So… (I always seem to start my chatty posts with so?!)
Sorry I’ve been a little inconsistent with posting, ironically having a chronic illness is unpredictable and my energy levels are all over the place. I’ve been really busy recently (for me) and over the last few months, I’ve been awarded Direct Payments through adult social care, which enable me to hire carers to help me with day to day life. (It’s not as scary as it sounds, I promise).
The process in Brighton for adult social care was pretty simple and they were incredibly supportive. I am planning to do another post on the process of this soon. For now, what you need to know: carers through adult social care are called PA’s- Personal Assistants- (this makes me feel super fancy lalala!) There are a few ways you can employ your PA’s but as mentioned above I will discuss this further in another post.
Making the mental shift of needing care support wasn’t easy but the fact that my PA has become one of my friends has really helped with this. Although her role is not your typical care role, she does help me with aspects of personal care, showering, organisation, days out etc… We joke that her skill set for her CV is becoming very extensive since working with me, she’s done everything from building my power chair and being my personal chauffeur to accompanying me on days out. She is my personal shopper, hairdresser, cleaner and type writer all in one.
For me, going out with my friends has been anxiety provoking since being in a chair I worry they feel they can’t do what they would want to do as I may hold them back. Having a PA means she can come out with me and my friends and we all have alot more fun as the responsibility isnt on their shoulders and the guilt isnt on mine. My friends from home came to visit and we went for drinks with my PA like we would any friend, she drove us around etc. If my carer was alot older than me I think we’d feel a bit like we had our mums with us on a day out, having someone my age makes it easier to blend into society. I genuinely feel like I’m out with my friend who happens to being paid to look after me.
My PA hours are pretty flexible and she can come round to get me ready for a hospital appointment or she could make us both dinner and help me tidy my room. Being chronically ill, I’ve realised it’s the little things in my life that I struggle with. Doing my bra up, doing my washing, cooking dinner, showering, driving, it’s all the steps before an activity that waste my spoons meaning I don’t get out or don’t enjoy an activity. Having support for all the ‘life stuff’ really helps me focus on being able to live a little more like a normal 20 year old. She doesn’t come over to help everyday but funnily enough if she isn’t over to do care stuff shes over having fun with us. In fact if I don’t see my carer (she likes to be called my friend) for a day it feels a little strange!
My housemates love my PA they get on really well with her and I love that. I was worried about my housemates feeling uncomfortable with a carer in the house but my PA really doesn’t feel like a carer she feels like one of us. She’s been amazing at looking after me when I’m unwell and answering the phone at 5am and bringing me tablets at midnight when I’m having a nightmare. She even helped scare my housemates with a halloween mask which was brilliant. I think having my carers actually helps my housemates feel more at ease knowing they’re living with a poorly person but the responsibility isn’t on their shoulders. They know they will sit with me if I’m poorly and call 999 in an emergency but also know they can call my PA who can be there in 5 minutes. It makes me feel less guilty and takes the stress of their shoulders. As students they didn’t sign up to be my carers!
I’m thinking about making a little video about the employing a PA process and life with a PA as it was something I really struggled to find advice on when I was looking. Let me know you’re thoughts here!
I am currently interviewing for another PA which is an extensive process and leaves me pretty drained. My housemates do an amazing job of waking me up, cooking for me and carrying my stuff etc when my PA isn’t free but
Final update- I’ve started using the F word in my tics. Not good. My PA takes the insults like a champ. Hoping these don’t last!
I recently had a lovely ‘staycation’ get away in Cambridge with my friends, we stayed in an airbnb for 4 nights which was lovely/ it was the nicest airbnb I’ve ever stayed in!
As with anywhere I go, trouble tends to follow me and we had a few major mishaps with the ol’ mobility scooter. I’ll dedicate another post to this but what with flat tyres, dead batteries and broken scooters it’s safe to say we had a dramatic trip.
So I’m going to start with a special shoutout to an absolutely wonderful man called Martin who worked for Shopmobility in Cambridge who saved my bacon. I hired 4 scooters for extended periods of time for no charge, he tried to fix dead scooter, I got rescued by Martin after a flat tyre on a scooter and more. If this service and Martin’s assistance hadn’tve been a thing, I would’ve spent my trip in the house on my own or ALOT of money on taxis. Shopmobility in Cambridge was fab and more places need to take note!!! (Free parking downstairs in the multi-storey which is a bonus too!)
The Airbnb we stayed in was LOVELY!It had two double beds and two king beds (ofcourse I bagsied one!) as well as a really lovely living space and small garden. We had a socially distanced check in (lockbox) and it was a much needed get away!
So I didn’t stay in an accessible place as our booking was last minute and not too much was available, I also didn’t think I needed it, (although the bathing/ showering and stairs situation was definitely a big struggle! I know accessible Accommodation can be limited so I don’t want to take it away from people that need it more than me. I’ve linked a few places below that may help if you plan to visit.
A useful guide written by Cambridge Students Union :
and accessible Cambridge.
These are absolutely exceptional accessibility guide of which would be incredibly useful for you or your carers if you wish to visit Cambridge and have concerns over access needs.
THINGS TO DO:
If you’re an outdoorsy person, there’s tonnes you can do outside in Cambridge to keep you happy.
The Mill Pub are doing takeaway drinks which you can take and walk/ roll along the river. (There’s a small gate to get through but you should fit) the route along the river is pretty flat. We also stopped at the Mill works for lunch where I was able to leave my scooter outside whilst we ate, again through a small gate. I’d really recommended doing one or both of these as the views are gorgeous!
We went to the Universities Botancial Gardens with a scooter it was absolutely gorgeous and we loved spending the day outside there. access yes all part from Rocks
If outdoors isn’t your idea of fun, then Cambridge Shopping centre is almost entirely accessible it really was amazing. People maintained social distance well.
THINGS TO BARE IN MIND IN THE CITY:
– Lots of cyclists
– It is a very busy
– Not all cafes and restaurants are accessible
– Some streets are very cobbly, which hurt my ears and back on my scooter.
– Sensory stuff and street noise
– Lots of narrow doorways & steps to shops
Call and ask about specific accessibility needs even if it seems obvious. Not everywhere understands what the term means!
– The queues for some places such as the Regal (big wetherspoons) were absolutely huge and we queued for a really long time, I’m not sure if this was a one off or due to new covid restrictions but it was a very busy at all pubs.
– Don’t do the small outdoor market if you’re on wheels as there’s no point & you’ll probably get stuck in the gravel & break your scooter like I did !!!
Afternoon tea at the Clayton hotel was lovely! We had the whole room to ourselves and it was great, (although I spent the whole time in the being sick!)
So in typical Lauren style I had a fat migraine whilst we were out at afternoon tea, I was on my scooter and couldn’t feel my arms or legs and could only see out of one eye. I was sick multiple times and did not have my migraine medication on me. I managed to get a prescription sent over to a local pharmacy and we went over to pick it up. SO IT HAD A STEP INTO A NARROW DOORWAY WITH A FIREDOOR? A PHARMACY. A PLACE WHERE PEOPLE GO WHEN THEY ARE POORLY, CHRONICALLY ILL OR DISABLED. AN INACCESSIBLE PHARMACY. I was on my scooter and had to wave to them to come and do my transaction for my meds at the door? Like seriously. If I wasn’t feeling as horrendous as I was perhaps I could’ve said something!
I hope this guide helps you to have a nice day out in Cambridge!
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!
I’ll be writing a letter to sign soon to the council & MP’s, but in the meantime if you have 2 mins to fill out any of these surveys that would be amazing.
Blue Badge parking bays have been removed across the country due to Covid-19 social distancing restrictions, in brighton particularly they have permanently replaced them with cafe seating areas, cycling lanes and tarmac. As someone who runs a disability group of over 200 people I know all too well how this has dramatically impacted the lives of disabled people! Disabled people are already isolated and taking away their access rights is not acceptable.
I’m in the process of doing some other work surrounding this topic but in the meantime if you could fill any of these out or share them around, that would be incredible.
If you follow my instagram account you’ll know I have become a little obsessed with daily living aids. These are products with a variety of purposes designed to make life tasks easier, particularly for disabled and elderly people. I am regularly reviewing products with ‘Tourettesy Videos’ for pure honesty over on my Instagram.
I was kindly sent some products to try from Tenura UK. They are a daily living aid manufacturer with an aim to improve quality of life in independent living.
These products are described as ‘long lasting, non- slip and chemical/ latex free’. They offer VAT exemption on lots of products for disabled people and their customer care is impeccable. I have been throroughly impressed by both their high quality and friendly service. As always I give honest reviews and speak about the pros and cons to each product truthfully. I genuinely believe these products to be extremely useful for different people. Not only are they available individually to buy lots of them are also available in bulk too.
Many of the Tenura products are sold in three colours each with a specific aim. I love this idea. Below is a link to a more in depth description, however in brief, yellow is for low lighting, red commands attention and blue is calming.
The First Product I received was this silicone non- slip circular coaster- I actually found it worked a lot better under plates than it did for mugs. I’m the clumsiest ever so still managed to knock this about with a mug on however with the plate/ bowl it did not budge which was great. The silicone is very thick and it’s quality is evident upon appearance. I love that its got little patterns indented into it.
WHAT IS IT? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)
Creates a strong non slip surface, perfect for resting cups, plates and bowls on to prevent unwanted movement
Anti-microbial construction preventing bacteria from harboring on its surface
Available in 14cm and 19cm diameter, with a material thickness of 1.5mm
This coaster has many purposes and is made of non toxic silicone material which I think could be great in care homes or on hospital wards as well as in the home. I found they worked best with bowls on or underneath a plate or cup on a tray. There are plenty of ways these could be used! It worked nicely on a tray as well as under my food processor. It is also dishwasher safe.
WHAT DOES IT DO? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)
Prevents plates, bowls and crockery from sliding on tables, counters and trays
Holds chopping boards in position
Holds kitchen appliances and mixing bowls in place
Holds objects firm on surfaces that are not horizontal and / or are subject to motion or tipping.
These coasters come in different sizes in addition to the three colours- the one I have was yellow and a medium size for £3.83.
Another product I tried from Tenura was the ‘Cup Caps’ as I felt they were very fitting for me (someone who spills drinks all the time!)
Tenura CupCaps (pack of 2)
I love these!!! I’m forever spilling my drink down myself, leaving cups on the side for hours on end and having hundreds of drinks on the go at once. These are a really great solution to avoid spills and ensure freshness of drinks. (Let’s be realistic- leaving your drink out uncovered is a little gross!)
The application of this product is incredibly easy and they’re a super flexible material. Remember to ensure the glass is dry and these slip on and suction to the cup very well.
WHAT DOES IT DO? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)
Seals cups, mugs and cans preventing spills and stains
Keeps drinks fresher for longer
Can be applied with ease
Made with a strong anti-microbial construction preventing bacteria from harbouring on the material
Each pack contains 6cm and 8cm diameter CupCaps
They honestly feel like magic! I tipped my cup upside down and gave it a big shake and there wasn’t even a drip of spillage.
I think these would be perfect for young children or parents of children as well as disabled people with weak grip and their carers as they will help to avoid spillages. They are antimicrobial and can be kept in the fridge which is cool. (Pardon the pun!)
They are £10.00 for two which is really reasonable and they stretch to fit most cups or glasses- they don’t spill if knocked over or tipped upside down!!!
I have done a short video on my Instagram @aticcersguidetolife highlights in ‘reviews 2’ if you would like to see them working. You can pop any straw through these and you’re good to go.
The next product was my favourite of the bunch! Simple yet super effective.
Anti- Slip Circles
LOVE! These can be used on wet floor, showers, patios and baths, they are anti- slip stickers which have a rough grip surface on one side and a non marking sticker on the other. To test these out I stuck them on half the floor of my shower and at one end of my bath- within a day I had slipped on the side without the grips and realised how good they were. I now have these in both my bath and my shower all over and they’re great. They ‘take the edge off’ the slip if that makes sense- add a subtle grip. I would say put these a little closer together than you think and you’ll realise just how useful they are! They grip really easily sticking to the surface and don’t mark when removed. They are very easy to apply, and Tenura say they’re much more efficient than bath mats, which can attract mould. I also agree I would choose these over a bath mat as they have feel more hygienic and less clunky whilst seeming to have more grip in addition to being non abrasive.
WHAT DO THEY DO? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)
Helps to prevent slips and falls in dry and wet conditions
Made from a strong non abrasive material which is very kind to bare skin
Creates a strong bond with a application surface thanks to its strong self adhesive backing
Available in rolls consisting of approx 30 (200mmx20mm) strips or 72 (40mm diameter) circles
THOUGHTS ON THEIR APPEARANCE:
The stickers are designed to prevent slipping and blend into the bath or shower and they definitely do just that. They apply well, without looking out of place. This was something my mum was super conscious of as we have just had her bathrooms done and she didn’t want them being ruined;). It’s safe to say she likes them too as they stick to her modern bathroom aesthetic! They are available in both white and transparent.
These are £7.20 for a roll and the roll is huge it would last ages with replaceable stickers or for multiple areas.
I did a quick video on my Instagram highlights ‘Reviews 2’ of the application of these in both my bath and shower. Ensure you clean the surface before applying the stickers and dry it well.
The next product is another from their silicone anti toxic range. It is super useful for opening jars and I think the smaller one would be really great to keep in a handbag for bottles and lip sticks!
WHAT IS IT? (taken from Tenura’s website as I couldn’t have explained their products any better!!!)
Makes jars and other containers much easier to open relieving strain on wrists, muscles and joints.
The Tenura rubber jar opener is non-toxic due to their silicone rubber construction, which means they can be used in kitchens and clinical areas.
They could definitely be used to open other items as well as jars and could be very suitable for a person with arthritis or little use of the wrist. The non- slip not only helps open the jar but also helps aid avoiding breakages or spillages due to over forcing the jar open. Due to the non-toxic development I also think they could be great to hold things such as potatoes or apples still when cutting!
HOW DO I USE THEM?
These are super easy to use, either put on top of the jar on in your palm and simply use them same way you would normally open a jar. It really helps to ease strain and pain in the wrist and avoids over extension which is greatfor hyper-mobile patients.
These are just £4 and again this is super reasonable for the quality of product.
Again there is another short video demonstration on my Instagram @aticcersguidetolife highlights ‘reviews 2’.
Overall I was thoroughly impressed by the quality and care that has gone into the Tenura products- I think each product has its strengths for both able bodied people and people with a variety of disabilities. I look forward to trying more!
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!
As we come towards the end of Tourettes awareness month I have a few more stories to share with you. I conducted short interviews with other ticcers. Please enjoy this different perspective on Tourettes!
AN INTERVIEW WITH ROSS GODDEN
TICCING SINCE: 17
When were you diagnosed with TS?
I was officially diagnosed with tics first at about 17/18 then around six months later, I was diagnosed with Tourette’s. I had a tic where I would say ‘hi’ in the same voice as Stitch from Disney’s ‘Lilo and Stitch.’ As a child I suffered from learning difficulties, adhd, ocd, behavioural issues, autism, I had extremely bad to no social skills and maintaining relationships wasn’t really an option. I probably still am slightly autistic and suffer badly from anxiety.
*seems like you had a lot on your plate as a young person.
How would you explain Tourettes to other people?
Erm… this is a hard one. I was basically told when I was diagnosed with tics/Tourette’s, that it was a chemical imbalance in the brain of dopamine, ether the body produces to much of it or the gland or whatever is too sensitive to it, which makes the body tic etc.
*the science of it is all very confusing isn’t it!
Sarah has some simple to understand information here…
But I think it works more on extreme emotions good and bad. It feels like a curse sometimes with the swearing and mood swings.
It’s hard but it’s never stopped me from doing my professional life, yes I’ve had the odd day or week off here and there but as long as I have stability in my life my Tourette’s is pretty much okay.
*great to hear it doesn’t stop you from living your life! I have big mood swings too!
Do you have a funny tic or one that gets you in trouble?
The main tic/swear that gets me into trouble is that I say *wankers* it’s not great when you get near a load of police officers lol!
A funny one I do is when I say “I’m a little f*****ng tea pot” in a broad Irish accent. HA!
What’s the best treatment- clinical or emotional that has helped with your tic disorder/ TS?
Unfortunately the only thing that kind of works clinically is taking co-codomol and diazepam, but they aren’t actually prescribed for that they are for my back. I take them for my Tourette’s because the side effects make me drowsy and calm me down.
*it’s good you find these work- I’ve heard other people mention they find these two medications help- maybe speak to your doctor about this if they seem to be helping!
I went to see a specialist in Brighton, but he didn’t really understand or help with anything, he put me on so many different medications over a short period of time, I ended up being depressed and suicidal from the side effects of the medications.
*I’d be interested to know who the specialist was you saw in Brighton!
Non- clinically I try to understand my Tourette’s as separate person to me- I know when my right leg twitches, I’m tired and need to sleep… I do mindfulness to help. But sometimes it’s best to just let my tics out because the more you hold it in the worse they will get.
*I refer to my tics as Patricia- I like to think of my Tourettes as a different person too:)
Do you have any tips for friends or family of ticcers?
Tips for family and friends is basically just accepted us for who we are, support us, listen to us, be there when we have bad days and not treat us like freaks.
*never feel like you are a freak! this is great advice.
Thankyou so much Ross for giving an insight into Tourettes syndrome with co-occurring conditions.
I was diagnosed at 17 but suspected Tourette’s for about two year before. The signs had always been there. The constant coughing, loud sneezes when I didn’t need to sneeze and eye rolling where all there when I was young and my tics only became more frequent and with a larger variety from there. I’m surprised I didn’t suspect it sooner. After many, many appointments and tests I was told at one appointment I had a tic disorder. I later got a letter confirming it was Tourette Syndrome.
HOW WOULD YOU EXPLAIN TOURETTES TO OTHER PEOPLE?
My brain sometimes acts up and makes me do movements and sounds I don’t choose to do – this is the explanation I use for the kids at work. For adults I usually just say I have Tourettes, it’s a tic, I can’t control it or something to that affect.
DO YOU HAVE ANY TICS THAT ARE FUNNY OR GET YOU INTO TROUBLE?
Well, I have one that does both: One of my tics is that, I bark like a dog. Sometimes I think it’s funny and the timing can be comedic. Other times when I am walking around barking like a dog I can get the whole street of dogs I am walking on barking. This annoys the owners. Usually when I explain they apologise and understand but some do not understand and continue to rant at me, or worse they say they have Tourette’s ‘sometimes’.
*I bet this can be quite comedic but also stressful- people are often pretty unaware of the realities of TS!
WHAT’S THE BEST TREATMENT – CLINICAL OR EMOTIONAL – THAT HAS HELPED WITH YOUR TIC DISORDER OR TOURETTES?
I’d like to say my tablets (aripiprazole and occasionally diazepam), but the best treatment I have found is cross stitch and sewing in general. It almost stops my tics and occasionally stops them completely. I think this is due to the amount of concentration it takes but also due to the relaxing manner of it.
*I find tasks that make me concentrate help too!
DO YOU HAVE ANY TIPS FOR FAMILY MEMBERS OR FRIENDS OF TICCERS?
Yes for those with newly diagnosed ticcers it may not get better for them but it will get easier. By this I mean they develop coping mechanisms and it gets easier to explain about their tics each time as you/they develop a script. Also don’t react to each and every tic – it’s exhausting and you’ll get used to the ones that may make you jump though they’ll still sometimes catch you off guard. And last one don’t let other people’s ignorance get you down. It’s their problem not yours.
THANKYOU SO MUCH FOR ANSWERING MY QUESTIONS FOR TOURETTES SYNDROME AWARENESS MONTH:)
This month is Tourettes Syndrome awareness month. Tourettes effects everyone very differently. Tourettes is not just swearing. Many people have simple tics which can be suppressed well, while others have more complex or severe TS which can affect daily life.
The following few posts will be with a variety of people who have tics, a diagnosis of Tourettes syndrome or a Tic disorder.I have decided to conduct a variety of short interviews asking the same questions to show just how tics can affect life. No one knows better than a ticcer themselves to offer the best advice and words of wisdom.
An interview by LAUREN PERRY with DANIEL JONES
Your Tourettes stories.
NAME: Daniel P Jones
TICCING SINCE: In school- 2009
WHEN WERE YOU DIAGNOSED?
I was diagnosed 11 years ago this May, way back in 2009. I remember going back into school after the diagnosis appointment and sitting in my class again, not really understanding what had just happened or what any of the diagnosis actually meant!
HOW WOULD YOU EXPLAIN TOURETTES TO OTHER PEOPLE?
It’s such a hard thing to explain to somebody, but generally I would say that Tourettes Syndrome is a neurological disorder characterised by involuntary movements or vocalisations called tics. However, it’s obviously a lot more than just that – I think the most important thing to do when explaining it is to highlight just how individualised TS is. Tourettes looks different in everybody, and sadly a lot of people don’t realise!
DO YOU HAVE ANY FUNNY TICS OR ONE THAT GETS YOU INTO TROUBLE?
One tic that I have that can be funny is that, occasionally I echo words or gestures that people say or make. I remember once I was watching a performance of ‘the Crucible’ and I couldn’t help myself but say (rather loudly) “she’s a witch”! Me and my friend spent the entire rest of the performance trying not to laugh about it!
A tic that has gotten me into trouble is, what I like to call ‘the stank face’. It’s basically that really disapproving look you give something that you think is disgusting, or when somebody outright lies to your face… you know the kind? That’s definitely gotten me into trouble before!
*I find sitting in big rooms like cinemas, lectures and theatres really bring on my tics too!*
WHAT’S THE BEST TREATMENT EITHER CLINICAL OR EMOTIONAL – THAT HAS HELPED WITH YOUR TICS?
I’ve tried various emotional / behavioural treatments without any luck really. I’m quite hesitant to try any medications for multiple reasons. Therefore currently I am not receiving any treatment as I haven’t found any that work, or that I’d be comfortable trying due to the possible side effects.
*Side effects of medication is something that is rarely spoken about*
DO YOU HAVE ANY TIPS FOR FAMILY MEMBERS OR FRIENDS OF TICCERS?
My main tip would be to never tell somebody with Tourettes to stop or ‘shh’ if they are ticcing! For everybody I know who I’ve spoken to, including myself, this actually triggers us to tic a lot more. Don’t tell people off for the tics they have, as I can guarantee you it’s more frustrating for the person with tourettes than it is for you!
*I totally agree with you here- if I get ‘shhed’ or someone says ‘i can’t hear be quiet’, I find my tics become obnoxiously loud! It’s pretty funny to me;)
Thank you for taking the time to answer these questions for Tourettes Syndrome awareness month.
As always there will be a donation to Tourettes Action as the chosen charity for these series of blog posts.My Grandma has been a little star and helped raise money for the 2.6 challenge- more information to come soon:)
MAY 15th – JUNE 15th is Tourettes Syndrome Awareness Month.
I have a diagnosis of late onset TS.
WHAT HAPPENED? For the weeks leading up to when my tics became apparent I was speaking very fast. I literally would not stop talking- I didn’t think too much of it.
My tics suddenly became obvious to me in the middle of the night in February last year. They are mainly vocal but I have some motor ones too. I didn’t sleep for about two weeks as my tics were waking me up. (unheard of for me as I sleep alot!) My GP was a numpty and thought it was some kind of sleep deprivation and gave me 7 days worth of diazepam. This knocked me out for a bit and messed with my ME- my dad came to collect me from uni and I have no recollection of how long I went before I went home, packing anything, the journey home all the way until April when I went to Morocco with my mum and sister.
I initially had a 4 day tic attack with next to no sleep. My housemates called an ambulance on the 2nd day as it got a little scary. The paramedics were fab and thought it was funny- the consultants in A&E at 4am presumed I was drunk or on drugs and couldn’t wait to get rid of me. My tics were on and off for about a month then went for two weeks and came back and never left.
MY FIRST EVER TIC? ‘Wookeeeyyy doookkeeeyy’- as an 18 year old girl at University to be constantly saying this phrase on repeat was a little odd.
THE CAUSE? At 14 I was put on medication for Panic Disorder, it was AMAZING! (flupentixol for anyone whose interested)- well… it is thought that the antipsychotic I was on, may have contributed to the later onset of my Tourettes. It wasn’t until two months after I stopped the medication that my tics suddenly became very apparent. My Neurologist is under the impression that the medication acted as a suppressant and my tics did not come out at the usual age of teens as I was taking a ‘suppressant’ for my panic. Makes sense to me.
After speaking with medical professionals, It is likely my tics have always been present just mildy. I had tics such as a nose squint and eye twitch I had when I was very young and was given glasses for. I have always been a hair twiddler, maybe this was a tic.
When my tics started I didn’t know what was a tic or what was me speaking- I started to panic and couldn’t really find my reality. It was petrifying. My housemates were incredible. Again. I have little recollection but I know I had everyone around me to stay with me on shifts, watch me go to the loo, sleep in my room with me and let me know everything I was saying. It was really traumatic! I felt as though the tics were coming out other peoples mouths but in my head. I was worried it was some kind of mental health crisis but the hospital weren’t. I knew I wasn’t hallucinating as I was very much able to hold a conversation and could not see visions or hear voices etc- I was worried, my mental health had been really good. I went to a private psychiatrist and he confirmed he didn’t think it was any worrying mental health issue.
I went to the Neurologist in about June/ July time as my tics hadn’t subsided- usually a diagnosis of Tourettes Syndrome needs:
Motor and Vocal Tics
Tics before the age of 18 / childhood tics
Tics lasting longer than a year
My Neurologist was confident in diagnosing me without meeting all this criteria due to the medication potentially suppressing – being only 18 (the border for tics) and the fact that my tics were very complex.
So there we have my tourettes diagnosis.
Where am I now? I am about 16 months into having Tourettes to my knowledge and it has drastically changed my life. I still haven’t seen a specialist as people like to ‘lose referrals 4 times’ (NOT ANNOYED AT ALL HERE!?!?!)
My tics can be very intense in what I like to call a ‘tourettes attack’ or ‘tic attack’ and other days more calm with only one or two all day. I struggle to communicate greatly on days my tics are bad whilst others I can advocate for myself well.
Environment, fatigue, stresses and people all play a major role into how my tics present.
QUICK NOTES ABOUT MY LATE ONSET OF TS:
My preconceptions of stereotypical Tourettes were false. I suffer from pain particularly in my neck and fatigue caused by my tics. The pain was originally unbearable but with time I think my body has become used to it.
I don’t have Coprolalia (swearing) it only affects 10- 15% of ticcers.
I have rather a cute ‘baby voice’ vocal tic!
My tics are not my thoughts, however they are usually stimulated by something.
I don’t know what I’m about to say as a vocal tic or do as a motor tic but I have a rough idea- for example I know I’m about to insult someone or I know I’m going to tic about XYZ or throw whatever is near me- I just don’t know the specifics.
My anxiety has improved. People are looking at me the majority of the time with TS- particularly strangers- I had to get used to this pretty fast otherwise panic + tourettes = mess!
My OCD has sky rocketed (86% of people with TS have OCD, ADHD, ADD, Autism or an anxiety disorder too).
My TS diagnosis was not the end of my life, I simply had to make some adaptions and do a lot of explaining to friends and family.
Seeing people I haven’t seen in a while- this is the hardest.
Most people have ‘a tic’
IF I HAD THE OPTION OF GETTING RID OF MY TOURETTES WOULD I?
As someone who is newly diagnosed strangely my answer seemed to be alot different to others I asked. Most people said ‘no’ or ‘sometimes, if I was having a bad day.’
SO.. this is me!
Life with Lorenzo is never predictable– I try not to have the ‘woe is me’ ‘only me’ outlook on life but I mean really… Random Tourettes out the blue…
You couldn’t write this s***!
Take whatever life throws at you and keep on smiling
LOTS OF LOVE
As usual with my awareness posts I will be donating £5 to a charity which deals with each condition.