Dear Rhiann (at age 16)…

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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:

Dear 16-year-old-me….Write a letter to yourself at age 16.  What would you tell yourself?  What would you make your younger self aware of?

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This particular post is one which is both extremely personal and difficult to write.  Life for me was extremely difficult for me when I was 16 – I didn’t really have any friends, I was experiencing depression and anxiety as well as living with symptoms of the neurological condition even though it was undiagnosed at that time.   As you can imagine was not a very happy time for me at all.  Now, I look back at that time in my life,  I realise how much I have learnt about myself and life in general since then and furthermore how far I have come since that difficult and dark period in my life.  And, so there are so many lessons that I would share to my 16 year-old self, given the chance.  Here is a letter that I have written to my younger self.

Dear Rhiann,

You may not believe this but this letter is from you but a you from the future. Yes, that is right, as I am writing this I am actually 28 years of age and the year is 2014.  I am actually writing this letter just less than two weeks before going on a cruise around the Mediterranean – yes, that’s right – I (and the future you!) will finally get to experience the beauty and history of Italy; a place which I remember you have always wanted to visit.  So, that is one lesson that I would like to share with you – that although you may not realise it now, and despite how life is difficult for you right now, there are still many good things that are and will happen during our lifetime.  That even what may seem completely impossible right now, because of the way you are feeling and the severity of the dizziness that I know you are experiencing, the impossible is still within your grasp.  The trip may not be easy, and will at times be extremely difficult but I promise it will be so worth it.

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I know you are going through a very painful and difficult time in your life, having formally been diagnosed with depression, and having to start taking antidepressants a couple of days before your sweet sixteen.  Writing this, I remember how sick they made me feel for the first couple of weeks, only being able to eat very little before I felt full.  I also remember the incredible loneliness I felt back then, especially during school, having no friends and walking around in a daze, trying to pass the time until lessons started back after lunch.  But I want to reassure you and let you know that things will get better and there is so much more in life for you to enjoy and experience.

I also wanted to share a secret with you – the dizziness that you are experiencing?  It’s not in your head, and you are certainly not imagining it as some doctors have led you to believe.  Because of the rules of letting me write this letter to you, I am not allowed to tell you what is wrong, but there is an explanation for it.  So, please don’t listen when the doctor’s keep telling you that the dizziness is psychological and a result of an anxiety disorder.  Advocate and fight for yourself and your health instead of being timid and compliant like we are, as well as putting doctors on some sort of pedestal because they have had professional training and  “they know what they are talking about”.   One thing that I have learnt through years of navigating the medical field is that doctors are not always right; they are not infallible and they make mistakes.  Listen to that voice inside your head that knows that something is wrong and don’t give up on finding answers to the reason behind the dizziness.  Please keep fighting for answers.   And don’t give up and lose hope that the answers will never come, because they do – it might take some years in the future but they do come.  Trust me.

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I cannot say it isn’t going to be easy, or that it’s going to get better and you are going to live a full and normal life, but I believe that you are stronger than you think you are…and you can handle a lot more than you think you can…

And the loneliness you feel – it will go away, you are going to find people who will accept you for who you are, friends that are going to support you in times of need.  I remember at sixteen being teased and ridiculed for who you  are– just remember that no-one has a right to make you feel that you need to apologise for who you are.  Don’t be ashamed to be yourself… You will find people who love you for exactly who you are and make you feel important and valued.  It won’t happen overnight but those people are there waiting to find a wonderful friend like you are.

Before I forget  – the heaviness and stiffness that you feel in your legs?  The feelings that have been with you, since you can remember?  Well, those feelings, they aren’t normal and isn’t something that everyone experiences…Maybe mention this at your next doctor’s appointment.

And good luck for your GCSE exams in a couple of months – not that you need it, you are going to do just great.  You probably won’t believe it, but you will.  Stop doubting yourself.  Next stop will be your A-Levels, and then who know maybe even to University 😉

Take care of yourself and cherish this letter – keep it as a reminder for hope and the knowledge that life will get better and that everything is going to be OK.

From

Rhiann (aged 28)

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Doctors and Me….

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Welcome to the third 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:

Teaching the Teacher: What’s something you taught your doctor related to your health?

In my experience, this is typically a very hard question to answer, especially in the UK  National Health System.  In the GP Surgery, I attend and the difficulty in getting appointments, it is very challenging therefore to get an appointment with the same doctor.  As a result, you often see a different doctor at each appointment, and therefore it is difficult in this scenario to be able to teach your doctor anything regarding my health.

In addition, even attending hospital appointments with consultants; I have often seen different doctors at each appointment I have attended; especially given that I often been  discharged from specialities, and then had to be referred back to the same specialty when the symptoms have worsened, or new symptoms have been occurring.  Given, that I have been dealing with this revolving door of dealing with different doctors, I feel that in this  situation, I am not abled to teach the doctor’s anything.

Patients are an important aspect of a doctor's education...
Patients are an important aspect of a doctor’s education…

However, really thinking about the above question, aren’t we actually teaching a lot to the doctor’s regarding our health, no matter which doctor we are seeing?   After all, during every appointment, we are teaching the doctor a lot about our health by discussing our symptoms, triggers that may precipitate the symptoms, and so on.  The doctor needs to be taught all of this information to adequately give we the patients a diagnosis, and subsequent treatment plan.   Every piece of information we divulge to doctors, is a small piece of a very large jigsaw, that is our health.  And with each new piece of the jigsaw, the doctor is able to take these pieces and determine where these particular parts fit in the overall picture of the patient’s health, and then as more and more pieces are revealed and pieced together the doctor can provide a diagnosis.

What’s more, everyday patients are educating doctors – think about, every time a doctor sees a patient with a specific health condition, for example, lupus or multiple sclerosis, they learn about the symptoms that can present.  As a result, when doctors see patients that are presenting with a set of symptoms that they have seen previously, then they may have immediate suspicions of what is wrong with the patient, which then could lead to an early diagnosis and treatment.  This may be especially important when dealing with rare conditions, such as mine.

So, even when we think we are not teaching our doctors anything, we are wrong, because we are in fact teaching them a lot – we are not only teaching them about our health, but also giving them information that they can use again when seeing other patients exhibiting similar symptoms to ourselves.  We as patients, it could be said are an important aspect of a doctor’s continuing education!

What are your thoughts?  Have you taught a doctor anything?  As ever would love your comments and thoughts so feel free to press that comment button…

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!

Fighting the Battle…

Hey Everyone

Haven’t posted in a while, for which I apologise for, but lately am finding things so tough as of late.

The symptoms that I experience with my condition – as I have mentioned before:

  • Dizziness
  • Stiffness and weakness in legs (Spastic Paraparesis)
  • Sporadic episodes of vertigo with visual disturbances such as double vision, tunnel vision

All these seem to worsening… for example, a couple of days this week my legs were so weak that I could barely stand, and as a consequence most of those days were spent in bed watching mind-numbing day-time television, or listening to audio books – I love reading but the visual disturbances were so bad that I really was unable to focus on a book, and after several recommendations from others in a similar position to mind, bought some audiobooks to pass the time when I am having bad times and unable to read.

My legs were trembling so bad, a feeling similar to when your legs feel like jelly when you are nervous, that I just was unable to stand for very long, so really was unable to do much at all and realised how much we all take for granted – going for a showers, making a drink or lunch for ourselves, and so on.  The dizziness was also very intense, as I have mentioned before the dizziness is constantly there, but the intensity of it changes from day-to-day, sometimes moment to moment.  The way it makes me feel is as if I am totally unbalanced, and unable to ground myself, and when standing I can literally feel myself swaying back and forth.  The episodes of vertigo, however differs in that they are episodic, and so come and go (although are becoming much more frequent) and with the vertigo comes the sensation of the world moving, for many it feels as if the room is spinning.  However, I would describe it as everything moving back and forth, and often includes tunnel vision.

As I was so bad my parents pushed me into making another appointment to see our local GP.. after some thought I have made one, although I just get this feeling that I am just wasting the time of the doctor, as it has already  been said that there is nothing that can be done, so it there much point in going?  Should I ask to see the neurological consultant again, even though they are unable to do anything for me?

And on top of all this – it’s also the emotional impact living with a chronic or life-long condition, the feeling of being alone, that no-one else understands what you are going through.  The isolation of being in a room by oneself, no-one to talk to…

Feelings of loneliness and isolation...

Through all of this, not being able to go by myself, in case of a fall or if the visual disturbances come on with no warning, leaving me unable to really focus on where I am (dangerous and could lead to an accident), it has left me very lonely and with no friends, apart from my online support network which is fantastic, but just wish that I could live a normal life, and do things with someone else such as shopping, or going for a cup of coffee, etc.

However this is the card I have been dealt, and maybe there is a reason why ‘this’ did happen to me., and am meant to do something with everything I have dealt with or have learnt from all of this… Now I just need to find the answer and what I am able to do with my life….