Glimpse into my atricle contribution for Your Zen Life!....ME/CFS International Awareness Day - May 12th

I wrote an article for International Awareness Day for the Your Zen Life website, and it was published last week! If you are interested in reading it, it is on the website at http://www.yourzenlife.com/post/me-cfs-international-awareness-day-may-12th, or read below.

Glimpse into a day in the life of a sufferer of Myalgic Encephalomyeltis/Chronic Fatigue Syndrome

As part of raising awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) leading up to the International Awareness Day on May 12th, I decided that I would document an average day for me, a sufferer of ME/CFS.

 

Wednesday April 30th, 2014:

11am: I wake up just after 11am, feeling groggy and tired. I lie there for about half an hour, before picking up my phone and looking at messages and social media. I take my blood pressure and heart rate to check how they are due to starting a new medication two weeks ago. The usual spot to the left of my belly button is aching right through to the other side of my body; a sign my food intolerances have been aggravated.

12pm: I drag myself out of bed so that I can get some food to take with my morning medications (which I am late to take due to the unavoidable sleep in). I collect my tablets and food (my Mum makes up my breakfast at the moment, which is an amazing help), and climb back into bed. Feeling tired and dizzy, I eat my breakfast (lunch?!) and, although my bowl of quinoa and chia with raspberries and strawberries is delicious, I quickly move the pillows down again to a position close enough to lying down as possible while trying to allow a position of "I am letting my food go down." I turn my audiobook on (yep, you caught me - I have started our book club book, "Gone Girl" a day early :-P), and snuggle under the doona to get warm, feeling my eye lids fight the knowledge that it is the afternoon. My heart is thumping after the exertion of eating, and my legs are heavy and wobbly after standing when I put my breaky in a bowl, and got all of my medications together.

1pm: Mum subtlety asks me what time it is. Ten minutes later, she asks me whether I think I should really get up now and move about. My impending nap is clouded by motivational guilt, and I turn the audiobook off. By 1:30pm, I drag myself out of bed, pull on some comfy leggings, and migrate to the couch.

Glimpse into part two: things to do when your body doesn't want to play ball -Wellness Wednesday week 16

Last Wellness Wednesday, I blogged 5 ideas for things to do when you are chronically unwell, to keep yourself entertained and happy. You can read them here. This week, I bring you five more ideas!

1. Do a chore. I know, I know, I said that these ideas would entertain you and make you happy! Finding a chore that you can handle without making yourself more unwell however, can be so effective in the healing process. It is physiotherapy, and it helps you feel like you contribute something to the world, no matter how small. It also helps you work towards the elusive and tantalising dream of a Spoonie...that thing they call independence! (Don't know what a Spoonie is? Read the post where I wrote about it here).
Something I enjoy doing when I have some energy is baking, or cooking a simple meal. Hidden in the joy of filling the house with delicious smells, and your belly with healthy treats, are exercises which strengthen your arms, walking and movement as you get the almond meal from the fridge, and squats to empower your legs as you reach for bowls in the cupboards. Find something that you can enjoy which won't set you back for days. Walk with your helper/friend/family member around the shops as they do the groceries. Wipe the kitchen bench. Fold the washing. Load the dishwasher. It might seem like a little thing compared to what you used to do, but from little acorns...

Glimpse into International Awareness Day May 12th

Glimpse into things to do when your body doesn't want to play ball -Wellness Wednesday week 15

A common question I see popping up in forums and groups for people with chronic health issues is "how do I stop myself from going crazy with boredom/frustration/loneliness/anger/sadness?" It can be a problematic issue, and it is a catch 22 situation. You feel so unwell because your body is sick, so you inevitably miss out on more and more in terms of socialisation, work, chores, physical exercise and activities; normal life! So then in resting your body and trying to heal, you find yourself feeling lonely and frustrated, which then makes you feel worse. It is a vicious circle. The best thing for your body while it heals is to find things to do that can keep your soul happy, your mind active and your body moving within its limits. These are some of the things that I have found to be effective. I will post 5 today, and another 5 on another Wellness Wednesday. 

1. Find a hobby: Take this opportunity to turn a bad situation into a good one; do something that you haven't had chance to do before. For me, I have dived into paper craft, scrapbooking, memory keeping and photography in a big way, and I am loving it! Find something that is within your body's current physical capability (for example, scrapbooking is great because you can sit in a comfy chair or even lie down with a tray table across your lap and relax, but still be doing something with your hands and mind). I love to listen to audiobooks because I am an avid reader, but find physically reading too taxing most of the time (Audible is an awesome site for affordable, online audiobooks). Try painting, or decorate a mug or a pillow, do some cross stitch, play chess with a friend, play a gentle instrument, learn the rules and strategies of a sport on tv such as cricket or the formula 1, try your hand at writing, sewing, or gentle gardening. 

Creating a crafty mess while scrapbooking....

Glimpse into body image with chronic conditions (i.e. wanting to look and feel great!) Wellness Wednesday week 15

Something that I do not see written about much in relation to Chronic Fatigue Syndrome (CFS), Postural Orthostatic Tachycardia Syndrome (POTS) and other chronic illnesses, is body image and getting fit. Obviously, it is not the highest priority when you are struggling to gain a good quality of life, so it doesn't feature so much in articles or forums. However, I feel that it is an important factor to consider. When you lose control over your body and it is not functioning well, it adds to the frustration and sadness when you realise that you can not even work towards making it do and look like you want.

Glimpse into Motivational Monday- Laughter- week 15 2014

Hello all, on this cloudy Motivational Monday! I spent time yesterday with some of my favourite people in the world, and it really showed me how laughter is the best medicine. It is incredible how much better you feel in a moment of laughter. 

Subsequently, this week's motivational quote is going to be: 

"Against the assault of laughter nothing can stand." -Mark Twain 

Be positive in the face of your troubles this week if you have any, and find a way to smile despite them (or in spite of them!). As hard as it is, look for something that keeps you going, and concentrate on the happiness it brings you. Be thankful, be happy to be alive, and laugh hard. 

"In the sweetness of friendship let there be laughter, and sharing of pleasures. For in the dew of little things, the heart finds its morning and is refreshed." -Khalil Gibran

Glimpse into Motivational Monday - week 11 2014

"Patience is not the ability to wait, but the ability to keep a good attitude while waiting."

 

If you are stuck in bed most of the time like I am at the moment, this is especially poignant. It applies to everyone though. Keep smiling, keep positive, don't give up. Cry and complain, because that is healthy too, but at the end of the day, holding onto the faith that things will get better is what will get you through. Make the most of what you can do, and the people who are around you, and keep going.

 

 

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...

Glimpse into Chronic Fatigue Syndrome

A couple of weeks ago, I went to see my doctor, and came out feeling like we had had a break though. I have been seeing him for close to a year now, and he has tested me for so many conditions in an attempt to explain my symptoms. I have had several tests come back out of whack, and now, along with a new result showing that I have had Ebstein Barr Virus in the past, combined with my symptoms and ruling out other similar conditions, he has officially diagnosed Myalgic Encephalitis/Chronic Fatigue Syndrome. Along with that I already knew I also have Hashimoto's Thyroiditis (an autoimmune condition), multiple food intolerances, Fructose Malabsorption, low parathyroid function, and a couple of other things I will have to monitor.