chloe2Chloe, blogging and tremor

21 year old Chloe talks about blogging and her experience of living with tremor.

There is a reason I started blogging and it is a reason that will hopefully change my life for the better. On the 25th October 2017 I experienced the worst day of my entire life. In order to explain this day and how it has affected me, I need to give a bit of backstory.

I have essential tremor. I have had it for as long as I can remember but I was officially diagnosed when I was 13 years old. I know a lot of people will be unfamiliar with this condition so I’ll give a bit of explanation. In simple terms it is basically an uncontrollable permanent tremor throughout my entire body that there is currently no cure for but there are various medications that can manage it (to a degree.)

It truly does affect my entire body: my arms, hands, legs, feet, head, lips, stomach, eyelids. It even affects my voice, which I find very stressful as it often sounds like I am about to cry when I am in a nervous situation- so phone calls would, naturally, be another source of anxiety for me as I was always worried the person on the other end of the phone would think I was upset. Additionally, my muscles are affected so occasionally I can see my muscles shaking under my skin, which is particularly bizarre for me.  There are many factors that exasperate and intensify my tremor which include: anxiety, being hungry, being too tired, being too cold, being too hot, adrenaline, caffeine and the worst of all: being hungover.

There is another huge point to cover here- alcohol completely gets rid of the tremor and when I say it completely gets rid of it, I mean it becomes non-existent. Therefore throughout my teens I would often drink to self-medicate and relieve the stress that the tremor would put on me. Alcohol would also allow me to do everyday things that I couldn’t do with the tremor (for instance: walking down steps, taking a drink, eating soup, writing, the list goes on and on.) I remember enjoying the feeling the alcohol gave me as it made me feel like a ‘normal’ person and I couldn’t believe that people were actually living their lives with this feeling of normality and I was extremely jealous of that. Imagine that, the one cure to your condition, is something that can actually kill you (or is extremely dangerous). But this was a really big problem for me and I was in denial for years that I had become dependent on drinking to calm my tremor and my anxiety. I had normalised using alcohol to self-medicate and kept it a secret for years.

Studying a degree in German meant tohave a compulsory year abroad, in Marburg, Germany.  At first everything was great, the city was beautiful, the food was amazing and the locals were lovely.There came a day where I had to meet some of my new flatmates, but I had the huge problem that my legs were completely shaky and I didn’t want to meet them, whilst basically not being able to stand up. Therefore I decided to have a drink to calm myself down and stop my legs from shaking. Of course as one does when socialising this led to another drink and then another.

The next morning and I realise my tremor is so bad that I can barely even stand up. So, I went through my options and decided the only real way I could even get out of bed was to have another drink… so I did. This cycle continued for a few days- drinking, waking up with a hangover, not being able to stand/walk and then drinking again to be able to continue with daily life.

Then one day after drinking again to be able to do ‘normal things,’ I get a surprise visit from my parents, who took one look at the amount of alcohol bottles in my room as well as the state that I was in and took me to a hotel and booked the next flight home. The problem is with having drank so much over such a short period and then completely stopping, it really messed with my mind as well as my body.

On the way to Frankfurt airport the next day, I could barely stand, never mind walk. The thing is when ‘normal’ people get hangovers they get the shakes, so imagine when a person with a tremor gets a hangover- it is literally 10x worse and as my legs are the worst part of my body for my tremor anyway, I genuinely couldn’t support myself.

So we get to the airport and put the hire car back in the car park. At this point , I realise I genuinely can not walk at all because my tremor is so bad, so my step mum goes to get a wheelchair for me. However it turns out they couldn’t bring a wheelchair down to the car park for some reason, so my dad had to carry me all the way to the departure lounge so we could get a wheelchair from there instead. This is when things got even worse. Apparently you can’t get a wheelchair in Frankfurt airport unless you book 2 days in advance. So even in the state I was in and (what we thought was a great acceptance of disability in Germany) they wouldn’t give me a wheelchair. Bearing in mind Frankfurt airport is the third BIGGEST airport in Europe, my 52 year old dad had to carry me all the way to the gate, which couldn’t have been further away. Not only did we see an abundance of free wheelchairs throughout the airport that weren’t in use, not one single person offered to help us. Not one single member of staff or civilian offered any kind of support. I was even laughed at as my dad was attempting to carry me through to the gate because of my tremor. People were even taking videos and pictures, as if having a disability is some sort of tourist attraction- I mean, last time I checked we were in 2017.

Then we get to the plane and we were flying with Ryanair, who I can honestly say were amazing at dealing with me. At first everything seemed fine on the plane, the take off was ok and the first 10 minutes or so were just average. However I then experienced the worst feeling I have ever had in my entire life and as it turns out I was experiencing my first ever panic attack. I can honestly say I have never felt so terrified and helpless in my life- I was screaming and shouting out (and if you know me at all, that is completely not in my nature.) My whole body was convulsing and I was sweating profusely as well as throwing up. (Most likely from the alcohol leaving my system.) My parents were amazing with dealing with me, helping me with breathing techniques as well as reassuring me when I was having a wave of a panic attack and I honestly can’t thank them enough. When we landed my stepmum was incredible (as she is cabin crew herself,) she had arranged with the Ryanair staff for a paramedic as well as a fireman to help me off the plane, in order to do an assessment (shout out to Darren who really helped me to calm down!) I was then put straight into an ambulance with 3 brilliant paramedics who helped me to try and overcome the constant waves of panic attacks.

After this, I went straight to A&E, where the nicest nurses/doctors looked after me until a bed became available on a ward. I was in there for 6 days on a withdrawal programme and can honestly say the staff at Leighton hospital are amazing. Not only did they support me through my attacks but they would always make an effort to talk to me and make sure I was alright when it wasn’t visiting hours.

I don’t know what the future holds for me right now but at the moment I am focused and determined to get better and to live a more healthy lifestyle. I am hoping these blogs will help me on my journey to recovery and as a way to reassure my family and friends that I am getting better now.

Read more about Chloe and tremor in her blog

Have you been affected by any of the issues in this story? If so, please get in touch on enquiries@tremor.org.uk