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Spreading my wings…

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As most of my regular already know, I love to write and although this very blog gives me an excellent opportunity to do so, I often wish that I could have an opportunity to write for a wider audience.

So, I am very pleased that this week, I have been published in two excellent publications.

Firstly, several weeks ago, I received an email from a journalist from PharmaTimes magazine, which is a very well-respected healthcare and pharmaceutical publication.  The magazine offers independent, authoritative and trustworthy content on key issues and topics that are of relevance for those working in the healthcare and pharmaceutical industry.  As part of the development of the magazine, they have began to interview one patient per month regarding their own views and issues that affect them as they navigate the healthcare system from the ‘other side.’  The email therefore was to ask me if I would be interested in taking part in an interview giving my own personal views on the healthcare and pharmaceutical industry.

I agreed as not only was it a great opportunity to discuss my views on a subject that affects much of my life as one piece of my identity – a patient.  It however was also an opportunity to help professionals gain an insight into the patient perspective and represent the patient population by doing so, especially as a patient living with a rare neurological condition.

The Patient File

In addition, I have again been published in yet another edition of the wonderful ‘The Pillow Fort’ Magazine.  For new readers, The Pillow Fort Magazine is an e-magazine for and written by young(ish) people affected by chronic illness.  Each issue has a different theme, and this particular issue was based around “Self-Care”.  This edition features many informative, interesting and relevant articles based around the concept of self-care from an ‘A to Z of Self-Care’, through to exercise for well-being and even delicious recipes for ‘self-care’ cocktails.

As a result I wrote an article based around self-care and holidays and how we can still take care ourselves even when away from our regular routines and everything that provides us with comfort.  This article was inspired by my recent cruise and how I participated in self-care when I felt at my worst and stuck on a moving ship.

 

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To check out this wonderfully positive and inspiring magazine and/or purchase this particular issue (or previous editions) then please do so by clicking my affiliated link below:

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In Chronic Illness

Chronic Illness and Working

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Welcome to the fourteenth 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 prompt reads:

First Day on the Job: Working with a chronic illness can be a difficult balance.  What should you divulge, what should you hold back, and how do you balance it all?  Do you have advice for others?

 

Well, as most of my readers may know, I am unable to work with the current severity of symptoms.  The dizziness, trembling and pain in my legs, visual disturbances and the other plethora of symptoms that make their presence known on any given day is so bad that even keeping up with simple chores around the house is extremely difficult nevermind trying to hold down a job on top of it all. Obviously, the Department of Work and Pensions seem to also think that due to my condition that I am unable to work as I was placed in the Support Group category of the Employment and Support Allowance benefit.  At other times, I am stuck in bed, unable to leave it because of the overwhelming dizziness and weakness throughout my entire body, and especially my legs.  Also, making it difficult for me being enable to work is the fact that because of my condition I am unable to get out of the house without being unaccompanied by someone else; because of the severity of the dizziness and vertigo, as well as the bouts of vision loss that I have been experiencing.

Although I am not at fault that I am unable to work, it does not stop the guilt or shame that I feel for not being able to work.  After all, I went to University in the hopes of gaining a degree enabling me to gain a good job in the area that I wanted to eventually work in.  I am constantly wish that my body would fix itself and give me the chance to work.  I really feel for other chronically ill patients who have no other choice but to fight through their debilitating symptoms and continue working, and it must be such a dilemma for them whether or not to divulge information regarding their chronic health condition to their employer, especially due to the recession.  However, for  patients who need to work it is important to note that it is unlawful for anyone to be sacked, made redundant, forced into early retirement or passed over for a job or promotion because of an illness or disability.

According to the NHS Choices website there are a number of benefits of informing employers of a chronic health condition including:

  • Making it easier to get time off work for check-ups and treatment during office hours
  • Employers has a duty of responsibility to take reasonable steps for you to help you do your job
  • Employers and co-workers will know what to do if you have a medical emergency
  • You may even be eligible for more sick days than usual

However, how realistic is it for employers to make such allowances for employees with chronic health conditions when the recession is hitting everywhere hard and money is still very tight.  Unfortunately, the decision for whether or not to divulge a chronic health condition is not clear-cut and there are a lot of things to consider, but the final decision must be made by the patient themselves.

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In Chronic Illness

The Evolution of a Patient

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Welcome to the thirteenth day of the National Health Blog Post Month Challenge.  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:

Evolution: Write about how being a patient or caregiver has changed you.  How have your goals changed?  Have your values changed?

Patience; as a patient I have developed far more patience than I had before being a chronically ill patient.  In my opinion, patience is definitely a quality you need when becoming patient, especially when waiting often weeks or even months for hospital appointments, and for test results, and everything else that being a patient entails.  Although it is extremely frustrating having to wait so long for appointments and test results, I also think that having contact with other patients whether it is in real-life or via social media, can make this easier to bare as it makes you realise that you are not alone and able to support one another on the journey through being a chronically ill patient.

In addition, being a patient has also changed me in regards to knowing when to listen to my body.  Often, my chronic illness leaves my body very fatigued, and when this occurs  I know that I need a nap.  The consequences of not listening to my body can result in overwhelming weakness throughout my entire body as well as severe dizziness and vertigo, which can then result in being bed bound for a length of time.

Before being a chronically ill patient, I perhaps held too much faith in doctors; often seeing them through rose-tinted glasses and thinking that they are able to fix all the ailments that are presented to them.  However, after being a chronically ill patient myself, I have sadly had first hand experience in learning that often doctors are not able to cure every ailment and illness; I had to learn to accept that endless consultants were unable to cure or even help me.  I had to evolve as a person with a long-term health condition, and instead of relying on doctors to help me with my condition, I had to learn to rely on myself and learned to adapt and introduce my own coping strategies to help me cope with my health condition and new situation.  For example, recently I have learnt that mints really help with reducing the nausea that I experience and therefore as a result I know to always ensure that I have a pack in my bad when I go out.  In addition, as the dizziness has been particularly bad recently, I have learnt that wearing a hat with a brim helps somewhat as it blocks out the visual stimuli that I find bothersome and can precipitate an attack of vertigo or worsen the dizziness that I already have.

In terms of goals, they have changed considerably since my diagnosis in 2010.  I had thankfully, already achieved a major goal of mine in completing my University education and gaining a degree in Psychology.  However, other goals such as travelling, moving out of home and getting my first job had to be put on hold whilst my illness was bad and we were still searching for a diagnosis.  Now, that we have that diagnosis, and especially since last week’s hospital appointment which all but confirmed the dizziness as being neurological and being a lack of treatment or cure; as well as my current state of health then I am not sure whether I will achieve any of those goals that I so dreamed of years ago.   Perhaps I will given in time, although the goal posts may have to change slightly.  For example, I always had dreams of travelling to Italy, with friends, and although this dream is set to come true next year when I go on my cruise, I am not attending with friends but instead with parents as with my condition I will need looking after if and when flares occur during the holiday.

I am sure that my values have changed also; living with a chronic illness, you realise what really is important in life, and all those little mundane things that once seemed really important, don’t seem to all that important anymore.  I would like to think living with a long-term health condition and disability has made me more caring towards others and as a result am less judgemental and more tolerant towards others.

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NHBPM Day Twenty-Eight: The Ever Changing Goal Posts…

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Welcome to the penultimate post of this November’s month-long challenge, thanks to WEGO Health’s ‘National Health Blog Post Month’.  Today, I have used a prompt from a few days ago instead of one of the prompt’s set out for today’s date.  The prompt asks us how have our goals as a patient/advocate evolved?

In my opinion this is a great question, and I believe that often these goals change when a definitive diagnosis is finally given – especially when we are talking about a diagnosis of a chronic illness.  Before, a diagnosis is given of a particular chronic illness there is often hope – hope of a diagnosis, hope of a miracle treatment and eventual cure, and then going back to enjoying life and achieving all those goals set out before illness reared its ugly head.  Dreams of travelling, going to University for a career of your choice, eventually leaving home and getting a place of your own, and so on.

However, then the diagnosis is finally given – and then you find yourself with this chronic illness – one in which there is no treatment, or even cure.  An illness, which is embedded so deep within the body, that it is never going away.  Then the goals will inevitably change – some may have to be scrapped entirely, others the goals posts may have to shift slightly to be able to achieve the dream.

This is what happened in my life.  I once had lots of goals – some I thankfully, have managed to achieve such as finishing University.  Others, however I have not such as gaining a job and starting on the career ladder.  After University, when all of those pressures that were on me all stopped, the deterioration in my health started to show itself – the dizziness became more severe, lasted longer and so on.  By then, I was hoping to be able to start with some driving lessons, so I would be able to get myself a car, and then find that dream job that I had been wanting.  With the severity of the dizziness, however, this was just  not possible.

And so the goals shifted.  From wanting to achieve a start to a career and using the degree which I worked hard for, this changed to getting through each and every doctor and hospital appointment; with every test and procedure I wanted to get myself closer to that diagnosis, treatment and cure.

Then came the eventual diagnosis eventually came in July 2010 – a long-standing brain stem lesion and spastic paraparesis.  Finding out that there was little they could for me other than trying various medications to keep the symptoms under control.  No real treatment, and definitely no cure.  Inevitably, my goals had to shift dramatically, especially when the symptoms deteriorated further, and when my legs began to give way after standing for shorter periods of time. They went from being to find an eventual treatment and cure to just getting through each and every day; to search for the most suited medications for myself so I can live as near as normal life as possible.

And so there are my goals for today – just to get through each day as best as I can; to live a happy and as normal life as best I can; to make the group that I am secretary of the best it can be.  Sure, I have other goals such as wanting to visit Italy, to meet my favourite author, but these goals might have to be on the back burner at least for now….

As always, would love to hear your thoughts and views, or messages of any kind!  Are you a patient?  Have your goals changed, and if so, how?

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