Glimpse into learning to live with chronic fatigue/ PosturalOrthostatic Tachycardia Syndrome/ Hashimoto's Thyroiditis

Now and again, someone stumbles across my blog who is new to dealing with chronic fatigue, or a friend of a friend points them in my direction for advice. This has made me think that it is time to do a summary post about some of what I have learned about dealing with certain issues so far on my journey.

Glimpse into week one of the AIP protocol

I have been following the Autoimmune Protocol diet now for a week and a half.

Glimpse into beginning the Autoimmune Protocol

I have learnt so much in the past couple of years, which is an opportunity I would have missed had I not become unwell. Having chronic illnesses which have caused me to stop work, and for my entire social, personal and active life to change to learn these lessons is far from ideal, but I am grateful (otherwise, what is the point of this struggle?!).
I am constantly reading (when the brain fog allows it, that is!) about my conditions and ways to improve my health. My background as a nurse has helped me here, and a passion for nutrition and wellness has been awakened.
Lately, I have been researching the Autoimmune Protocol (or the Paleo Approach). This is a diet which restricts certain foods so as to decrease inflammation in the gut, soothing and healing it, and subsequently, potentially, improving (or preventing) the autoimmune conditions that are often a result of the gut inflammation. When I was first diagnosed with autoimmune disease, I read about foods which were good and bad for thyroid conditions, and basically put it into the too hard basket (aside from avoiding gluten). I was already eating a restricted diet due to food intolerances, and I was quite unwell, so the idea of making it more strict seemed ludicrous! However, there appears to have been a lot more written about the diet since then and there are so many resources that demonstrate it is a feasible and beneficial diet (I purchased "The Autoimmune Paleo Cookbook" and "The Paleo Approach; Reverse Autoimmune Disease and Heal Your Body" - both of which have been extremely useful). Also, last month I had my antibody levels tested (these show that I have Hashimoto's Thyroiditis), and they have increased from 2400 last year, to 3800! They are meant to be under 60. This has really motivated me to find something that may improve this, and as my doctors says I do not require thyroid medication, food seems to be a smart place to focus.

A glimpse into changing our focus

Something which I have come to realise is that the small things in life, which we so often overlook, can actually be defining and motivating moments which can change our course, our perspective, our appreciation and our happiness. When the universe forces us to stop, due to something like a chronic illness, it is often then when we realise the beauty and wisdom in such small moments.

Today, I was fascinated by the stunning shape and texture and colours made by a tree's thick bark, slowly bending and shedding itself from the trunk. I would never have contemplated such a simple thing prior to my illness, but now that my body has slowed me down, I see things differently. 

This has made me think, why do we wait until something forces us to see the little things? 

I have decided to start a new blog series. I want to help people see the good in each day. 

If you are rushing about, too busy with life, this is pertinent for you. Start to look at the small things, and make the most of the opportunity to do so without being forced to stop. 

If you have already been slowed down, this is also for you. I have really noticed how ackowledging the small things helps me get through each day, when the big things can seem so overwhelming. Instead of focusing on what you can no longer do, or the financial worries you might have, or the people you don't see anymore, look at the amazing things that blossom within the tiny moments of each day.

As often as possible, I will put up on the blog a short post consisting of the following list:

~ See the good (small things to be grateful for)

~ Feel the happy (small things to be happy about)

~ Brighten your mind (small things to be fascinated by)
~ Find the moment (small things to plan to see/do/feel)

I am calling this series "Magnifying Moments".

I hope you join me on this journey of making time to put more focus on the little things, and gaining the understanding of the enormity of doing so. I would love to hear about what you see along your journey too, and how these thoughts and moments enhance you and your life.

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 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 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 insomnia

Lying in bed, exhausted but wide eyed. Tossing and turning. Waking at 4am and not returning to sleep. Rising in the morning feeling exhausted and unrefreshed.
 

Whichever way it is that you are effected, being unable to sleep properly is a horrendous experience for everyone.
And believe it or not, chronic fatigue and insomnia can coexist!

 

 Ironically, I have tried to write this post several times, and have been too tired and brain foggy to think about it properly, so have put it off!

 

Insomnia...why can't it start in the morning?

 

There can be several reasons why we can be so exhausted, yet fail to sleep.

Glimpse into white tea

I love tea. Thank the Food Intolerance Gods for letting me still be able to drink tea!! I keep mindful around fruit teas (monitoring for FODMAPs), but to be honest, fruit teas don't do it for me as much as other teas do! I also watch the caffeine content because as we all know, this is just another thing the body has to process, and when you're unwell, really it is an unnecessary pressure. This still leaves me with a wide range of teas to choose from and I can't get enough! I drink at least 4 cups a day on an average day, and now that we in the Southern Hemisphere are coming into winter, that will soon increase!

Glimpse into movement; every bit counts!

During the evening of Tuesday April 16th, Mum and I went to a two hour seminar held at the Hilton Hotel by Gwinganna Lifestyle Retreat. The topic of the talk was the concept of using movement to be healthy.

The main message of the evening was perhaps an obvious one, but very overlooked due to our society's current mindset; move. Push, pull, bend, lift, take the stairs, park further away, stand when answering the phone, move, move, move. We have had it drilled into us over the past few years that if we do a session of exercise most days, we will be fit, a healthy weight and live longer, despite sitting at a computer all day, and carrying out tasks in the most convenient, time and energy efficient way. However, the research that is now coming out is that people who do this do not beat the health benefits (hip and waist measurments, lifespan, fitness) gained by the people who just keep moving throughout the day. It does not have to be much; just incidental movement, as much as possible throughout the day.

Glimpse into Monday April 1st 2013

When I first saw the naturopath at the clinic where I get regular acupuncture and massage, I had an assessment done. She noticed that on the left side of my stomach, close to my belly button, there is a firm, sometimes raised area. I have been aware of this for years.
She explained that this was a clogging in my energy flow; that it indicated my liver energy was deficient.
A few days later, I was considering this idea. Then I burst out laughing.
I remembered that a gastroenterologist I saw a few years ago found that spot and explained that it is my aorta, which could be felt because I am slim.
So which is it; a blockage in my energy flow, or a vital part of my anatomy?!
                                                            Nature or science?!

Glimpse into remedies for autoimmune symptoms PART ONE

I am always on the look out for new ideas, inspirations, plans, techniques and tricks to make a difference to my many and varied symptoms. I get lost reading articles about exciting and interesting topics; I love blogs, books and magazines about well being, food and health. I also am quite open to experimenting and playing trial and error with myself to find out what works best for me.

Today, I will concentrate on what I find helpful when I have symptoms stemming from having an autoimmune disease. Another day, I will write about what I do when I react to foods.

I am currently having regular acupuncture, moxibustion and massage. I guess you do wonder how much it is actually doing but one session a few weeks ago confirmed to me that yes, it is helping! I walked in feeling pretty gross. I was fairly sure I was developing hyperthyroidism again because I was feeling shaky, achy and stiff, light headed and woozy. As I lay on the table with the acupuncture needles, I could actually feel it all easing up. After a gentle massage too I felt so relaxed, and I walked out with only remnants of the feelings I had come in with. It was exciting, and definitely makes the weekly fork out of $150+ seem worthy and justifiable. I have read that other people with thyroid issues get a lot of relief from this type of treatment too, so give a go; it could work for you! Massage is great as it not only eases the stiffness and aches, but it can help with your mind set too. And it doesn't always have to be a paid session with a trained therapist! It is even more soothing when it is a loved one that is massaging you; it provides a feeling of being loved, supported and understood too!

When I am aching and stiff, I do find that heat can help. Sometimes I avoid it, because it can then also make me feel light headed and weak, but when I can manage it, it does ease things up and it takes my mind off the pain. Run a warm bath, use a hot pack or use a warming rub (I was given Zheng Gu Shui sports liniment from my natural therapist).

One of my most hindering symptoms currently is chronic fatigue. Having suffered from fatigue, it is amazing how you come to understand the difference between being tired and being fatigued. My acupuncturist asked me the other day if I had had a bad sleep the night before and I said yes I had, and that I felt quite tired. He then asked if my energy levels were improving any. I said that today I did feel more energised. He clarified with me, "'So you feel sleepy because you did not sleep well, but you feel quite energised today?" It sounded funny and contradicting, but it was a revelation moment, when someone else understood that they are two separate components. Even having been very active all day and feeling exhausted, is a different feeling to that of fatigue.
Chronic fatigue is a nasty, vicious circle. I wake feeling exhausted, so I lay in bed until hunger takes over. I get up and do a few things, and inevitably end up resting on the couch. If I try to live life and do something fun, or do some chores, I am knocked out for the next few days. I crawl into bed exhausted at the granny bedtime of 8 or 9pm. Sometimes, I have the added joy that is insomnia, and lie there, wide awake for up to six frustrating hours.
My fitness is beyond non existent. Which, for someone who used to go to the gym up to 5 times a week, is disheartening to say the least. I know that if I were able to improve my fitness, it would help my overall feeling of health, as I wouldn't be fighting with being out of shape on top of fatigue. The catch 22 problem there is, of course, trying to drag yourself off the couch, when everything feels heavy, and going for a walk (and then, not fainting when on said walk!). When I do manage to go for a walk, or do a yoga or tai chi session, I do feel the benefits. Even if I end up feeling exhausted, it does help me feel a little more invigorated usually, and at the least, it blows a few of the cobwebs away that have gathered from the couch! I am trying to motivate myself to do some gentle form of activity as regularly as possible (or let others motivate me and drag me kicking and screaming off the couch!). I do encourage and recommend that you try to find something that your body will let you do, because every bit counts.

For more tips on relieving symptoms, read on in Part Two of this blog :-)

Glimpse into remedies for autoimmune symptoms PART TWO

Another impeding element for me is regular light headiness and dizziness. Obviously this can be quite dangerous. Along with fatigue, it is one of the main things stopping me currently from working as a nurse. It also means that I do not drive. My feeling of independence is equal to that of a fourteen year old! Not only do I rely on people to shop, cook and clean for me, but I can't even leave the house when I want to! I am so appreciative of the abilities I do have, because there are so many people out there that have so much less than I do. Of course, at 29 years of age however, having experienced independence and self reliance, to find yourself unable to work, drive or do most of the usual things that one does when looking after themselves, it is by no means an easy task to come to a place of acceptance of this situation! In theory, it sounds great to not have to work, or do house work or groceries, or cook dinner. It all adds up though, and those simple things that you take for granted and even begrudge, are groundings to what makes our lives interesting and filled with opportunity.
I am quite good at coping with my light headiness in that a lot of the time, people around me don't even know that I am blacking out. I have dealt with it for as along as I can remember, so I can often keep walking or carrying out what I am doing, while my vision goes black. I know when I am having an episode that requires me to sit, and so far I have not hit the ground that I can remember! (I have certainly come close, and looked like a drunk staggering along, but I have managed to safely get myself down). I do try the usual recommendations: I drink water regularly, I include salt in my diet, I try to not get too hot and I eat regularly. These techniques don't seem to make a huge difference, but then again, without doing it, it all could be a lot worse. Sometimes I have a feeling of ''not being here." It is a peculiar sensation in which my body keeps moving but my mind feels like it has turned off, so for a brief while I feel like I am flying on auto and the pilot has leaped out with the parachute. I find that the only thing I can do when this happens is press my nails into my palms and try to force myself to concentrate on my surroundings, and I eventually come out of it. I have been aware of this feeling since I was a child.
Other solutions to dizziness can include making sure the people with you regularly are aware. It is so helpful when you don't need to make a big deal of what is happening, and you can just nudge someone and they know that you just need some help; they can hold you up and help you to a seat, without a lengthy explanation of what is happening. I also keep an emergency pack of nibbles with me always, and try to have water on standby too.

Another problem when dealing with a long term illness, is cabin fever. Boredom can send you insane!! Sometimes I am struck by the fact I have no idea what I could do with the upcoming hours stretching before me. I am trying to find things that interest me that are within my current physical ability level. I have been attempting to learn more about my digital SLR camera. Upkeep of this blog gives me something to think about. I read as much as I can. My close friends are great; they understand that I can't plan a certain activity on a certain day now, and are always flexible and accepting of a last minute change. They are also willing to sit with me in my couch world if that is all that I am up to.

It is easy to slip into a feeling of missing out and being left out, but I take strength from knowing that I at least have the ability to do some things, and I have supportive family and friends, and I have the financial ability to look after my health as best as possible. Sometimes it feels like I am at a complete dead end, and nothing is happening for me. Lately though, I have started to look at it like this: My life is a blank canvas. I have the ability to start afresh with the knowledge of who and what is important to me and I can paint it with whichever colours I choose.

Glimpse into the waiting game

Time is just plodding along at the moment.

I am not working. I rarely leave the house. Apart from a couple of friends, my main points of human contact are with my parents (who are indeed awesome human contacts!). If I do find the motivation and energy to do something for an hour or two, like bake an easy cake, or have a cuppa with a friend at a cafe, then I am tired and need to rest for a big chunk of the day, and sometimes the next.

Every facet of my life seems to be on hold, waiting for the next move.

It is a vicious circle. Not enough energy to do much....don't do anything....lose motivation to try to do anything...don't do anything....rest, lose fitness, lose energy....don't do anything.

However, as I have said before, I have decided to be positive and look to the upside of things. So though I write these things while I feel tired, and lonely and bored, I am still holding out hope for a change soon, and I will make the clouds part in a few minutes and be happy for the day.

What are the upsides?.....
**I am not overweight! Luckily, I am not one of the people with thyroid issues who have weight gain problems. When I was thyrotoxic a month or so ago, I lost a few kilos too, so now I am classed as underweight according to the BMI index. This means, although taking into account my very strict diet due to food intolerances, I can have a daily dose of treats! I just ate hash browns and sausages for breaky, and at some point soon I will have a slice of the cake I made yesterday! Guilt free! (And I have low cholesterol and low blood pressure, so bring on the yummy stuff!).

**Massages! I have decided to try and have regular massages. My first one was on Monday and it was deep, and painful, but good!! I haven't decided how regularly I will do it, but it is something that will help, I feel.

** Although I get very bored, I should enjoy the fact that I am not rushing, and stressed and caught up in the fast pace of work and general day to day living. I know when you're at work, you can't think of anything better you'd rather do than relax on the couch with a book! It isn't the same after two months of it, and countless tv shows, audiobooks, magazines and hours of web surfing, but I know I should appreciate the down time (however enforced and undesired it is!!).

I have an appointment with a natural therapy practitioner today. I have been trying to decide whether to cancel but I think I will go. Although I dread repeating my story and getting nowhere, the possibility of someone else's views and thoughts developing a new idea that might help is too intriguing to avoid. Basically I am just hoping for some new physical therapy ideas, like particular massage types and acupuncture. I don't want to start any herbal medicines at the moment, because I am waiting to see the endocrinologist. I have tried the natural therapy route with two clinics before, so hopefully, now actually knowing about the Hashimoto's and food intolerances, this one will come up with something ground breaking! (Well, I'd be happy with just ground trembling!).

Glimpse into Thursday January 3rd 2012

I have been MIA the past few days from the blog because for the past week, the pain and stiffness in my shoulders, back and hips have been overwhelming. I have barely moved from the couch or bed. That coupled with feeling flat and tired, hasn't enabled motivation to sit in front of a computer!!
When I have ventured from the comfort of lying down, after about half an hour of even the mildest strolling, and I feel dizzy, sore and exhausted and have to go back to bed to sleep!
I am finding that over the past two months of being more unwell than I have been before, one or two symptoms seem to become exasperated for a week or two, and then settle into the background (still present but not as overwhelming), and something else comes to the forground. Has anyone else experienced this? The severe fatigue has basically been the same the whole time, and then dizziness, digestive problems, and pain seem to alternate between being the killer problem on top of it!
I think I have come to the point where I am going to invest in regular massage and/or accupuncture. When you get to the point that you can barely pull your arms over to your feet to rub them while they ache because your back is hurting so much, I think maybe that is the time to forget the expense, and make a positive well being decision! I have found a clinic in Paddington that seem to look at the whole person and use various therapies to improve issues, so when they open after holidays next week, I will book in. I will let you know how it goes!
I am realising this might be more of a long term haul than I first thought. I keep looking to my next work shift and think, right I have this many days to get on top of this and get back to work. And then that day sneaks up and I have no ability to even contemplate work and have to pull out. This not only stresses me thinking about letting work down, but also adds weight to the old shoulders thinking about money. It is a nasty circle! I had some good news about income protection yesterday though, so hopefully in a few weeks I might have some assistance there. If anyone out there has similiar issues, I highly recommend speaking to your super fund asap and see what you're covered for.
Today the pain is subsiding a little, and so here I sit at my computer, watching the cricket. My best friend visited me yesterday; she always makes me laugh and feel happy. Another good friend might be dropping in this afternoon. It makes such a difference when you have just a little thing to look forward to. It makes the effort of getting up out of bed worth it.