Life on hard mode...

Where Emma ponders chronic illness.

Well hello, you lovely lot!

Is it summer yet? Here in the North of Scotland, we have had one, yes ONE - whole day of warm, sunny, acceptable weather. We took full advantage of it and drank excessively expensive rosè in the park and managed not to get sunburnt.

Of course, now I’m in bed suffering from the usual overdoing activity; going to the park, tackling a big painting the next day, all the domestic shite and watching too much football. I’m all out of spoons. 🎶

Damn you, PD.

There is not enough air time on how bloody depressing it is for someone with a chronic illness, not to be able to do ‘normal’. The measuring out of energy, micro-dosing activity and even thinking about it can be debilitating. The issue is loss. Loss can lead to anger, resistance, denial and other toes curlers.

You see, having to operate differently from our original blueprint can make you really, really pissed off. The loss of health is a grief that isn’t catered for.

If one gets a curable sickness, then applaud. Happy-fucking-clappy those uncomfortable realities away. Phew, you got better…clap, clap.

If one dies from sickness; dab the corners of the eye, gaze unfocused into the distance and say it’s a shame. Here let me hand you the brochure on how to mourn.

You got sick and are STILL sick?! Ah. Um. How…um…

You should try harder, help yourself, it really can’t be that bad, if you did this or this or that. Have you tried?…

It's a continual feeling, not something you just get over. The loss of your health, the life that could've been, control over your body, certain opportunities, financial security, people who don’t understand. No recognition of the daily fight just to shower, eat, shit. No one mourns our loss. Our lives that can and will never be the same. Chronic means forever.

Perhaps if we lived in a society that valued rest and sleep, we’d all be healthier and happier.

‘OK, Emma, then what do we do?’ I hear you cry.

It’s a two-pronged thing. On the one hand, we sickys need to be more self-compassionate. On the other, the non-sick could use some of their abundant time on expressing compassion, over judgy shit.

Or the more mature approach is: to educate, listen and share stories - on both sides. It’s not just me who is affected by my Parkinson’s - my friends, family and even work clients are all impacted.

So here’s my handy starter guide on how to think about chronic illness.

Chronically Ill

1. You are in no way obligated to do everything a healthy person can do.

2. You can do everything ‘right’ and still have a rough time.

3. Take things one symptom at a time.

4. There is no shame in being on benefits, living at home or not working.

5. Your body is unreliable not you.

6. Be kind.

Not Chronically Ill

1. Saying I can’t do something, doesn’t mean I’m looking for advice.

2. People with chronic illness may suddenly need to take a rest or suddenly cancel plans.

3. Recognise that the person’s illness affects EVERY part of their life.

4. Not all treatments work for all people.

5. Chronically ill people have often lost their careers, homes, dreams and future families.

6. Be kind.

Anyway my lovelies, I’m off to take a nap.

with love

E xxx