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 ~ countdown...13 days

 

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 May-June book announcement

The next book for our book club will be......"Gone Girl" by Gillian Flynn.

We will start reading from May 1st, so you now have a couple of weeks to find a copy. We will start discussion June 15th.

Happy book hunting and gathering, my bookworms!

Blurb: On a warm summer morning in North Carthage, Missouri, it is Nick and Amy Dunne's fifth wedding anniversary. Presents are being wrapped and reservations are being made when Nick's clever and beautiful wife disappears from their rented McMansion on the Mississippi River. Husband-of-the-Year Nick isn't doing himself any favors with cringe-worthy daydreams about the slope and shape of his wife's head, but passages from Amy's diary reveal the alpha-girl perfectionist could have put anyone dangerously on edge. Under mounting pressure from the police and the media--as well as Amy's fiercely doting parents--the town golden boy parades an endless series of lies, deceits, and inappropriate behavior. Nick is oddly evasive, and he's definitely bitter--but is he really a killer? 

As the cops close in, every couple in town is soon wondering how well they know the one that they love. With his twin sister, Margo, at his side, Nick stands by his innocence. Trouble is, if Nick didn't do it, where is that beautiful wife? And what was in that silvery gift box hidden in the back of her bedroom closet?

Glimpse into March - April book club book DISCUSSION - Winter's Tale

The time has come! Our first book club online discussion is here :-). We have the next two weeks to discuss, and then we will start reading our next book on May 1st (the next book will be named on the blog today also!).

Winter's Tale is a book which was published in 1983, written by Mark Helprin. It is a story set in New York and follows a man, Peter Lake, during his troubled life, and his meeting of a young, dying woman.

Now, I am ready to be honest! I did not finish this book! Not a good start for our first book club book! I only made it to page 41. In choosing this book, I made a change from my normal genre selection, but was taken by the blurb. I decided this would be our first book to read, without determining the page count, or whether it was available on audiobook. Currently, I struggle to read for long, and hence rely on audiobooks for the pleasure of stories, which I know a lot of you do too. Winter's Tale, however, is sadly not available. My close friend decided to record herself as she read the book and send it to me. This amazing and thoughtful plan worked for a while, but then stopped! I assume (but wait to hear her side in this discussion!) that this may have something to do with the storyline! She is an avid reader, so it tells me a lot if it didn't grab her enough to keep reading and recording. I have learned from this experience that from now on, the books we read for bookclub will be shorter and available on audiobook, as well as freely available in bookstores, libraries or as an ebook. Feel free to put your ideas below on what our page limit should be.

As I did not get far into this book, I missed out on a lot of the story. I was intrigued by where the story was going. I did find that the background set up was dragged out too much though. I feel this may be why I struggled to get into the book (and I know I am not alone!). I felt the writing was descriptive and created amazing imagery for me. I enjoyed the introduction of various characters, told from their own perspective, instead of another's. I found the choice of language added to the character's personality and description of their background. I do want to find out what is going to happen, so it did hook me in, and I do hope to finish it one day (I believe that I would have finished it had it been available on audiobook).

What are your thoughts about the writing in this book? What do you think Mark Helprin did well? What did he not do so well?
Did you finish reading it? If not, why do you think that was? If you did, were you immediately interested, or did it take you a while to get hooked?
Did you enjoy the characters? Who did you like the most? Who did you not like? How has their past and backgrounds effected them today? How does that effect others?
Do you feel any characters developed themselves during the book? Did you enjoy the romance? Did you find yourself heartbroken?
Did you learn anything in this story; for example about life, or love, or history?
Did you enjoy the ending?
What would you ask Mark Helprin, given the chance?

In the comments below, leave your thoughts and ideas about this book. Feel free to be honest and open! We have two weeks to talk about it, so jump in and get chatting!

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 in Motivational Monday - LAUGHTER- week 15

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 lemons and a No Bake Lemon Slice - Foodie Friday week 14

For this week's Foodie Friday, I am looking at the humble lemon, and am giving you a tasty, super easy, no bake slice recipe which I made up recently. I have struggled to post lately because I haven't been well, so I apologise for my silence!

Lemons (and other citric fruits) are considered the lowest fructose containing fruits. Therefore they are great for use in meals and drinks for those of us with fructose malabsorption. They also have health benefits such as helping to improve skin health and beauty. They can have a calming effect so are good in stressful situations, and can help with metabolism, digestion and the elimination of toxin build up in the body. They also have antiviral qualities, with vitamin C, and can boost energy.

Soak up the benefits in this nutritious no bake slice.

No bake lemon slice

Base

1 cup quinoa flakes or gluten free oats

1 cup almond meal (or LSA - linseed, sunflower and almond meal)

1 cup desiccated coconut

200g dairy butter

1/3 cup lemon juice

1 lemon rind

1/3 cup coconut oil

3 tbsp rice syrup

2 tbsp chia seeds

1/2 cup rice milk (if needed*)

Icing

2 cups dextrose

1 1/2 tbsp melted butter

3 tbsp lemon

Line a 20 x 30 cm tray or airtight container with baking paper.

Mix all the base ingredients together well.

Press the mixture into the lined tray or container.

Refrigerate until firm.

Combine the icing ingredients well til smooth.

Spread icing over slice base.

Refrigerate until firm.

Cut into squares.

Store in sealed or covered container in the fridge or freezer.

*You may find your mix is wet enough without the rice milk, or you may just desire a few splashes. 1/2 cup creates quite a moist slice, but it still is firm. A fork is in order to eat it with though!

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 Foodie Friday; week 10 2014 - chia seeds

Chia seeds are amazing little things. They can be used as a gelatinous gel when soaked in water to replace eggs in baking, in smoothies to make them thick, as crusts and coatings, in puddings for a healthy twist, in breakfasts for an extra hit of nutrients...so many options for such tiny seeds! They are tasteless, but provide a great texture to foods.
Did you know that it is a member of the mint family?

Glimpse 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.

Motivational 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 GG's book club - Winter's Tale by Mark Helprin

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 Motivational Monday - Week 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 update - BOOK CHANGE

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 Wellness Wednesday; week 8 2014 - belly breaths

This week has been one of information overload for me after a visit to a cardiologist brought a new diagnosis. I am working on staying calm, processing the information, and looking at it with a positive view, and as a step towards better health with new treatment.
Therefore, I feel this week's Wellness Wednesday should focus on deep diaphragmatic/belly breaths. This type of breathing can reduce stress and pain, and improve crucial body processes such as your immunity and blood pressure. Once you have read this, take your focus away from the bright computer screen, away from the chores that need doing, and take your mind away from all that worries you.

Close your eyes, take a deep, slow breath through your nose, and focus on the rise of your abdomen/belly rather than your chest. Exhale slowly and feel the benefits of the increased amount of oxygen in your body. Be thankful for being alive, for being here to enjoy the good times, and for the good people in your life. Don't let the big problems overwhelm you.

Every time you feel like the worry is setting in, take 5 to 10 deep breaths.

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 the bookclub: March book announcement

It is the 15th of February, and that means that it is officially the first Glimpsing Gembles blog online book club book announcement!

Drumroll please.......

The book will be Meg Wolitzer's "The Interestings."

We officially start reading on the 1st of March, so you have time to go find or borrow a copy of this book. (If you start reading early, we won't tell anyone! ;-) )

Summary: The summer that Nixon resigns, six teenagers at a summer camp for the arts become inseparable. Decades later the bond remains powerful, but so much else has changed. In The Interestings, Wolitzer follows these characters from the height of youth through middle age, as their talents, fortunes, and degrees of satisfaction diverge.

Wide in scope, ambitious, and populated by complex characters who come together and apart in a changing New York City, The Interestings explores the meaning of talent; the nature of envy; the roles of class, art, money, and power; and how all of it can shift and tilt precipitously over the course of a friendship and a life.

https://www.goodreads.com/book/show/15815333-the-interestings?bf=2000&from_search=true