Making It Easier

I have read a blog post this morning from The Optimum Health Clinic.  It describes the different ways we can approach Discipline in our lives, to help us towards recovery. (See link)
I know I have been all three of the kinds they describe over the last 25 years. I have gone all out and filled my days with lists and rules, managed a timetable, kept charts and diaries for what I do, eat and how much I sleep every day, trying to find clues and answers as to what is going wrong and how I can change. That was me in the early days of this illness. Back then with so little practical help from outside, it seemed the best way to try and understand it for myself. It didn't work. I tried to give myself regular timetables. Forced activity and rest times only ended up giving me what I didn't need when I didn't need it.
I have also been an 'all or nothing' recoverer. In these times, unlike suggested in the blog I have listened to my body on different days. If I wake up feeling great, I go out, enjoy the freedom, party, exercise, socialise. And you know what happens then, I feel awful for the next few days, take it as my illness just being a bit relentless and take another cue from the  next morning. Which might suggest lying in bed, asking someone else to make my breakfast, falling asleep in the afternoon. All or nothing has been very close at hand sometimes.
Then, with so much experience and so little progress over the years I have also become one of the ‘I have no self-discipline at all, I can’t make myself do anything ever’ recoverers. This is a difficult one to put into practice as it needs a lot of self-doubt. But when an illness pushes you backwards and backwards, after you've tried so hard to keep going, there is sometimes barely any other route. I would have this approach in between all the others, whenever I felt lousy, it wasn't just the illness anymore, it was my fault, I couldn't follow a timetable, or rules, neither was I self-disciplined enough to get out there and do what I had to do.
So I have had an interesting relationship with discipline over the years!
Making it easier has been for me, finding a way of combining all three. On good days I don't go full out and wear myself to the bone, neither do I follow rules and timetables, I have a few options that I know I can do during the day, I also have a long-term goal setting list, which I can pick from when I'm feeling well enough. So good days give me opportunities to pick from these options and find an easy compromise. On bad days I know I cannot blame the illness, neither can I blame myself. It is usually, very predictable circumstances that have led me to a bad day. For the last ten days it has been my cold and sore throat. An external device, having nothing to do with the ME, just unlucky. Yes I am more debilitated by it than others might be, but I am more debilitated by everyday life than others, so that's hardly surprising. I learn to enjoy my bad days, give myself treats- like favourite films, new DVD box sets, or downloads from LoveFilm! I also let the food slip a bit, and eat a few organic pizzas and puddings with ice creams.
Learning to smile through good days and bad has become my discipline, letting a few tears come if need be, finding strength when I have only enough energy to lie on the sofa during the day and do a legs-up-the-wall yoga pose before bed is my discipline. Don't believe you have to follow rules or scripted health plans to be disciplined, be your very good self!

So Many Options

Because most health authorities have very little proven treatments for ME, it is usually up to the patient to go it alone. With a little guidance from the GP or friends and the internet we delve into our pockets and go private!
So where do we go? Over the years various complementary therapies have appeared throughout the world as treatments for ME. Some are more well known, Mickel Therapy, The Lightning Process, to name but two. Most are clouded in mystery to prevent word getting out and losing money on actually providing the service. Where Adrenal Malfunction is sited as the reason for ME, there are Neuro-Linguistic Programme based courses, as well as Emotional Freedom Techniques. Some of these have larger success rates than others but it is difficult to give numbers- about 30-40% recover from just using these options, some actually regress, during the course or afterwards and some stay pretty much the same. With 60-70% chance of me handing over £600-£1200 with no real comeback and a large debt on my mind, I decided against these options a long time ago.
My journey away from the NHS, on the advice of my GP, began in 1993. I visited a complementary medicine practice, which ran studies whilst treating patients (The Centre For The Study Of Complementary Medicine). This is where my Candida was diagnosed and unfortunately we discovered that until this had abated I was not going to absorb many digestible(!) supplements no matter how many pills I downed (oh, yes I was rattling at one point!). A possible leaky gut also explained the toxins which seemed to be swimming around my body. (This physical stress could also have explained the increase in my Epileptic seizures at this time.) I was offered supplement drips of Vitamin C as an alternative, but as it took so much effort to get to the clinic and my seizures began increasing even more, this was cast aside.
Over this time I saw an NHS psychiatrist, as I did feel very alone in my struggles, but handled it well and certainly offloading everything once a month was not a bad thing.
A few years later I saw a private nutritionist. We cut out even more of the candida feeding foods- namely all dairy and raw vegetables (I still don't eat cheese)- I used Aloe Vera drink to heal my stomach lining and more probiotics, this time in doses never imagined before. This seemed to work and I have been improving in that way ever since- as you will know I am now eating occasional muffins (and had a piece of Jubilee victoria sponge!).
I have had so many options to choose from and having done so much reading about the recent research at Newcastle and Miami Universities, in particular, I decided a full-rounded approach was what I needed. So those that just tackle adrenal fatigue or digestive problems, for example, were not for me. At the end of last year I had gone 12 months with only 3 seizures, all of which could be put down to obvious abnormalities in my life, so I was finally getting good control of my Epilepsy. Just going on holiday, or having a stressful week would bring on a few seizures before, which would totally upset my ME recovery progress and other than sorting out the Candida our focus had been the Epilepsy for a few years. This gave us hope that we could start to tackle the ME again as a separate issue and really get to grips with it.
In January this year, after a Christmas holiday of research, my husband and I decided on starting by myself and slowly using more tools as I improved. I began meditation every day and also regular gentle yoga. I started using The Gupta Programme (link) in late March, when I had found a stable ground and was ready to start climbing again. This programme uses ideas similar to The Lightning Process, but gives a much bigger picture and most importantly recognises the physical limitations of this illness, also encouraging careful pacing and meditation. ME is a physiological condition and although The Gupta Programme works with the theory of the brain controlling the body, the understanding is that these are unconscious physical patterns, started and repeated, just as a baby starts and continues to breathe as it enters the world, from the limitations and physical symptoms of the illness and original virus or physical trauma.
I am now also working with The Optimum Health Clinic's 'Secrets To Recovery'(link). This offers advice on specific supplements to take and where to find them, also advocating meditation, yoga, EFT, it has a fully researched guide to pacing, and it has a whole host of recovery stories- ideal for a bit of motivation on those not-so-good days.
So, currently I am spending less money than I might have done and feel I have a fully-rounded approach to my recovery journey. It has been difficult finding and choosing my options, but I have re-started that journey and intend to continue.

A good guide to various complementary options is here at the Action For ME charity website.