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 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 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.

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 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 misunderstood illness; Chronic Fatigue Syndome/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.

 

Glimpse into defining ourselves through illness

I read some advice recently about not letting your illness define you. This initially sounded logical, and quite a basic instinct. However upon mulling it over, I started questioning the feasibility of this concept, when you are deep in the throws of a chronic condition.

Glimpse into the misconceptions surrounding pushing through chronic illness

This morning, my mum and I were talking about people's perceptions of you when you have a chronic health problem. I know that I have touched on this before, but when you are living with an ongoing issue, it is tough enough without having to deal with people's misconceptions and judgements. We came to the conclusion that no one can really understand the situation unless they actually live through it, or are very close to someone living with it. Mum is the closest person to me in this process, and she even admits to sometimes not understanding, but she truly gets the roller coaster, the hard times, and the frustrations.

The most difficult thing I find that people don't understand, is that some days I can push through, and others I can't. I am one of the lucky ones. Some people with chronic fatigue, pain and fainting issues are in bed all day, every day, and basic things become mammoth tasks. Yes, I can sometimes have a couple of hours where I can put on a brave face, smile, and have fun, or do gentle chores. But what some people don't see, or don't choose to acknowledge, is that the process of getting myself ready, out of the house and to that point was a huge effort. They also do not see that during those smiles I am often feeling bad, and afterwards, I rest on the couch or in bed for hours or days. Sometimes, I do have to cancel plans, because I just feel too bad that there is no pushing through. But on days I can manage to push through, and hide my paleness and dark eyes with makeup, I don't miraculously feel 100%! Maybe that is part of the problem, because I do not voice and make known the invisible symptoms to people around me, or I will say that I am feeling better than I actually am. But I don't want to be "that sick girl who is always complaining"!

Glimpse into the world of blogs

I have a lot of time on my hands these days while I am unable to work or socialise because of my health. Sometimes, I waste this time, watching trashy sitcoms, or mindlessly flipping through magazines, and that is what I need at those times. Then other times, I make use of brain fog free moments, and read amazing blogs, articles and books about such a range of topics that interest me. We truly are blessed with what we can access. This post is my 100th in blogland, and to celebrate, I have been reflecting on how fantastic blogs can be.

Glimpse into a life transformation

As I deal with a chronic illness that prevents me from taking part in activities that I once loved to do, I take inspiration from people who have managed to change their bodies into something amazing. Whether it is due to chronic illness, a busy and hectic lifestyle, poor choices, or a lack of resources and opportunity, there are so many reasons why people can find themselves in a body that they are less than happy with. I believe that we can all work with what we have and improve the fantastic homes that we live in - after all, it is the only one we will ever get! Whether this means that you will be able to get out of bed for a few hours a day, or whether it means taking part in an ironman, there is a level for everyone that we can aim for, and do everything in our power to reach.

I was lucky enough to interview a woman who has turned her body and life around. She describes her health in the past to have been appalling. She spent years heavily binge drinking two to three times a week, as well as smoking two to seven cigarettes a day, plus an extra pack on a night out. She ate fast and processed foods regularly and took no notice of what was in the food, such as additives and sugars. Her name is Gabrielle, and she decided, while sitting in the smoking area of a pub, intoxicated, that it was time to make a change. She is not only improving her body for her health, but will be competing in the INBA 2013 QLD State Championships for Body Building. What a goal!

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This is where Gabe found her body to be when she decided enough was enough! These are photos that have motivated her to keep going with her change.

Glimpse into chronic fatigue guilt - it's a fine line.

This chronic illness thing can really get you feeling ticked off at times! I feel like I get a grasp on how to handle things, and then something happens and bam, I am back to feeling alone, and unsure of how to get out of this never ending tunnel. I am not writing this for pity. I want people in similar situations to hear this and know they aren't alone. And maybe our shared experiences can come up with a way of dealing with it all.

Glimpse into socialising with chronic illness

I had an invitation to join a not to be missed, important and happy family celebration in the form of a high tea at a hotel on Sunday. This posed many problems for my body...preparation to get ready for a fancy tea, a long train trip to get to the hotel, an unknown in terms of the food, and hours spent away from my rest inducing couch. I was however, determined and optimistic to make it to this special do.