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Chronic Illness and Identity

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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?

 

My Identities!
My Identities!

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!

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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….

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Living with illness…is like using a revolving door…

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revolving-door

Hello to all readers new and old

Sorry that I have not been able to write a post sooner but life has been pretty hectic!  Lately, fatigue has been a constant feature in my life, so much so, that the hours that I have with my personal assistant has been extended over two days instead of using all the designated hours in the one day.  Added to that, is a new group that I have recently joined as well possibly being involved with setting up a brand new group for young people with disabilities in my local area.

And then of course, has been my health.  As most of you reading this, also living with chronic illness, will know, that life can be like a revolving door – symptoms can be stable and manageable and then out of the blue, there is a deterioration of said symptoms and then find yourself navigating said revolving doors through to yet more doctors visits, hospital visits, more tests and so on.  New symptoms appear, an example being the recent introduction of vision loss can be worrisome and can also question whether doctors have given the correct diagnosis, or whether it is possible that your condition is deteriorating.  New symptoms are like being handed pieces of an uncompleted jigsaw puzzle and then having to cipher where these pieces fit in the bigger picture of your condition.

And after the initial consultation with your G.P can often, particularly if the new symptoms are unusual or worrisome, result in (again!) being referred to the specialty that is connected with the particular health condition.  For me, not only have I referred back to Neurology, but am also awaiting for an appointment to seen an ophthalmologist.  Waiting for hospital appointments, not only can be long and tiresome, but also leaves you on tenterhooks; especially when the mail arrives each day, wondering whether today is the day in which that all important appointment letter will arrive!

 

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That only then leaves the preparation for the actual appointment!  If I can offer any advice to any ‘spoonies’ out there, it would be this:

  • Make sure that you prepare for the appointment beforehand – if like, me you often find yourself remembering various information that you wished to discuss with your doctor AFTER the actual appointment, then it can be a really good idea to write a list of questions and points that you wish to discuss before your appointment.
  • You might wish to write down all the symptoms that you have experienced, I know from personal experience that I often forget to mention some of the symptoms that I have been experiencing
  • It can be quite unnerving attending hospitals; the often produce anxiety and fear, and often will forget some of the information that the doctor has given you, so it may be a good idea to ask a friend or family member to attend the appointment
  • Take a book, or something else to distract yourself from the anxiety, or even just to occupy the long wait in the waiting room

Any other tips that anyone has regarding attending hospital appointments?  Comment below and share them!!

 

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I’ve Been Given a Liebster Award!

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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:

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’?
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Where there’s a will; there’s a way….

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In my last post, I wrote about my disappointment at not being able to stay at the local multiplex cinema to see Les Misèrables – a film that has been on my ‘must-see’ list since I heard about the film.

However, I have now actually seen it!!  Although it meant that my Personal Assistant and I had to travel further afield to a cinema that is not as big and imposing as the cinema that is nearby.

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And it has made me realise that although our lives is plagued with problems as a result with chronic illness – and often we feel that it leaves us unable to do things that we once enjoyed.  However, maybe the last statement is not true – maybe the way we used to do something is something we are unable to do; but there may be another way that we can still participate in the particular activity.  We just need to find a different path to be able to enjoy our chosen activity.

Not that the cinema was without problems for me – all of the stimuli from objects flying towards the screen, the loud audio and high ceilings left me feeling very dizzy, and often had experiences of vertigo and vision lost throughout the film; but even so I thoroughly enjoyed the film and found a real sense of accomplishment that I managed to overcome all the unpleasant symptoms and stay to watch the entire film.  I could not recommend the film enough – the beautiful songs and the incredible performances of all the cast (and in my opinion, even include Russell Crowe in this) carries the audience through a number of emotions throughout the film – and yes, I cried several times through the film.

That old adage is indeed correct – “where there’s a will; there’s a way!”

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Learning to Live with Disappointment with Chronic Illness

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Disappointment is often something that you live with when living with any chronic illness – due to fluctuating symptoms and flare ups we often have to miss special occasions or cancel plans with friends or family.  And followed by cancelling of plans, comes the inevitable pangs of disappointment of missing out on such occasions.  This disappointment is even more amplified when friends talk about how wonderful the night was; making you feel even more miserable that you missed out (again!).

I felt this pang of disappointment recently – one of my goals for the beginning of the year was to visit the cinema as I really want to see the film version of Les Misèrables.  However, when I attempted the trip to our local multiplex cinema, I was so overcome with the dizziness and vertigo that I was just unable to stay in the building.  Of course, I felt extremely disappointed – in myself and my broken brain; stopping me from enjoying something as ‘normal’ as visiting the cinema.  I all honestly, the experience made me feel like a failure – failure as I failed to achieve a goal that I so desperately wanted to accomplish.  Hopefully, this is a setback and one day I will be able to go into that cinema, and even be able to stay long enough to watch the film.

So how should we ‘spoonies’ cope with these inevitable disappointments when we are unable to attend events or accomplish goals we wanted to achieve?

Well,we fist need to acknowledge the disappointment and anger that we may feel towards the illness that often feels as having robbed our lives. Then after acknowledging the anger we then have to deal with it.  This could be going to counselling or attending a support group associated with your particular condition.

Educate yourself, of your condition – there is no such thing as an overeducated patient.  Read as much literature as you can; and learn how the disease or illness can affect the body.  This can make it easier to perhaps plan for such times when we are invited out somewhere or planning trips somewhere, and perhaps being able to come up with a ‘plan of attack’ – a plan for dealing with such problems that can arise as a result of the particular health condition.

Perhaps, the biggest lesson that I have learnt is that we are all more than our condition.  We, of course, need to acknowledge the existence of said disease or illness, however it does not need to be self-defining.  Although there may be certain activities or have certain limitations, there are still however, plenty of things that we ARE still able to do.

It is often important when dealing with disappointment after not achieving goals, it still to keep a positive attitude as research has shown that being positive despite illness makes it much more easier to cope with.  Be grateful for everything that you do have rather than focusing on everything we haven’t or focusing on pain or our negative situations.  Perhaps keep a gratitude journal and list all the things that we have been grateful for on that day.

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How do you deal with disappointment?  And more importantly how do you cope with the disappointment?

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