Random Thoughts on Healing

"Nothing herein should be construed as medical advice"

There is almost nothing more certain of bringing about a relapse than writing about feeling better. Four weeks of eating foods I normally avoid, in order to get tested for various food intolerances, left me with a noticeable worsening of symptoms: fuzzy brain, lethargy, stiff and achy limbs, and stomach problems. Now that the tests are over and I'm reverting to a wheat-free, dairy-free diet I'm picking up speed again. And I'm now more convinced than ever of the role of diet in treating this disease in some patients.

I'll admit I'm a little slow to catch on. Partly that's because I've tried avoiding different foods in the past with limited effectiveness; partly because there's so much information out there on the internet that I find it overwhelming, confusing, and frequently contradictory. Aside from the merest handful of doctors taking an interest in this disease, patients are left to scrabble around on their own in search of answers. This makes for a very large group of vulnerable people (estimated 17 million worldwide). Many are simply far too sick to use the internet or libraries; many are too sick to make it out of bed and into a clinic; many are just clinging on, burdened with other responsibilities such as taking care of equally sick children; most don't have the scientific background that would enable them to understand the published research papers that shed light on the illness.

A couple of recent readings are driving me forward at present. One is a recent blog entry written by a doctor who has ME, as do her daughter and husband. Dr Jamie Deckoff-Jones is read and appreciated by thousands of patients for her openness and willingness to discuss the disease and treatment that she is trying out on herself. It is worth reading as much of her blog as you are able:

http://treatingxmrv.blogspot.com/2011/03/treatment.html

I look in on the patient forum "Phoenix Rising" from time to time (with thanks to a good friend who encourages my participation). I avoid most of the patient forums, but this thread was brought to my attention and I found it interesting enough to copy and re-read:

http://phoenixrising.me/forums/showthread.php?1346-what-you-need-to-do-and-why

The tests that I've had to date show that I have a "leaky gut" problem (aka "gut mucosal barrier dysfunction") and a problem with fructose malabsorption. Unfortunately I have another 3 months to wait for further test results and my next appointment with the doctor. In the meantime I am adjusting my diet in line with the test results. The more I read the more convinced I am that diet underlies many health concerns. I would encourage everyone with any health problems at all (including mental health) to get tested for food intolerances and allergies, lactose and fructose malabsorption using the hydrogen breath test, to try and figure out if you have a sensitivity to salicylates, and to test for coeliac (celiac) disease – one of the most commonly undiagnosed health problems (it can be asymptomatic but still cause internal damage). Work with a recognized, qualified medical practitioner whenever possible. And read widely!

Feeling Better?

At one time I thought: “if it doesn’t get me back to work then I don’t want to know” when considering a “cure” or treatment for M.E. But in the past two months I’ve picked up around 10% in my overall health – and that 10% makes a big difference.

I can now drive short distances. This means I can go to the library, do some grocery shopping, get a hair cut, and go for some medical appointments without needing to ask for help. The sense of independence this provides is liberating – I am so dependent on others for many crucial aspects of life – and lifts my mood on days I go out.

The question I’m asking myself now – and if you have M.E. you may be thinking it too – is what have I done to feel better? Following are the main variables that have changed in my life in the past four months since moving to Melbourne from Malta:

Less exercise: I no longer need to carry my groceries – either someone else is doing the shopping, or I go by car; I no longer need to do all the cleaning myself; I no longer use stairs on a daily basis; I no longer have cats to clean up after and entertain (I miss them, but that’s a different matter).

Diet: I have been careful about diet for a long time, but have recently made further changes: cutting out sugar and sweet things entirely; cutting out wheat and gluten almost entirely; greatly reducing the amount of carbohydrates (rice, oats, bread, pasta, etc) eaten; reducing the amount of food I eat and eating smaller portions for all meals; limiting fruit to 1 piece a day (or less). I am in the process of getting tested for a wide range of food intolerances, including testing for celiac disease, so expect more adjustments to come.

Climate: Melbourne has a significantly drier climate than Malta, where humidity causes a lot of discomfort for people with ME and MS, in both summer and winter.

Noise: I now live in a relatively quiet suburb where I’m exposed to far less noise from neighbours, traffic, and local construction projects. The level of noise pollution in Malta has reached intolerable levels, and caused me a lot of stress.

There are other differences, but I think these are the most significant. Or it is just in the nature of this disease with its fluctuating symptoms that I happen to feel somewhat better at present. I must still be on my guard: a couple of hours away from home, spending time with another person, will still leave me feeling brain-fogged and drained. Ready to return to work I am not.

Visiting my father's photographic exhibit at the Monash Gallery of Art on one of the hottest days of the summer.