reason for my crowdfunding page is to try to collect a little something towards a couple of items of adaptive technology that would be of great assistance to me now and in the future. My support worker has tried to find charities that might help people like me with such things, but I'm in an awkward age gap - being between 26 and 49 - where few charitable organisations really cover assistance for individual disabled people.
The first item would be a well-fitted wetsuit to enable me to get back into hydrotherapy using a standard-temperature pool, as I can no longer use the body-temperature hydrotherapy pool at my local hospital due to my POTS symptoms, & the standard temperature for adult swimming pools tends to fry my nerves & cause me quite a lot of pain; and the second item would be a new voice dictation program for my laptop, as my manual dexterity is continuing to deteriorate, & this would allow me to carry on using my existing laptop to write, code, communicate with friends & family, & deal with my online bills. I was gifted a version of Dragon by a friend some years ago, but it wasn't compatible with any operating system beyond Windows XP, & my present laptop (which is four years old) runs on Windows 7. The third item would be a GoPro camera, which can be mounted on a wheelchair frame, as I've been assaulted 4 times & mugged once since I've been using visible mobility aids, & I frequently have trouble with access & using public transport, including verbal abuse from bus & taxi drivers & fellow passengers. I want to be able to record it in future, because I've not been able to do anything about the incidents that have happened to date. I want to change that. I'm not going to let myself be a victim any longer.
As an ongoing situation in certain ways, I've named a figure that will cover the bills and the static items, for the time being, but I'm likely to revise it a little as & when my PIP assessment's over & done with. As to how soon I need the funds... for the bills, as soon as possible, but the rest can wait a little, though I'd prefer to be able to get some help with a good clean of my flat sooner rather than later so I don't lose it & can get rid of the awful fruit fly problem I'm having with my kitchen right now.
It would mean so very much to me for anyone reading this to help, even if only a very little bit, or even just by sharing the post, as I know many of my friends are in similar positions to mine financially and couldn't afford to donate anything to help me in that way. That's okay. I need help, but I don't wish to guilt anybody into it - anything, anything at all will be gratefully acknowledged & accepted. (Remember GFM charge 5% of donations, though; I always forget about that when I'm donating!)
I know there have been some people asking for far more money than they need on sites like these, or saying they'll do certain things with donations then just running off with the money... That being the case: if you want any further proof as to who I am &/or what I'll be doing with the money, or what I -have- done with it if you're kind enough to donate anything, I promise to keep receipts & show you as much (anonymised) documentation as I am able without risking becoming a target for identity theft; I can also give further details of my health issues in private if need be.
Thank you so very much for reading & thinking about this; even if you don't or can't help me, I still appreciate that you took the time to read my cf page.
Sincerely,
Tria Lynn Hall x
P.S. Revised from 650 to 750 19 September 2016 (I remembered the third item I'd intended to add to this if I ever made such a post, & have revised my goal accordingly).