My Strategy

My Journey thru ME/CFS has had its twists and turns. Photo by Jess B.

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.

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18 Responses to “My Strategy”

  1. donna painter June 22, 2013 at 4:50 am #

    Thank you for posting. Very informative and helpful. I have friends who suffer from ME and I’ll be sharing this post. Some of the tips you recommend – organisation, relaxation – would be beneficial to most people. Good luck with your journey and keep well x

    • myjourneythrume June 22, 2013 at 7:57 am #

      Thank you for reading and for your lovely comment. Please do share the post, if it can help others then that is great. Jx

  2. RunGirl82 July 2, 2013 at 11:42 am #

    Your strategy seems similar to mine and what I have found to work well for me. I have had CFS/ME for 3 1/2 years. 7 months of that was bedridden. The two best things I did (unbeknown to me at the time) was going gluten/dairy free, and therapy… I started a blog just recently which explains my opinion on it a little more if you’re interested 🙂 I hope your recovery is going well. I’ve just recently gotten to a point where I can begin some form of exercise again – and I’ve been focusing on a balance between rest, nutrition and general activity during my day in order to keep the balance. The method has worked for me so far, thankfully. 🙂

    • myjourneythrume July 2, 2013 at 12:07 pm #

      Thank you for finding and reading my blog. I shall definitely check yours out. It sounds like your strategy is v similar to mine and more importantly that it is working for you, so pleased to hear you’ve progressed enough to exercise a little. What exercise are you doing? I manage a little very gentle yoga most of the time. I find it very soothing. Therapy is something I think I should look into, sometimes I really feel talking to someone about it all would help. Hope you keeping feeling stronger day by day. Come back soon to my blog 🙂

  3. RunGirl82 July 2, 2013 at 12:10 pm #

    You’re most welcome to contact me any time you like – I’d only be too happy to chat with you – and you’re right, having someone to talk to who ‘gets it’ makes a world of difference. All the best to you 🙂

    • RunGirl82 July 2, 2013 at 12:15 pm #

      Whoops, I hit send before I finished LOL

      I’m doing some walking now – but managing something more than the pathetic few minutes that left me in bed for 2 days afterwards. I am a former elite sportsperson, and was always extremely active… the change in lifestyle was a massive struggle for me. And it took a lot of work to get to a point where I could accept it and let it be!

      There have certainly been markers/changes that seem to have brought about small jumps in my recovery. I am not recovered sadly, and have had to go back to study to retrain in a new line of work, but I’m getting there. 🙂 I feel that I have taken another massive shift in my health for the better upon going gluten and dairy free. It really does make a difference. I’ve also enlisted a few techo things that have been really helping me out.

  4. RunGirl82 July 2, 2013 at 12:43 pm #

    I’m sorry! I did reply to your message on my blog aswell… but it appears to be eating my responses! I will get a response up there as soon as possible!

  5. Trisha August 12, 2013 at 1:07 am #

    Sounds like a very well thought out strategy. I would probably be feeling better if my recovery efforts were more organized like yours and less haphazard!

    • myjourneythrume August 14, 2013 at 10:14 am #

      It reads more coherent than it seemed at the time of piecing it all together! Haphazard trial and error seems to be the norm with MECFS.

  6. dawnhosking September 10, 2013 at 9:50 am #

    Sounds very similar to mine and like you I wish I had known all of this earlier. A great resource for many 😉

    • myjourneythrume September 10, 2013 at 10:08 am #

      Thanks! I so wish I could turn back time and start my recovery with all the knowledge I have now. But then again if I could turn back time I’d go back and not get sick in the first place!

      • dawnhosking September 10, 2013 at 10:21 am #

        Yes, if only that were possible. At least we have all of this knowledge now as it is so difficult when you are having to work it all out for yourself. 😉

  7. Laina April 12, 2014 at 10:19 pm #

    I appreciate your approach and your generosity in sharing it. It can be scary to get negative feedback on the healthcare methods you personally find helpful. So I appreciate your courage.

    I have found Pilates to be helpful for me but I have never tried yoga. I am interested in some of the links you provide here on your site for fatigue fighting yoga.

    I also have food sensitivities. Soy, gluten, and corn are the big ones for me. I have seen a big improvement since getting off those. (Sugar is hard for me but I try). They say that if you do not heal your digestion you simply will not get better – our guts are our key to health. So I have been making this a priority.
    Hands down the biggest thing that I find helpful is homeopathy and natural supplements. My practitioner has literally saved my life on more than one occasion and the difference of being on a good remedy never ceases to astound me. But I do feel that not all practitioners are created equal. I have a really good one.
    I appreciate the suggestion to find a good neurologist.
    This is a good post! Thank you. I am going to read your a-z list next.

  8. Louise Baker October 5, 2014 at 8:32 am #

    Your points are very useful, so thank you. I am planning a 5month world trip with a close friend who has ME, are there any additional tips you can give me to best support her during our travels, ie how to fit in rest time without her feeling I’m mothering her?!!

    • myjourneythrume November 18, 2014 at 9:20 am #

      I am very jealous of your round the world trip! Sounds amazing! Your friend is lucky to have someone who is thinking of her and her illness. I’ve written a few posts about travelling with ME which might help you and your friend. You can find them here: https://myjourneythrume.wordpress.com/category/strategies/travelling/ I guess my basic advice would be to let her guide you but to factor in rest/ quieter days so that she doesn’t continuously push herself to keep doing things as that could wind up in her crashing. Good luck, have an amazing time and let me know if I can be any more help.

  9. crazyblondechick February 15, 2016 at 9:02 pm #

    I’ve recently been diagnosed with ME and this blog has been very helpful for me. I’ve been feeling not right for almost three years now, with things getting quite worse this last year. I come home from work and can’t do much other than lie in bed and even then I am uncomfortable and can’t focus on anything.

    I am going to look into the lightening process because I’m at my wits end and really worried about it progressing further. I am also going to try out a paleo diet because I do have an unhealthy relationship with sugar and carbs that is probably not helping.

    Before things got bad for me exercised regularly and yoga was my favourite so I am going to try and head back this week.

    It’s been hard to find good genuine blogs talking about this illness, this has been a big help to me.
    Thank you!

    • myjourneythrume February 15, 2016 at 9:07 pm #

      Hi, I’m so sorry to hear you’re ill but really glad to hear my blog is helpful to you, that’s my reason for writing it so I’m glad you’ve found it. Phil Parker, the guy who developed the Lightning Process has written several books which are a good starting point, An Introduction To The Lightning Process, The First Steps To Getting Well is where I started and what convinced me it could help. And it did help me enormously. If you have any questions feel free to email me, I’d be happy to help any way I can. Jess

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