M.E. myself and I

I still have days where I resent the fact that this is the level of wellness I have to settle for. When really this is hardly wellness at all.

I wrote a blog post about this back in 2012.. The irony that I still can’t shower every day is not lost on me. Choose smaller goals Anna!

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From 2012. Wellness:

I was asked what wellness is to me when I visited the CFS/ME clinic recently. On a scale of M.E to full health and normality, where am I hoping to reach? I answered that being able to work for a few hours a week, cook my own meals, leave home, live independently, that’s what I will consider to be ‘well’.

In all honesty though, that was my positive answer. If I am really honest with myself the answer is that wellness and healthiness is a return to illness-free life. Why wouldn’t it be?! I want to get to the end of the scale; to full health. I long for the day when I will be symptom free. I want to get through a day without the need to rest or give in to my poorly brain and body. I don’t want to be anything special, I just want to be normal. To be able to nip out to the supermarket or the petrol station, to make my own meals, wash and iron my own clothes, blow dry my own hair, Hoover my own room, do up my own laces…

In reality, I am advised to alter my definition of wellness and healthiness. To alter such goals is a part of fully accepting my chronic illness. Now it should apparently mean getting through each day without having to return to bed. Wellness to an M.E sufferer should apparently be being well enough to see friends, or walk 100 metres, or paint their own nails, or dress themselves…

My goals have changed. My main aim in life is to have a shower and get changed everyday! I wish it was still something that marks the start of a productive, normal day. Now, it IS my day. I suppose my days are split into two halves: building up to having a shower and getting changed out of my pjs, and then recovering from having a shower and getting changed out of my pjs.

For the most part I am happy with my lot. I count my blessings daily. But sometimes it really does suck that wellness can probably no longer mean normality and an illness-free life.”

I seem to baffle some people, because I’m upbeat despite my situation; a situation that they deem to be the absolute pits.

Some don’t know what to do with me because of my attitude. I don’t fit with their preconceived idea that people with chronic illness just need to be more positive; that a change in attitude is all that stands between people and good health.

I’m already positive and upbeat and happy.

So the spiel that they have prepared, always ready incase they meet someone who they deem as in need of their unsolicited advice and unwanted ‘wisdom’, goes to waste.

Confusion then builds – You can be sick and happy?! But…that happiness hasn’t cure her?! Who knew! But then they assume that there must be something wrong with me to be happy with this.

What’s most mystifying to outsiders though, seems to be that I’m not here to find something to ‘fix’ my illhealth. I’m now quite firm on my boundaries around unsolicited advice or the well-meaning “Have you tried…” suggestions.

Yes I have gone refined sugar free, dairy free, and gluten free. I’ve taken hundreds of pounds worth of supplements. I’ve done yoga programmes aimed at people with my particular illness. And you know what? Rest is still the only thing that’s ever made any noteworthy, positive difference to my health.

Some assume that because I’m not looking for input from them about how to make progress or recover, that I don’t want to get better. Strangers on the internet and their audacious messages tell me it’s because of X Y and Z that I haven’t recovered. They don’t deserve more than a couple of short sentences of my attention.

I’m now ten years in to a life with a chronic illness. I have found that it’s best for me to make my peace with things as they are, as best I can on any given day. That’s what is best for me.

I am, despite what others might think, living a life I didn’t dare dream of. Between 2010-2014 it seemed farcical that I would ever leave the care of my wonderful parents, use my upstairs bedroom again regularly, or get to make a start on my guinea pig girl gang.

It’s nowhere near the life I had for 21 active and wonderful years. But I actually wouldn’t change it.

(Please know that this is my take on my own life with my own set of circumstances and symptoms. It will vary dramatically from others. None is right or wrong. No person can ever really comment on whether or not another person should be happy or sad about a certain situation. Of course it all comes and goes as any feeling or emotion tends to do. But for the most part I am so happy with my lot.)

No one should ever use up their entire daily supply of energy. The human body shouldn’t be pushed to the extreme like that.

Healthy people rarely reach their energy limit. You tend to only really see them close to collapse with exhaustion after extreme events like marathons.

Our daily energy supply is far less. So of course it is easier to reach the bottom of it far, far quicker. The vomiting from exhaustion that you sometimes see with marathon runners? I get close to that when taking a shower. So I hit my energy limit surprisingly early if you compare me to others.

But if there’s someone who expects me to push and push until my supply is gone, my response would be why should I, when they don’t?

My energy supply is Less but I am not. I value myself and my body too much to ask more of it than is safe or sensible to give. Why should I use more than is safe for me do so, just because it’s inconvenient to others if I don’t?

I would never expect them to use up their entire supply like that.

Stop measuring us according to your one size fits all energy scale.