I haven’t written for a while as I’ve been pretty busy! But also struggling with fatigue! Well what with limited energy, PIP tribunals, PA interviews & diagnosis drama, I’m not too surprised. I sometimes underestimate how much I actually have on my plate right now!
I thought I’d do a quick little update on my life as constantly explaining myself can be super draining!
I’m just so confused! It’s such a long process!
There isn’t really too much to say here other than the fact my doctors think there’s more going on than they initially spotted!
I may have been misdiagnosed & my consultants are pretty worried about some of my symptoms being related to alternative diagnosis’!
SO BASICALLY NO ONES GOT A BLOOMIN’ CLUE WHAT’S GOING ON BUT SOMETHINGS NOT RIGHT!
I’ve been referred to all the top dogs to see specialists for what feels like everything in the world! Today, my consultant told me I have ‘an extensive, impressive repertoire of illnesses’. Whoop tee do, I’m so proud?! Fingers Crossed this list shortens with time.
I’ve moved house in Brighton & I love it. I’m living with a mixture of 3 boys and 3 girls. I love them. It’s really good for me to be able to socialise at home in a big house, as on days I feel too unwell or unable to get out, I don’t become socially isolated!
In my Consultants words- I’m ‘not allowed’ to go back to studying at Uni this year which sucks but I also totally understand. Ofcourse the decision is in my hands but I don’t want to go against medical advice and make myself more poorly.
He said something the along the lines of- ‘you’re too poorly, don’t go back are you crazy?’ He was basically saying if I tried to go back to uni whilst still being poorly it’s unlikely I’d manage and I’d therefore be more discouraged & less likely to continue on in the future, if I am well enough to do so years down the line.
It is such a pain in the bum that I can’t live the life of a normal 20 year old but I won’t feel sorry for myself & I’m definitely making the most of it: having a few cocktails, then going home on my mobility scooter is always fun anyway!
I didn’t realise how much I was struggling before they started! THEY ARE BOTH SO LOVELY! I have two fabulous new PA’s (I feel too fancy saying that, but I guess it makes me feel better about being a 20 year old who requires carers!) They are genuinely improving my life so much & taking so many small stresses off my shoulders. I’m going to be doing some more in-depth bits and pieces on what my carers do, how I employ them etc etc soon!!!
Oh gosh. I’m at tribunal stage currently. I’ve been awarded some of PIP. My mum has been my absolute rock sorting this for me! I’ll talk more on this when I have the spoons. Three points to take away: It’s a joke like SERIOUSLY, I’m too exhausted to do it alone, It’s a joke x2! X
I’m having Tic Therapy at the moment which is exposure response therapy for my tics and it seems to be going really well right now! Patricia (my tics) seem to be a lot calmer although I still have tic attacks and feel pretty exhausted but it’s still early days and they do feel more controlled! I’ll keep everyone updated here.
I’ve got tonnnnnesssss of blog posts planned both here and with Access Your Life as well as some Instagram features & Little Poorly Brighton stuff. I’m also super excited to do more with my new position as a Global Brand Leader for Invisi Youth! Funnily to do all these amazing things as a disabled person who functions on a minimum of 14 hours sleep a day, it can be quite challenging! Give me time and hopefully I’ll have brain dumped properly and I’ll be a little more with it!
Sorry for the ramble & I hope it didn’t come across too boring! I just wanted to do a little update!
Take care of yourself and tell someone you love them today!
Since my health deteriorated I can’t help but feel like I was massively thrown in at the deep end. Doctors offer little life advice and mainly medical advice- we don’t get told how to cope, manage and access services. Speaking to many many chronically ill people through the creation of this blog, I have discovered so many, like me, are unaware of our rights as disabled people.
Now I hope I don’t need to say this, but I’m going to mention it anyway. Disabled people ‘perks’ are not perks- they are there to make life more accessible for disabled people and to bring us up to an even-playing field. Please do not take advantage of any of the below and only apply for what you need.
Some of the following suggestions need a more in-depth explanation in individual posts- for example PIP, benefits, PA and care support. I will cover these more in the future. Talking about the more ‘official disabled stuff ‘ can take up a lot of spoons!
I’ve learnt a lot about the world since being sick. Disabled life is expensive. It takes double the amount of time to do everything. The general public can be weirdos. Talking about your access needs or educating others isn’t being selfish.
Let’s start by stating this: It is against the law to discriminate against someone because of their disability.
Disability Rights UK is a great place to go for any legal queries or advice regarding work or access.
Disability Equality Act 2010: ‘You are considered disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.’
Disability Equality Act 2010.
Disabled people are allowed to work, study and access the community. We are allowed to live a fulfilling life and reasonable adjustments should be made to ensure we are able to do so. Ofcourse our health conditions can often limit our choices but reasonable adjustments should be put in place to aid our abilities.
Reasonable adjustments: “Reasonable adjustments are changes to the work environment, employers, shops, local authorities and schools that allow people with disability to work safely and productively. Under the Equal Opportunity Act 2010, ‘disability’ includes: physical, psychological or neurological disease or disorder. illness, whether temporary or permanent.”
Scope has some amazing resources for more depth into this on their website. Also note that options available to you alter from county to county and town to town- annoying right?!
They like to make things a faff! Remember that, however once support is in place it will be life changing.
Discounts:The cost of being disabled is high! People often feel we are ‘lucky’ for being entitled to discounts. I mean. No comment.
Brighton has a great scheme run by the charity ‘amaze’ they offer ‘compass cards’ which entitle disabled young people and their friends, family and carers discounts and freebies on local attractions, leisure centres and cafes. Google to see if your town has something similar! I do think a lot of funding for things like this has to do with external factors such as age, income etc…
Music Festivals free carer tickets: Accessing ‘normality’ can seem like it’s a whole world away. Attending social events is never easy and music festivals are up there with one of the hardest, that being said… There is an absolutely fabulous charity called ‘attitude is everything’they team up with all big music festivals across the UK such as community festival and reading festival to ensure music is accessible to disabled people. Their support is amazing on the day as well as answering any concerns leading up to the event. They offer support such as accessible toilets, viewing platforms, camping facilities with electricity for over night events, first aid, free carer ticket with proof of disability (whether they are a formal carer or not). Just find the accessibility tab on the festivals website to fill out online forms or call/ email them directly. In my experience each festival have been great.
Many other music gig/ concert booking services also offer a similar services including carer tickets. The link below is an example, but always contact the ticket provider. Viewing platforms, quiet rooms, queue jump, seated not standing are all examples of support available at music gigs no matter how big or small.
Cinema card: The CEA card entitles you to a free care ticket if you would be unable to attend without the support of a PA. As well as this, individual cinemas will have set schemes in place to support any access requirements you have.
Accessible theatres: Everything from disabled friendly viewings for autism or dementia and toilets, PA/carer tickets all to seating and transport.
English Heritage offer some free support for disabled people and their carers accessing any of their sites.
Getting out and about as a disabled person can be a huge challenge and whether you have a learning disability or find yourself wheelchair bound all needs are valid. Social isolation is a huge thing for disabled people and sometimes the thought of ‘faffing about’ trying to arrange a day out is not worth your energy. So many larger organisations are beginning to realise this and there is more support in place to aid your access needs. Not everything always runs smoothly, but knowing your own needs or having a carer/ friend know your needs can help.
Remember the judgement you receive from others is their problem and not yours. Until someone has spent a day in your shoes, they cannot comment.
Care teams: Care coordinators are few and far beyond. Speak to your GP about whether or not there is a possibility to have a medical practitioner or team look at your care holistically. I am not the best person to get advice on this as I don’t have this in place!
Appointments: I’ll be posting a ‘navigating hospital appointments’ post soon as there are lots and lots of pointers surrounding this.
PALS– Patient liaison service at your local hospital or their main switchboard are always a good place to start with queries and complaints.
Ergonomic Equipment: If you are working or studying, you could be eligible for a free Occupational Health needs assessment to enable you to stay in work or education with more support to nurture your disability, from this you may be able to get a chair, desk, computer equipment, assistant, software etc.. to aid your disability in the work place and ensure reasonable adjustments are met to help you meet your potential. OH cover everything from undiagnosed back pain to brain injuries, cancer to autoimmune conditions.
Disability Equipment: Below are links of sites which have a multitude of daily living aids to support your independent living. There are aids for almost everything you could possibly think of, which help you and your carers at home. You do have to pay for these aids, but you may be VAT exempt due to your disability- your PIP money can be used to purchase items. (I’ll discuss PIP more soon)
Amazon also have lots of options- if you message the seller, you may be exempt from paying VAT. Ofcourse not only for help with aftercare, but it is also always better to buy directly from the disability company ethically.
Carers allowance: The UK government funds people on low income who are ‘unofficial carers’ this can be a friend or family member who does or doesn’t live with you but offers care support for at least 35 hours a week.”You could get £67.25 a week if you care for someone at least 35 hours a week depending on their benefits and whether you earn under £128 a week.”
Adult Social Care: I had a few referrals here and am going through the PA/ Direct Payment process- I will do a separate post on this soon but for now, the resources below may be useful.
DSA: Disabled students allowance. If you are a student you can apply for DSA. This is not physical money. They offer you a needs assessment and then discuss software, paid mentor support, equipment etc which could help you in your studies. The idea is to ensure disabled students are not disadvantaged and on an even playing field with their peers. You apply for this through student finance. I’ll discuss this further in another post.
PIP: A specific pot of money given to disabled people based on the impact of their health on their daily life and not a diagnosis alone.
I will be creating a ‘PIP for dummies’ guide very soon’ Personal independence payment is a big stressful faff and the system is not made in favour of the disabled people applying for it! I understand PIP can be particularly overwhelming for those who are sick. My tips for now. Get an advocate or friend/ family members support. Contact a local charity for help. Appeal. Don’t panic, hang on in there and get an advocate or carer to help… more on this soon.
Benefits: If your disability affects you so severely that you are unable to work, you can claim benefits. There seems to be a lot of stigma about people claiming benefits and people abusing the system. Know you are entitled to access support without judgement. Only you know what you are like on your worst day! I will explain these in more depth in future, but for now- citizens advice bureau and the below links should help a little. Sadly for some benefits really aren’t enough to live off so external support can be needed too.
Transport: Travelling on public transport is really hard as a disabled person- this becomes even harder when travelling alone and having to deal with the general public! Allow yourself extra time and be mindful that not everything always runs smoothly.
Below is hopefully every link you could ever need for transport!
Disabled persons bus pass: You could be entitled to free bus travel everywhere in the UK. Google ‘Free disabled bus travel’ or ‘disabled bus card’ then your town and it will come up with a link to your city/ council town hall- you can usually print the application online and post it or go into your town hall and there is a department to do it there. *top tip- if you go into the town hall they will take a photo of you for your ID- you might want to know this before you go!
AIRPORT SPECIAL ASSISTANCE: Contact the airline and airport you will be travelling with and tell them the dates and times of your flight- ask for special assistance- remember this needs to be done before you travel. I’m going to do a ‘how to be disabled- abroad’ post soon.
Brighton has a scheme called ‘helping hands’ your area may have something similar, have a gander.
Motability scheme: ‘The Motability Scheme enables people to get mobile by exchanging their mobility allowance to lease a new car, Wheelchair Accessible Vehicle ( WAV ), scooter or powered wheelchair.’ (PIP again!)
Toll bridges and congestion charge: You may not have to pay or be eligible for a discount. Disabled people often have to drive to travel long distances for appointments etc.
Below are some examples:
Toll exemptions. You may be exempt from paying toll fees. Many disabled people cannot access public transport easily, and therefore need to drive more, spending more on petrol, parking etc…
Assistance dogs aren’t just for people who are blind, companies such as canine partners can aid you in your independent living by matching you with an assistance dog.
Watersure uk: The WaterSure Scheme can help you if your income is low and you use a lot of water due to your disability. They can also warn you if there are any issues which may leave you with out water. Many gas/ electric companies do the same.
RADAR KEY: A blue key with a heart shaped top. Many disabled people need clean, fast access to toilets. They open the majority of locked toilets in the UK. Open disabled toilets in parks and public places as well as restaurants etc which may support the scheme. These are between £3-4 and available from many care shops, lots of big boots, and online simply type ‘radar key’ into google and there are lots of links. If in Europe, there is a similar scheme called the ‘eurokey’.
BLUE BADGE: If you suffer from mobility issues, struggle to walk more than a short distances, anxieties around long distance walking which could lead to issues for your disability such as bowl incontinence or autism you may be eligible for a blue badge. This enables you to park in blue badge bays and on double yellow lines- subject to the towns rules- please always check the rules of the town you are in, as you are still likely to get a ticket. I will do another post on life with a blue badge. YOU DON’T HAVE TO DRIVE OR OWN A CAR TO GET A BLUE BADGE!
Sunflower scheme: The hidden disability sunflower scheme- started in airports but now implemented in shops, you can pick them up free in some big retail shops and supermarkets at the customer service desk or buy one here. I LOVE THIS SCHEME BUT THERE NEEDS TO BE MORE AWARENESS ON IT!
Not all disabilities are visible: Google ‘Not all disabilities are visible’ there are tonnes of resources and information from car magnets to badges, lanyards and stickers. Etsy is a great place to support small local businesses.
Access leisure card: Many councils have discounts or free leisure facilities for you and your carer. I have linked the Brighton one below as an example. Some schemes allow up to 3 people to attend with the disabled person free of charge.
As much as we are super lucky we don’t live in places such as the US, where we pay thousands in medical fees- if you regularly need lots of medication – prescription prices definitely do add up. £9.15 per item.
Here are a few ways you can save money on prescriptions.
If you are being prescribed something which can be sold over the counter such as a mild excema cream, paracetamol based medications, antihistamine, nurofen, ibroprofen gels etc, it will be cheaper to buy it over the counter than receive it on prescription. It will save both you and the NHS money.
See the link below to see if you are entitled to free prescriptions.
Medical exemption certificate, Maternity exemption, low income exemption, HC2, HC3 form are examples of free prescription entitlement.
Prepayment prescription Certificate: If you are not medically exempt, you are able to pay in ‘bulk’ for as many prescriptions as needed prepaid. £29.65 for 3 months. £105.90 for 12 months.
Apple Products: I’m not sure about Android but apple products have a range of accessible features. Accessibility in Settings can enable larger font etc. One feature I like it assistive touch- I have the little grey button on my screen as my hands hurt trying to stretch for the buttons all the time- you can turn the volume up and screenshot, restart etc all with this button.
Putting your medical information including allergies in the Health section of your phone can be good for 999 callsas it can be accessed if your phone is locked and you are unresponsive.
Writing ICE after emergency contact details.
Accessaloo-finding clean and accessible toilets. If you know me well you’ll know this is always super handy for me in a rush! ‘Navigate, add, save, rate & review accessible toilets’
Wheelmate– finding clean accessible toilets as well as disabled parking- app users can enter details of their finds.
Accessable– Originally called DisabledGo- Access Guides with accessible information for disabled people, carers, wheelchair users. Includes restaurants, airports, hotels, hospitals, toilets and more.
Medical id: These are genius. Your id will come with an individual pin code on the back of the red circle piece. You then log in online and enter all your details of operations, allergies, diagnosis’ etc. They do have cheaper options, gold, other designs etc.. The idea is that you have your medical details on file and if you were to be in an emergency situation where you are unable to communicate or respond medical professionals or the ambulance service will recognise this symbol. It is a universally recognised symbol which commands attention. In my opinion the best place for the id is on your wrist as a bracelet or on your neck as a necklace- this is because this is where our pulse is checked. That being said they do have cards, keychains etc… Make sure to regularly update your ID details on file online. THEY COULD LITERALLY SAVE YOUR LIFE!
I am beginning to write for a new company called ‘Eq4all’ or ‘Equality for all’. A task I am taking on aswell as running social media accounts is connections in Brighton.
I have began to compile a big fat list of ‘inaccessible’ spots in Brighton. I intend to arrange a meeting with the local council to discuss these as it is not okay! It could take me some time! Bare with…
I also am in the process of having lots and lots of meetings with local charities & organisations to get my ‘a little poorly- Brighton’ group up and running.
Having an invisible disability in a world that ignores people with more visible disabilities is hard. I have ME. I sleep a lot. It’s my main problem. People do not get it because they cannot see it. Sometimes I wish my disabilities were more visible. Although being an ambulatory wheelchair user, (someone who uses a wheelchair but can walk,) I have learnt the British public are very quick to avoid eye contact & walk in the other direction. On days I’m very very fatigued but still have day to day tasks to do getting out and about can be a challenge. The world is not accessible for people like me. People struggle to understand what the word ‘accessible,’ means, accessible can mean a variety of things for a variety of people. Accessible toilets- emergency red cords being at the right height for someone who may fall in a disabled toilet. (10cm off the ground). Having an alternative to a giant step outside a store. Flat ground as opposed to uneven surfaces.
The way I’m looked at in a wheelchair or not looked at – ignored, can have a massive toll on my mental health. I have a mobility scooter but yes I can walk, WOW?! People are amazed when they see me stand out of my scooter – as if they had just seen someone rise from the dead out their coffin. It’s astonishing. I’ve had many a day out on my scooter getting stuck, rammed into boxes of inconveniently placed products in shopping isles or attempting to go up a step & completely misjudging my ability to ‘fly’ & crashing straight into it going flying. It frustrates me that there are sometimes no other options for me. Just the other day I had people staring at me as I disembarked my scooter, attempting to carry it up a step, out of a pothole, falling side to side – dismantling the seat, all to grab some lunch from a shop. A human right. Situations like these trigger immense anxiety but I know I am lucky. I am very stubborn and do not ask for help, even when I know I need it. I am lucky in the sense I am able to stand & walk short distances. The many times I have found myself in situations similar to these, I have stopped- felt sorry for myself and thought about the 13.9M other disabled people in the UK alone who may not be able to have got up that step, or through that doorway. Having a disability means a lot of my control is taken, the inaccessible world is beginning taking my dignity too. Stopping disabled people from having basic human rights sucks & it is not okay.