I was reading an excellent article the other day, over at the wonderful blog ‘The Patient Patient‘.  In one post, Anya (who I have recently become good friends on Twitter) writes about what it means to be patient and being a patient,.  For example looking at the origins of the word patient.  It really is well worth reading; and all of you battling chronic illness will surely relate.

Over the past couple of days, this article has particularly resonated with me.  The word ‘patient‘ can be defined as ‘someone bearing provocation, annoyance, misfortune, delay, hardship , pain, etc, with fortitude and calm and without complaint, anger, or the like’.  As a noun, however, the definition changes as ‘someone who is under medical care or treatment’.   Therefore, the word itself ‘patient‘ can also be used as a form of our identity – as many of us, especially when considering chronic illness, we are often under the care of medical professionals and are often receiving medical care or treatment.   Even more interestingly, Anya also delves into the archaic meaning of the word ‘patient‘ – according to the dictionaries the origin of the word can be traced back to Middle French and latin with the word describing as ‘one who is suffering’ or ‘one who suffers’.

It is ironic, however, that the word ‘patient’ has these two different meanings – as many of us can testify too – patients (those undergoing medical treatment) do need a lot of patience!  Take my case, I was referred due to the deterioration of many of my symptoms back to the Neurology back in early February.  It has taken several weeks, however, to even receive a letter confirming that I am on the waiting list to see a neurological consultant.

On the letter, I noticed that some of the details about myself, were wrong so following instructions set out in the letter, I phoned the relevant department to inform them of the correct details.  This little job itself, meant that I was on hold for approximately 15 minutes before speaking to a real-life person.  This obviously required a lot of patience in itself!  Then after taking all of the correct information, the secretary informed me that the average waiting time to even see a consultant was around 26 weeks.  That is almost 6 and a half months! This is typical, especially with a specialty like Neurology – at my local hospital there are no neurologists on staff; which means that I have to travel further afield to be seen, or wait until they have a Neurology Outpatient Clinic at the local hospital (which is are in itself).   Even waiting for an appointment to see a doctor at my local GP Surgery can mean a wait of up to 2 weeks.

So, these anecdotes just goes to show that being a chronically ill patient needs a lot of patience – and to wait our turn to be seen by a consultant should be done without complaint – after all, making a fuss isn’t going to get us seen any faster, is it?  And as all of the media reports suggest the NHS is overstretched with all the demands of treating a vast range of unpredictable chronic illnesses.  However, I often myself go back and forward from being inpatient and wanting to see a consultant  as soon as possible, especially when symptoms are bad, to understanding how difficult the demands that are placed on the NHS are, and how I am sure many of the doctors and nurses, wish that they can see everyone as swiftly as possible.

So, instead of complaining, it looks like I will have to learn patience and wait until it is my turn to be seen…

Read Anya’s Post: ‘The Patient Patient: What’s in a name?‘

Follow Anya on Twitter: @anyadei

I was reading an interesting book regarding chronic illness, and through this some questions about chronic illness and identity occurred to me.

Obviously, living with a chronic illness does not define any of us – the illness is merely one piece of the puzzle that makes up our lives.  As well as being a patient with chronic illness, I have many other identities that make up my life – daughter, granddaughter, niece, cousin, friend, avid reader, blogger and so on.

However, can living with a chronic illness (and especially when living with a condition from childhood) influence a person’s identity?

For example, if I didn’t live with the spastic paraparesis which causes the stiffness, weakness and pains in my legs, would I still have an avid interest and love for reading and books, as well as a keen television and film watcher.  According to my parents, I was a book lover since I was a very young child, and perhaps the pain in my legs was a reason why I became such a lover of reading instead of taking an interest in sports.

For people, however, who develop a chronic illness later in life, it can threaten one’s identity, disrupting every aspect of their life, including hobbies and interests.  Sufferers of chronic illness may have to stop their beloved interests, for example, playing a favourite sport because of pain or fatigue.  As a result, it is said that the person may have to ‘reconstruct’ their self-image; for example, finding a new interest which the person can still gain great pleasure from, but not as a consequence to their health.

Lately, I have been struggling with the condition in which I live; I have been feeling even more tired than usual, the dizziness and vertigo have become even more intense and even the weakness, stiffness and pain in my legs have also worsened.  Because of this, my emotions have also been up and down – crying and feeling sad being a constant feature in my present.

Thankfully, I have found another interest, thanks to the new social group that I have been attending, I now added to my arts and crafts love – creating and making cards.  I have now made a couple – generally takes me longer to complete because my problems with manual dexterity.  However, I have grown to love making cards – its relaxing and allows a distraction from the pain and dizziness that I live with constantly.  I have even added a photograph of a card that I have made for my Mum for ‘Mother’s Day’ on March 10th!

So, for everyone reading this also battling chronic illness – do you think that the illness has moulded your identity – influencing your choice of hobbies and activities that you enjoy?  Has chronic illness made you change particular hobbies and activities because you are  no longer able to participate in them?  Would love to hear your thoughts….

I have been given a great honour by being awarded for a ‘Liebster Award’ by another fantastic blogger by the name of Sarah Levis, who herself hosts an amazing blog, which can be found at  ‘Girl with the Cane‘ (if you haven’t already been over the blog then it is a must read!).  Thank you so much Sarah for giving my blog its fist award.

This award is giving to up and coming bloggers who have less than 200 followers.  And ‘Liebster’ is a Germanic word which can mean sweetest, kindest, nicest, dearest, beloved, lovely, kind, pleasant, valued, cute, endearing and welcome.  Wow!!  A lot of meaning for one little word!

The award, also comes with the following rules:

1. You must thank the person who  gave you the award
2. You must display the Liebster heart on your blog
3. Each person must post 11 things about themselves 
4. Answer the questions that the person who has awarded you has set, plus create 11 questions for the people you have nominated
5. You should nominate 3-5 up-and-coming blogs with less than 200 followers
6. Notify your nominees and provide a link back to your post
7. You’re not supposed to do “ping-backs”

OK, so ready, set, here are 11 facts that you may or may not know about me:

1. I was born in a British Military Hospital in Germany
2. I am an only child
3. I have a 2:1 BSc degree in Psychology
4. My favourite ever book is Little Women
5. My favourite thing is to watch films in my pyjamas wrapped up with a blanket
6. I love hot chocolate with cream and marshmallows
7. I have read every Jodi Picoult novel
8. I have a huge phobia of heights
9. I love forensic crime shows, particularly CSI and Bones
10. My parents call me an ‘Oracle’ as I know a lot of useful facts
11. I have a huge crush on Simon Baker (but then who doesn’t?)

And I have now narrowed down the list, and have decided to give the following blogs a ‘Liebster’ Award!  Congratulations!!  You are all amazing:

• Dystonia Muse 
• Unseen Magazine Blog 
• Sick Girl Diary
• I Just Go Where my Brain Takes Me
• Being Chronically Thankful 

Please visit all of these fantastic blogs! I have learned so much and continue to be inspired by them.

And now to answer the questions that Sarah has left for me!:

1. Why did you decide to start blogging?  I wanted an outlet for my frustration that the symptoms caused by my condition affects me, but more than that I also wanted to educate and raise awareness of neurological conditions as well as invisible illnesses in general
2. Are you a morning person or a night owl?  I am definitely a morning person – because of my condition, I become very tired in the evening, often causing me to be in my pyjamas by 7 pm!
3. If you could only eat one food for the rest of your life, what would it be?  I would definitely choose to eat lasagna – I not only love eating it, but also love preparing it!!  In fact, I love all Italian food
4. What’s you all-time favourite movie?  Now, that I have finally watched it, I would definitely say ‘Les Miserables’ – an amazing movie!
5. What was your first concert?  I believe my first concert was when I was around the age of 12 and went to see a UK boyband by the name of Boyzone
6. Have you spent all day in your pyjamas (as an adult)?  As a sufferer of chronic illness – and being unwell a lot, the answer is most definitely YES!
7. What was your first pet’s name?  Where did that name come from?  My first pet was a hamster who we called ‘Peanuts’ and choose the name based on its colouring
8. What’s your favourite board game?  Trivial Pursuit – as I usually win!!
9. Do you know how to ballroom dance?  Absolutely not – I have no rhythm or coordination and would fall down a lot!!
10. Can you play an instrument?  If so, which one?  No, I cannot play any instruments but would love to learn to play the guitar
11. What’s your dream job?  It used to be my dream to be a clinical psychologist, and like to think that’s what I would be doing if it weren’t for my illness

And now everyone here are the questions for those who I have nominated:

1. When did you first start your blog?  What were the reasons for doing so? 
2. If you were an animal, what animal would you be?
3. If you were stuck on a desert island, which 3 books would you choose to take with you?
4. If you were stuck in a lift (elevator), which 3 people would you most like to be stuck with?
5. Where is your dream destination?
6. Favourite ice-cream flavour?
7. What is your favourite room in your home?
8. Would you prefer to spend the night in your favourite ‘going-out’ gear or in your pyjamas?
9. If there was one object that could represent you; which object would you choose?
10. What is your favourite movie?
11. What would be the one thing that would be at the top of your ‘bucket list’?