CFS Journey

It’s been a long time since I’ve updated here and other places about health stuff. I was having a break and trying certain things, it was a bit too much for me to keep up with all the sites etc and just needed a break.

So after I moved into a place here in Sydney after the last update, I re-visited some info through some friends in health circles, about people that live almost exclusively on fruit and veggies. I was before, living on elemental drinks – both medical and home made (low reactive nutritional drinks broken down into their simplest form of simple sugars, amino and fatty acids), but that was a very unnatural way to live. Even though they are great and life saving when necessary (I am doing a video on them soon).

When I remembered there are entire communities of people living on the low fat high raw vegan diet, I realised, Aha! Over all these years I have known that fruit is one of the foods that do not hurt my gut so much (liver/pancreatic pain etc). So I started following a lot of people in the movement, and living on raw smoothies, large mono meals of mangoes, bananas, grapes or big fruit platters etc.

At night I would have a giant salad with fruit, and then later on, the only cooked food I ate was a huge bowl of long cooked no fat veggie soup with loads of colours in it. I did not touch any animal foods, meats, eggs or fats for almost 2 years. I obviously stayed thin on this diet, because although I ate a fair amount of calories, I couldn’t work out at all due to the CFS, therefore my weight stayed low. However it allowed my body to cleanse, detox and heal like nothing else had.

I also did quite a few rounds during this time of high quality practitioner / pharmaceutical grade supplement formulas from companies like Metagenics. These were very helpful in repairing the gut lining (2 main ones were Glutatenics which is a glutamine based formula and the other was Thermophase a phase 2 detox support formula)

After 2 years on the diet and supps, I felt my body had changed somewhat. One thing I can tell you this definitely saved my life. I am still here because I did this very strictly, with the specific supps (including Sam-e & vitamin C powder @ 6-20grams daily which was one of the most important things for me and still is).

Toward the end of ’14 and early ’15, I started re introducing certain foods to test if I could tolerate them again. I tried some cooked sushi, and small bits of chicken, and to my utmost surprise, they no longer shut my body down anymore (as any/all protein and fat did back in 2012 – a single egg rendered me unable to move my muscles or barely breathe without a struggle for around 6-7 hours).

Over about 4-6 months, I gained a much needed 15kg (around 34 pounds) of weight. The strict high raw vegan diet was what I needed to heal, but as I got better and the body and gut repaired somewhat, I felt kind of empty/hollow like I really needed more than that to build up, and it certainly did. I am making a YouTube vid on gaining weight with CFS etc.

Since gaining the weight, I have felt more strong and resilient in the world instead of so fragile. Before that it hurt my bones to sit on a chair even. I could not at all sit or lay on the floor because of pain. Gaining weight is something so many people with CFS need to do, especially the very underweight ones. There are good methods for this even when one can barely tolerate much solid food.

During 2015 and ’16 I did a series of IV vitamin drips. These REALLY help almost all people with a chronic illness. They are quite an instant boost. It’s a shame they only last around a day or so, and if you stop, the benefits don’t continue. I haven’t done them for a year or so in a row though so perhaps they would with longer term use. I felt great after each one for around a day or so. The high dose Vitamin C in them helped with immune stuff and general body repair (as the magical C so wonderfully does!), and the b-complex helped with energy and brain function etc. Many people get what’s called a Myers cocktail, which contains more – trace minerals, magnesium and glutathione as well as the above mentioned.

The only setback I have had was in winter 2016, where I seemed to get the same virus back (activated?) that I had back in 2012 where my heart would suddenly speed up to over 200bpm suddenly in my sleep. Still super scary, and because I had no carer then I was alone most of the time, and had the ambulance visit me lots of times due to this. I would crash hard after one of these and take a few days to recover, was very intense. However, soon as the weather warmed up, as usual, the viruses died down and I improved back to baseline (I have a pure hatred for winter due to constant viruses every year during it. Anyone live in the tropics and want to have me up there? ^_^ )

I moved again late 2016 to a 3br house with a pool, where I have more space to move around, get more sun, and am much more able to be creative again.

I still eat a lot of vegan food as primarily plant based is one of the best ways to be. But I do still sometimes have some organic free range eggs, chicken or salmon. There are often periods I go back to all vegan when I feel like I need it.

I have done some herbal parasite cleanses, and am currently doing a series of liver flushes (not the most fun o_O) and some other things, to try help things further.

What I can tell you is after going through 17 years of hell, is that NO AMOUNT of CBT, graded exercise, or anything similar, does ANYTHING OF USE, AT ALL for me, and the majority of people with anything less than a mild, not actual ME/CFS general fatigue state. The only thing that helps, is physically manipulating the biochemistry through diet and supplements or meds.

The OMF (Open Medicine Foundation www.omf.ngo ) headed by the amazing professor Ron Davis, Newcastle University and many other respected, scientific medical groups are making huge strides to prove that CFS/ME is a very real and physical condition. Every publication about CBT and GET being curative / the main treatment/tool for CFS needs to get directly in the bin. 

Am I cured? By far not. I still have the same digestive and severe fatigue issues, body pain, metabolism problems and lay down most of the day etc. After all there is no full cure for ME/CFS, and no one in this world so far, really knows exactly what’s wrong with me. Nor have they seen anyone who is just the same.

However, I am still here, and have improved various aspects. I am definitely stronger and more stable than I was, and now armed with the tools to be able to deal with more difficult times through my experience with all this over the years.

I am now doing a limited amount of photography and music again.. which I am very happy about after being too unwell for so many years to do barely any of it. I also have been working on videos about everything I’ve been through and learned for YouTube, and will update those on this site when more of them are done. I still am limited but glad to be doing things again.

Digital artwork I did for the Millions Missing CFS campaign 2016.

Check out my photography/art: Click here for my FB Photography Album

I have realised that we cannot just keep waiting until we are ‘fully well’ to follow our creative passions, because that may never come, so I think we have to make the most of what we can do right now.

-Chris.

Click for My Story: | Part 1 | Part 2: 7 Weeks in Hospital | Part 3: Heart & ER | Part 4: Hospital Again – No Answers | Part 5: Long overdue update! 2012-2017