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I have carers now. What it’s like having carers in your twenties.

So… (I always seem to start my chatty posts with so?!)

Sorry I’ve been a little inconsistent with posting, ironically having a chronic illness is unpredictable and my energy levels are all over the place. I’ve been really busy recently (for me) and over the last few months, I’ve been awarded Direct Payments through adult social care, which enable me to hire carers to help me with day to day life. (It’s not as scary as it sounds, I promise).

The process in Brighton for adult social care was pretty simple and they were incredibly supportive. I am planning to do another post on the process of this soon. For now, what you need to know: carers through adult social care are called PA’s- Personal Assistants- (this makes me feel super fancy lalala!) There are a few ways you can employ your PA’s but as mentioned above I will discuss this further in another post.

Making the mental shift of needing care support wasn’t easy but the fact that my PA has become one of my friends has really helped with this. Although her role is not your typical care role, she does help me with aspects of personal care, showering, organisation, days out etc… We joke that her skill set for her CV is becoming very extensive since working with me, she’s done everything from building my power chair and being my personal chauffeur to accompanying me on days out. She is my personal shopper, hairdresser, cleaner and type writer all in one.

For me, going out with my friends has been anxiety provoking since being in a chair I worry they feel they can’t do what they would want to do as I may hold them back. Having a PA means she can come out with me and my friends and we all have alot more fun as the responsibility isnt on their shoulders and the guilt isnt on mine. My friends from home came to visit and we went for drinks with my PA like we would any friend, she drove us around etc. If my carer was alot older than me I think we’d feel a bit like we had our mums with us on a day out, having someone my age makes it easier to blend into society. I genuinely feel like I’m out with my friend who happens to being paid to look after me.

My PA hours are pretty flexible and she can come round to get me ready for a hospital appointment or she could make us both dinner and help me tidy my room. Being chronically ill, I’ve realised it’s the little things in my life that I struggle with. Doing my bra up, doing my washing, cooking dinner, showering, driving, it’s all the steps before an activity that waste my spoons meaning I don’t get out or don’t enjoy an activity. Having support for all the ‘life stuff’ really helps me focus on being able to live a little more like a normal 20 year old. She doesn’t come over to help everyday but funnily enough if she isn’t over to do care stuff shes over having fun with us. In fact if I don’t see my carer (she likes to be called my friend) for a day it feels a little strange!

My housemates love my PA they get on really well with her and I love that. I was worried about my housemates feeling uncomfortable with a carer in the house but my PA really doesn’t feel like a carer she feels like one of us. She’s been amazing at looking after me when I’m unwell and answering the phone at 5am and bringing me tablets at midnight when I’m having a nightmare. She even helped scare my housemates with a halloween mask which was brilliant. I think having my carers actually helps my housemates feel more at ease knowing they’re living with a poorly person but the responsibility isn’t on their shoulders. They know they will sit with me if I’m poorly and call 999 in an emergency but also know they can call my PA who can be there in 5 minutes. It makes me feel less guilty and takes the stress of their shoulders. As students they didn’t sign up to be my carers!

I’m thinking about making a little video about the employing a PA process and life with a PA as it was something I really struggled to find advice on when I was looking. Let me know you’re thoughts here!

I am currently interviewing for another PA which is an extensive process and leaves me pretty drained. My housemates do an amazing job of waking me up, cooking for me and carrying my stuff etc when my PA isn’t free but

Final update- I’ve started using the F word in my tics. Not good. My PA takes the insults like a champ. Hoping these don’t last!

Accessing Cambridge

I recently had a lovely ‘staycation’ get away in Cambridge with my friends, we stayed in an airbnb for 4 nights which was lovely/ it was the nicest airbnb I’ve ever stayed in!

As with anywhere I go, trouble tends to follow me and we had a few major mishaps with the ol’ mobility scooter. I’ll dedicate another post to this but what with flat tyres, dead batteries and broken scooters it’s safe to say we had a dramatic trip.

So I’m going to start with a special shoutout to an absolutely wonderful man called Martin who worked for Shopmobility in Cambridge who saved my bacon. I hired 4 scooters for extended periods of time for no charge, he tried to fix dead scooter, I got rescued by Martin after a flat tyre on a scooter and more. If this service and Martin’s assistance hadn’tve been a thing, I would’ve spent my trip in the house on my own or ALOT of money on taxis. Shopmobility in Cambridge was fab and more places need to take note!!! (Free parking downstairs in the multi-storey which is a bonus too!)

ACCOMODATION:

The Airbnb we stayed in was LOVELY!It had two double beds and two king beds (ofcourse I bagsied one!) as well as a really lovely living space and small garden. We had a socially distanced check in (lockbox) and it was a much needed get away!

ACCESSIBLE ACCOMODATION:

So I didn’t stay in an accessible place as our booking was last minute and not too much was available, I also didn’t think I needed it, (although the bathing/ showering and stairs situation was definitely a big struggle! I know accessible Accommodation can be limited so I don’t want to take it away from people that need it more than me. I’ve linked a few places below that may help if you plan to visit.

DAYS OUT:

A useful guide written by Cambridge Students Union :

and accessible Cambridge.

These are absolutely exceptional accessibility guide of which would be incredibly useful for you or your carers if you wish to visit Cambridge and have concerns over access needs.

THINGS TO DO:

If you’re an outdoorsy person, there’s tonnes you can do outside in Cambridge to keep you happy.

There are two pubs near punting on the river which were both lovely.

The Mill Pub are doing takeaway drinks which you can take and walk/ roll along the river. (There’s a small gate to get through but you should fit) the route along the river is pretty flat. We also stopped at the Mill works for lunch where I was able to leave my scooter outside whilst we ate, again through a small gate. I’d really recommended doing one or both of these as the views are gorgeous!

Note the floor is pretty flat too!

We went to the Universities Botancial Gardens with a scooter it was absolutely gorgeous and we loved spending the day outside there. access yes all part from Rocks

Below has accessibility details for the gardens.

https://www.botanic.cam.ac.uk/visit-us/access/

If outdoors isn’t your idea of fun, then Cambridge Shopping centre is almost entirely accessible it really was amazing. People maintained social distance well.

THINGS TO BARE IN MIND IN THE CITY:

– Lots of cyclists

– It is a very busy

– Not all cafes and restaurants are accessible

Lots of restaurants and shops had steps up into them which is not particularly helpful!

– Some streets are very cobbly, which hurt my ears and back on my scooter.

– Sensory stuff and street noise

– Lots of narrow doorways & steps to shops

Call and ask about specific accessibility needs even if it seems obvious. Not everywhere understands what the term means!

Disabled people queues and lifts!!!

– The queues for some places such as the Regal (big wetherspoons) were absolutely huge and we queued for a really long time, I’m not sure if this was a one off or due to new covid restrictions but it was a very busy at all pubs.

– Don’t do the small outdoor market if you’re on wheels as there’s no point & you’ll probably get stuck in the gravel & break your scooter like I did !!!

Afternoon tea at the Clayton hotel was lovely! We had the whole room to ourselves and it was great, (although I spent the whole time in the being sick!)

https://www.claytonhotelcambridge.com/restaurants-bars/afternoon-tea-cambridge/

So in typical Lauren style I had a fat migraine whilst we were out at afternoon tea, I was on my scooter and couldn’t feel my arms or legs and could only see out of one eye. I was sick multiple times and did not have my migraine medication on me. I managed to get a prescription sent over to a local pharmacy and we went over to pick it up. SO IT HAD A STEP INTO A NARROW DOORWAY WITH A FIREDOOR? A PHARMACY. A PLACE WHERE PEOPLE GO WHEN THEY ARE POORLY, CHRONICALLY ILL OR DISABLED. AN INACCESSIBLE PHARMACY. I was on my scooter and had to wave to them to come and do my transaction for my meds at the door? Like seriously. If I wasn’t feeling as horrendous as I was perhaps I could’ve said something!

This seemed to be a common theme similar to how it is in Brighton.

I hope this guide helps you to have a nice day out in Cambridge!

Take care

Lauren xxxx

AN UPDATE

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

Parking brighton

I’ll be writing a letter to sign soon to the council & MP’s, but in the meantime if you have 2 mins to fill out any of these surveys that would be amazing.

Blue Badge parking bays have been removed across the country due to Covid-19 social distancing restrictions, in brighton particularly they have permanently replaced them with cafe seating areas, cycling lanes and tarmac. As someone who runs a disability group of over 200 people I know all too well how this has dramatically impacted the lives of disabled people! Disabled people are already isolated and taking away their access rights is not acceptable.

I’m in the process of doing some other work surrounding this topic but in the meantime if you could fill any of these out or share them around, that would be incredible.

https://www.change.org/p/justin-tomlinson-mp-bring-back-disabled-parking-access-is-a-right-not-a-privilege?recruiter=1142806896&recruited_by_id=920440b0-e2bd-11ea-9771-079c563a79db&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard/

https://www.change.org/p/justin-tomlinson-mp-bring-back-disabled-parking-access-is-a-right-not-a-privilege?recruiter=1142806896&recruited_by_id=920440b0-e2bd-11ea-9771-079c563a79db&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard

https://www.change.org/p/justin-tomlinson-mp-bring-back-disabled-parking-access-is-a-right-not-a-privilege?recruiter=1142806896&recruited_by_id=920440b0-e2bd-11ea-9771-079c563a79db&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard

https://www.change.org/p/justin-tomlinson-mp-bring-back-disabled-parking-access-is-a-right-not-a-privilege?recruiter=1142806896&recruited_by_id=920440b0-e2bd-11ea-9771-079c563a79db&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard/

https://www.change.org/p/justin-tomlinson-mp-bring-back-disabled-parking-access-is-a-right-not-a-privilege?recruiter=1142806896&recruited_by_id=920440b0-e2bd-11ea-9771-079c563a79db&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard

/https://wheelsnoheels.co.uk/accessibility/

Thankyou ❤️

TOURETTES TAKEOVER- for Tourette Syndrome awareness month.

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.

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.

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:

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..

Mental Health Awareness Week: MY TOP TIPS!

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.

Chewing Gum

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.

Lavender

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.

Brain Dump-

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’t become 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.

Communicate

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.

Love yourself, Look after yourself and be kind!

L xxx

Mental Health Awareness Week- Panic Disorder

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 tiger is about to attack- do you fight it, flight (run away) or freeze- don’t move? Your instincts will act quickly and respond therefore the decision is not in your hands.

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.

Symptoms include:

  • A racing heartbeat
  • Feeling faint
  • Excessive sweating
  • Cold Sweats
  • Nausea
  • Chest pain
  • Short of breath
  • Hyperventilating
  • Trembling
  • Hot flushes
  • Shivering
  • Chills
  • Shaky limbs
  • Dizziness
  • Pins and needles
  • Numbness
  • A need to go to the toilet
  • Cramp
  • 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 Panic

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:

  • Genetics
  • 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

Phobias:

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:)