Chronic Fatigue - My Story & Recovery 18 July 2016
I have attached this video to the blog I wrote in 2015. Feel free to watch the video or skim the blog post and if you have any questions I'd be happy to answer - you can leave a comment below.
PS. My green smoothie recipe is here
This post about chronic fatigue leads on from the anxiety & depression blog post.
Quick recap on the order of some of my health issues (spoken about in more detail here):
- Psoriasis at around the age of 13
- Allergic reaction to penicillin
- Glandular fever
- Swine flu
- Abnormal pap smear
- Ongoing food intolerances with various side effects
Throughout primary school and high school I was training morning and night for either swimming, running, tennis and any other team sport we picked up in the off season. My sister and I were very active kids and full of energy. To give you an idea of how chronic fatigue effected my ability to stay active, I went from competing at a state level in various sports to hardly being able to get out of bed.
In year 12 I spent most of first term in bed after an allergic reaction to penicillin followed by glandular fever. This was my first major auto immune response that I believe triggered ongoing chronic fatigue. At the time I wasn't quite aware what was happening I just felt like I didn't have as much energy as I used to. For PE (Physical Education) in year 11 and 12 we did triathlons for assessment. Being a swimmer my whole life I was used to 3-5km training sessions however the first sign that something wasn't right was when I struggled to even complete 50m. My legs felt like lead and to be honest I almost didn't feel safe in the water because I was so weak (and that's coming from an amphibian!). I also struggled with other sports that I usually excelled at. PE was my favourite subject at school so for me to complain to my teacher was a huge deal, considering I loved every class. I didn't end up doing my year 12 triathlon assessment due to this sickness so they used my year 11 results as part of my OP (Overall Position, QLD grading for year 12 relating to uni etc) - something that I had really started to worry about.
The sucky thing about chronic fatigue is that from anyone else's point of view you probably look fine and just seem lazy. Apart from dark circles under my eyes (that could be covered up with make up) and me yawning at 10 minute intervals I think I looked the same. I didn't have a cold or look pale, I just felt insanely exhausted ALL the time.
Getting out of bed in the morning isn't the most joyous time for anyone. But if I could try and explain how I felt each morning, it was as though my skeleton was laying on the mattress but my muscles had melted through. Most days I wished someone could help peel me up from the bed because that is how weak I felt. Snoozing my alarm until the very last minute before work was a daily ritual. I know a lot of people do this but when you're snoozing it and going back to a very deep sleep within seconds because you are still so extremely exhausted something is not right. A little side note to any mothers reading this - my sister had her first child in December 2014 and I see first hand how tired she can be some days after being up all night with the baby… this is an exception. I was feeling extremely exhausted even if I wasn't exerting myself. Even an early night with a solid 8hr sleep didn't change things.
The only thing a standard GP could pick up was a mild iron deficiency so I started taking 'iron + vit C' supplements. They said this is what would be causing me to be so lethargic. I also tried going to bed much earlier but nothing improved. Things actually got worse.
A family friend had been to a doctor named Greg Emerson and recommended I go to his Treat the Cause Clinic. Even the name of his clinic sounded promising because I was sick of trying to mask symptoms without getting to the bottom of the cause.
Greg was far more thorough than any other doctor I had seen. I had numerous blood and urine tests to get a really good look at what was going on. My results came back showing that I was severely deficient in iron, iodine, B12 and zinc. So even after being on iron supplements every day for 6-8 months I went from being mildly deficient to anaemic. The next person that told me to just 'eat a steak!' was very close to being punched in the face. At least I now had proof that regardless of what I did, my body wasn't absorbing much at all.
The reason for this - my gut was wrecked (and is still recovering). This is a common thing for a person with food intolerances especially coeliac. Symptoms I had which are common for someone with coeliac disease were abdominal cramping/ bloating/ feeling gassy but unable to really get rid of it (might be TMI for some but I do noooot care), anaemia, fatigue, geographic tongue, psoriasis, the iron, B12, iodine and zinc deficiencies, even the emotional problems such as depression, irritability and inability to concentrate.
A year or two before this round of testing when I gave up eating wheat after seeing an iridologist (more on that in the previous blog) I got a blood test for coeliac disease. I was already on a predominantly gf diet before the test as I wasn't eating wheat anymore and this test came back negative but they said it could just be because I hadn't been eating gluten at all really so it wasn't a definitive test. They said to know for sure I needed to go back to eating wheat for 6 weeks.. ahhhh screw that! I wasn't going to suffer and be in pain for 6 weeks just for a piece of paper that said yep DEFS coeliac.
The food intolerance test I had done with Greg Emerson showed high intolerances to wheat, yeast (baker's and brewer's), oats, malt, and sulphites (preservatives 220-228). So the common denominator is pretty much anything with a good old bit of gluten binding it. The sulphites/ preservatives explained the geographic tongue. So any dried fruits, grapes, dates, salad dressing etc were the things burning my tongue into a geographic map! As soon as I started to read the labels on things and steer clear of foods sprayed to preserve them my tongue cleared up instantly. Before the test I could never pick what flared it up because sometimes it was instant and other times it had a slightly delayed onset (ie. the next day). PS. According to a normal GP & medicine, there is NO cure for geographic tongue. Same goes for psoriasis. These two flare ups were what got me really thinking about why my body was responding in this particular way. If there was no cure, it surely had to be something I was doing or failing to do.
A quick note about doctors, medicine etc. As I was going through this whole process I started to get super peeved at doctors for rushing me through a 15min consult to tell me to take paracetamol or use some brutal cream or meds (that was more so for the psoriasis). When I saw Greg Emerson it was a massive relief - someone who was UBER thorough and didn't want you to leave without getting to the bottom of every problem. Which is what annoyed me about seeing a GP. I would think WHYYY aren't they this thorough and why do they only prescribe meds. Well, this question took me a long time to answer. Doctors study MEDICINE Eliza. This is what they treat patients with. And medicine is freaking fantastic don't get me wrong!!! But it is not the answer to every problem. Especially food related problems.
What I like about a naturopathic approach to health is it's all about being proactive rather than reactive. You only really see a doctor once the problem has escalated out of control. If I knew more about my food intolerances and deficiencies I would have been able to change things before they got really bad.
I just googled naturopathy and this is what came up:
Naturopathy is a holistic approach to wellness based on the principle that the body has the inherent ability to heal itself. Using the healing power of nature and gentle therapeutic techniques, the body, mind and emotions are supported during the healing process.
The power of food alone is incredible. Just take a moment to think about your diet. Even if you have a pretty healthy diet you may be lacking in something or you could be like me and struggle to absorb certain things because the gut is damaged. Before I started to get to the bottom of things I wasn't in touch with my body at all. Now I know as soon as I have eaten something I shouldn't have. Pay attention to how you feel after certain foods. For me dairy and gluten are the killers. Phlegmy chesty cough and puffy eyes after dairy, horrible stomach pains/ cramping/ bloating/ gassy feeling after gluten. Until you start paying close attention you probably think everything is working well.
That reminds me of how much sugar was screwing with me. When I was working as a secretary/personal assistant for a barrister in the city and my chronic fatigue was hitting hard, I really struggled to stay awake at work. Data entry and office life doesn't help but there were multiple occasions I fell asleep upright whilst on MYOB. I hated walking around the city to grab lunch or just sit somewhere random so I would sit at the coffee shop at the bottom of the building. In order to not feel guilty for sitting at one of their tables I thought hmm I should really buy something. So it was usually a GF choc brownie and a cappuccino. I didn't even drink coffee until this point. And I can't have dairy so it was just dumb on many levels. I thought it would help the whole falling asleep at the computer problem though. So I started to become a bit dependant on it.
I digress. Back to SUGAR. I had skimmed through the book Sweet Poison and had also just heard of Sarah Wilson's 'I Quit Sugar' which got me thinking about how much sugar I was consuming. I realised I was a full blown addict. To keep my energy levels in the 'awake' category I was surviving on sugar to give me that hit. I just grabbed the pic below from google images to describe my daily routine before I made some changes. UP, DOWN, UP, DOWN - vicious cycle. You can read a bit more about how I weaned myself off sugar on this page.
So how did I start to heal myself? There were a few aspects..
Deficiencies - I took iron, iodine, B12 and zinc supplements. I also had a B12 shot to kick start that one because my levels were in the red. These weren't just supplements you get from the supermarket or chemist though. The ones Greg Emerson recommended are only available in NZ (well for AUS customers anyway) so I had to order them. I don't know much about supplements but it was important that I was having a sort/form that my body could absorb. The brand is THORNE. I still take them but it's not as strict now that my levels are predominantly back in the normal zone.
Diet - I stuck to foods that sat well with me, I completely cut out anything that came up on my food intolerance test to give my gut a break. I started having green smoothies every day to make sure I was getting a nice big hit of good stuff. You can read a little post about green smoothies here.
Probiotics - Friendly bacteria that help keep your gut healthy. I take one Inner Health Plus tablet a day. There is more and more coming out about probiotics and their benefits. You may have seen things like Kombucha and wondered why the heck people were drinking this acquired-taste liquid. Well it's great for your gut. I'm still not on board with Kombucha and sauerkraut but I'm getting there.
Structure - Making sure I did little things to get a good routine back. I made sure I was getting enough sleep. Doing things that made me happy, a lot of painting. Less crappy food. Small steps!
Mild exercise - I started with stretching, that is how Get Bendy was born. Going from training for a half marathon to only managing stretching was tough to get my head around but I did what I could. I have only JUST started to reintroduce the occasional high intensity session as part of my workouts. 2012-2014 was basically stretching, walking, occasional light jog (and sometimes I'd feel good and go for a long run, but this would usually leave me dead for the next week) or weights - but pretty cruisy, barely broke a sweat. I started weights at the gym in 2013 and found it weird to not get super sweaty but this is when I noticed a real change with my body and shape. I would do about 3 workouts a week - legs, back and chest. 3 x 10 reps of about 5 or 6 exercises and that was it. No running or high intensity cardio. Just weights. I learnt a lot about conditioning etc in 2013. If you want a better shape, I think weights are the way to go. But that can be another blog post.
Mentally - The previous post about anxiety and depression was a huge contributing factor to my health. Seeing a psychologist was a very worthwhile step.
Psoriasis - This has bugged me since I was about 13 and I have spent the past 10 years trying to figure out how to get rid of it. I would mainly get it on my upper arms and on my scalp. According to any GP I saw, psoriasis had no cure but could be managed by certain creams or shampoos but they were way too intense - salicylic acid and coal tar, yeah don't smell great, burnt my scalp aaand they would maybe take the edge off the itchiness for about 12hrs, nothing more.
When I saw Greg Emerson he mentioned that I might have Pyrrole Disorder/ Pyroluria. In a nut shell he basically said that my body could be producing too many of these things called Pyrolles which bind to or inhibit nutrients such as zinc from reaching their targets in the body. Zinc is important for hair, skin and nails and this would explain why my skin was suffering. I have also had white spots in my fingernails pretty much my whole life and when the chronic fatigue was at its worst my fingernails were very thin and flaky (I would even wear nail polish to try and keep them from peeling). Stress is said to increase production of these Pyrolles so that would explain why I was flaring up at certain times. One morning after a very stressful uni assessment due date I woke up and I had broken out all over my face and neck (I had never had this bad of a break out before).
I was lazy about getting the Pyrolles test done at first so I didn't get it till the end of last year and yep they were correct. Zinc was the only deficiency I couldn't seem to budge even whilst being on supplements. So now I'm on activated B6 tablets (which is required for proper utilisation of zinc) with breakfast and lunch and I also take a double dose of my zinc tablets before bed. Basically my body is getting rid of too much zinc leaving me with low levels so this is what I need to do to compensate. My GP had never heard of it but again I guess this comes back to medicine vs health science. If a normal GP was saying this was incurable and another was giving me answers I wasn't going to ignore an explanation which could help an uncomfortable problem I have been dealing with for 10 years. Greg Emerson is not only a physician (doc) but has also studied the more naturopathic ways of treating patients so for someone with a medical background to treat in this way was interesting - and also something I preferred. You can read more about him here.
NOW to what you can do. If you are in Brisbane and would like to make an appointment with Greg Emerson be aware that he has a very long waiting list. I booked in January and didn't get in till April. He is a quirky, down to earth and extremely knowledgeable man but if that isn't an option and you want a similar approach you could try seeing a naturopath as they run a lot of similar tests. It can be quite costly but to be honest, BEST money I have ever spent. Looking after your health is seriously priceless and should be your main priority. Everyone deserves to be happy and healthy.
Also, last year I had the pleasure of meeting an awesome guy named Toby Morrison. He actually contacted me wanting one of my hand painted world maps (the prints in my shop are of the original canvas painting) and turns out he has a Chronic Fatigue clinic in Victoria. We caught up and chatted for hours about everything we had both been through and it was refreshing to chat to someone who had a similar experience.
You can check out Toby's online recovery program: http://www.cfshealth.com/online-recovery-program/
and Facebook: https://www.facebook.com/CFSHealthCentre
Keep in mind, chronic fatigue is different for everyone. Find out what's going on inside YOUR body and go from there. Be patient and enjoy learning more about yourself and how your wonderful body works.
How I feel now? Well in late 2014 I decided to get all my tests done again to see where I was at. I was feeling really good, energetic, more healthy. Stressed from uni but other than that, great! I was really hoping my tests reflected how I felt annndddd for the first time in about 5 years my test results came back within the NORMAL range!! My body still struggles with zinc and B6 so I'm taking supplements for that but everything else is going really well. My psoriasis only flares up when I'm really stressed, my geographic tongue only happens when I have sulphites/ preservatives 220-228, I only get bad abdominal pains/ bloating when I have gluten, I only wake up with puffy eyes if I convince myself I need an ice cream for dessert, and now I really listen to my body in terms of exercising. I take it easy if my energy levels are low and I work a bit harder on good days. Anything I do now in terms of exercise is to build me up, not wear myself down. Half marathons are not on the to do list for a while.
Even though this has been a frustrating, tiresome and long journey.. I am SO thankful for everything I have been through - it has been a blessing in disguise. I am now extremely in tune with my body, have a wealth of knowledge about stress and how it can play absolute havoc with your body, know what foods sit well with me and what doesn't, know how important mental health is and when to just push your ego to the side and ask for help. It has also let me create a job I absolutely LOVE and share with thousands of beautiful people around the world. Ah the list is endless.
It is obviously hard to squeeze the past 10 years into one blog post without it being a novel but that is pretty much all I can think of at the moment. I will let you guys know if I add to this post :)
I really hope this can help some people dealing with similar problems. Feel free to leave comments and questions below.
Keep smiling and look after yourself!