Monday 31 December 2018

2019 goals and missions and my word for the year

So I'm not one for setting New Year's resolutions but there's some things that I would like to do more of and set myself to do next year:

  • Do my nails and make-up more often plus dress-up more
  • Keep up with my 'One Second Every Day' project (and remember to do it each day!)
  • Continue working on and growing my blog
  • Remember to put image descriptions on my blog and on my blog's social media accounts.
  • Grow my YouTube channel and improve my video making skills
  • Write reviews for Euan's Guide (online accessible places trip advisor)
  • Make it my mission to improve the accessibility of red cords using the red cord cards I've ordered fro Euan's Guide
  • Get into a better day and sleep routine
  • Remember to take all of my tablets correctly and on time
  • Get better at doing my physio exercises/stretches and 'Yoga for M.E.'
  • Keep my bedroom tidy and tidy up after myself (even if it requires a nap/breaks)
  • Keep up with my Warrior Beads project
  • Get back into my Bravery Bottles project
  • Look into going on a holiday with Revitalise (accessible holidays for people with disabilities)
  • Make Instagram stories and create highlights to document my year
  • Get better at sending out birthday cards
  • Keep on top of my emails!
There's more I'll probability add and develop as the year goes on.

2018 was also the year of 'gratitude' I pic a word to try and live by each year. i've been thinking a lot about what my next word will be and lately I've been feeling stuck and low which my health and funding for various things going no happening so I think my word for 2019 might be 'hope'.

[Image description: the word 'hope' written in black handwritten writing]

Friday 28 December 2018

December 2018 Birchbox


"Twinkle All The Way"

This month's Birchbox was filled with a few extra treats.

 LARITZY Cosmetics Long Lasting Liquid Lipstick in 'Tidal' which is a lovely dark rosy pink colour.


Percy & Reed 'Totally Hydrating TLC Mask'
A moisturising hair mask. I've received other Percy & Reed products from Birchbox and received good results so I'm popping this away to use in a little self-care paper session.

Oh K! Bubble Sheet Mask
"This innovative sheet mask reacts with the oxygen in the air to form tiny bubbles when you place it on your face. Not only does it result in a hilariously foamy face but it purifies and smooths skin for a radiant complexion"
This sound quite a fun product to use and I'm looking forward to trying it out.
Rituals - The Ritual of Ayurveda Body Cream
I LOVE Rituals products, they just smell amazing. I've tried theirs other product ranges but I've not used this product range before but I'm sure it will leave my skin smelling lovely.
Benefit 'Chachatint'
'Mango-tinted lip and cheek stain. I already have this product from another Birchbox and love the colour. A little goes a long way so it lasts ages.
Birchbox hair comb. Something I've been needing but not yet gotten round to buying so thanks Birchbox!

I'm really looking forward to seeing what next year's Birchbox's will include. 
My cosmetics/toiletries stash is already quite extensive already but it's nice to have a selection and save products to use and have a little self-care TLC pamper session.

Wednesday 12 December 2018

YouTube Video: Aids and adaptations I use [CC]

Second video up on my YouTube channel. This one is about some of the aids and adaptations that I use.

I've not been sponsored by any of the companies that I've featured but I'll put links below to some of the gadgets I use if you're interested in purchasing them yourself.

Link to my YouTub channel can be found by clicking here.

Tuesday 4 December 2018

International Day for People with Disabilities 2018

Today is the International Day for People with Disabilities.

I think so often when you have a disability you're faced with so many different barriers. 

I can't work, go to University, access certain places because it doesn't have the access I need like ramps or the aisles are to narrow, I can't get nearly parking or a space reserved for blue badge holders (and the misuse of these spaces). The list could go on. 

I'm also faced with personal barriers in terms of the unpredictable and relentless symptoms that I face each day as well as access to care and support. Today I found out that I can't access the specialist falls clinic because I'm too young; they only take referrals to people over the age of 65. It's like I'm being told I'm young to have falls yet today I've fallen twice and once yesterday. I've also been fighting for funding for a care package (carers) for years and the care agency I employ privately have openly said that if I was older my case would be dealt with differently and many people involved in my care from my care agency to community nurses all say I need more care. There are also barriers to specialist care; I'm currently waiting and asking to be referred to a specialist M.E. team but we don't have one locally; for a while I've wanted and feel I'd benefit from hydrotherapy but again this is not something our local hospital trust has (though hopefully when I attend UCLH's hypermobility team's exercise programme I can get some hydrotherapy sessions but it would require a 6hr drive to get there but I feel lucky to be under their care). I've also been waiting over a year now for specialist funding for a place in neuro rehab in Leeds and I'm in the middle of everyone passing the responsibility onto someone else to get the funding requested.

There are also the financial barriers to having a disability - See Scope's 'Extra costs: The financial penalty of disability'. Yes you get a disability allowance (PIP or Personal Independence Payments) but it doesn't stretch as far as you think. Out of that come things like extra food money because I have to buy specialist free from foods because of allergies and intolerances, I go through extra laundry costs because of my incontinence, I have the cost to pay carers and if I could afford it I'd pay for more care than what I'm currently getting because its not enough and often I have to choose between leaving the house or get a wash and that shouldn't be the case, there's also cost of adaptive equipment that the NHS or social care don't provide and clothing  and in winter the higher energy bills because you I need the heating on more because the cold makes my symptoms worse, or there's the cost of taxi's because I can't drive or use public transport. "On average disabled people face extra costs of £570 a month related to their impairment or condition".

There are social barriers. I'm mostly housebound so I don't get out much as I'd like to such as to be able to go to groups or see friends as often as I'd like. Letter writing is my way of connecting with the world outside. 

I think a large part of the barriers I face is the invisibleness of my disability/illnesses. When you see me in my wheelchair or with my crutches you can see the wheelchair or the crutches but you don't see what's going on underneath and you don't see the unpredictable nature of my disability. One minute I can be fine; the next I'm unconscious having a seizure or double bent pain. You don't see that I struggle with my cognitive function or washing my hair or the energy it takes to simply get dressed each day.

So what can be done to breakdown these barriers? Make buildings more accessible and for staff to be trained in supporting people with disbailties, produce information in alternative formats easier to obtain, support disabled people to access the care and support they need regardless of where they live or their age and less of the 'postcode lottery' when it comes to health and social care, for the public to be more aware of the barriers faced by people with disabilities, such as by not abusing disabled parking spaces and to see beyond the visibility of a person's disability/illness, for red cords in disable toilets not to be tied up (!) and for laws and legislations to be changed and made. (The list could go on!

Despite the many barriers I and many other people with disability face I will not let it stop me or define me. I must simply fight on. There is more to me than my disability.

Sunday 2 December 2018

New glasses

So these are my new specs that I though I'd show off to you. It took over an hour sat in Specsavers trying to find the right frames that a) I liked (I desperately wanted some Cath Kidston ones) and b) ones that would fit my think lenses due to my dodgy vision and thick prisms. 

I picked up my new glasses Wednesday and putting them on it was like seeing in HD. I'm still keeping my old glasses with the smaller prism for days when my vision is better. It's also nice to have more than one pair of tinted lenses now. I've found having the tint so helpful to my photosensitivity (light sensitivity); it just calms everything down and makes light tolerable to my M.E. and headaches (though you will still see me indoors wearing my sunglasses).

Due to my muscle and nerve weakness I have bad eyesight which has worsened since I became ill - I've permanently worn glasses since I was about 12. And a symptom of FND is double vision which I have quite badly. I also have Scotopic Sensitivity Syndrome also known as Irlens so I also have a pair of purple tinted lenses for reading.

On my computer and phone thanks to assistive technology I also have tinted screens and reduced white point which makes life a lot easier.

I might do a post on Scotopic Sensitivity. So many post ideas - you should see al my draft posts I have on the go!