Now you have been diagnosed with ME, what now? Part One.

Here is a list of six essential things ( no one tells you ), that you need, to get to sail the good ship YOU, safely through the choppy waters of day to day living.

1:Big Girl / Big Boy Pants: Yup, like a lot of superheros you are going to need to put on the gear. You are not ‘ a Hero’ in the sense of chucking yourself up a mountain, training for the Olypics or giving life saving medical care- those things involve an element of choice ….and how much harder it is to have our body make the heroic bid without asking us first!

You are a Hero in the 24/7 sense of being taken to a place you don’t want to be and didn’t choose to be and forced to make camp and turn this pile of old crappola into gold. It takes courage to do what we do day in and day out: to keep opening your eyes in the morning to a world where you still have ME, and yes, there is still no cure. Taking your meds, rearranging your pillows, taking some interest in the outside world, and not telling everyone who asks you how you are , how bady you REALLY are. In short, keep on keeping on……and if you feel like I felt last year, that Depression has got you by the throat,then you are a Hero for admitting you’re not coping and need help. ( It’s an illness that happens people, NOT a decision to be lazy)

NB: Don’t attempt a ‘Big Girl Bra’ unless you want the straps and a bra cup around your windpipe when you lie down to rest..

2:Know your Acronyms!
So many to learn, so many unoccupied hours in which to do so…
Congratulations! You will now have the time to master a unique new Esperanto that will enable you to connect with peoples of many nations : Spoons , Energy Envelope, crash, flare-up, push and crash, boom and bust , marbles, pacing, pre-emptive resting, Paleo, . Some of it will eventually make some sense over time…and some of it just won’t.

3: Zen and the Art of The Thousand Yard stare- the Professional Patient
So, having armed yourself with an encyclopaedic knowledge of drugs supplements, diets, protocols and all things ME-ish…you enter the Medical establishment. A meeting can go one of 3 ways:

Really helpful and informative session with someone who is an expert in the most up to date research and therapies, which they translate into a workable and inexpensive theraputic plan for you.Wait- is that a pig up in the sky...?!
The medic is kind and wants to be helpful, and is happy to learn about ME from you and support you in any approaches you would like to try. Be supportive of their openness to learning more- remember most medics didn’t learn about ME at medical school.

The Medic barely looks up from the computer screen- they have already decided what they will say to you via a 2 minute speed-read of your notes as you shuffle slowly from the waiting room. They will tell you stuff which is unhelpful/not relevant or downright harmful, and if they sense you are resisting their inappropriate advice, are likely to suggest that you are not fully commited to getting well.

I personally believe a minority of Doctors fall into the third camp, but unfortunately one bad memory tends to overwhelm better experiences. If you sense your Doc is open to being the second mode of medic I have described, be a good patient and don’t overwhelm them with half a forests' worth, printed from the internet.

Make notes for yourself before you go in ( brain fog can often descend under stress…and let’s face it, no one enjoys seeing the Doctor), and keep your conversation focused on specific goals i.e managing your problems with sleep, trying a new pain medication, etc. See a good counsellor if you need to, seeing a counsellor doesn't mean a) you are nuts, or b) the illness is all in your head...
Next time you attend a medical appointment, have your Thousand Yard Stare handy and count to ten, as it is better than telling another adult to ‘ ***k Off!’



So true! Not sure about the rest of the UK but the NHS in Wales has been trying to get doctors to empower patients to be part of their own recovery plan (in all instances, not just CFS). For the last year my Dr has asked the same question after I've described my issue - What would you like to do? He's quick to offer guidance and options but lets me have the final say. It was a bit disconcerting at first to be honest! Now it makes me feel much easier about going to the doctors as I know I'll be listened to and not pushed into anything I regret as soon as I leave the room.

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