Back to the ‘spoonie’ lifestyle…

Not long after returning from the cruise; in fact it was four days after returning I had to attend an appointment at my local hospital for an MRI scan.  Although, as many of you will know from reading my last post, the holiday was difficult for me, however a positive of the trip was a break from the monotonous lifestyle of a spoonie, such as the endless days stuck inside the house and the endless numbers of hospital appointments and doctor’s appointments.

But now that I am back home, I am also back to living the life of a spoonie.

images
The neurological patient’s most dreaded test…

 

And the first step on the ladder back to the life of a ‘sick chick’ was the MRI exam.  A test that has been nine months in the waiting! Yes, a nine month wait for such a procedure is what you can expect from the NHS in Wales!  And even more surprisingly was the fact that the scan was scheduled for 7.45 at night!

The MRI experience is strange and alien no matter how many times you’ve experienced one… (Click to Tweet)

An MRI scan that many of those of you living with neurological conditions are subjected to regularly.  And it’s an experience that is strange and alien no matter the number of times you have had one done.

The machine itself is big, extremely loud, and rather claustrophobic.  So, it’s no surprise that it can invoke a lot of anxiety in many people.

I have to admit when I experienced my first MRI, I was petrified and anxious, however with like many experiences in life the anticipation turned out to be much worse than the experience itself.  In fact, I rather enjoyed it; feeling cocooned whilst in this strange cylindrical scanner and practicing visualisation techniques as a distraction technique from the noise and my anxiety.  For me, I would much prefer the MRI scan and being enclosed than the CT scan which is more open – I may be in the minority there, but it’s true at least for me.

As, the appointment last Tuesday was not my first MRI scan I was therefore slightly more relaxed beforehand but there were still some butterflies in my stomach as although the procedure is not invasive it can still be very unpleasant due to the noise and confinement in the machine for a considerable length of time (this scan of my brain and entire spinal cord took approximately 1 hour).

As there was no receptionist on the desk on arrival we had to phone through to the MRI suite to inform them of our arrival, and then after a nearly 30 minute wait, I was ready for the scan…

The technician helped to lie down on the table and placed my head in a brace to limit movement whilst the scan took place, and gave me an alarm to hold onto that I could squeeze in case of an emergency.  And of course was given some earplugs to place in my ears to limit my exposure to the loud noises that the machine can produce when scanning the parts of the body under investigation.  When under stress or during periods of boredom (yes, having an MRI can be very boring indeed!) I love to listen to music and I know many people  have reported that they had the option to listen to music during their scan, but unfortunately I have never been offered this option.

After settled in the machine, the technician left the MRI suite and situated herself on the other side of the glass window where she was controlling and monitoring the MRI.  And then it started…

I knew beforehand that this scan would take longer than the last which I found daunting as during my previous MRI I found it extremely difficult to stay still for the entirety of the scan.  I found it true of this scan too, and in fact I was so aware of my body and trying not to move that I was in some considerable pain afterwards. After the scan I also had a headache due to the noise that was produced during the scan – the noise a combination of extremely loud knocking and banging as well as the occasional ringing sounds.

Now, it is just the waiting game until I once again have to visit the neurologist and find out the results of the scan and the other tests that I have been subjected to during the past few months…

Would love to hear all of your MRI experiences?  Good or bad?  What techniques do use to get yourself through the experience?  What techniques can we use to make the experience more ‘fun’ whilst the scan is in progress?

Please get in touch by commenting in the comment box below…

Talking Mental Health…

nhbpm_daycount-21

Welcome to the twentieth-first day of the National Health Blog Post Month Challenge hosted by WEGO Health.   Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s post reads:

Mental Health Meld: Mental health issues can affect many other conditions.  Write about mental health, emotions, and challenges as they relate to your condition. How does your mental health affect your overall well-being?

Let's talk Mental Health...
Let’s talk Mental Health…

Regarding yesterday’s post about the start of the dizziness in my life, entitled “I still remember..“; it also triggered an anxiety disorder.  Due to the intense dizzy spells that I experienced as a young child and becoming worse as a teenager, it resulted in me worrying about everything; worried about the when the next time the dizziness will occur.  And then when it occurred in places such as a supermarket, or in a particular shop, I would worry that it would happen again and so would avoid that places, in the hopes that I would avoid an attack of the dizziness.  However, this obviously did not stop the dizziness from the occurring; but only resulted in my world from becoming smaller and smaller as I avoided more and more places.  In addition, as a result the dizziness that I kept mentioning to the doctor was put down to the anxiety disorder that I was diagnosed with.  This is the problem with being diagnosed with a mental illness; it is widely acknowledged that mental health patients face difficulty in getting diagnosed and treated for physical illnesses as doctors will often blame their psychiatric diagnosis or the medications that they are taking on the symptoms that patients are experiencing.

A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition...
A diagnosis of a mental illness can be a roadblock to getting diagnosed with a physical health condition…

In the end, I got help and treatment from the anxiety disorder, and thanks to therapy and graded exercises my world once again started to become larger as I started to visit the places, I once avoided.  The relaxation techniques that I were taught, helped with the anxiety I was experiencing; although the dizziness was still very much there and still as intense.  Now, I still find that anxiety is still an issue; an issue that can affect my mental and physical health,for example when  the dizziness becomes so intense when out, my first instinct is still to panic and become anxious, although the anxiety I find is something that I am able to control, unlike the symptoms relating to my neurological condition, such as the dizziness, and the weakness and trembling in my legs, etc.

It is not only the anxiety, however that can be a problem for my mental and physical health however; depression is also another mental health issue that I have experience of, and can which still be a problem, years even after it first started.  The depression, can still rear its ugly head, when I am experiencing bad flares in my condition.  I often experience the depression, when my symptoms have been really severe for a long period of time; for example recently the dizziness has been so bad for several weeks now, and that has been making me feel down a lot of the time because of it; and because of the depression, the fatigue that I already experience becomes even worse, and that has a knock-on effect on the rest of my symptoms.

Depression can appear during flares in my condition...
Depression can appear during flares in my condition…

That is the thing with mental health conditions when already living with a physical health condition – it is a vicious circle and one of the health conditions become worse, it automatically affects the other.  So, to survive living with a physical health condition, we also need to look after our mental health…

Do you find that the best way to live well with your chronic illness is to also look after your mental health?  I would love to hear your thoughts and comments regarding this issue.  Please comment below…

Secrets Shared…

nhbpm_daycount-09

 

Welcome to the ninth day of the National Health Blog Post Month hosted by WEGO Health.    Every day during the month of November I will be writing a new blog post related to health and living with a chronic illness based on given prompts provided by WEGO Health.

Today’s prompt reads…

Just admit it: It’s taboo, write about something that people do but don’t like to talk about or won’t admit to doing.  Don’t worry we won’t tell anyone 😉

Okay, so I am going to divulge a big secret of mine.  I suffer from a condition called trichotillomania.  Trichotillomania is the compulsion urge to pull out one’s own hair.  I have suffered from this condition since my early teens, and is not something I admit to doing or have even discussed with anyone.  You see, ever since my early teens; when the dizziness started getting much more frequent and intense, and as a result it triggered an anxiety disorder.  At the same time, I was going through a hard time at school, where I was bullied and ostracised by my peers.  As someone who rarely talks about what is on their mind, or problems and instead bottles them up, I found comfort and relief from plucking hairs from my legs, arms or eyebrows.  At this time, I didn’t know what was happening; I was finding it so difficult to cope with both the dizziness, anxiety and depression that I was suffering, and I had no other coping mechanisms that I developed this compulsion to pull my own hair out.

imgres

My hair is very fine, so I couldn’t pull hair from my head as people would soon notice, so I began pulling hairs from my arms, legs and eyebrows.  It’s my shameful secret – I still do it sometimes now when I am struggling with my condition and during difficult times where I am finding it difficult to cope.

This condition is very common, usually amongst teenagers and young adults, and also more common in girls than boys.  However, it is often a taboo subject and not often talked about.  Perhaps as it often also causes guilt and shame amongst sufferers of trichotillomania.  I know that guilt is something that I feel after I have pulled hairs out for a period of time.

I hope that perhaps by sharing my secret and opening up about my compulsion to pull my hair out will help people who may be doing the same thing.  For support, you can try these websites that provide further information:

US – Trichotillomania Learning Centre: http://www.trich.org/

UK – Trichotillomania Support Online – http://www.trichotillomania.co.uk/index.html

Trichotillomania Support on Facebook – https://www.facebook.com/TrichotillomaniaSupport

Hospital appointments met with relief or trepidation?

Well, have finally received my appointment to see a neurological consultant – all set for August 20th!!  After a long 28 weeks the appointment has come through, and all set for another hospital appointment.

 

Screen Shot 2013-07-26 at 15.47.15
Hospital appointment finally!

 

It’s funny though isn’t it when symptoms associated with your chronic illness, such as pain, dizziness, headaches, and so on are getting worse; becoming so troublesome that there is nothing to do but to visit the doctor, and get the referral to see a consultant.  Meanwhile, the symptoms are still becoming worse, and you are hoping for that hospital appointment to come through because of the suffering; which by now is probably not only starting to affect your physical health but also your mental health, such as increased anxiety (for example, worrying about your symptoms) and depression

 

Then, that envelope finally drops on the door mat – for a second, there is a feeling of relief; a relief that the wait is almost over, and that you may finally get answers regarding the deterioration of symptoms.  However, that sense of relief is overtaken by one of dread, and anxiety.  Dread because of the unknown – you are unsure of what the appointment will entail, not knowing what the examination will entail.  Then there is the anxiety about what information will be gathered from the appointment and examination, and the final results.  What will the tests find?  Is it bad?  Will my condition get worse in time?  Those are some of the questions that you will inevitably ponder before a hospital appointment.

 

The sinking feeling in the stomach as that letter arrives with the hospital's logo!!
The sinking feeling in the stomach as that letter arrives with the hospital’s logo!!

 

 

Then there is all the preparation prior to the appointment, such as compiling a list of questions that you want to ask the consultant.  Completing a form with some pre-appointment questions that the consultant sent to fill out.  Filling out a journal regarding the symptoms such as frequency, length and so on.

But for now I just have to wait for that important date with some relief and a little trepidation…

 

 

Weekly Photo Challenge: Growth

Growth can be defined as an increase in some quantity over time.  The quantity can be physical (e.g. growth in height, growth in the amount of money possessed).  However it can also be abstract or metaphorical (e.g. a growth in one’s personality or psychological development.  And it is the former that has based the inspiration for this week’s photograph:

 

 

This was a picture taken at the recent ‘Life 4 Living’ Party and the subject of a recent post entitled ‘How Do You Solve a Problem Like…A High Ceiling’ .  As you may remember the party took place in a large hall with a high ceiling, which as you may recall is one of my main trigger for severe attacks of vertigo.

Before, my diagnosis my first instinct would have been much more leaned towards the flight part of the flight or fight response and would have left the room.  However on thus occasion and whether it is now due to the knowledge of why I was feeling the way I did and why, I managed to stay at the party for the entire 3 hours despite the vertigo and nausea!  That’s what I call growth!!

What does growth look like to you?

HAWMC Day 28: The First Time I…

Welcome everyone to another post of ‘My Brain Lesion and Me’.  For those readers just joining me, I am taking part in WEGO Health Activist Writer’s Month Challenge in which I am writing a brand new blog post everyday throughout April, based upon prompts given by WEGO Health.  Today’s prompt reads as follows:

The First Time I…Write a post about the first time you did something?  What is it?  What was it like?  What did you learn from it?

Well, on first thoughts I was going to write about the first time I went to University, but as I have already written about that during a previous post I decided against it.  Instead I have decided to change the challenge a little bit and write about the first time I ‘experienced’ a dizzy spell.

At the time of my very first dizzy spell, I was around the age of 8, and it must have been around November or December as I distinctly remember that during the time the dizziness first started the school was busy with preparations and rehearsals for the annual Christmas Play.

Anyway, the very first attack of the dizziness occurred whilst on a shopping trip at a local DIY store with my parents, looking for new wallpaper for the living room.  We were walking around the large, imposing store and out of the blue with no warning, I became incredibly dizzy, as if the room was spinning out of control around me, as if at any moment if I didn’t hold onto something quickly I would fall, and so I quickly grabbed and held on tight to my Mum’s hand to stop by body from collapsing.  Obviously at the time I was very young, and had no clue as to what was happening to me, so my first instinct was to panic, it felt as if all the air in the store had vanished, and I was unable to breathe, my mouth became very dry and felt as if I was no longer able to swallow.  My vision became disturbed – became blurry and was unable to focus on any visual clues around me, adding to the panic I was experiencing.

After what seemed like an eternity, we left the store, and being able to sit down in the car, felt like a huge relief, although the dizziness still continued for a while longer, but felt much safer sitting down, knowing that I wasn’t able to fall.

And that was the beginning of the dizziness, which gradually became worse, more frequent and intense until it became a constant in my life around a year ago, the dizziness with me 24/7.

Someone recently told me, it was important to get my story out there,  especially as the majority of what is written about dizziness and vertigo discusses it being very much a symptom amongst the elderly, and so is important to make it clear it is something that can occur at any age.  When it first started with me, with the exception of being sent for some blood tests, the dizziness was very much brushed under the carpet instead it being blamed upon psychological factors such as anxiety, instead of being referred to more specialised doctors for further testing.  Dizziness isn’t something that should be ignored, and whatever the age of the person complaining of the symptom it should be taking seriously and investigated until everything has been ruled out.   Believe me, it isn;t a nice symptom to live with, and can at times be totally debilitating.

Anyway, I hope you all enjoyed the post, and able to adequately describe the dizziness and what it was like when it happened.  Please feel free to leave any comments and thoughts, I also appreciate any comments made…