First of all, I apologise that I haven’t been posting lately. With coursework deadlines, my first year of university almost over and starting a new job life has been a bit of madness but I promise at least once a month I will blog for you all.
Lupus UK recently published my article on their website! Honestly, it’s a complete honour. Lupus UK is the only nationally registered charity for Lupus sufferers, so to have them publish something that I had written, and to share it with fellow Loopies has been a massive deal for me. I have never felt prouder! The comments on the article that I have received (including those of a very proud mum of mine) have completely restored my faith in the good in life, I feel like I’m actually making a difference to people and that is the intention.
I’d like this to be a follow up post from what is written in my Blog post published by Lupus UK, but first I feel the need to have bragging rights and share some of the lovely comments I’ve received from people, Loopies and otherwise.
Naturally I have to start off with my mum, who has been nothing but loving and supportive through the diagnosis of the illness, despite how frustrating it is for her to see me go through so much pain:
“Very proud mummy! Beth is and always has been a fighter. Knock her down 7 times and she sure as hell Will get up 8! Keep fighting my purple minion.”
“Hi Beth, you make the saying,’ don’t ask, don’t get !!’, so very true. It is great that you can still achieve your goals, albeit, with outside help. But it doesn’t matter how you get there as long as you do. Hopefully, better control of your lupus will come in time, and you can be more independent. You are doing all the right things, and your attitude towards everything is good. Thanks for sharing and good luck with your degree.”
“Lovely to read Beth – well done for coping so well in your first year at uni, for staying positive and accessing and accepting help. You are an inspiration. I am a lot older than you and currently studying by distance learning – reading your blog has helped me to stay motivated and not be too hard on myself when I just can’t face learning, reading or revising. And I totally get that books are just too painful to hold, read and turn over pages. Good luck with your degree xx”
Last but not least, Mrs Fernau 😉
“Wow!!! Great article! You are amazing!”
Here is the follow up:
I’ve recently had a meeting with a lovely lady, Liz, who is an assessor for Student Finance England’s – Disabled Student Allowance (DSA). I have nothing but praise for her approach. She was incredibly enthusiastic about her job, incredibly polite and extremely understanding of my condition, which I find is somewhat of a rarity as far as Lupus goes. She explained to me that having previously worked for the NHS, she knew of the condition and knew of people with Lupus. Her understanding of the condition put me at such ease, and made the whole process a lot easier to understand and deal with.
I believe I have talked a little bit about DSA before, if not I’ll briefly explain here:
Student Finance England (often seen as Student Loan Company or SFE for short) are responsible for loaning students the money to pay tuition and rent while studying at university. However, if you are a disabled student you are entitled to apply for their disabled student allowance, which is basically a grant, something you never have to pay back. They send an assessor out to assess your situation and your needs for equipment such as, in my case, a Dictaphone to record lectures when I can’t write. The assessor writes to the appropriate people asking for quotes, then they gather all the information of quotes together, put it into a total, they email the needs plan to you asking your approval and if you wish for any changes to be made, once you approve it is sent off to the appropriate people and over time these things are put in place for you.
As of today I am currently in the waiting stage. I am waiting for things to be put in place now that I have given my approval for my fully confidential plan.
I have been granted access to funds for a bag on wheels to carry around a laptop and books with ease, a Dictaphone and a specially designed desk chair to fit my needs and make me feel as comfortable as possible during a flare up. This is just to name a few of the support items that are being funded. I cannot thank the DSA enough. I know it’s going to make my life much easier.
So, that’s April. Lets see what May brings…