I'm really sick! Still!
I've been unusually fatigued since March 2016 and really sick (unable to leave the house and sometimes unable to even talk or cook for myself) since September 2016. It sucks. I hope you trust me that this is not an elaborate scheme to get out of having to have a job. I really do want my health and my life back!
So, what is wrong with me and what can I do?
My first stop was to the doctor. Blood tests indicated that the Epstein Barr virus (glandular fever) was active in my body again. Rest up, eat well and wait were the doctors orders.
No worries. My summer job had just finished, I found someone to replace me for some casual outdoors work I had lined up, and I pulled out of a bushwalking trip I had been planning to the Du Cane Ranges. I had recently finished my diploma of education, but I decided hold off looking for any teaching work until I got better. I had had glandular fever twice before and recovered both times in in about 4 months, with out any complications.
10 months later, I now refer to my illness as chronic fatigue syndrome, as the fatigue and sickness has gotten a lot worse, it has gone on for so long, and many of my symptoms match those of other CFS sufferers on the internet. I suspect something more is wrong with my body than just glandular fever.
This is not an official diagnosis. CFS, however is never a real diagnosis. Its more that medical science cannot yet figure out what is wrong with you, when all other tests have come up negative. Medical science does not yet understand what causes CFS, nor how to cure it or even ease its symptoms. It may not even be a single disease, seeing that 'fatigue' is the only unifying symptom, and try to name an illness that does not have fatigue as a symptom! There are, however, a baffling number of theories. A prominent one is that it is an immune system dysfunction. But is it not known whether it is an over-reaction (your immune system continues to battle a virus that is no longer there), or an under reaction (your immune system is unable to get on top of the virus). It could be the root cause is something else all together, and it probably involves many different systems in the body, including the endocrine, nervous, digestive and circulatory systems, and how they interact. Trying to make sense of the scientific theories often does my head in!
Many people do make recoveries from CFS, but they claim a variety of different, sometimes weird and wonderful cures. These include various experimental drug and supplement regimes, accepting Jesus into your heart, getting pregnant, moving to the desert to avoid all mould, taking up yoga and adopting a completely raw food diet.
So what are some of the things I have tried over the past 10 months, out of the vast array of potential CFS cures? My decision making has been guided by a fuzzy matrix of plausibility, accessibility and cost, with the limitation that I only have a small amount of energy to actually leave the house and visit health practitioners.
Here is a list, and my evaluations:
(I have not tried to explain the scientific reasons behind some of my experiments, as it has already taken me 2 months to write this blog post through the brain fog, and I can't remember them all. The reason was probably something I read on the internet somewhere along the way!)
I didn't think my diet wasn't that bad before CFS. I never drank soft drinks, rarely alcohol and never ate national pies or lollies. I'd never had any serious gut issues or allergies, apart from some minor IBS. However I will admit that during my teaching degree in 2015, I did resort to eating a lot of toast, and when I was working in the bush over the summer, I ate a lot of pasta, porridge and lentils. So that was a lot of carbohydrates, and perhaps not the optimal amount of fruit and vegetables. But I'd never thought about my diet before, and I'd previously done 4 track ranger seasons, and never come down with CFS before. Nevertheless, dietary changes have been a big part of my 'try and get well' experiments.
What? Gluten and dairy exclusion
Why? Gluten and dairy are much maligned as evil foods that are supposed to do horrible, inflammatory things to your gut, release toxins and make you sick.
What are its drawbacks? Restrictive. No easy food like toast. No delicious food like cheese.
Did it help? I dunno.
How much of a chance have I given it? I strictly excluded dairy and gluten for a 3 weeks trial, but I didn't notice any difference when I reintroduced them. I tend to not don't eat much gluten any more, just in case it is bad for me, and I try to avoid unfermented dairy products for the same reason (this conveniently allows me to eat cheese and yoghurt - because, hey I've got to have some pleasures in my life).
Was it worth trying? Yeah I guess so, because it does help a lot of people.
What? High fat, low carbohydrate diet
Why? This diet was recommended by a doctor because it stops crash and burn hunger cycles, which reduces overall stress on your body. The diet is mainly vegetables with a liberal lashing of healthy fats and a small amount of protein. Apparently if you eat few enough carbohydrates, your body can enter a state called 'ketosis', which some people on the Internet say is good for you for various reasons.
What are its drawbacks? No cake and ice cream, and it can be hard to be fussy with your diet when you are really sick and all you can find to eat in the cupboard that's easy is weetbix.
Did it help? Yes it has stopped me being so hungry all the time and I eat far more vegetables now. It's a good idea I reckon, but I still have CFS, despite the mountains of kale and litres of olive oil I've eaten over the past year.
How much of a chance have I given it? A pretty good chance, 80% good for over 6 months I'd say, but I still cheat a bit. I try to keep my carbs below 100g a day and I track it on an app called cronometer.
Was it worth trying? Yes
What? Intermittent fasting
Why? Fasting is also supposed to be good for you. The Internet say, and I watched a program about it on ABC's Catalyst. Plus my inactive life has been leading to weight gain, so I assume that a bit of calorie restriction can't hurt.
What are its drawbacks? Sometimes fasting is a bit sad and austere, and it can make the dizziness worse when I'm going through a dizzy phase.
Did it help? Dunno.
How much of a chance have I given it? I skip breakfast and do a 16 hour fast most days.
Was it worth trying? Yeah. It's free. In fact, not eating saves you money.
What? MCT oil
Why? Whilst on a low carb, high fat diet, this oil is supposed to help stimulate ketosis, which some people on the Internet say is good for you, I can't remember why.
What are its drawbacks? Expensive. Tasteless.
Did it help? Not that I noticed.
How much of a chance have I given it? 1 tbsp most mornings for the last month or so.
Is it worth trying? Maybe.
What? Drinking bone broth soup
Why? Home made chicken soup, it cures all, they say. Healthy minerals and things.
Did it help? Dunno
What are its drawbacks? It takes time and effort to make, but otherwise its pretty cheap and tasty.
How much of a chance have I given it? I have bone broth soup every few days, when my mum makes me some!
Was it worth trying? Yep.
What? Fermented foods
Why? Fermented foods are supposed to be super good for you. There's a theory that all ill health stems back to the gut and increasing your healthy gut flora is an all round top thing to do.
Did it help? Dunno
What are its drawbacks? None really, unless it turns our you are allergic to fermented foods, which can be a thing apparently.
How much of a chance have I given it? I regularly eat sauerkraut, kombucha and miso, but I used to do that anyway.
Was it worth trying? Yep, fermented foods are tasty and cheap, even if they don't cure you from CFS.
What? Salty water and lemon juice
Why? To increase my blood pressure because I sometimes experience orthostatic intolerance (wooziness and dizziness when upright).
Did it help? Yeah I think so.
What are its drawbacks? None
How much of a chance have I given it? I drink 750ml most mornings.
Is it worth trying? Yep. It's pretty cheap too.
What? Apple cider vinegar
Why? Its one of those things again, that is supposed to be supremely good for you and fix everything.
Did it help? Dunno.
What are its drawbacks? None really. I quite like it.
How much of a chance have I given it? OMG I have drunk so much ACV over the past 10 months!
Was it worth trying? Yeah, but only if you like it!
Supplements and medicines
What? Antiviral herbal brew from Goulds: Ingredients: Andrograhis, Licorice, Echinacea, Oregano, Poke Root, Long pepper and Guruchi.
Why? “Smash the Epstein Barr virus in the face” (in the naturopaths own words)
Did it help? Not that I noticed
What are its drawbacks? $50 for about a week's worth. Tastes really disgusting.
How much of a chance have I given it? I took it every day for three weeks.
Was it worth trying? Maybe.
What? Eating 1 tablespoon of turmeric a day.
Why? Turmeric is supposed to be anti- inflammatory and all round good for you.
Did it help? Not that I have noticed.
What are its drawbacks? It tastes gross. Except when it's in a curry.
How much of a chance have I given it? I've slugged down a turmeric drink maybe 80% of the days since I got sick.
Was it worth trying? Yeah I guess, its not that expensive in powder form.
What? Intravenous vitamin C and zinc infusion
Why? Vitamin C is supposed to be a strong antiviral agent, especially at high concentrations. A alternative-ish doctor recommended trying it.
Did it help? Yes the first time I had it I felt noticeably less sick, but the effect only lasted 2 days. The second time I was a lot sicker to begin with, and I didn't notice any effect.
What are its drawbacks? $200 a pop! Very expensive for an unproven cure, when one is on a Centrelink income!
How much of a chance have I given it? I tried it twice, perhaps I could have tried it more, but I was put off by the price.
Was it worth trying? Maybe
What? Liposomal vitamin C
Why? Some people on the Internet say this is a superior way of delivering vitamin C to your cells than normal vitamin C, as good as, and cheaper than intravenous injections.
Did it help? Dunno.
What are its drawbacks? More expensive than normal vitamin C.
How much of a chance have I given it? I've been taking 2000mg most days for 3-4 months. I did an experiment of taking 6g a day, for 10 days, which I didn't notice any effects from.
Was it worth trying? Yeah I guess so.
What? Lots of Other supplements: Zinc, magnesium, calcium, multivitamins, co enzyme 10, omega 3s, withania, vitamin B complex, potassium, vitamin d, others. (Lots of dollars of others!)
Why?Supporting my body with minerals and nutrients so my immune system can be strong enough to smash the Epstein Barr virus in the face itself. A doctor recommended some of them, a naturopath others. Some are just supposed to be generally good for you, and some have been recommended by other CFS patients on the Internet.
Did it help? Dunno.
What are its drawbacks? They cost money, and I kind of don't believe in getting nutrition from bottles.
How much of a chance have I given it? I take them most days.
Was it worth trying? I guess so.
What? Astragalus and siberian ginseng tea
Why? Its what they give you at Goulds Naturopathy when you say you have fatigue. I think it supposed to support the adrenals or something.
Did it help? Dunno.
What are its drawbacks? Expensive for tea.
How much of a chance have I given it? I drank a lot of it when I was first sick, but have waned off. I still drink it every now and then, just in case it helps.
Was it worth trying? It tastes pretty nice with chai spices. Can't hurt.
What? Valerian sleep powder
Why? Because I got an attack of insomnia, and a friend delivered me some
Did it help? Yes, I actually think it does help me go to sleep. I take it when I can't get to sleep after an hour or so, and it hasn't failed me yet. Hooray for sleep!
What are its drawbacks? Just more pills, more money, more things.
Was it worth trying? Yes, even if was the placebo effect, I slept properly for the first time in a week after taking it and that made my life so much better!
MOVEMENT, MEDITATION AND STRESS RELEASE
One theory about CFS is that your nervous system gets stuck in the fight or flight response due to too much stress, which means your immune system is suppressed. I didn't think I was overly stressed in the couple of months leading up to getting sick, but maybe I was and didn't know it. I did quite a stressful time during my teaching degree in 2015, but that was 3 months before I got sick. Anyway, a lot of people say they improve from CFS when they learn to chill out.
Why? Chilling out, down regulating the stress response to allow the immune system to work better. Also a coping strategy, and something that people say is pretty a pretty good life habit in general.
Did it help? Yes, I usually feel like a better human after sitting. I notice tension in my body and release it. My eyes feel better. I feel calmer. It helps me with being in the here and now, which is useful, because thinking about the past makes me jealous of my previous self, and thinking about the future is 1. sometimes pretty difficult with brain fog, and 2. pretty useless when things have become so uncertain.
What are its drawbacks? I get epic pins and needles from sitting cross legged! Sometimes when I feel really sick, I just don't want to meditate and just 'sit with it'. I want to distract myself from it as much as possible! (Audio meditations can be easier when I'm feeling more sick, but some audio meditations are read by very annoying people, and you need to spend time finding ones that you like).
How much of a chance have I given it? I try to sit for 20 minutes to half an hour most days.
Is it worth trying? Yes.
Why? To down regulate the stress response and help you heal through gentle, restorative movement. A lot of people claim yoga as an important part of their recovery.
Did it help? Well, actually, I used to religiously go to a yoga class once a week for the past decade and loved it. A few months into CFS I just couldn't do it any more as it was too much effort. It was one of the last out of the house activities I was forced to give up. However, I still do some restorative yoga, which is basically lying on the floor in different positions, and is something that I can do at least!
What are its drawbacks? Active yoga takes a fair bit of energy and muscle strength and moving my head up and down all the time can make me feel woozy.
How much of a chance have I given it? I have done a LOT of restorative yoga.
Is it worth trying? Yes, depending what level of sickness you are at.
What? Medical Qigong
Why? Gentle, restorative movement to help with energy flow and healing.
Did it help? Yes, I actually do feel better most times I do it. It takes a lot less muscular energy than yoga, and is far gentler.
What are its drawbacks? I don't do it when I feel super bad as it does take energy.
How much of a chance have I given it? Almost every day, 20-60 minutes. Sometimes I do it in my imagination. I haven't done it for a while, due to relapsing and feeling tired and cranky again.
Is it worth trying? Yes, plus its free to learn on youtube.
What? Tens machine
Why? I read something about vagus nerve stimulation being a potential treatment on a CFS Internet forum, and how you can achieve that by hooking a TENS machine to your earlobes! I also read that TENS machines can help period pain, which I suffer from pretty epically, so I purchased a cheap $50 machine for the purpose of a dual experiment.
Did it help? Nope, it just felt weird
How much of a chance have I given it? I tired it once on my uterus and once on my earlobes, and didn't notice any difference either time, plus it felt pretty unpleasant on my earlobes!
Is it worth trying? Nope.
What? Chi machine
Why? This is a machine that was lent to me by a friend of a friend. It is a machine that wobbles your legs back and forth while you lie on the floor. I think it is supposed to stimulate lymph flow and stuff.
Did it help? Maybe. I haven't really noticed, but its not an unpleasant thing to do.
What are its drawbacks? Expensive if someone doesn't loan you one.
How much of a chance have I given it? I use it most days when I'm pretty low and unable to go for a walk.
Is it worth trying? If you can get a free one.
What? Annie Hopper's Dynamic Neural Retraining Method
Why? A friend of a friend lent me the DVD package, as she said it helped her with her CFS. Is is a protocol developed by an American lady, Annie Hopper who claims to have cured herself of multiple chemical sensitivities. The process is supposed to work for CFS as well. The theory is that the disorder is in the limbic system, which is part of your brain, and that you can cure yourself through doing neuroplasticity exercises that 'rewire your brain'.
Did it help? Hmm. No. Well, after watching the DVD series and doing the exercises for a little bit, I still have CFS, although I didn't actually do 1 hour a day for 6 months, like I was supposed to. However, I do think its an interesting and valid theory that the disorder lies in the autonomic nervous system. I think the exercises could probably help you cope with having CFS, especially if you are an American and don't mind positive thinking guff, but pretty implausible that they could actually cure you.
What are its drawbacks? I found Annie really annoying and too full of positive thinking guff, so the DVDs often made me feel cranky. The content is 75% testimonials: “I went to Annie's course and was cured in 3 days”, 20% positive thinking guff, and probably less than 5% actual content. I think it borders on pretty dangerous territory, that if you don't believe enough, you won't get better, even though I think believing that you can get better is important. Or that if you don't love yourself enough, you won't get better, even though loving and being gentle with yourself is important. This ignores the fact that CFS is a real disease that deserves far more funding and attention than it has received for medical research.
How much of a chance have I given it? Well, admittedly not one hour a day for 6 months, but I did try saying the words and doing the actions to myself for a little while, and sometimes I still do say some of the words to myself when things get really bad, and it can help me let go a bit of stress about feeling really sick.
Is it worth trying? I think parts of the 'system' would help you cope with having CFS, but I'm pretty sceptical about it curing you, despite of and because because of all the testimonials sounding 'too good to be true'. It depends on your personality.
What? Being true to my authentic self
Why? Many, many CFS self help books and 'how I healed myself from CFS' videos on youtube say that this is the answer
Did it help? No! This idea makes me very very cranky and shitty!
What are its drawbacks? Totally ignores this is a physiological not a psychological illness, no matter how much those two might be interlinked. Makes me very grumpy (see above).
How much if a chance have I given it? Well, actually, I've been trying that one out my whole life, and of course I'm not always doing it perfectly, but hey, I'm not perfect! We don't live in a perfect world! Life is always nuanced and we need to make compromises and work with what we've got. I'm sure I've still got a whole lot of lessons and good and humbling to learn about being a human, but I have never ever ever tried to be anyone other than myself.
Is it worth trying? No comment.
What? Cranio sacral therapy
Why? I read somewhere it might help. I don't really understand the theory behind it, but I do often feel weird in the area where my head meets my neck, and wonder if that is where the problem or inflammation may be.
Did it help? It definitely made me feel something. I was usually wiped out afterwards, but hopefully in a good way. The practitioner was also a good counsellor and that helped me talk about what I was doing through.
What are its drawbacks? It costs money and you have to drive there.
How much of a chance have I given it? 4-5 treatments a few months ago when I could still drive.
Is it worth trying? Yes.
What? Acupuncture / Traditional Chinese Medicine
Why? Support the body to get better on its own, through meridians and acupuncture points and other things that the Chinese have been doing for thousands of years.
Did it help? I didn't notice any effect.
What are its drawbacks? $80 a session, need to drive there.
How much of a chance have I given it? Only two sessions with a nice practitioner, but I didn't notice any improvement, and by this stage driving to the other side of town was a pretty stressful activity for me. I also visited another lady earlier on, who was recommended by a couple of people. She administered acupuncture and some hands-on body work, then prescribed some restorative yoga poses (which I still do). She then told me that my body had told her somebody was angry at me, and perhaps I would like to sort that out. This statement was right at the end of the appointment with no chance to ask her what she meant, and left me feeling half worried about what I might have inadvertently done to someone, and half totally incredulous about her treatment method and skills, which I had temporarily suspended my scepticism to receive. Over time those proportions have changed to mostly incredulous and annoyed, rather than worried about having made someone angry (NB. If this is you, I am sorry, but you need to take responsibility for your own feelings and tell me so we can talk about it, voodoo is so last century!)
Is it worth trying? Maybe.
Why? I thought maybe I could cook the Epstein Barr Virus to death or at least help my body 'detox' or something. Plus, our house happens to have a sauna downstairs, so it was worth a shot.
Did it help? Nope
What are its drawbacks? I find saunas an intense physical experience at the best of times, not least when I am feeling sick and fragile.
How much of a chance have I given it? I tried a few times, it wiped me out.
Is it worth trying? Maybe.
What? Hot baths with magnesium salts
Why? Supposed to relax you and maybe something else to do with the magnesium. Detoxing or something? I can't remember. Its just another one of those things supposed to be good for you.
Did it help? Yeah, baths are something you can occupy your time with when you have CFS, and at least you can't do anything else while you're in them so they force you to relax! I'm still not better though!
What are its drawbacks? None. Oh, wet hair I guess, which is one of the reasons I shaved my head.
How much of a chance have I given it? I've had quite a lot of baths.
Is it worth trying? Yep.
What? Detoxing my life
Why? You know, chemicals and pesticides and things. Bad for you.
Did it help? I've been a hippy for a long time now and I still got CFS! I haven't used shampoo or stinky soaps, and only very rarely deodorant (sorry mum) for over a decade. The only products I use are a bit of eco tea-tree laundry powder (so eco its brown!), eco-bulk dishwashing detergent, hippy soap, hippy toothpaste and hippy sunscreen very occasionally. I drink out of a stainless steel water bottle, eat a good proportion of organic food and I live in a small city at the bottom of the world with plenty of fresh mountain and ocean air. Um, so NO. It didn't help!
What are its drawbacks? Well, sometimes 'chemicals' are difficult to avoid.
How much of a chance have I given it? See above. 10-12 years of being a hippy. BUT, I do still drink tap water! Maybe that's my problem.
Is it worth trying. Well, yeah, most of that stuff is bullshit anyway, and washing it down the drain really sucks for the fishies in the ocean.
Why? This is probably, really my only hope, as it has the best scientific evidence behind it. It involves finding out what level of activity I experience no symptoms at (sickness or wooziness), and staying strictly within that envelope. I can then experiment with increasing it by infinitesimal amounts (under 5%), with the hope that I can one day increase it back to pre-sickness levels, if I avoid overdoing it and crashing back in the pit. Key parts of pacing are procrastination (don't do today what I can do tomorrow!), only finishing half a job, and pre-emptive rest, even if I don't feel tired at the time.
Did it help? I think its my only hope really. I have been intending to 'pace' the whole time I have been sick, but as my body is no longer functioning like it used to my entire life up until now, it is very difficult to know where my invisible limits are. It is very easy to cross them when I am either having a good time with friends, or there's something that really needs to be done (e.g. cleaning up broken glass, collecting the wheelie bin and all the rubbish that blew down the street in a wind storm). Only for the last month have I been wearing a quality pedometer on my wrist that can actually track how many steps I do a day, which is really hard to know otherwise, so hopefully I can gain a bit more data on where the boundaries of my envelope are.
What are its drawbacks? Its boring, lonely, frustrating and non-intuitive. Its requires vast amounts of patience. I need to rely more on mathematics than feel, as it very difficult to know the point when I have done too much. I don't get the feedback until later, or the next day, when I get Post Exertional Malaise (a common symptom of CFS). Accidentally over-doing it without knowing it at the time can cause a crash that will take months to recover from. Although I am now wearing my pedometer to track the steps I do (currently about 1300 without getting worse), I cannot track things like socialisation, using my brain, whether those steps are uphill or flat, stress, or heavy lifting.
Is it worth trying: Yes I think its really my only hope. Its just going to take a very long time, and probably a few more crashes along the way as I learn where my limits are, especially as my limits will change over time.
What will I try next?
There are still plenty of things to try from the plethora of CFS cures on the Internet! What might I try this year?
- Get a test for Lyme disease, just to make sure that isn't a cofactor in my illness.
- Go back to the doctor just to make sure there aren't any other diagnosable diseases we should test for (going to the doctor is a big energetic cost for me, and from my reading, I don't think there is anything else, but just in case...)
- Ask the doctor about any other treatments he has heard of, then go away and research them myself before committing to anything.
- Ask the doctor if there could be a link with endometriosis, and whether I should get tested for this (the diagnostic procedure involves day surgery, which I'm totally not up for yet).
- Grow and juice wheat grass. Why not, its cheap and can't hurt.
- Go back to the cranio-sacral therapist once I have enough energy to organise appointments and transport (too complicated at the moment).
- Continue with supplements, medical qigong, meditation and the other things that might help, or at least don't make me cranky.
- Probiotics (even though I don't think I have bad guts)
- Other supplements I could try but need to research more are: Alpha Lipoid Acid, Lysine, Taurine, Vitamin E, mushroom extracts, NADH, D-Ribose. (I need to plan a controlled experiment to see if they actually make any difference or I'm just wasting money).
- Extreme and disciplined pacing, using my pedometer!
(Oh, and the thought of a completely raw food diet makes my stomach clench in protest; I'm sure that Jesus was a great fella but I do have doubts about his ability to step up and banish the EBV from my cells or resurrect my immune system right now; central Australia is a very long way from my friends and parents, so who would bring me chicken soup if I moved to the desert? (plus my house isn't mouldy); and while getting pregnant and ending up with a helpless newborn baby as well as my helpless sick self to look after sounds like a fabulous idea, its just that being a bed bound grumpy sick person who can't string a coherent sentence together whilst sitting upright doesn't do much for my romantic prospects right now. Thanks for the suggestions though internet! Xxx J)