AN UPDATE

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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!

DIAGNOSIS’

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.

UNIVERSITY

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!

PA/CARERS!

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!!!

PIP

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

TICS

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.

PLANS

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!

Lauren (+Patricia) xxx

TOURETTES TAKEOVER- for Tourette Syndrome awareness month.

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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

NAME: Ross

AGE: 35

TOWN: Seaford

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…

https://www.tictocktherapy.co.uk


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.

TOURETTES TAKEOVER- for Tourettes Syndrome awareness month.

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NAME: BETH GREENWOOD

AGE: 20

TOWN: West Yorkshire.

TICCING SINCE: late teens

WHEN WERE YOU DIAGNOSED?

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:)

Lauren xx

TOURETTES TAKEOVER- for TS awareness month.

Tourettes Syndrome, Uncategorized

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

AGE: 24

TOWN: Berkshire

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:)

My Tourette Story:

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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.

DIAGNOSIS:

I went to the Neurologist in about June/ July time as my tics hadn’t subsided- usually a diagnosis of Tourettes Syndrome needs:

  1. Motor and Vocal Tics
  2. Tics before the age of 18 / childhood tics
  3. Tics lasting longer than a year
  4. Complex tics

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:

  1. 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.
  2. I don’t have Coprolalia (swearing) it only affects 10- 15% of ticcers.
  3. I have rather a cute ‘baby voice’ vocal tic!
  4. My tics are not my thoughts, however they are usually stimulated by something.
  5. 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.
  6. 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!
  7. My OCD has sky rocketed (86% of people with TS have OCD, ADHD, ADD, Autism or an anxiety disorder too).
  8. 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.
  9. Seeing people I haven’t seen in a while- this is the hardest.
  10. Most people have ‘a tic’

IF I HAD THE OPTION OF GETTING RID OF MY TOURETTES WOULD I?

YES

YES

YES

YES

YES

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

Lauren xx

As usual with my awareness posts I will be donating £5 to a charity which deals with each condition.

More on this soon..

Inappropriate- Sorry not Sorry.

Tourettes Syndrome

Life is what you make of it!

I find myself apologising for the way I am wayyyy too often. Having Tourettes Syndrome makes for some awkward encounters, I’m sure more of my embarrassing scenarios will come to light throughout my blog!

Contrary to what’s portrayed in the media & assumptions on TS- only 10% of people with Tourettes Syndrome have swear words as regular tics.

I encourage people to laugh at my tics as I know people often feel super uncomfortable. For me- I find it quite amusing watching people’s responses to my tics – particularly if they don’t know I have Tourettes- ignoring it, asking me to repeat what I said, bouncing from one foot to the other looking uncomfortable wishing they didn’t engage in the first place- and my favourite… the baby voice response- I’m 19 and have only been living with TS to my knowledge for 8 months, I assure you- It’s likely I’m more switched on than you & I am in fact studying an English Degree so the need for the baby voice isn’t really necessary- although my TS in partner with my ME can make it hard to communicate sometimes (Tic attacks as I like to call them) Talking about me rather than to me simply is unnecessary. I’m very switched on. This is something funnily enough Medical Professionals Fail to Understand. I Went 18 years being my own voice and mind- just because I have a new diagnosis doesn’t change that.

A Tic of mine is ‘ I have Tourettes going once going twice sold to me’- I like this one, although I do feel subconsciously that I clearly feel the need to address the fact I have Tourettes in order to fit into societies norm. British people particularly don’t communicate with strangers, I don’t know whether it’s a prestigious thing – thinking they’re all high and mighty- or a fear of what they will engage in or embarrassment- it’s bizarre. Having TS I talk to everyone constantly- when I feel comfortable and I am not suppressing my tics- you can hear me coming from a mile away.

I am beginning to compile a list of funny tics- I go through obsessional phases surrounding topics ‘eggs- eggs and bacon.com’ ‘German girls’ ‘tiny little ladies and small mummies’ To people who don’t know I have TS I most likely appear mad- I insult people quite a lot- although often completely obscure insults ‘big teeth’ ‘dog hair’ ‘shhhhh I’m the only talker here you’re boring.’ AWKWARD.

I am often embarrassed when my tics (aka Patricia) blurt these insults out to people at incredibly inappropriate times – I find myself apologising to people a lot- although frankly I don’t think I am sorry, it’s their problem if they take offence as my tics aren’t me.

Patricia!

Having TS I’ve gained a few new ‘personality traits’- I’m the only one allowed to talk- Patricia (my tics) is quite big headed and simply loves the sound of herself more than anyone else in the room.

I’ve always been a very anxious person who hates the thought of anyone looking at me, body/ self confidence are both things I’ve struggled with pre and post being diagnosed with invisible disabilities, and breaking my coccyx which consequently caused me to gain a lot of weight. Interestingly I have a lot of self doubt- through my Tourettes I come across as a bit of an arrogant bitch. Something that if you know me well- you know I feel the polar opposite – The thought of people staring at me triggered past anxieties & these feelings had to rapidly be dealt with as in February 2019 my TS started to be more present- I struggled to suppress it and people simply were looking at me a lot more- I hate it, but it’s natural for someone to feel inquisitive into what the weird noises are around the room. It’s me – although a lot of the time I don’t know I’ve produced the noises or words out loud!

I’m conscious not to become ‘The girl with Tourettes- Lauren’ & to simply be ‘Lauren- who incidentally does have TS’ I am studying English Language & Linguistics & therefore must have some level of brain power which is above average- humorously many people talk about me or past me as if I am a child who is uneducated or struggles to understand. Feel free to message me with anything that might be good for me to discuss!

Reality: