Top Tips for living with M.E.

I’ve never done such an audacious post like this before and I feel a bit icky about it. I actually can’t stand the things – another person, even with the same diagnosis, can never advise someone else on how to live their chronically ill life.

But there were more than a few of you who have asked or said you’d be interested to hear what my personal “Top Tips for living with M.E.” would be.

Please know that I can only share this from my own experience of M.E.

It is with some discomfort that I share this post.

• Get cognitive rest. Even just five minutes here and there of sitting and concentrating on nothing but your breathing.

• Know that you will repeatedly go through The Grief Cycle. Don’t beat yourself up for that. Chronic illness is a big deal. It’s hard. Of course we will struggle with that at times.

• Find the balance with diets and supplements. There may be things that do alleviate some of your symptoms, but when we get so little pleasure from life I refuse to cut out chocolate completely just because it ‘might’ make me a tiny bit better. That doesn’t mean I don’t want to make progress with my health.

• Do not do Graded Exercise Therapy. The PACE Trial that is largely responsible for GET being recommended as a treatment for ME/CFS is surely one of the greatest medical scandals of our lifetime. The draft NICE guidelines have finally removed the recommendation of exercise for people with M.E.

• Work as a team with your body, not against it. Fighting M.E. in the conventional sense that society tells us to fight illness has never ended well for anyone I’ve met in the past 10 years.

• You can do everything right and still get energy dips and crashes throughout your day. That’s because you are poorly! It’s not a personal fault or flaw. Doing everything right will lessen some things but not all.

• You are poorly. I’m sorry, but you are. Frustrations will be par from the course but letting go of comparing yourself to your pre-illness self will bring more peace. “But I used to be able to do X, Y, and Z!” Okay…well I used to be a toddler…things change. You get me?

• Rest. Seriously schedule it in.

• Wherever possible, stop while you still feel able to carry on. So if you’ve just folded a load of washing and still feel like you could possibly maybe also do the dishwasher, allow yourself to stop. It can wait. It will still be there to unload tomorrow! (This is Pacing – I’ve spoken before about how Pacing is a privilege and not something everyone has the luxury of being able to do.)

• Don’t waste money on ‘treatments’ like The Lightning Process. Sorry not sorry. I am very strongly opposed to such ‘treatments’ preying on vulnerable people and then accusing them of not trying hard enough to recover. Get in the bin you dreadful excuse for a human being.

• Delegate wherever possible and accept help. Which I think are super brave things to do. Of course we want to maintain some level of independence but if we kick too hard in an attempt to do everything ourselves, we could lose the little bit of independence we still have. (Again, having help this is a Privilege not everyone has!)

• Be kind to yourself and be your own best friend. It’s not your fault that your body is no longer functioning as you’d like. You’re not going to get it right every time. Nobody does. Go easy on yourself.

• Know that Cognitive Behavioural Therapy (CBT) will not fix your symptoms, only help you come to terms with your new life.

• Be assured that although life will be different and it will be hard, it can also be so, so good.