Giimpse into Wellness Wednesday - week 10 2014

My tip this week for Wellness Wednesday is to keep a book tracking all your medical visits, results, symptoms, and plans.

As I wrote yesterday here, it is so important that you be your own advocate when looking for the best options and answers for your health. Professionals in the health care setting are (mostly) amazing, but they are only human. When you see multiple doctors, it is easy for things to be overlooked. If you keep track of everything that is going on, you can make sure that the required tests are ordered, the results are reviewed, relevant people know about your symptoms and so on.

Ask for copies of results and summaries, and keep an up to date record of each medical visit or new development. It doesn't need to be anything fancy; just a few sentences or dot points detailing what occurred. I know that when you are sick doing something like this is easier said than done, and I have let mine slide a few times, but trust me, you will be thankful that you took the time to keep track.

Glimpse into another diagnosis - POTS & RBBB

My health journey has taken another turn in the past fortnight. Mid February, I visited a cardiologist, after having had a tilt table test performed in December, and discovered that I have Postural Orthostatic Tachycardia Syndrome (POTS). This explains a great deal, such as the light headedness, dizziness, palpitations, low blood pressure, nausea, brain fog and fatigue. It is mind blowing for me that this hasn't been discovered sooner. I have had the symptoms since I was a child, and although I've had other diagnosis made such as Chronic Fatigue Syndrome, and although it is a bit like the chicken or the egg in terms of determining which symptom or condition came first, it is amazing that it has taken til I'm nearly 30 to make the diagnosis. There have been several chances for this diagnosis to be made in the past, and it took me requesting the tilt table test (the diagnostic test used to diagnose issues related to blood pressure and heart rate) to actually get it done. I really can't stress enough how important it is to be your own advocate in the health care setting.

Motivation Monday - week 10 2014

As I am nearing a monumental birthday (the big 3-0), I am aware that this is typically a time people reflect on where they are in life and what they have done. Up until the age of about 26, I was happy with everything that I'd done; I felt accomplished, well travelled, educated and happy with how life was. The second half of my 20s started to slow down, and now, I am so unwell that I do not work, can not drive, I live with my parents, and I do the bare minimum in terms of chores or social outings. Nearing my 30th birthday, I could be forgiven for seeing this as a bit of a failing. However, I know that it is absolutely not down to any fault of my own. I am motivated and enthusiastic, and I am only in this situation because of my health issues, which I am doing all in my power to improve.
The saying that I wanted to focus on for this week is, "If you stumble, make it part of the dance." I love this. I may have gone off my planned path, but I am making the most of what I have. This blog for example, was born out of the stumble that has been my bad health. Keeping this blog going is really good for me. I also have become so interested in nutrition and well being due to my health issues. I love to learn as much as I can in this area, and I hope to be well enough soon to expand on this. So if you find that something knocks you during your dance, no matter what it is, do not see it as a failure or disaster. It can be scary and disheartening, but try to incorporate it and take advantage of the new possibilities.


Glimpse into the start of the Glimpsing Gembles Book Club

It is officially the first day of our first online book club for the Glimpsing Gembles Blog :-) So, start reading Winter's Tale by Mark Helprin if you haven't already! We will discuss the book over two weeks from April 15th, online at http://glimpsing-gembles.blogspot.com.au/

For more information, read previous posts about the book club here:
http://glimpsing-gembles.blogspot.com.au/2014/02/glimpse-into-book-club-update-book.html

http://glimpsing-gembles.blogspot.com.au/2014/02/glimpse-into-community-for-health-and.html

Happy reading!

Glimpse into Motivation Monday - weel 9 2014

This week, I would like us to remember the words of Marcus Aurelius...

"When you arise in the morning, think of what a precious privilege it is to be alive, to breathe, to think, to enjoy, to love."

These words have helped me this past week while I have dealt with new information about my health. No matter how difficult things can seem, how unwell you feel, or how lonely you are, ultimately, you are alive and have the opportunity to be happy, no matter the obstacle. 

Glimpse into book club book for March

Hello all!

Last week, I announced our first book for the online book club so that we would all have two weeks to find a copy, and start it on March 1st. During this week, I have discovered that the book is being reprinted as a paperback currently, and will be released at the end of March. There are hardcover copies around, but I have found that it is quite difficult (and expensive) to find a copy. Therefore, I feel we will need to postpone reading "The Interestings" til later on.

So if you have by chance, found a copy, fear not! We WILL read it! However, as it seems it will prove difficult to find a copy in the next couple of weeks, no matter where in the world you are, we will be better off to postpone and select a new book for this month!

The book for March/April will now be......"Winter's Tale" by Mark Helprin.

Briefly, this is what this book is about:
One night in winter, Peter Lake, orphan and master-mechanic, attempts to rob a fortress-like mansion on the Upper West Side.
Though he thinks the house is empty, the daughter of the house is home. Thus begins the love between Peter Lake, a middle-aged Irish burglar, and Beverly Penn, a young girl, who is dying.

https://www.goodreads.com/book/show/12967.Winter_s_Tale

There are varying reviews for this book; some not so good, some are great. I feel that this means we will have a good source of discussion then, as maybe some won't love it while others will.

It is also discouragingly large, especially if you have brain fog like me! However, we have til April 15th when discussion will start, and if we find by, say April 7th, that we are all behind, we can extend our time frame. So please don't feel pressured or intimidated! Remember, this book club is about taking your mind away from your real world, and discussing a story with other people. Just relax and have fun with it.
There is also an added bonus, that when you finish this book, you can sit back and enjoy the on screen adaptation, which is currently in cinemas!

Glimpse into Motivation Monday - week 8 2014

This week's Motivation Monday...

 

This is especially apparent in chronic illness, due to the ongoing unwell times and loneliness, and then the stressful visits to doctors, endless tests, worry about employment and your lack of independence, and how you will get your life back on track, the loss of friends, and life plans and loved activities. Sometimes it can all feel unbearable. 

What I try to tell myself when I feel like this is that this is just how life goes. This is what it is all about, and by getting through the tough times, we get to the good times. Some things are hard, and they hurt, and they are unfair, but if we can not change them we should not focus on them. It is the hard things that we do have control over which we should put our energy into. Let go of the unchangeable, accept it, and adjust to it, and work on what you can change.

And sometimes, when everything happens at once, it will be the good things. 

 

Just take each ball as it comes. Accept the strikes, and hit the others out of the ball park. We can do it.

Glimpse into Motivation Monday - week 7 2014

Welcome to the new blog series... Motivation Mondays! To get things started, here is an idea to think about this week....

 "Do not wait until the conditions are perfect to begin.
Beginning makes the conditions perfect."

 

A big part of having a chronic illness is waiting. Waiting for answers, waiting for results, waiting for improvements. It could be easy to fall into the trap of putting your life on pause, and just waiting. As I often say though, this is our life, we only have this one chance, and it is up to you whether you let your illness become you, or whether you let it only be a part of you. If we wait for that miraculous moment when we feel healthy again, we may have let a great chunk of our life ramble past us like a tumble weed. Maybe you can not do the exact thing that you want to do, but find an option that makes you happy. For example, I can not work at the moment due to my health. I love my work as a nurse, so in the meantime, I keep myself happy learning more, and reading and writing about health. In doing so, I have discovered a new path for myself and love the idea of helping people improve their overall wellness through improved nutrition and lifestyle choices. Find your option! Begin, and keep happy and strong, and things will get better!

If you are healthy and thankfully free of a chronic health issue, this still applies to you! What are you putting off which you could do now? What if you put off that dream job until you are more confident, or when the kids are older, or when the sun, moon and earth are at a 45 degree angle, and you find yourself in an unexpected situation that keeps you from that dream job?! Act now. You don't know what could change down the track. Be brave, begin, and the happiness and self love that comes from beginning will make you strong enough to keep going.

Do not wait; begin. 

Glimpse into a community for health and happiness

I would love this blog to be a hub for a community of kindred spirits, coming together in the interest of their health, to find motivation, ideas, and inspiration. Whether it be due to CFS/ME, or other types of chronic illness, food intolerances, or healthy eating and a willingness to improve your well being that has brought you to this page, I would like us all to work together to improve our health and happiness.

I know that a big problem for people with chronic health conditions is boredom, motivation to keep going, and loneliness. So to help combat this, I am proposing that we come together and help each other. Even if you have good health, join us, as we all have different experiences, thoughts and goals.

For 2014, I will be bringing four new series to the Glimpsing Gembles blog. Take a look!

A book club! Every second month, we will begin a new book. This can be reading the book, an online edition, or listening via audiobook; however you are most comfortable. This will give us something to do, motivation to do it, and people to talk about a common subject with that will take our minds off our issues. 

On the 1st of the month (March, May, July, September and November), we will start reading a new book. On the 15th of the next month (April, June, August, October and December), I will post some of my thoughts about the book on the blog, and we can all continue to add to the conversation in the comments section below the post. This gives us all six weeks to read the book, and two weeks to discuss! The book for the next month will also be announced on the 15th, so as to give you time to buy or borrow the book. 

As January has gone and February has begun, if you happen to be in between books, join me this month, otherwise, wait til February 15th for the announcement of March's book choice, and begin reading for March. The book choice for Jan/Feb is The Testament of Mary, as it is a short book.

Send any book suggestions you have to GlimpsingGembles@hotmail.com and I will try to include everyone's picks at some point :-).

Motivation Monday: Every Monday we will have a new motivational quote. Feel free to send me suggestions to GlimpsingGembles@hotmail.com. The quotes will be posted on the blog and on the Facebook page at www.facebook.com/glimpsinggembles.

Wellness Wednesday: Every Wednesday, I will explore a new form of movement for the body, or activity for the mind, which can be adapted to all our varying levels of mobility and comfort. 

Foodie Friday: Every Friday, I will explore a new healthy ingredient which we can add into our cooking and baking. If you have any ideas, suggestions or questions, leave a message and I will do my best to find information out for you!

I hope that you enjoy these ideas and that you will join me in the journey for health and happiness!

Glimpse into a misunderstood illness; Chronic Fatigue Syndrome/ Myalgic Encephalmyelitis

Having a chronic health problem is frustrating and horrible. Having a chronic health problem which is yet to be fully understood by medical and scientific explanations is like slamming your head against a wall of nails. The sheer arrogance, ignorance, insensitivity and degradation put towards people with these illnesses is mind boggling. 

I recently had a cardiologist tell me that all I had to do was to "change my attitude." This was based on an extremely brief summary of my current diagnosis and a tilt table test. The fact that he heard the words "Chronic Fatigue Syndrome" was enough for him to summise that I had just got up one day and said "eh, I couldn't be bothered." Had he stopped a minute before his relentless lecture, I could have informed him of the years of pain, discomfort and illness I have pushed through, trying to live a normal life and keep going. I could have told him of all the tests and doctor visits I have undergone; all the days at work when I could barely make it though; all the times I've blacked out while driving. I could have shown him the out of whack blood results, the kilos of weight loss, the limited diet my body allows me to eat, the signs of physiological stress, such as hair loss and nail ridges. My extremely low blood pressure alone could have shown a cardiologist of all people, that there are multiple physiological issues with my body. I could have told him about all the social events I miss out on, the relationships that have abruptly ended, about the work that I love but can not do, about the mind numbing boredom and loneliness that comes with it all. I could have told him about the endless articles I read looking for answers; about the hydrotherapy sessions I do each week; about the natural therapies I undertake; about the never ending hunt for something to help me improve my health. It just blows my mind that someone could have such an almighty view of himself to think that telling someone who is chronically unwell to change their attitude, when he obviously has absolutely no idea what my attitude is, was something appropriate or useful. He barely told me the results of the actual test I went in for; he just got lost on his tirade against a condition he clearly does not understand.

Glimpse into the New Year

Today is New Year's Day. A day typically dedicated to reflection and statements of intentions. Every New Year for the past 3 years, I have made New Year's resolutions. These have all revolved around my health and improving its state of deterioration, which had begun to speed up between 2008 and 2010. Each year, I felt more determined than the previous to work harder at finding out what was wrong with me, how to fix it, and go about doing so. And at the conclusion of each year, I was left feeling varying levels of failure because of these resolutions. (Although, 2013 has probably revealed a lot more potential than other years, even if it has been one of the worst for my body.) So this year, as 2013 began to wrap up, and 2014 loomed closer, I decided to not make a resolution. I felt I did not want the self imposed pressure, when I already know that I am doing my best to improve my health. More specifically, I didn't want that added feeling of failure when reflecting on previous resolutions, when my health battles are frustrating enough.

However, on the day of New Year's Eve, as I read people's statements, and listened to them explore their purpose and decisions, I began to think that maybe I do need a New Year's Resolution. After all, it is but a goal, and I constantly have small, medium and large goals in my life, which all of you with chronic health problems will understand too well. So after mulling over what I need to improve or appreciate or stop doing or start doing, I came to this conclusion. In 2014, I will just be.

          ~ Let go. Just be. ~

I am constantly over thinking things in my head, partly due to having too much time to over think, partly due to the frustrating dead-end feeling that comes with chronic illness. I find myself unnecessarily worrying, or unnecessarily being frustrated or saddened by some one's actions, or building something up and then being unnecessarily disappointed when it doesn't happen that way. Chronic illnesses takes what you thought was normal, and throws it up in the air and causes it to land in a million different directions and angles. I have said it before and I will say it again; we need to allow ourselves to step out from the dark cloud that chronic illness is, and enjoy what we do have. Live in the moment. We don't get to do this "life" thing twice (as far as we know!), and it seems ridiculous to let it slip past us, while we let illness tarnish our thoughts, alter our plans and change our happiness. Obviously, chronic illness comes in all shapes and sizes, and inevitably our thoughts, plans and happiness will be effected. Also, chronic illness requires determination, motivation, strength and perseverance to battle, so I am not saying we can just sit back and hope all will go the way we would like.
However, somehow, in the blur of pain, confusion, frustration, and sickness, we need to find a way to see the good in a moment, not just the discomfort. In 2014, I need to, we need to, just be.
           Happy New Year!

Glimpse into brain fog

Something that a lot of people ask me about or don't understand, is the feeling of "brain fog", which is so prevalent in conditions like Myalgic Encephalmyeltis. Obviously, brain fog is not a scientific term, but it so clearly depicts the feeling.

                                                                  Pic taken from here

Glimpse into my thoughts about chronic illness

I have chosen to write 5 things I hate about having a chronic illness, 5 things that help put a positive spin on chronic illness, and 5 things I still need to learn from or about living with chronic illness. I hope this helps people feel less alone, get some ideas, or understand other people's situation...