My struggle

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Hi wonderers , ( lets make this happen)

I am a 25 year old female. 26 soon. This year was supposed to be a start of a good year for me as 2017 ended somewhat shockingly bad. Oh how i wish i can re-live that year over and over again and avoid the devil of this illness.

Beginning: 

June 28th-2018. 

I remember it being so hot that summer. It was odd as we never had a very warm, horrible, boiling heat in YEARS!.

I hated it. i was never a fan of heat, i loved and still love winter.
I woke up that morning feeling tired more than the usual. I blamed it on my sleeping routine. I got dressed, got on the bus and headed to work. I found that getting off my chair was a struggle, i felt disorientated and tired. my body was moving and i felt unsteady on my feet.

I thought it was my blood pressure or dehydration from the heat so i bought everything i could to hydrate and boost my energy back up.

Nothing worked and i just got progressively worse and worse. I started to have a throbbing headache that started at the very top of my ear and it felt like someone was stabbing me with a nail over and over again. It was a new sensation and i was scared.
I left work early and headed home. Dizziness got worse, anxiety kicked in and i couldn’t breath . Called my dad to call the ambulance as i panicked that this is worse than what i expected. The ambulance arrived 45 minutes later, paramedics checked everything and they said ” you’re fine, it could be the heat”

I went to bed , hoped for some sleep that never arrived and rested as much as i could. I decided to check in with my GP the day after and she diagnosed me with an inner ear viral infection and said  it will ” pass”. So i Went home on a good note that it will ” pass”.

Due to my paranoia i was researching through the internet a-lot… i came across labyrinthitis and people talking about VRT ( vestibular rehabilitation therapy). VRT is a form of therapy that provokes your dizziness to retrain the brain to the damage that the virus may have caused to your balance nerve. I decided to try it out as there was no harm in trying. I had no ill effects, no dizziness  and everything was going okay, so my brain said ” you dont have it, dont worry” .

The feeling did pass and i was on my way to work .

Everything was going okay, i was me again, so i thought….

22nd July -2018.
I woke up that morning , tired as usual and headed out to help my friend find a dress fpr her wedding

I met my friends for brunch and headed out to shop. As i entered the shop i felt the same sensation again, if not worse. I was dizzy, very dizzy and unsteady on my feet all over again. I didnt understand the feeling , i thought my virus had passed, why is it back????. I ignored the feeling and hoped for it to go away. I felt better when we left the shop and to my knowledge it was gone and it was just a feeling.

Things progressively got worse from there. I was constantly unsteady on my feet, dizzy, nauseous and tired all the time. The stab feeling came back , especially during and after exercise. It was a terrible feeling and i wanted it to end.

I decided to pay my GP a visit as the feeling was uncomfortable and scary to manage. The GP diagnosed me with Labyrinthitis.  YES, the same thing i was researching came out to be true, but WHY?!?!?, WHY ME?!?!? .

I was told again, that it will ” pass” , but i needed an MRI to make sure its nothing sinister.

During the wait, i was still exercising and it was painful. It provoked my dizziness an awful lot ,but i decided to stick to it as much as possible as my brain needs to ”retrain” and this was the ONLY way.

The symptoms were bearable and i was able to function on a minimal level, until the 7th of August….

7th August-2018.
It was the first day of my new job, i was excited to start, yet nervous about my symptoms. I didnt know what i was expecting.

I was still waiting on my MRI and still struggling to avoid the fluorescent lights at work. Everything was too bright. I was tired, unsteady and TIRED. I kept swaying to the right , i couldn’t balance and my appetite was atrocious. Everything was going okay, few headaches and weird woozy feelings every few hours or so. I thought i was going to survive this and everything is going to be okay.

The team decided to show us around the building while using the lift.

MAN!! , what a BIG!! mistake that was….

I knew deep down in my heart ….that i will regret getting on the lift for some reason.My mind was warning me, it was telling to KEEEEEEEEEP! away, but i did not want to feed my paranoia anymore ( wrong time and day to do so) .

I remember feeling an intense pressure going from my head down to my body and as we got off i felt this instant spin that refused to leave me. I was nauseous through out the entire time and i forced myself to stay upright.

The work day ended, and for some odd stupid reason i wanted to go to the gym, and i did. It was miserable… i was dizzier than anything that day and i wanted to die… seriously DIE!. I went home right after , washed my face, swayed my way to my bedroom, laid down and cried about everything. I couldn’t sleep that night, i was so sensitive to noise, light, smell, touch, everything. I slept at 3am eventually and for some odd stupid reason ( if you haven’t noticed, i have a huge tendency to do stupid things) , again.. i decided to head to work.

The journey was mentally and physically exhausting. I wanted a car to hit me and kill me. I had enough of suffering.

I started at 9am and went home at 12pm that day and i headed straight to my bed. The journey started right there and then and everything up until now, is a heavy scary twisted horror story.

To be continued…

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Tuesday , 9th October 2018

I am currently at work, waiting for our system to start working.

I was here since 9am.

It is now 11:44am and i have been sitting here waiting for a miracle… maybe??

I am doing slightly better than yesterday. I can still feel bouts of dizziness, but its not as bad as it was yesterday. The feeling is still disgusting. I spent my morning searching again. Searching about the possibility of recovery from LAB.

Is it possible… ??? I will never know

we live in a world of denial. Its hard to accept an illness you never had before.

I wil try to update on a monthly basis from now on as every day is different for me.

Hoping for a big improvement.

x

Present.

September struggle continues.

The first few weeks of September were difficult. Waking up in the morning was always a guessing game.

I would sit at the edge of the bed, count to 3 and get up slowly hoping for a dizzy free day.

My bad days were less frequent and further apart , but that does not mean that i don’t experience symptoms. I would have a funny wave of dizziness every hour or so , or a fast head movement will leave my eyes moving in slow motion.

I was extremely depressed at this stage. I was researching non stop. ( I still do). I spent 8 hours a day searching about the prognosis of this illness and the rate of recovery. Google assured myself that recovery is 100% in majority of the patients , but reading horror stories online has left me doubting it so much.

My GP informed me that the vast majority recover , but what if im not one of the vast majority of people? and what if i am one of the unfortunate unlucky ones.

I had and still have many “ what if” questions.

I suffer from social and health anxiety way before the onset of this illness and one thing i always do is search about my symptoms.  It will most likely leave you believing you have the worst kind of every disease related to your situation, so i would strongly advise against it.

I was and still am thinking that i may have vestibular migraines instead of LAB , but only time can tell.

Vestibular migraines or what we like to call ” VM” for short ,is a vertigo associated migraine. The definition is in the title. Some patient suffer with both vertigo and migraines, some do not even experience a migraine and only struggle with vertigo alone. It is diagnosed in about 1% of the population, however since many go undiagnosed or misdiagnosed with other vestibular disorders , researches believe that it is most definitely higher than 1%. VM can be diagnosed based on your symptoms and history with or without migraines. A neurologist will carry out various tests to be able to identify a proper diagnosis with or without the presence of migraines. Preventative medication will however be given regardless and some patients also benefit from VRT if vertigo is present with head movements .

Now that i have presented you with my medical degree through google, i have yet to wait to be 100% certain that this is lab and not VM

September passed and my paranoia started to grow.

Why am i not recovered yet ??

Why am I still suffering?

Why is this taking so long?

What if i have to live with this for the rest of my life?

Is this my reality now?

Is this what i have to live with for the rest of my life ?

So many questions go through my head and i dont know what normal feels like anymore.

Symptoms fluctuate alot in this illness and so does hope. I go through weeks of hope and weeks of depression.

Sometimes i look back at how normal my life was and how i took pretty much everything for granted. I will never be the same.

I had a follow up appointment with my ENT doctor and he was “ happy” with my improvements.

At the mention of my medication he said “ the reason behind why i prescribed you SERC was because you had hearing loss “

wait a minute…..

I never had hearing loss , what is he talking about ?  I, of course replied with “ No i did not, i had a hearing test and the audiologist said everything is normal. She gave me a copy of the results and said she’ll send you one too “

He then started rummaging through his post and found nothing. He blamed the audiologist and said “ she must have sent it somewhere else “

So there you have it everyone , don’t trust shitty doctors who prescribe you things for symptoms that you never had.

He went on to say that i was “ fortunate enough” to not have any hearing loss.

Fortunate ??? Did he just say fortunate??

While i am thankful, i am nowhere near fortunate. Fortunate would be not getting this illness AT ALL!

With that being said , he approved my return to the gym and said “ keep doing your VRT exercises” with no mention of anything else or how long to do them for. I was sick of trusting him and decided to search for a physio who can help

October. 

Since my last physio was useless, i decided to look for another one who took me seriously. I decided to take the day off from work to get my bloods checked and to also attend my physio appointment. I felt a sense of relief once i entered the clinic. The physiotherapist understood and explained everything there is to know about LAB and why i was experiencing each symptom. He wanted to measure the extent of my problem and how far we need to work from there.

He carried out a few tests and asked me to show him the exercises the ENT doctor gave to me. He took one look and said “ Thats way too much to give to someone and have a patient do them all at once , but since they helped and they’re not working anymore , lets get you working on something else and have you working on your balance on a non stable soft surface”.

That sh*t sounds harder than you think. The exercises are to be done on one leg , on a moving surface , with your eyes closed , head moving and you have to avoid using your hands for balance as much as possible. I am 3 days in and i am noticing a small change in my balance , but it is too soon to tell.

Yesterday. 

My PT informed me that things will get worse before you start feeling better. A saying i will always remember and never forget. He informed me to keep exposing my self to all my triggers and that it will get better with time. A statement that is easily given by someone who is not suffering with this hell. He was however very sympathetic and mentioned that its easy for him to advise someone who is struggling, but through experience he assured me that things will gradually get better .

My sister suggested we go shopping on the weekend. While that offer would have excited me months ago , this time i got nervous and very wary of everything and everyone around me.

The beginning was fine , however I started to slowly feel the dizziness creeping back and i hated everything.

We wanted to eat so we decided on thai food , sat at our table and ordered our food. Everything was going okay until I started feeling like sh*t again.

For those who dont know. Large crowds , busy environments and loud noise tends to aggravate the symptoms in some people and i am one of them unfortunately.

I was unbelievably dizzy and asked my sister if we can leave. Upon leaving ,the unsteadiness came back and i went home fearing the worst. However , the worst feeling passed and i was able to carry on with minimal symptoms.

This morning  

I couldn’t sleep yesterday  fearing the worst and how i will start experiencing all the dizziness again at work. I was right. I spent all day at work feeling unsteady, dizzy and shitty.

I have noticed a pattern , finally. Depending on my triggers, my symptoms will linger until my brain learns to compensate and that is how recovery works in LAB. In the good real world , recovery sounds amazing and the closer you are , the better you feel. But thats not the reality with people who suffer from LAB.

You will, infact, feel alot worse before you start compensating and that is the way your brain works.

Certain triggers have a long term effect on me. Getting on the lift left me disorientated for weeks , but with my recent improvements the triggers seem to linger less and less.

I can not tell how long this one will last , but i can sense that it will stick for a few days as i can still feel it while typing this.

Right now  

I managed to finish a full day at work. It was difficult. Everything made me dizzy, i was unsteady on my feet , but i managed to keep my smile.

I get many “ how are you?” questions  and people always find it odd when i reply with “alive” . Thats all i feel right now. No happiness, no gratitude, no satisfaction, nothing.. i feel empty and scared. I am a breathing body with no feelings inside.

We take so much for granted, we complain about the small tiny  things and yet we forget that health is not a given and you must work hard to maintain it.

I was a strong active girl with so many dreams and plans ahead , but this illness has stopped everything for me.

Before, i used to wake up in the mornings complaining about the small things and why they wont go away.

Today i wake up wishing to never wake up again..

Its easy to read about it and wonder how bad it can be , but you will never understand how debilitating it is once you have struggled through months of pain and pure fear of it being your reality.

I walk outside envying everyone who look healthy to me…

but….

are they healthy?

are they doing well?.

This illness can manipulate and trick people in to thinking you look okay.. you can be the image of health , but you are struggling inside, a struggle you are giving your all to.

Is this my life now ? Is this how i will spend the rest of my life ?

To be continued…

The follow up.

Hi wonderers ,

Before i continue on with my ongoing story , lets have a quick description of labyrinthitis ,which we will refer to LAB from now as it is easier to type. EVERYTHING ABOUT THIS ILLNESS IS DIFFICULT, DAMMIT!!

LAB: 
The inflammation of the inner ear. It results in a sensation of the world spinning and also possible hearing loss or ringing in the ears. … Either bacterial or viral  can cause a permanent hearing loss in rare cases.

Symptoms may vary  and different people experience different things. It really is a very misunderstood disorder and every specialist has her/his definition of it.

What i know for sure is that there isn’t enough awareness or enough knowledge around the illness and GPs and ENTs find it difficult to give you a clear understanding of it as they only follow text book.

My symptoms only gradually started to get worse. The dizziness was so sudden which was followed by tinnitus that only appeared 3 weeks after onset of lab.
I had constant swaying, rocking, dizziness ( lasted about 3 weeks max,however it still comes back in waves) , motion sickness, nausea , noise sensitivity, tinnitus, anxiety, depression , visual disturbances and my eyes were not coordinating  at all .

Symptoms have gradually improved since then, but the feeling of swaying and unsteadiness still comes and goes till today. ( Having a set back as i am writing this)
what is a setback might you ask?

A setback is the experience of certain symptoms that may vary from severe, moderate or mild during your process of ‘recovery’.

We , lab sufferers call them BAD DAYS.

They can knock you down completely. Your mental state starts to give up, your anxiety kicks in, everything falls apart and you begin to lose hope.

A setback makes you experience the same symptoms ( maybe not  as severe as they were before) , but they can most definitely have a huge impact on how you feel about your progress. It can leave you disheartened and leave you thinking that this illness will NEVER get better and you will be stuck where you are for years and years, if not forever.

The process of recovery is a rollercoaster ( literally ) and it always tends to have bad/good days. While the bad days have become less frequent, they still linger on and as i mentioned above , it can leave you with huge disappointment , depression and anxiety.

So since we have introduced the devil to you, lets continue on with the my journey.

MRI day and results.
The days leading to my MRI were pure torture. I wasnt eating, wasnt sleeping, wasnt doing anything and i was a nervous wreck . Not only was i dealing with anxiety, my tinnitus was annoying me more than my actual illness!. I wanted to get rid of it and i kept listening out for it. Masking it was impossible and the damn thing kept torturing me. I HATED it and i wanted it to vanish away, but it wouldn’t. I placed my focus entirely on my tinnitus and avoided my recovery process.
The day finally arrived and i was ready to face my MRI. It was loud as f**k , but it ended pretty smoothly , was given a disk of my results and headed home.

I was to wait for a call from my GP to discuss the results of my MRI. It was a long wait , but thankfully it finally arrived and everything came back okay.

My GP had a very weird suggestion which i will always remember

… he said …

”Do you want to wait to get better first or get referred to ENT”

I will say this on behalf of anyone who is struggling..

WHAT?!?!?!?!……

Is he crazy?

How can i wait without a 100% definite diagnosis?

I, of course requested for a referral letter and called for an appointment.

The appointment was 3 weeks away and i couldn’t wait that long. A friend of mine was able to get me a very last minute appointment through a friend and i got really lucky to get one. However, i will say i was lucky in the sense of getting an appointment quickly , but not lucky with the doctor i got. He was rushed, uninterested, very tired, didn’t know majority of what was going on and just went with what my GP diagnosed me with. He did however give me tablets to help and VRT exercises to start on. He forbid me from exercising and he wanted me to ”rest”. Odd thing is, every physiotherapist who is specialized in VRT will inform you , that the best form of recovery is movement and exercise. This ENT doctor clearly had other plans. He informed me that it will pass in 6 weeks, when i have already suffered for 6 weeks. Initially, my biggest concern at the time was the ringing in my ears and i had ignored all the other symptoms at the time. He sent me home and i was NOT HAPPY. I was not happy with his diagnosis, his treatment, the way he seemed so unconcerned , tired and uninterested to actually help me. I walked back home with anger and disappointment.

Once i got home, my family was waiting for me to give them the news of my diagnosis. I was angry, frustrated and just plain exhausted. I have never been so ill like this in my life.

I remember going through so many injuries throughout my teenage and training days and they never come close to how i was and still feeling right now. Its a terrible cycle that never wants to end.
My mother asked me ” what happened?” and i lashed out!!. I SCREAMED! and blamed them for everything. It was unbelievably selfish from my part, but you have to understand that this illness is very debilitating because its very unpredictable. Recovery is certain in 95% of the cases, however the extent and the specific time is never a given. Doctors claim that it will pass and most patients recover, but why am i still suffering till this day?

I managed to relax after a while and my family assured me that this will pass and i will get better. Its hard to believe it when you’re going through so much. The feeling is hard to explain as it frustrating enough to want to kill yourself.

During the 6 weeks.
The purpose of VRT exercises is to provoke your dizziness and retrain your brain to balance. Its like a baby learning how to walk all over again. Its a long horrible process and improvement are gradual and ugly. The beginning of my VRT exercises made me sicker than a dog. I wanted to puke every-time and there was no escape. The problem is, i am FORCED to do this, i am FORCED to feel like this and i am FORCED to force my self to feeling like sh*t to recover. Weird right?? .

Week by week, i started to notice gradual small improvements. It didnt come easy. I cried and cried and cried… walked and walked and walked. I kept exposing myself to all the triggers that i think might set my dizziness off and it was a disaster . I hated it more than life itself.

I was eventually able to cross the street .. yes… i had to retrain my brain on how to look right and left and to manage to use my eyes and focus on specific targets.

It was small baby steps and i had to go through HELL to get to one small improvement.

Back at work.
The ENT doctor approved my return to work and i was happy to do so. Staying at home depressed me so much. I cried more than i walked lol.

First day back was difficult ,but it got easier as the days went by.

My training group was fun and crazy and i was able to get distracted enough to forget my symptoms for awhile.

At this point, i had setbacks every week, and they became less frequent. Walking around and spinning too quickly put me off , but i managed to continue on. I cried on my way home everyday, i still do till this day.

September.
Its been a long road. A painful road. I am still struggling at this point, but my good days are more frequent.

I can walk around, shop around for more than 10 minutes, Talk to friends, meet up with my friends and even have hope of going back to my gym training days.

The majority of the VRT exercises stopped provoking my dizzy spells and therefore i knew i needed to upgrade them to challenge my brain even more.

The exercises need to be tailored to your specific condition. It needs to be upgraded as you go. Look at it like when you are at the gym, you need to up your weight every 6 weeks or else you’ll be stuck at your current weight with no improvements or changes.

Through many research , i heard that osteopathy treatments can help relieve pressure from you neck or maybe heal you from inner ear issues. I had one treatment and the crack of my neck gave me lovely relief from a horrible headache i was experiencing at that time. So yes, it did help, but not to the extent of what i had hoped for :(.

I decided to book an appointment with a specialized VRT physiotherapist. Unfortunately for me and maybe for the majority of the people who suffer from this hell of an illness…. will maybe, if not always come across the worst in the industry until you find the best.

The physio was more interested in treating my neck rather than my balance. She carried out a test that is used on BPPV patients. I had no reaction to it and OF COURSE tested negative on it as i do not have BPPV ( thank god). She was 100% sure that i do not have LAB and that the problem is in my neck.

Many problems arise from this illness and the feeling of desperation to gain relief is one of the main priorities for most of us. I was desperate to try anything and since she mentioned that she suffered from LAB before i had no reason to doubt her.

I do have stiffness and pain in my neck, which is normal as the neck holds all the tension you have.  She carried out a dry needling treatment and assured me that i will get better. While that may have been true or not, Being dizzy most definitely overpowers every other feeling you have. She gave me neck stretches to do 3x daily and to fix my posture at work. Its a difficult task once you work in an office with two computer screens staring at your face. I managed to do as i was told and carried out my VRT exercises 2x a day and thankfully managed to sleep as opposed to 2 hours of sleep when this illness started.

To be continued…..