I’ve been in a few support groups and stuff before and frankly I find them pretty depressing – personally, the majority of the time I like to try and stay positive whilst being chronically ill as my mood is so easily flipped to negative. So, I’ll tell you a little about myself and why I decided to write a blog.
I’m in my second year studying English Language and Linguistics at Uni of Brighton. I am also a part time beauty therapist (recently I have been working hard to complete courses to be able to fund being a disabled student woo hoo). My conditions do cause brain fog and fatigue so do forgive me if some things simply do not make sense to you!
At 14 I was diagnosed with Panic disorder and Depressive disorder which was a bit crappy; I didn’t really go out of the house much for two years – unless I had no choice. Many people struggled to understand, but through the support of my family, medication & multiple medical professionals, after a long haul battle I’d like to say I’m 90% over the panic stage of my life (touch wood).
My fairly new challenges in life have been ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) a diagnosis in 2017, Fibromyalgia with Hyper-mobility syndrome & a recent diagnosis of Tourette’s syndrome!!! (No, I don’t shout swear words out constantly, don’t worry). On top of this I have multiple hormone imbalances, such as vitamin levels and thyroid levels.
I have a blue badge which has improved my quality of life dramatically! I am so grateful for it. But I am still feeling slightly isolated. I have plenty of friends who are amazing but our energy levels simply don’t match up. It’s hard for people to understand why I sleep 26 hours a day or why I slur my words when I’m tired or appear in slow motion – as a 19 year old most my friends are out clubbing till 6am. I’m sure if you’ve ever experienced an invisible chronic health condition you are used to the ‘oh really, you can’t do that?’ and the ‘you really don’t look disabled’ comments that come along with the disability.
So basically, cut a long story short, I’d love to start being proactive in a positive way, to meet people with similar conditions to my own & share our experiences. My doctor alone has met 1 person with tourettes in 29 years of practicing medicine, and as for ME/CFS, I feel they are very misunderstood conditions. (No, not everyone is tired in the same way I am), (No, exercising excessively won’t help, as it is not down to laziness!) I’m hoping that with a little insight into my life, it could help improve others’ and my own mental and physical health!
It’s okay to feel shitty sometimes: I spent yesterday crying – as going back to uni with tourettes, anxiety and fatigue is my idea of hell. For me, my own negativity tends to bring me down so…
As I’m writing this, I am trying my best to surround myself with goodness & maintain my positivity. Feel free to follow my journey of tics and tips 🙂
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.
To continue my posts for my Mental Health Awareness Week.
As I’ve spoken about in the past, I have had alot of therapies, counselling, support etcetc.. within my short life with regards to coping with stress and anxiety. I thought for mental health awareness week it was only right to share my favourite coping mechanisms.
Distraction from your thoughts is really importnt- whether you chew gum, click a pen or fiddle with something- detracting your thoughts elsewhere is a good idea.
Medicate if necessary–
There seems to be a huge stigma around medicating for mental illness- I was put on medication for my mental health and have been on a variety of different ones ever since. It is a big decision to make and requires regular slow monitoring. Medication is not a cure for mental health issues, however, along side therapies it can be of great support.
I just find lavender so calming! I have lavender oil in an air purifier/ diffuser. lavender pillow spray, a bag of lavender in the box I store my bedsheets in. For me I’m very sensory- smells really make me feel better. If you ever walk into my room you’ll be hit with a concoction of oils, melts, incense, candles, lush products, air fresheners- all sorts. I like everything to smell nice as it’s comforting.
Write your thoughts down-
Sometimes we react to situations before we think. Writing down frustrations can ease tension with others and help us rationalise our thoughts.
Feeling stressed:(???? Write every word that comes to mind on the paper- even if its the most totally random word ever, it helps to get everything out your brain! Categorise them into things that are in your control and things that are not. Rip up and throw away any worries which you cannot control- taking them out of you brain and into the bin. Organise a plan surrounding each small worry to eventually cross them off your worry list..
Have a plan so you don’tbecome overwhelmed-
Sadly in life there are things we have to do that we don’t want to. The quicker and more efficiently you can get these tasks done, the sooner you are able to do something you love. Planning what needs to be talked about in an important doctors appointment or what you need to buy in the shops on a Saturday when you’ve got three toddlers running riot with you can help maintain structure and allow tasks to be completed quicker. I’m awful at remembering things so I strongly recommend writing conversations or reminders/ to do’s down for later you. Feeling prepared for challenges helps ease anxiety.
Don’t worry about future you-
As Cringey as it sounds, no one knows what the future holds- we cannot fly ahead into the future or teleport to the past. Focus on the now. The present. Your happiness. Your life now. DO WHAT WORKS BEST FOR YOU RIGHT NOW AND FOCUS ON THE REST LATER.
Your Grades are not the most important thing in the world- exam anxiety-
Test or exam anxiety is one of the most common forms of anxiety- I used to faint, cry, hyperventilate, be sick in exams. WHY?! Has anyone ever asked me for my grades for XYZ? No! Whether it’s a small test at work or your A levels your grades do not define who you are as a person- it is likely you will be able to retake, ask for advice or ignore the results. Why we put so much pressure on kids from such a young age is beyond me!
Name 5 things you can see, hear, smell, touch- Grounding Technique
This is a great calming strategy- say them out loud.
Talk to people–
Talking to friends and family about how you feel can be scary and you may feel you don’t want too burden them with your problems- therapists are a good second option if this is the case. They are qualified and paid to deal with other peoples issues. The act of hanging out with friends and talking often can raise moods as we become distracted and occupied with fun. Don’t feel you have to speak about issues as such- you can just generally have a chit chat! When my panic was at it’s worst, the act of someone asking ‘are you okay’ or me saying ‘ i feel really anxious/panicky’ would usually trigger a panic attack. My friends and family knowing how too behave to make me feel safe and conversations to distract me was beneficial. Communication is great.
Get out the house-
My Agoraphobia stemmed from not leaving the house in bouts of anxiety and depression. Very relevant to current times, it is important you leave the house when possible. Open the front door and sit on your drive if you don’t feel up to going miles from home or simply walk down your road. Your brain becomes conditioned to ‘liking’ being inside very quickly and it will only detriment your mental health. You do not need to go on 5 mile walks every day or sit in the garden 24 hours a day but simply getting out and about a little will maintain your social interaction with other humans even without speaking to anyone, the act of simply seeing another pair of arms and legs is useful to your brains coping strategy.
Don’t avoid your problems
LAUREN! This is one for myself. There is a cycle I tend to live my life by with relation to my physical health- boom and bust, all or nothing. Similarly I follow the same pattern with my mental health- I subconsciously ignore all my stresses until I hit breaking point- release all my feelings and then return back to neutral. This tends to repeat itself. Keeping your thoughts in only makes for emotional mood swings and subconscious changes in your behaviour.
Take a break and try again in a little while
Breathe in for 5 seconds and out for 8.
The idea with this is basically ‘breathe out more than you breathe in to maintain stable breathing’. As we become anxious we close up. We want to have bigger, deeper breaths. If you find yourself becoming tight chested or panicky focusing on maintaining your breathing is good. Weirdly for me if I didn’t have my sole focus on this it used to trigger panic (something to do with the OCD and counting breaths I’m sure!)
Know you aren’t alone
There is always someone who will speak to you, even if its a stranger online!
Understand others struggle too
Know the facts not your made up scenarios–
Understand poor mental health can make fantasy feel like reality. We often make things worse than they are in our heads, assume people think certain things about us or read into behaviours strangely. Without knowing the facts we start to believe our own thoughts! Worried about something or someones opinion of you- ask them?
Drink lots of water
Water is amazing for everything. Skin, Brain. Bladder. I used to get very very light-headed, pins and needles or faint- I find water a great energy boost to ‘bring me back’ Again it’s another great distraction method- focusing on your gulps of water as opposed to things happening around you.
Have regular snacks or a mini squash bottle to maintain blood sugars-
Similarly carrying small snacks or a mini squash bottle is useful as we tend to feel low when we are hungry/ lacking in vitamins.
Breathe out your nose- this will make you giggle!
Have a positive playlist–
Have all your favourite music in one place. I have spotfiy playlists for every mood/ scenario!
Do something nice for someone–
Doing something nice for someone else helps us feel better about ourselves.
Give yourself a gift-
We treat others to nice gifts or surprises- why not do the same to yourself.
Write a nice letter to yourself
Spa nights at home–
This is one of my favourites- whenever my friends are feeling rubbish we have a spa night- I run the bath for them with epsom salts and candles, bubbles and bath bombs- spa sounds and fairy lights- colour changing lighting. Since doing beauty courses I’ll do facials or gel manicure/pedicures. These are my favourite types of evenings. So girly and my friends love it! My uni halls room was literally known as the detox room- everyone would go on their nights out be incredibly hungover and then come over to my ‘spa’ and eat pizza. AW I miss Uni! Corona go away.
Write your compliments–
The most lovely lady on Facebook told me this! We are so quick to remember any negative comments about our appearance yet we don’t accept positive comments. I cannot think of one compliment in the last few weeks, yet I know I’ve received so many- since writing down my compliments, it enables me to see what other people think of me and maybe slowly I’ll start to believe it! (SIDE NOTE don’t comment on peoples appearance negatively- just let them be!) Give out compliments to others often!
Document your day went well today?
Write about one good thing from each day.
Find a fury friend-
Ahh… I wish I had a pet, they’re so good at comforting.
Get Creative/ paint or colour
Art is therapeutic!
Celebrate your small achievements
Haven’t brushed your hair for two weeks but you did today? WELL DONE!!
Cut out negativity from your life- it’s okay to prioritise your own mental health–
I’ve always been a bit of a Negative Nancy, I’m trying my best to become more of a Positive Polly! Distance yourself from anyone that doesn’t fit to your new mindset until you feel strong enough.
Create a kindness kit (happy box)- see my blog post on these)
You are in control of your life- don’t let anyone else be.
I hope some or at least one of these tips will help you.
I thought I’d explain a little about my experience with Panic Disorder in my second post for mental health awareness week:)
“Panic disorder is an anxiety disorder where you regularly have sudden attacks of panic or fear.”
Everyone experiences feelings of anxiety and panic at certain times, this does not mean you have an anxiety disorder and is likely to be merely a natural response to stressful or dangerous situations. Welldone you. Your brain works properly. Our bodies are built to react to situations that make us feel uneasy. Those with Panic disorder have a chemical imbalance which leads their bodies to be in ‘fight or flight’ mode regularly with no triggers.
Fight or Flight, Freeze?
A perfect example of ‘Fight, Flight Freeze’ is when you slam on the brakes when the car in front of you suddenly stops, you do not stop to think about your decision. Your body reacts to its own instincts quickly to protect you… In someone with Panic disorder the body doesn’t understand its potential dangers and therefore is over sensitive in its responses. As someone who has lived with anxiety disorders I always include freeze as I feel fight and flight aren’t always what actually happens!
I speak in past tense as I would say I am pretty much over the panic stage of my life * touch wood* & gosh am I pleased! So how did I do it? It was not easy! I did a previous post on accessing therapies. Exposure Technique & CBT along with medication ( I tried tonnes- this was definitely about finding what worked for me).
For someone with panic disorder, intense sudden feelings of anxiety, stress and panic occur very regularly often for no apparent reason. It can effect quality of life greatly & be exceptionally inconvenient.
Symptoms of Panic Disorder are apparent during an anxiety attack or panic attack which is where feelings are suddenly intensified.
Feelings of high anxiety whilst awful and very distracting are different to anxiety attacks. Anxiety attacks become uncontrollable. People with other anxiety disorders can have panic attacks but it is likely they have more of a trigger & do not come out of the blue like in Panic disorder.
A racing heartbeat
Short of breath
Pins and needles
A need to go to the toilet
Ringing in your ears
A churning stomach
Tingling in your fingers
A need to escape a situation
Feeling like you’re not connected to your body
A lack of control
For me, I experienced anxiety most of the day- these symptoms would be toilet issues, nausea, stomach aches, feeling constantly on edge or dizzy.
When I had an anxiety attack, symptoms would exacerbate, I would run as far away from a situation as I could until I dropped my body to the floor- My reasoning? If I fainted, I couldn’t go anywhere as I’m already on the floor. I would feel a wave come over me- some days I could feel it coming on building for a few hours, other days in seconds.
My main symptoms of an attack were: cold sweats, hyperventilating- couldn’t speak, dry mouth, dizziness, blurred vision, weak legs. After I experienced a panic attack I would feel a sense of relief. You know sometimes when you’ve been sick? You feel better for a short period of time after being sick as you’ve got it all out? Then your next round of nausea begins before you are sick again. This is the best way to explain how my panic cycle was.
Perseverance and Resilience are important in overcoming your mental health condition. Accepting your set backs but getting back up again is what will keep you going.
“The number of attacks you have will depend on how severe your condition is. Some people have attacks once or twice a month, while others have them several times a week.”
Why me & not them?
It is not totally known what causes someone to have panic disorder, but factors such as these may play a role:
Major stresses or Traumas
Being more sensitive to anxiety/ stress or prone to negative emotions
Certain changes in the way parts of your brain function and it’s chemicals
Many people with panic disorder experience phobias. No this isn’t simply being ‘scared’ of spiders. It’s a fear. The thought of your trigger being within 100 miles of you & your body goes into meltdown.
There are hundreds of phobias some specific to things like spiders, lifts or snakes- for me I had Agoraphobia and Claustrophobia. This basically meant small spaces and big open spaces. Weirdly the spaces didn’t have to be that small. Cars without windows being open. Classrooms with the door shut.
AGORAPHOBIA: extreme or irrational fear of entering open or crowded places, of leaving one’s own home, or of being in places from which escape is difficult.
CLAUSTROPHOBIA: extreme or irrational fear of confined places
People are very quick to throw words round such as ‘claustrophobic’ ‘depressed’. School kids are famous for the ‘jheez don’t have a panic attack comments’ or the ‘omg I’m gunna kill myself’ comments. Not only are they misusing words. Incorrect. Unnecessary & careless. They can be exceptionally triggering for people with mental health issues. The boy who cried wolf? If you make jokes about things like this- if god forbid you ever found yourself in a situation where you needed support people may not be so understanding.
So I guess that’s Panic Disorder in a nutshell. Work on yourself as a whole and things should get better, get medical support + don’t expect it to be an easy ride:)
This is a post in a series for mental health awareness week 🙂
I went from this… daily.
Please remember things do get better & life will become easier to handle. It did for me and it will for you. There is so much support available to you it’s just about knowing how to access it and being in the right frame of mind to do so. Work on improving things when you’re having a relatively good day – if you try and tackle life on a bad day not much gets done and things can be overwhelming.
The best bit of advice I have to give with regards to mental health & supporting people with mental health conditions would be…
‘you have to want to get better and want to fix things otherwise things won’t get better’.
I of course still struggle with my mental health and it might comfort you to know this- I’ve just had a lot of practice in ‘feeling better’.
At 15 I was diagnosed with ‘Panic Disorder and Social Anxiety, with Agoraphobic and Claustrophobic symptoms.’ I later developed a diagnosis of depressive disorder (clinical depression). I guess the knock on effect of not leaving the house much due to panic contributed to this!!
I am not ashamed to say I have struggled and you should not be either. My mental health issues left me having 6/7 panic attacks a day everyday at it’s worse, not washing my hair, brushing my teeth, being too scared to leave my bedroom, staying in the house for months at a time, fainting left right and centre, not making it to school/ sixthform or spending the day in isolation as the thought of being near anyone or anything made me physically sick. I experienced pain, tears, suicidal thoughts and anxiety provoked feceal soiling regularly (that means pooing myself).
The idea of getting help for your mental health can be incredibly scary. Charities, Doctors and Nurses can help you to some extent, with getting better a lot resides on ‘homework’ completing self help tasks and activities suggested by professionals.
I was referred to a Psychiatrist who was a slightly odd, but wonderful man- in his late 80’s, incredibly intelligent, very quirky. He prescribed me a range of medication which we regularly reviewed & recommended books & blogs. My family were exceptionally supportive & my mum, dad & step mum alternated between taking me to appointments of which I am eternally grateful.
I also had regular appointments with the most lovely Psychologist once or twice a week. She would laugh at me to encourage me to understand silly thoughts and comfort me in moments of frustration. Therapy is a weird one. I spent years under her care and she knew absolutely everything about me, yet I know nothing about her at all. I couldn’t tell you if she was married or had kids or where she was from & I think this is really important in a good therapist. Finding someone completely separate from your family and friends. We focused on CBT (Cognitive Behavioural Therapy) & the exposure technique- I genuinely think this technique gave me my life back! It’s very easy to say ‘don’t cry,’ ‘just do it’, ‘just go you might have fun’ I don’t think I actually enjoyed any social events for years. It is only recently I find my self having fun.
What is exposure technique?
“Exposure therapy is a technique in behavior therapy to treat anxiety disorders. Exposure therapy involves exposing the target patient to the anxiety source or its context without the intention to cause any danger. Doing so is thought to help them overcome their anxiety or distress.”
You repeat this process of exposure until the anxiety is no longer severe. Eventually the aim is you access the trigger with no anxiety and start to enjoy yourself!
Exposure technique works on forcing yourself into a situation which makes you feel uncomfortable! So for me, I had to go to friends and families houses, restaurants (gosh this one was a nightmare) Nandos was the absolute worst! I had to walk half way down my road without panicking, go to the shop up the road but not go inside. Go inside the shop, buy something, sit with a group of people, go to a party etc… I was sent on weekly missions. I had tasks set. Funnily for me- As a people pleaser- I felt intense guilt if I didn’t complete the task set & this therefore encouraged me. On weeks I couldn’t complete my exposure task, I felt I was wasting my parents money and my therapists time therefore I’d do them.
Tasks would include stages which we would build upon. Stand at the bus stop. Watch a bus drive past. Get the bus with someone (funny story here- my dad attempted this ‘challenge’ with me something that seems so minor now but was definitely such a big deal to me- I cried, resisted spending hours building up to it… waited at the bus stop anxiously with my dad… waited some more…the bus didn’t come! Ever. This happened every-time we attempted it. I loved this! I didn’t want to get on the bus at all anyway!!! Sometimes life works in your favour) However! The longer I spent avoiding situations such as taking the bus, the harder it was to over come and the more I struggled. I eventually got to the final stage of getting the bus alone.
Some things in life are unavoidable, there are no other options, they’re hard but they have to be done- prime example- in Venice there were water buses to get around- this was the only option (I would’ve suggested we hired a car or got taxis otherwise). My opticians is in the shopping centre- I have no choice but to go to the opticians to get broken glasses fixed etc..
What is CBT?
“Cognitive behavioral therapy is a psycho-social intervention that aims to improve mental health. CBT focuses on challenging and changing unhelpful cognitive distortions and behaviors, improving emotional regulation, and the development of personal coping strategies that target solving current problems.”
CBT FOR DUMMIES IS A GREAT SERIES OF BOOKS WHICH WORKS ON SELF HELP THROUGH CBT.
What is mindfulness?
the quality or state of being conscious or aware of something.”their mindfulness of the wider cinematic tradition”
a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique.
I hated mindfulness. It was not for me! That doesn’t mean it won’t work for you 😉
My Therapist worked with all three of these. She was incredibly patient & understanding- I must’ve been a very frustrating client to work with! Baby steps got me to where I am today. Things don’t get better over night and I definitely still have some issues, they’re just different now!
I had support through school & college of both educational mentoring/ pastoral support and counselling. If you’re in school and are anxious about accessing support these student support services can be a good first port of call and they also usually have email addresses which helps ease anxieties when communicating!
Three tips I took away from my school counsellors:
Headphones, wear them everywhere, t1ake them everywhre, have your own bubble, when you begin to feel the panic set in put them in your ears. I used to listen to hypnotherapy in my ears, my favourite music (weirdly some music triggered panic attacks) or just silence.
Chewing gum- This gives you something else to focus on other than the feelings of panic.
Tablet in my pocket: My small antipsychotic in my pocket- I can play with it, feel it and know it’s there if I need it. I managed to get weird special consideration for exams so although I could not take my phone in I took headphones, gum, one tablet in each pocket a pebble and a small soft toy- weird but I guess its a sensory thing- whatever works for you! No one knew that didn’t need to that I’d have these things on me!
I haven’t managed to shake some of my coping strategies yet and still use these behaviours however less obsessively. I always have the anti panic tablet on me but I haven’t taken one for over a year. Having it in my pocket is my support to know it’s there just incase but I also have the brain power to know I do not need to take it. I used to panic about panicking! I’d carry three pairs of headphones as one may not work, I might lose one. It was ridiculous I know now! But it worked. Having 3 pairs of headphones, 3 packs of chewing gum and a tablet in every room, pocket or bag stopped me panicking OBVIOUSLY?!?! If you checked any pocket of mine now- the tablet is almost always still there & so are the headphones (but just one of each!) If I don’t have them on me now I won’t panic, I use it as a sign of strength!
As my support was through private insurance, they only offer you 10 sessions. ( I think I might’ve done a short post about why I didn’t go with the local Camhs (child adolescence mental health service) before?- basically the receptionist petrified me on the phone as she was so rude and 15 year old Lauren refused to use the service. *eyerolls* )
My mental health was pretty abysmal so private insurance waived the 10 appointment rule and enabled me to see them every week right up until I went to University. So 3 nearly 4 years. Towards the end of my therapy sessions we ‘weaned me off seeing them’ this sounds silly but it was sort of to see if I could cope on my own. Gosh I sound like such a baby reading this back! This was tough. I cannot lie. I struggled. The only thing I would leave my house for was for these appointments. I was a massive planner & had lists of lists. I would insist on being driven to the door of everywhere I went alone and have someone wait with me before and after. If they weren’t outside the door waiting for me when I had finished I would panic. The thought of having to leave the house alone petrified me. As I reduced my sessions, I saw my therapist fortnightly, monthly, every five weeks- until I stopped asking for appointments- I felt I had nothing to talk to them about! Great.
Specialists believed my anxiety was brought on by a lack of control of social situations triggering OCD behaviours. Funnily Tourettes is often seen in people with OCD too! There are days I still feeling myself slipping back into negative mindsets feeling generally low, this is okay! I allow myself to have these days. Through years of therapy, I now have the tools to manage them.
I am not ashamed of the old me. I am sad I had to go through this & miss out a lot of my teenage years- it is part of what has shaped me and has given me so much resilience. I do not remember the last time I had a panic attack. If you knew ‘the old me,’ you’d be absolutely amazed with this information.
Let’s not glamourise mental health conditions & start to understand the raw truths of how they can make people behave. Mental health has a huge impact on our physical health, be it through stress behaviours, IBS or pain flares.
Understand mental health conditions can affect anyone and everyone has their own issues. Offer & accept help.