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Being your own GP! (When medicines aren’t being effective or condition is untreatable…)

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My condition has not improved; at times it feels as if it is steadily getting worse and so as my condition has been significantly bad recently, it has meant that I have spent a lot of time in bed and watching television.  I have particularly been enjoying spending time watching medical dramas – Saving Hope, Grey’s Anatomy, Emily Owens and M.D and notably Monday Mornings.

Although, I love these types of show, as a spoonie however, I do find them to be quite unrealistic.  In one episode of ‘Saving Hope’ for example, one doctor immediately diagnosed a brain tumour  (even before ordering an MRI!) in her patient after observing a symptom, although most common in this particular type of brain tumour but can also be indicative of other neurological conditions.  Although many spoonies, go through endless hospital appointments and tests before receiving a definitive diagnosis, patients depicted on such medical dramas such as Grey’s Anatomy are quickly diagnosed and  treated – if only the reality was that simple!!

 

 

 

 

But what if the condition is untreatable?  My condition is one such illness that is sadly untreatable.  Sure, I am prescribed several medications designed to control the symptoms that I experience; such as Gabapentin for the pain in my legs.  Other symptoms however, there are no such medications to even control them, for example, the trembling in my legs.  And although there are a lot of different medications to help control dizziness, unfortunately I have not found a successful tablet to control the dizziness or vertigo that I experience, especially since that one of the commonest side effects of many such medications is dizziness!

So, how should we cope with these untreatable conditions?  Surrender and give up? No.  We find ways that we can take control over our illness and its symptoms.  My good friend Marissa over at Abledis.com who writes about creating our own daily prescriptions as a way of taking back control over our conditions and more importantly to combat the depression that is very often a result of living with a chronic illness.

It’s a simple yet effective tool to increasing the quality of life that often diminishes when chronic illness takes hold on your life…and best of all there are no unwanted or horrible side effects!   It may also be a fun and unique way to not only make you take back control over life but also as a way of distracting yourself from the pain or other symptoms that medications does not seem to help.

 

Be your own GP! Prescribe some little treatments for yourself to raise spirits and distract you from symptoms
Be your own GP! Prescribe some little treatments for yourself to raise spirits and distract you from symptoms

 

 

So, what are some of the things that we can ‘prescribe’ ourselves to bring us comfort during relapses, or when we need to spend a lot of time in bed.  Here are some examples of the little things that I ‘prescribe’ myself when my condition becomes too unbearable to cope with:

  • Phone a friend – a good friend, someone who understands what I am going through and will offer sympathy and good advice.  Also important to choose somebody who is going to make you smile and laugh so you can take your mind off your problems if only for a little while
  • Watch a heart-warming or funny film – my top picks are ‘The Proposal’ starring Sandra Bullock and Ryan Reynolds; ‘The Blind Side’ another Sandra Bullock film and ‘Little Women’ starring Winona Ryder and Susan Sarandon
  • I always make sure to have Netflix also on standby as well as my iPad as thanks to new technologies I can stream films either from Netflix or even from my computer so means that I can still watch the films and TV programmes I love without having to leave my bed
  • Read an uplifting book; something light.  I would recommend ‘Chicken Soup for the Soul: Count your Blessings’ which contains over 100 stories of gratitude, fortitude and silver linings.  A perfect book to read when suffering a relapse as it makes you reevaluate your own life and appreciate the small things in life
  • A cuddle with a pet – my dog never fails at making me feel better
  • Practice meditation or other relaxation techniques – they really help you feel better and calmer
  • Listen to uplifting music
  • Keep a journal – a really cathartic way to release pent-up emotions
  • If you can sit outside and admire your garden or other surroundings
  • Pain your nails or give yourself a face pack – pamper yourself!

So, they don’t have to be big gestures or even something which is going to cost a lot of money.  Give it a go!

Any other things that you would like to prescribe yourself more time for?  What would you choose?  As ever would love to hear your thoughts and suggestions.  Comment below!

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A life changed through illness…

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According to the Oxford English Dictionary; the definition of change as a verb is “make or become different.”   As a noun, change is defined as “an act or process through which something become different.”  In other words it is a transformation from one state to another.

Being diagnosed and living with chronic illness can be perfectly described by the word ‘change’ as our whole world is transformed from one of normality to one which includes numerous doctors and hospital visits as well as daily treatments.  But transforming from being healthy to one with a long-term chronic illness is not the only change that occurs when illness takes ahold of the patient.  Relationships, hobbies, like and dislikes as well as daily routines are all impacted by chronic illness and can change as a result.  Personalities can change also, from someone who was outgoing, bubbly and happy can change to someone who is quiet, reserved, and has a low mood as a result of being diagnosed with a long-term health condition.  Once, a person loves nothing but a night out with friends, but often when a chronic illness sets in then a night-in wearing comfortable pyjamas and watching TV seems like the idyll.   Illness changes every part of a patient’s life.

But how has it changed my life?  This is a great question, especially the long-term condition which I live with started during infancy.  In this instance the changes have been more subtle; slowly progressing but changes nonetheless.  Before my condition started progressing and becoming worse, I had no problems with walking, sure, my legs started feeling stiff and uncomfortable but other than that I could walk fine.  Then, the condition progressed, making my balance worse as well as worsening pain and weakness in my legs.  And as a result mobility accessories was another change that presented itself in my life – first was my cane, then the crutch and now I rely on a wheelchair when I go out.

Relationships in my life has also changed, once I was a dutiful daughter, happy to complete chores to help out around the house, now however, I am increasingly reliant on my parents for help  – help cleaning around the house as well as my bedroom, help making meals and sometimes even simpler tasks such as making a sandwich, as well as helping me get to the bathroom when my legs are really bad.  Often it feels as if our relationship has changed from that of parent and daughter to that of carer and patient.  Friendship has been a constant change too in my life; often than not, friends don’t seem to stay very long in my life, whether or not they get bored with me saying no to day or nights out because of illness.  Or perhaps they feel resentment for the need to pick me whenever we make plans because of my inability to drive due to my condition.

A lot of the friends I have met through the blog and Twitter who are also battling chronic illness has also talked about the change in their lives but I like to think that although there are a lot of negative changes that illness inflicts upon our lives it also has many positives, such finding each other through illness and finding connections between our lives because of it.  Through illness it has helped us make very real, supportive and life-long friendships that will long remain.  But also, living with a life-long chronic condition can also make us more understanding,  and emphatic towards others.  Illness does not mean the end but can change us into more beautiful and understanding human beings.  Perhaps this can best be summed up by the proverb:

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This post is for the October edition of the Patients for a Moment Blog Carnival which is being curated by Life with RA is a Pain.

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Acceptance: It’s not about giving up but living life despite chronic illness

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In 1969, the Swiss American psychiatrist Elizabeth Kübler-Ross published her groundbreaking book called ‘On Death and Dying’.  In the book, she introduced the now famous ‘Five Stages of Grief’.  Her theory suggested that there are five stages of adjustment after a loss, which are:

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

The theory described the five stages of grief concerning the mourning of a loved one.  However, these five stages have also been used to describe many areas that involve a loss.

These five stages of grief can also apply to a diagnosis of a chronic illness or the onset of a progressive disability.  Mourning the loss of good health, the loss of a future that we may not have as a result of the diagnosis. And for the activities that we once enjoyed but which may be prevented by the symptoms of the chronic illness or disability.

[Tweet “The 5 Stages of Grief can be applicable when diagnosed with a chronic illness…”]

The 5 Stages of Grief
The 5 Stages of Grief

An example of these stages in action can be as follows:

Denial 

We immediately are in denial of the new situation and cannot accept that it is true.  Regarding chronic illness, we may question the doctor and ask whether he is confident that the diagnosis is correct.  A request may be made for further investigations as we cannot accept the diagnosis as fact.  We may also not be open to new medications or treatments suggested as that would mean the condition is real.

Anger

Like many others, anger is a normal feeling when living with chronic illness.  We are angry at the illness itself due to the severe symptoms that it causes; angry at the limitations it places upon our lives; doctors who made the diagnosis as well as those who didn’t believe you. We are often angry at people around us who are still able to do all the things that we are no longer able to do.  Anger is one of the five stages that those living with chronic illness reverts to, especially when symptoms are particularly severe.

[Tweet “Anger is a stage those living with chronic illness reverts to, especially when symptoms are severe.”]

Bargaining 

Although anger stays for a while, we eventually progress to the third stage which is bargaining.  Often, when living with a chronic illness, we become lost in a world of “What if” and “If Only” statements.  We want to return to the life we had before illness, so we attempt to bargain with our bodies.

We promise that we will take all our medications correctly, and keep to a healthy diet in exchange for the condition to disappear.  A promise is made to do anything in exchange for a cure and to be able to return to a normal life.

[Tweet “When living with a chronic illness we become lost in a world of “What If” and “If Only” statements.”]

Depression 

As times passes; we slowly realise that bargaining isn’t working.  As there is no sign of a cure or a return to our old life we begin to lose hope.  Often, we slide into a depression.  The depression isn’t a sign of a mental illness however but a response to the loss of our previous life.  We turn inward and withdraw from life, and get stuck in a fog of sadness, despair and hopelessness.

[Tweet “As there is no sign of a cure or a return to our old life we can slide into depression.”]

Acceptance 

The move into acceptance is a slow and gradual process.  To reiterate it is not a state of being perfectly fine with being chronically ill but is perhaps a state in which we have more good days than bad ones.

However, this is not a single process.  These five stages of grief are linear and one in which we often regress to previous steps.  The need to work through them all over again, especially at times when the condition gets worse.  As we worsen we return to the first stage of denial and we need to work through all the stages just like we did after the initial diagnosis.  As our health deteriorates, we are essentially mourning the loss of another piece of ourselves.

[Tweet “Acceptance is about finally recognising and acknowledging the permanence of chronic illness.”]

The importance of acceptance can be brilliantly summed up by a famous quote by Joseph Campbell:

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This post is about acceptance – to acknowledge the changes in our situation and declining health.  It is not about being completely fine or deliriously happy about the illness or disability.  Acceptance is about finally recognising and acknowledging the permanence and reality of life after diagnosis.

To learn to readjust to our new reality we need to embrace the life we have now.   Acceptance is not about giving up.

[Tweet “Acceptance is not about giving up but to learn to readjust to our new reality.”]

I thought about the ‘Five Stages of Grief’ recently after a day out with my carer.  As my regular readers may be aware, I have had to start using my wheelchair on a much more regular basis, especially when out for hours due to the worsening weakness in my legs.

Last week, my carer commented on how much more confident I seemed since I started using the wheelchair and how I seemed to enjoy days out much more.  A reason for this is because I am in the wheelchair, I am not always on edge that my legs will give way, or on the days when the weakness is severe, I am not waiting for my legs to collapse.

However, as I also live with constant dizziness and regular bouts of vertigo and as a result of the continual movement while in the wheelchair, it was challenging for me to use it.  So why do I seem so much more confident using the wheelchair than sitting down, and enjoying being out much more when it causes such symptoms?

accepting the need of a wheelchair when living with a chronic illness
Accepting the need for the wheelchair has made going out so much easier and more enjoyable

One possibility is that as suggested by the theory discussed, I have finally accepted that I need the wheelchair.  Perhaps, I have finally moved through these five stages and now accepted my new reality.  Before, I became worried not only about the wheelchair’s effect on my vestibular system but also with the judgements of other people.  That however no longer is a concern of mine and happy to be in the wheelchair.

Perhaps, it is much easier to live with a new situation when we have reached acceptance.  We need to embrace the new reality to live life to the fullest despite any limitations that chronic illness has placed upon our lives.

[Tweet “It is easier to live life despite the limitations of living with a chronic illness when we have reached acceptance.”]

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Keep Calm…and Stay Positive

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As most of you know, that due to the unknown cause of my neurological condition is starting to get me down.  It is frustrating and disheartening when the doctors are unable to give you the answers that you so desperately crave.  It is simple – being undiagnosed is dejecting and can causes psychological symptoms such as depression.  All we crave is a diagnosis – a name for the cause of all that we go through on a daily basis.  A name that confirms that we are not crazy or that the symptoms are all in our head.

Due to the weakness in my legs as well as the severe dizziness and fatigue that I experience due to my undiagnosed condition, I am often unable to get out of my bed and so confined to my bed for days at a time.  Staring at the same four walls of my bedroom; a place where I spend a lot of my time anyway is not a positive experience.  It is often a painful reminder of my predicament; a predicament that I am an undiagnosed chronically ill patient.  Being confined to my bed, leads to feeling of loneliness and isolation – how many times when experiencing severe symptoms have thought you were the only person to be going through this experience?  Is that a yes I hear?  Me too.

However, Voltaire once stated “I have chosen to be happy because it is good for my health”.  A truly inspirational quote, and one that is supported by research – there is a lot of evidence that suggests that being positive makes you feel less stressed; has a positive influence on your immune system and has a huge influence on your overall well-being.

But how can we still remain positive when living with a chronic illness, which has such a negative influence on all areas of our lives?

Well, for me I have started to assemble a ‘positivity board’.  A board with cards, postcards, or letters that are both positive and in turn makes me feel more positive and happy despite being bed-bound or dealing with unpleasant.

The board is no way finished but at the moment includes a couple of cards that I found in a local art gallery that includes positive quotes, for example “Life is not measured by the number of breaths we take; but the number of moments that take our breath away” and my personal favourite “Life is not about waiting for the storm to pass but learning to dance in the rain.”  Also, on my board is a gorgeous card that was sent to me by a dear friend which has some really lovely words both outside and inside the card which I shall treasure and which brightened my day when I received it – a time when I really needed it.

I also found a couple of butterfly clips which I found in a local shop which I bought just to brighten the board and because of my love of butterflies.

Try making a board for yourself and fill it with all the things that make you happy or makes you feel a little more positive despite whatever circumstances that you often find it hard to cope with, or one which has a negative impact on your life.

Stay Calm…and make a positivity board!

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If you come across any cards that has any positive quotes or perhaps with a lovely picture of a butterfly or sunflower or anything else positive, let me know in the comments section and help fill my positivity board!

 

Thanks everyone! xx

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Social Media and the chronic illness experience

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This post is for the ‘Patients for a Moment Blog Carnival’ hosted by Leslie at ‘Getting Closer to Myself‘.

This month’s theme is Social Media and illness, with which there are two parts!  The first part is to describe our illness using just 140 characters; just as if we were using Twitter to do so.  This could just be one statement characterising the illness experience, or a series of statements of 140 characters.

The second part of the challenge asks us to describe how social media has personally impacted our illness experience.

So, how can I describe my condition just using 140 characters?  Well, this could be extremely challenging giving the complexity and the unrecognised nature of my illness.  But here it goes…

Neurological condition affecting the brainstem. The effects include constant dizziness, vertigo and spastic paraparesis affecting the legs

The first part is self-explanatory, obviously the illness that I live with is a result of a neurological condition, known as a long-standing brain-stem lesion.  The lesion is scarring of the brainstem, possibly as a result of a head injury of birth, although as it was diagnosed years later, the exact cause of the lesion is unknown.  The effects that I listed are the main symptoms that I experience as a result of the neurological condition.  As the statement suggests this include the constant dizziness (feeling as if my world is unbalanced), vertigo (as if the world around me is spinning).  The spastic paraparesis is another symptoms that is troublesome to my daily life.  It affects primarily the legs as suggested by the above statement.  It causes stiffness and weakness of the legs which makes it uncomfortable and at times very difficult to walk.  Often due to the weakness, it can cause my legs to suddenly give way from under me.  Recently, I have been battling severe trembling in the legs, a jelly-like feeling in my legs, which above all is extremely uncomfortable and leaves me unable to stand for long.  Of course, there are other symptoms that I experience such as nausea, neuropathic pain and fatigue.

Are you able to describe your condition in 140 characters?  Give it a try!

 

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To the second part, then!  How has social media impacted my illness experience?  For starters, the impact upon my illness experience is mainly positive.  Social media, not only allows patients to connect with others and share their stories and experiences, it also allows patients to raise awareness of their particular chronic illness, and share with others what it is like to live with illness every day, and everything that goes with it, for example, I often tweet via Twitter on how I am feeling, and attempt to write how the symptoms affect me and what it is like to live with them.  Not only is social media fantastic and advocating and raising awareness of illness, but it is great to connect with others, particularly when we are experiencing a flare or relapse, and gain support from other patients in similar circumstances.  It provides camaraderie for those experiencing chronic illness, like myself.

Think about when you are ill in bed, it often involves being stuck in bed, alone whilst everyone else is busy living their lives.  Asa  result, it often leaves you feel lonely and isolated, right?  Think if illness was a regular part of your life; being stuck in bed, lonely in your bedroom with no company was a regular part of your routine.  That feeling of loneliness and isolation is also a regular part of your life, however Twitter and other forms of social media, provides patients with chronic illness a perfect tonic, as it allows to converse with other people even when in bed via new technologies such as smartphones and tablets.

It provides entertainment and diversion from illness.   Often, when I am bed bound due to the extreme weakness in my legs, or due to severe dizziness, I am very grateful for the supportive messages that I receive on Twitter from other chronically ill patients and friends; they really brighten the day, and also reminds me that I am not alone on the journey through illness.  Social media provides real-life perspectives on illness, and besides the entertainment and social aspects, perhaps the most valuable features of such sites is it’s a place free from judgement and stimatisation that many experience in the real-world, as well as educating others about particular medical conditions in order to tackle the problem of stigma .

 

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