Category

Chronic Illness

Category

 

398362_10150737757134254_214524621_n

 

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt is as follows:

What’s a day that you wish you could have used a pain-free pass (either in the future or the past)?  How would being pain or worry-free impact that day? 

It is ironic that I should be writing this post on a day when the pain I experience is bad.  Oh, how I wish that I could use a ‘pain-free’ pass for today, although perhaps I would prefer to save the pass for another time; perhaps a time in which a pain-free time would be beneficial.  The group I attend ‘Life 4 Living’ encourages us to write a bucket list – all those little things that we would love to achieve before we die.  Recently, we have had a couple of deaths within the group; which has reminded us how short and previous life can be, and as a result I would love to use a pain-free pass to be able to complete something from my own personal bucket list…

Recently, as some of you may remember from a recent post entitled ‘To Go or Not to Go‘ my parents and I are looking into possibly going on a cruise next year.  It has been my dream to visit Italy for sometime, but because of my health, certain ways of travelling are unsuitable for me, such as flying or travelling by bus for example.  Therefore, going on a cruise is the last option for me to achieve my dream of visiting Italy.

One advantage for sufferers of chronic illness of going on a cruise, which you are unable to get with other holidays, for example, is the times that you become unwell or pain becomes unbearable is that you can go straight back to your cabin with very little hassle.

However, if I were to use a pain-free pass, it would be on day when the cruise ship is docked in Italy itself, especially in Rome and Florence.  Why?  If I were pain-free I would go exploring and go sight-seeing within these beautiful cities without any pain and also the worry that pain will suddenly appear, spoiling the enjoyment of the day and making precious and exciting memories.   I could go and visit the Sistine Chapel; the Colosseum and the Trevi Fountain as well all the other beautiful scenery and architecture within the beautiful city of Rome.  Of course, a day out to a new city is complete with some retail therapy!  And the chance to soak up a different culture; to experience authentic Italian food and ice-cream – and all for myself instead of hearing about others’ experiences of travelling or reading about it in books or seeing the sights on television.  What a dream it would be!

How amazing would that be?  A pain-free day; and a day free of any worries!  A day in which I could spend it exactly how I wanted without the worries that chronic illness often presents in our lives.  A chance to enjoy just a special day with family during a once-in-a-lifetime holiday without my condition getting in the way or spoiling it as often happens during my daily life.  Now, we have to try and make it happen!  Fingers crossed….

What would your ‘pain-free’ pass day look like?  Share your thoughts below and comment!  Always love to hear from readers…

 

306044_10150737756559254_36556179253_11203242_235761715_n

 

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Share something you learned from another Health Activist (that everyone should know!) 

For this particular prompt; I didn’t just want to single out just one health activist because I have learnt so much from every health activist and blogger whom I have had the pleasure to come into contact with either through the blog itself or my Twitter account.  Each of these amazing writers’ and health activists have so much knowledge to share to everyone.  Obviously, the main advantage is that through reading others’ blogs, I have not just learnt their personal stories and whom they are as people, but have also gained a breadth of knowledge on a variety of different conditions.

However, by doing this and particularly after taking part in the ’12-12-12 Project’ over at Abledis.com and reading all the amazing stories of all the fantastic, and inspiring stories, it dawned on me how similar the experiences are for everyone who are chronically ill.  Regardless of the diagnosis; there are common themes that seem to be universal for everyone battling chronic illness; examples of these include:

  • Loneliness 
  • Fatigue
  • Pain
  • Sadness/depression
  • Frustration
  • Lack of understanding from GP’s
  • The same old responses by others’ such as “But you don’t look sick!”

7f2e09d6e2d88bb00d1ed03ab3ecf0c6

 

Before starting on this blogging journey, I often felt lonely, isolated and down regarding my diagnosis and not finding anyone else with the same diagnosis.  However, this is  not the case anymore, as I found a large number of new friends; all with different conditions or disabilities.  Despite that, however, I have found we still have so much in common regardless of our diagnoses, and the support and camaraderie have been amazing and have gotten me through all the bad days; and the times where I have been low.  Christine Miserandino and the ‘Spoon Theory‘ is an excellent example, how a simple analogy can be used to describe the experiences of chronic illness for many – regardless of people’s diagnoses, the ‘Spoon Theory’ is one which everyone living with chronic illness can relate to.

So, if I was to share any advice to others who may have been recently diagnosed and are feeling low, and perhaps are lonely and isolated, then I would tell them don’t be – there are plenty of support online, on Facebook, or Twitter that can help regardless of gender, location, race, nationality or even diagnosis!  Seek out all ‘spoonies’ and gain support from some amazing and caring individuals!

 

295224_10150737756374254_36556179253_11203240_683573239_n

 

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists. Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Create a Pinterest board for your health focus.  Pin 3 things.  Share the image

 

427783_10150737756069254_36556179253_11203238_300090828_n

 

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

“I wish this gizmo could track my condition!”  Write about which device, application, program, etc, you wish helped to track your health 

I have an iPhone, and there are an overwhelmingly large number of applications available for the phone; many of them health related.  There are applications to remind you to take medications; to track fitness and nutrition, as well as keeping a record of symptoms and possible triggers.  There are also diaries and journals that you can download to the phone in order to take detailed notes of what is happening to one’s health.  For example, on my iPhone I have the following applications to help not only track my health but also keeps me entertained through illness itself:

  • Facebook, Twitter, Pinterest, YouTube and Instagram – love these as it keeps my spirits up; entertains me as well as allowing me to keep in contact with all of my friends and be up-to-date with all the latest goings on. 
  • WordPress – this is to keep up with my blog
  • Symple – this is a fantastic tool in order to track symptoms associated with your condition as well as all the factors that affect them.  If one has started a new medication then it really is a great tool in order to see whether it has been effective in managing pain, for instance. Find out more about the application by visiting their website
  • Games such as 4 Pics 1 Word, The Chase, etc – purely for entertainment value and excellent at keeping my mind off my pain and keeps me occupied whilst at appointments

 

images

 

However, if I were to invent an application that could track my health condition; what features would it include?  For starters, I would love a way to track the number of falls that I experience.  During doctors’ and hospital appointments, I am always being asked how many times I have experienced falls in a given period, however, the truth is the number is so great that I lose count!  Therefore, an app which record the times I fall would be extremely useful; even more so if it could be done with one press of a button.

I would also find use of an app, that could send an alert to someone whenever one occurs.  This could be useful as a way of recording times when falls occur but also will be useful for getting help when a fall does occur, especially as I am often unable to get back up by myself.  It may also be useful in gaining a little independence when out and about with my parents, or carer – I could go and have a look at what I wanted to by myself without needing someone constantly with me, but then if a fall did occur, they would be alerted and come and assist me when necessary.

Because of the recent attacks, I have been experiencing of complete vision loss, the doctors advised to keep a diary of when such attacks occur and to record the time that the attacks last for.  However as my vision completely goes, I am unable to see the time, and therefore cannot record how long the attacks last for.  I searched and searched for an app that could assist be in doing so without needing my vision; perhaps through voice assisted technology, however I was unable to do so. So, an application which could do just that for me, would really help in keeping track of this particular troublesome symptom.  Even recording the times within the app, would also be useful, so I could instantly share it with doctors’ or consultants.

But most of all, the most helpful apps would have the option to be able to send all the data that has been collected could be sent to your doctor or hospital consultants and could then be added to your records.  This would make it much easier than, for example, keeping a written record and then remembering to take them to appointments.  Wouldn’t it be easier to be able to send data to our doctors between appointments so we can keep them up to date on our progress?  Especially if new medications have been introduced to our treatment regimen.  If doctors could keep-up-to-date by seeing data such as these between our appointments, and became concerned over deterioration in symptoms perhaps then they would be able to invite us for an appointment before a flare or relapse in our conditions occur.  Wouldn’t that make it easier for both doctors and patients alike?

If you could invent an application to assist you in your daily struggles with chronic illness what features would you like to see?  Share your thoughts and comment below!

 

306201_10150737754389254_1241404170_n

 

Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism 

 

I am not sure whether it fuels my activism but sometimes inspiration comes from the smallest of tasks.  In our house, I am the designated dishwasher!  Of course, at times I am unable to complete the task because of illness, but most of the time I wash the dishes after breakfast, lunch and dinner.  Often people, think of washing dishes they find it a chores; a mundane task that needs to be done.

 

images-2

 

However, I find it very relaxing, and when I am doing the dishes I find that it allows me to listen to my music, and think freely as I feel the warm water through my hands as I wash all the dishes.  It allows me to look outside the window to our garden and look at the beautiful flowers that bloom there.  Often, thoughts pop into my head as I stand there; I remember little details that I have forgotten about or interesting topics that I might discuss on the blog.

I can dream freely whilst standing at the sink; dreaming of a life without illness or all the little things that I want to achieve despite it.

Many see washing the dishes is a chore; however I see it more of a chance of relaxation; a chance at being inspired as well as allowing us to dream about all the possibilities that life has to offer!

Pin It