Top 3 Tuesdays: Fellow Spoonies, tell me…

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Welcome to the twenty-sixth 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:

Top 3 Tuesdays: List three questions you have for other patients.

As I have yet to meet another patient with the same condition as myself, I have decided to ask questions that could be answered by any patient with any chronic illness.  This prompt could provide excellent dialogue between myself and readers of the blog, so please comment if you have any answers to the questions that I will ask during the course of this blog post.

How do you make being bed-ridden more fun?
How do you make being bed-ridden more fun?

How do you make spending time in bed fun?

As I am writing this post; I am doing it from my bed.  Today, my legs have decided not to work and so I am forced to being stuck in bed; unable to walk or even stand.   I hate being stuck in bed; I find it dull and tiresome as there is only so much one can do from bed.  I am fortunate to have my own television set in my bedroom, which thanks to my parents has access to satellite television, as well as my iPad in which I can watch films from my own collection or through those shown on Sky or through Netflix.  However there is only so much reading and watching television a girl can do before becoming bored.  Therefore, one question that I wish to ask other patients is: How do you make spending time in your sick-bed fun and tolerable?

How you stay calm before attending hospital appointments?
How you stay calm before attending hospital appointments?

How do you cope with hospital appointments and make attending more bearable?

I know that no patient likes attending hospital appointments, but no matter how much I try, I am always so nervous before leaving the house to travel to the hospital.  When that letter first lands on my doorstop; the nerves begin it kick in, and the appointment is the only thing that is on my mind until the appointment day arrives.  The night before, I feel sick and anxious, with thoughts running through my mind about what will happen at the appointment; what the doctor might say and generally imaging all the worst case scenarios.  As a result my next question for other patients would be: How do you cope with endless hospital appointments? How do you relax before an appointment?  Are there any routines you have to make the day fun and tolerable?

How to keep calm and carry on with chronic illness...
How to keep calm and carry on with chronic illness…

How do you cope with living with a long-term health condition?

My my final question for patients with chronic illness, like myself would be related to how the cope when the illness becomes too much to handle.  Lately, the dizziness that I constantly live with anyway, has become even more severe.  In addition the pain, fatigue and weakness in my legs has also worsened.  As a result of struggling with this, the depression that often accompanies chronic illness has reappeared and I have been struggling to cope in dealing with everything.  So, my final question, would be: How do you continue to cope when your illness becomes too much to handle? How do you distract yourself from the pain, depression and other symptoms you experience?

There are my three questions for other chronically ill patients.  Do you have any other examples of questions to ask to other patients?  As ever would love to hear your thoughts, comments and suggestions! And don’t forget to comment below if you have any answers to the above questions.  Thank you xxx

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My Essentials for a Hospital Appointment…

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Welcome to the seventh 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 upon given prompts provided by WEGO Health.

Today’s prompt reads:

Mary Poppins Carpet Bag: Write about what’s in your bag/purse/backpack every day and why!

This prompts come on a day where I have a hospital appointment – this afternoon I have a specialist appointment with a consultant in Audiovestibular Medicine.  So, given today’s prompt I decided to change it slightly and instead write about everything that I have in my bag when I attend various hospital appointments.  I don’t know about you, but I tend to get anxious and jittery attending hospital appointments, even after so many visits!  So I like to have plenty in my bag to keep me occupied and distracted when waiting to see the doctor.  Sitting in a hospital waiting room is in itself a waiting game.  So here is the run down on what I keep in my bag for appointment days:

  • The appointment letter: Very important to take this as obviously it contains all the vital information regarding the appointment such as the location, time and the doctor you are seeing.  More often than not the receptionist checks the letter for your information so is important to take the appointment letter with you to the hospital
  • Other Medical Information: At appointments they always ask you for certain information such as the frequency of the symptoms; medications you are taking; questions about medical history so I would advise to keep a notebook with all of this information written down in it, to take with you to such appointments
  • Puzzle Books: I have a couple of puzzle books, with Sudoku puzzles and crossword puzzles in them.  I usually get these out of my comfort box when I am stuck in bed as they help distract me from the pain and dizziness as well as help pass the time away, so often will take a book or two to complete whilst I am waiting.
  • Mobile Phone and iPad: Obviously, I am not able to make or receive calls whilst at the hospital but the phone itself becomes an entertainment centre, with everything I need to occupy me during the often long wait to been seen by the consultant.  With the phone I am able to check Facebook and Twitter, exchange messages with friends to help me through the anxiety, and also play different games to distract me from the dizziness.  The iPad enables me to listen to music or even watch a favourite film or television programme to make waiting much more enjoyable!
  • My ‘Little Book of Strength; – I am a big fan of the ‘Itty Bitty Book Company’.  They are a small company who sell handmade little book of quotes whether it be motivational quotes, positive quotes or quotes to gain strength from.  They also come with coloured beads attached to them, which make them really beautiful little gifts and keepsakes.  I love the ‘Itty Bitty Book of Strength’ and read all of the positive quotes when I am struggling because of my condition or just having a bad day. And I take them with me to hospital appointments to give me strength and help keep me calm
  • Mints and a bottle of water: My condition and the dizziness causes a lot of nausea; as well as this my mouth is always dry due to side effects of my medication so the mints and water help with this
  • Hat: I always carry this around in a little pocket in one of many Kipling bags as I have found that wearing a hat and minimising a lot of the stimuli surrounding me does help calm the dizziness down somewhat and is one of my main coping strategies when it gets bad
  • Purse: Always carry a purse as there are always shops at hospitals, and enables me to buy a drink or a snack during my wait.  Oh, and helps towards the car park fees, of course!

 

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My Comfort Item

What do you carry in your bag/purse/backpack when you visit the doctors’ or hospital?  Feel free to add your thoughts and comments below!

Hospital appointments met with relief or trepidation?

Well, have finally received my appointment to see a neurological consultant – all set for August 20th!!  After a long 28 weeks the appointment has come through, and all set for another hospital appointment.

 

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Hospital appointment finally!

 

It’s funny though isn’t it when symptoms associated with your chronic illness, such as pain, dizziness, headaches, and so on are getting worse; becoming so troublesome that there is nothing to do but to visit the doctor, and get the referral to see a consultant.  Meanwhile, the symptoms are still becoming worse, and you are hoping for that hospital appointment to come through because of the suffering; which by now is probably not only starting to affect your physical health but also your mental health, such as increased anxiety (for example, worrying about your symptoms) and depression

 

Then, that envelope finally drops on the door mat – for a second, there is a feeling of relief; a relief that the wait is almost over, and that you may finally get answers regarding the deterioration of symptoms.  However, that sense of relief is overtaken by one of dread, and anxiety.  Dread because of the unknown – you are unsure of what the appointment will entail, not knowing what the examination will entail.  Then there is the anxiety about what information will be gathered from the appointment and examination, and the final results.  What will the tests find?  Is it bad?  Will my condition get worse in time?  Those are some of the questions that you will inevitably ponder before a hospital appointment.

 

The sinking feeling in the stomach as that letter arrives with the hospital's logo!!
The sinking feeling in the stomach as that letter arrives with the hospital’s logo!!

 

 

Then there is all the preparation prior to the appointment, such as compiling a list of questions that you want to ask the consultant.  Completing a form with some pre-appointment questions that the consultant sent to fill out.  Filling out a journal regarding the symptoms such as frequency, length and so on.

But for now I just have to wait for that important date with some relief and a little trepidation…

 

 

HAWMC 2013 Day 23: “There’s an app for that!…”

 

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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

 

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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!

Living with illness…is like using a revolving door…

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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!!