In a Nutshell: My Strategy for Getting Thru ME / CFS.

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

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

This is my approach to tackling the beast that is ME/CFS. It’s evolved over the last two and a half years when I was (finally) diagnosed and am progressing, albeit slowly, towards recovery. 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.

  • G.P. – YOU NEED A GP WHO IS ON YOUR SIDE

I am lucky that I have an extremely sympathetic GP, who genuinely understands my illness and who’s spent considerable time finding me a great consultant etc.

  • 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. As my GP says, my consultant is The Captain of my Recovery Ship.  (They are both into boats.) 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 RE ‘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 try to have 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 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.

  • 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 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.

  • 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. NO NO NO. ME/CFS is a neurological illness and should be treated as such. Put very simplistically, NLP techniques help to calm you and prompt you to think more positively. With repeated use such techniques build new ‘neuro pathways’ in your brain (hence the rewiring). This helps end the continual adrenaline and anxiety surges that keep  ME/CFS symptoms going. Might sound complicated but in fact the techniques (visualizations & verbal exercises) are very simple and I have found it to be very helpful.

  • PLANNING – MANAGE YOUR TIME & ENERGY

As boring as it is, planning is vitally important to ME/CFS sufferers in ways big and small.  I try 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 helps 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 can help. On days when I feel down, my ME/CFS symptoms are always worse (bit of a chicken and egg situation here, either symptoms or feeling down could come first and trigger the other). Laughter is the best medicine after all. I have happy quotes and images stuck up around my study 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 and pain management.

  • 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. This post outlines, 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.

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4 Responses to “In a Nutshell: My Strategy for Getting Thru ME / CFS.”

  1. Frank Senior February 22, 2013 at 11:12 am #

    This is really comprehensive and so useful. I have a younger relation who has M E / C F S and have passed it on to her. Good luck with it all.

    • myjourneythrume February 22, 2013 at 11:47 am #

      Thanks so much for stopping by and for your comment. It’s early days for me with the site so do stop by again soon when I hope to have more useful content. I hope your relative does not suffer too much. Tell her to never to give up hope. I hope my site can be of some use to her recovery.

  2. Mari June 16, 2013 at 11:07 pm #

    Thanks for your suggestions; I especially liked ‘don’t worry, be happy’ ; because, yes, even if the illness seems not to go away for a long time, as long as one has some good friends that they *feel* great about, & if one has asked themselves what they find interesting and important in life (for me its philosophy of physics) then, I have been quite content reading, listening to music (I found it surprising how new, good music made me feel like life was amazing 🙂 ), or talking to friends a bit. Hopefully, one day, we’ll all have had enough rest and we will be fine to get on with the things we love a bit more! 😀

    It is definitely important to *not worry* … and I think I only found out how to do this after a long time.

    I realised that worry made me feel much worse; so, * for my health, I don’t worry *.

    I am quite lucky with my financial situation at the moment; but I think that even if things got bad, the advice of ‘not worrying’ would still hold.

    • myjourneythrume June 18, 2013 at 2:51 pm #

      Thanks for reading and for your comment. I think you’re so right, worrying is so bad for our health. I’m slowly learning how to stop/reduce how much I worry (using NLP). But it’s hard! I’m glad you liked my post and could relate.

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