I am typing from a functional university style-dorm in the tropical city of Cairns. Much has changed since my first entry. Here are a few things I have done to manage ME/ CFS / CFIDS that have, collectively, contributed to a pronounced improvement in health
Seeing a specialist CFS physician
I went to see Prof Michael Oldmeadow. If anyone with CFS /CFIDS / ME lives in the Melbourne area I would recommend you visit this rare, attentive and brilliant Doctor. He spent two hours with me on my first visit. He then insisted that my partner should come with me for my next visit which he squeezed into an evening slot the week after. When you have been suffering with something you just didn’t understand for two years, being squeezed into the usual seven minute slot, really doesn’t clear much up. Being referred to this highly practical and knowledgeable Doctor (who does bulkbill) was an unexpected victory.
One of the myths Dr Oldmeadow cleared up for me was that exercise is bad for the health of a CFS sufferer. It is true, it knackers you out and you risk being down for a while afterwards but, he pointed out, our bodies are made to exercise and our immune systems suffer without it, as well as our moods etc. I had been staying away from my beloved exercise, thinking I was helping myself get better. He carefully explained how gradual this exercise had to be though, no matter how much you think you can do. I have been careful to heed his warning and have been doing a simple 20 minute easy-going gym session 3/4 times a week. My moods certainly began to improve as I exercised more. He recommends you do something like this at least every other day to really see the benefits. When I have done too much, I soon know about it.
In March, just before being diagnosed, I had the best health spurt that I had had in over two years. I had been on a ten day Goenka Vipassana course in Healesville. These meditation retreats are available free all over the world. You do not look at anyone else, talk to anyone, or read or write anything for ten days. You would think your head would be filled with buried pains and thoughts. I didn't find this, however. It taught me how most of our chatter is detrimental to our health and it was almost like time was suspended – the world had gone on and I hadn’t been worrying on it’s behalf. Learning this technique has helped me ever since and I am much more centred when I sit down to meditate. I aim to do it three times a week for just 20 minutes at a time. When I used to set myself a target of an hour a day, I just stopped bothering at all.
Online CFS course
I joined an online CFIDS and Fibromyalgia self-help course that you just pay for the cost of your books for (you can apply for a scholarship to cover the extra $20 or $30 – which means writing a few paragraphs about your illness.) The course was very simple – you only had to write a few sentences and you shared your experiences with many others in the same position as you. I would recommend this course to anyone as a way of getting in touch with a world-wide CFS community. They helped me learn to set small targets for myself and to not feel guilty for my reduced output levels.
Breathing exercises, learnt as part of a yoga practice, make a huge difference, especially when I am anxious. In my experience, stress is the most effective catalyst for more extreme CFIDS / CFS / ME symptoms and pranayama can calm you down, and your muscles in a matter of seconds.
Working in a gentle and flexible working environment
I have taken on a part-time job at a charity call centre which has got me mixing with people and talking a lot. I get a buzz from being amongst other people and speaking to all kinds of generous people across Australia. As I do other work in my own time, it is very helpful that I can choose my hours week by week and I can change my shifts at the last minute when I am unwell. I have also learned to work differently. I used to be very animated and fun on the phones. I now have to be a lot more level but consistent. I am surprised to discover I can get the same results overall as before I used to be up and down with great days and bored/lazy days. Now I tend to be much more consistent.
Reading things to help me get organised
My computer today let me know that the C-Drive was full and asked me if I wanted to clean out unnecessary files and programmes. It is a good analogy for CFS. When your equipment works okay overall, you don’t check to see what things are taking up your space and energy. When you jam up and can no longer operate as you should, then you need to look into how to clear out the clutter. From this point of view, I have learned what a hopeful story this condition actually is for me. Here are two books that – once American cheesiness is nudged to the side – are very useful as tools for getting more organised and centred: The Seven Habits of Highly Effective People and How To Get Things Done. Both of these might be slow reads but it's making a big difference.
This always amazes me how crucial it is to my well-being. Just a glass of alcohol, a coffee or a chocolate bar can bring the system down. Conversely, a few days eating the super foods such as broccoli, sweet potato, pumpkin seeds, berries and spinach and my health levels climb and climb. I have experimented a lot with different foods and simply sticking as much as possible to the rich antioxidant ‘superfoods’, avoiding meat and drinking lots of water and avoiding fatty things or stimulants makes the world of difference. I also make sure I get as much iron and B12 in my diet as possible as CFS has made me anaemic. I also now try to go organic as a build up of chemicals seems to be a problem for CFS sufferers.
Organic Spirulina for iron, memory and immune system, vitamin C for the immune System, Milk Thistle for Liver support, Cod liver oil for Omegas and immune support and Ginko Biloba for circulation, therefore memory and concentration. These are all purportedly particularly good for someone with CFS. I certainly have noticed the difference that the Milk Thistle has made. I am not sure about the others, but they may well have contributed to my overall health improvements though they do recommend you try to eat the food stuffs over the supplements.
Q uality time with friends and family
As I get more organised, I purposely try to put time aside for family and friends. Since my first blog, I have got back in touch with many friends over the internet and have been able to meet up with friends who are now understanding of an unpredictable situation. There was a period when I blocked out most of my friends as I felt I didn’t have the energy, and was probably a little bit ashamed of how I was. Life has improved no end with the support of my friends.
In all honesty, I don’t know exactly what difference my three colonic sessions have made. It is hard to know which changes have contributed to what. Regardless, I loved getting this done. It feels like you are cleansing out from the darkest pits – which you are. It feels good to flush out pysically as well as mentally. For Melburnians, I would recommend the plush facilities at Aqua Health on Chapel Street
I have built up to yoga on this list, not down, as I consider it an absolute saviour for me over the last two and a bit years. When I was at my lowest ebb and in a pool of confusion, low self-esteem and depression, yoga pulled me up and out. Check out the Yoga Journal for a good article on how it has improved people’s lives with CFS / CFIDS/ ME. I hear time and time again of the benefits, of course for all people but, particulary for those with CFS who struggle with some exercise. It is the holistic yoga practice that includes a philosophy, a way of being, the asanas (postures), pranayama (beathing) and meditation that I think really makes a difference. I would look for a really experienced teacher. For me, that is what has drawn me back to Cairns, to help Nicky Knoff with some yoga publications and to get some tutoring from an exceptional and wise yoga master. Nicky and her wonderful teaching partner, James Bryan, have offered real kindness, and encouragement. Putting yourself in good soil wherever the opportunity arises, seems to be a very good thing.
There are many other personal things that are helping me get better and manage this thing, not least hynotherapy, Cognitive Behavioual Therapy and getting quality time with my ever supportive partner, Al. More on those things later....