In late October 2013 I attended the Lightning Process course with Claire Brooker in London. It was thanks to what I learnt on this course that I was, finally, able to turn a corner and properly start recovering from ME/CFS. At this time I had, knowingly, been ill with ME/CFS for nearly 3 years. I had been forced to give up my career and spent most of my time house bound. Unknowingly, I had been ill for much longer, for the best part of 10 years.
Before doing the Lightning Process course, I worked out a way to manage my illness. What follows below is my strategy. It helped me stabilize my condition and progress, albeit slowly, towards recovery. I believe this approach got to me a place where I was mentally and physically strong enough to handle the Lightning Process and the hard work it has taken using the tools I learnt on that course to make me so much better.
This approach evolved gradually . But if I were back at the beginning of my journey thru ME/CFS, then this would be my checklist. I wish I had known then what I know now. For an A to Z list of everything I’ve tried have a look at my A – Z Remedies page.
- G.P. – YOU NEED A GP WHO IS ON YOUR SIDE
I am lucky that I had an extremely sympathetic GP, who genuinely understood my illness and who went above and beyond in trying to help me.
- CONSULTANT – A NEUROLOGIST
Initially having had a very unsatisfactory diagnostic consultation with a psychiatrist, specializing in ME/CFS, my GP then found me a neurologist who is a world expert in ME/CFS. My overall strategy is guided by, and has evolved with, my consultant. My advice to you is: skip the psychiatrist and go straight to a neurologist.
- REST – MUST BE ‘REAL’
Rest is vital. My consultant’s very first piece of advice was to break up my day into manageable chunks of time, splitting activities up with rest periods as necessary. So I devised a daily routine with a ten minute rest every hour or so with three longer 30 minute rests at my big dip times each day. It has to be real rest – watching television sadly does not count as rest. By real rest I mean neurological rest, the mind truly switching off. Meditation and relaxation techniques help with this. Do not be put off meditation until you have tried it as it really does help.
- PACING – SLOW & STEADY
I’m not going to lie; pacing is, unfortunately, hard. But it does really help you manage the boom and bust cycle of doing too much on a better day and too little on the resulting bad day. First step is to establish your base line: how long can you do a certain activity for without suffering adverse effects? This needs to be set at a sufficiently low level that you can manage it on a bad day as well as on a good day. Once you have established baselines for each of your main activities, gradually increase (by no more than 10% at a time) the baselines of one or two activities at a time. Do not push yourself on a good day to do more. It might sound simple (and this is only a very brief overview of what pacing involves), sadly in practice it is not. But you’ll reap rewards if you can pace efficiently. For more info on pacing have a read of Action For ME’s helpful leaflet.
- SUPPLEMENTS – CHECK YOUR LEVELS
It is no surprise that people with ME / CFS can have a wide range of vitamin and mineral deficiencies. For me, vitamins B, C and D, were very low, and I now take daily supplements of these. Calcium is needed to help the vitamin D be absorbed properly, and magnesium is very good for muscle strength. Individual needs obviously vary and for both health and finance reasons do check with your doctor before embarking on any kind of supplement programme.
- DIET – GLUTEN, DAIRY, SUGAR FREE
For me, a gluten free diet is absolutely essential. Gluten affects me very badly both in terms of digestion and energy. This is frequently the case with ME / CFS and I would recommend cutting gluten out of your diet for a trial period to see what you find. I would be surprised if you did not see some benefit, I cannot stress enough: how vital eating gluten free is for me. I also eat dairy free, and as little refined sugar as possible, as well as avoiding caffeine as I know these are all adverse triggers for my ME / CFS symptoms. Intolerances to a range of other foods have also plagued me at varying times during my illness. I took the York Food Intolerance test to help me work out my trigger foods.
- YOGA – GENTLE RELIEF
I have come to absolutely love yoga. Even on a bad day it helps. From clearing the brain fog to the release from gently stretching tight and aching muscles, ME / CFS really does seem to respond well to gentle yoga. I practice daily for 20 to 25 minutes, and do not feel as good on the days when I am unable to practice.
- NLP – OVERCOME STRESS
Neuro-Linguistic Programming, in layman’s terms rewiring your brain, is hugely beneficial. It helps dampen down your stress responses, which are highly overactive in ME/CFS nervous systems. This is most definitely NOT to say that ME/CFS is all in your head. I can not stress that distinction enough. ME/CFS is a neurological illness and should be treated as such. Put very simplistically, NLP techniques help you to think in a different way. With repeated use such techniques build new ‘neuro pathways’ in your brain (hence the rewiring). This enables you to reduce your stress levels and be more calm, which curbs the continual adrenaline and anxiety surges that keep ME/CFS symptoms going. It might sound complicated but in fact the techniques (visualizations & verbal exercises) are very simple and I have found it to be very helpful. The Lightning Process builds on NLP techniques and takes this approach to a whole new level.
- PLANNING – MANAGE YOUR TIME & ENERGY
As boring as it is, planning is vitally important to ME/CFS sufferers in ways big and small. I tend to work out what big activities (such as outings, social events etc) I have in a month so I can spread them out over that time and minimize negative effects this way. I also start preparing for trips early (so I don’t rush about at the last minute and sap my energy even more). Planning helped me to manage at least some kind of ‘normal’ life whilst on an ME/CFS recovery journey.
- POSITIVE – DON’T WORRY BE HAPPY!
This ties in with what I’ve said about NLP. I know how hard it is with a chronic illness to remain positive; trust me I know, and as silly as it may sound, smiling and being positive does help. On days when I feel down, my ME/CFS symptoms are always worse. Laughter is the best medicine after all. I have happy quotes and images stuck up around my flat to keep me upbeat and NLP techniques really do help here too.
- PRESCRIPTION DRUGS
My consultant and I believe in a holistic approach, which includes using prescription drugs where necessary, especially for sleep, pain management and orthostatic intolerance.
- AND FINALLY
Everyone’s journey thru ME/CFS is different. No one individual’s experience of this horrid illness is the same as another’s. Here I outline, in summary form only, the things that have helped me move along my journey. What works for you may well be different to me. But if you haven’t tried any, or all, of the above then if time, energy and resources allow, it might be worth giving each a try, and you could find it really helps. I hope so.
Please remember though, I am not a doctor and do not pretend to present medical advice. If you choose to follow any of the information I present, please do take medical advice before doing so as I cannot, and do not, take responsibility nor accept liability for any ensuing loss, damage, consequence or situation.