"I wish I had all that time to myself."
"It must be lovely not getting up to an alarm clock!"
"Yes, but what do you actually do during the days?"
In the throes of Chronic Migraine and buggered up neck land, I couldn't work full time. I couldn't really work part time. This seemed to confound my friends and other innocent bystanders. They simply could not understand what I did with my long, long days of slumber. Many suggested hobbies from yoga to baking.
I, always politely, replied that if I was well enough - if I could - I would love to laze around all day learning yoga and getting my baking up to Mary Berry standards. Alas, I would gently repeat, I have a chronic pain condition that prevents me from even doing yoga. "Yes but...." would always come the helpful response.
So, let me lay out a typical day for someone in the throws of Chronic/Daily Migraine or even any continuos pain condition. First, to be totally honest, it's all a bit of a blur. Secondly, people always forget (I'm including myself in this) how utterly exhausting pain is. Remember this and read on....
7am - Alarm goes off. Every Doctor/Physio/Parent tells you that regular sleep patterns are key to managing such conditions. However, you've only just, about 10 minutes ago, managed to drift back to sleep. You attempt to sit up, wanting to maintain good sleep hygiene, you panic that disrupted sleep is a trigger for you. How will you get to sleep tonight if you sleep-in now! But even the act of sitting up makes you feel shaky and it's possible you might vom on the cat that is asleep on your feet. Return to horizontal.
9am - If the medication has had desired effect you will be able to drag yourself to the kitchen. You must eat to maintain stable blood sugar levels after all. You feel like a truck ran you over in the night. The effort of getting to the kitchen and eating is exhausting. Return to bed.
11am - Nope. Bugger. The medication hasn't really worked, it was just a brief respite, the stabbing pain and general body ache is back. You know this is going to be a 2-3 day affair. You will swim in and out of consciousness throughout the days. The main aim now, ironically, is to sleep. If you're lucky a parent/friend will bring food parcels at regular intervals. When you can focus enough to eat, you spend about 15 minutes contemplating the teeny tiny size and texture of rice grains. Isn't it a miracle? Such fascinating thoughts take up much brain space during this period.
2 - 3 days later:
You bravely arrange to meet a friend for coffee. Coffee? Brave? Keep reading. The effort involved in physically getting to the meeting location will be almighty. But you will appear, to all intense and purposes, to look just dandy; a bit crumpled around the edges but no one would guess you hadn't spent the week baking and learning yoga. You will have had a power nap in preparation, put on nice clothes and even brushed your hair. But this outing will probably re-trigger another attack so it's likely days 1-3 will be repeated (see above). But you decide it's wroth it as you desperately want human contact with someone outside the medical community.
You enter Starbucks (nearest coffee/tea place - don't judge). You order a soy chai tea latte and marvel at all the other (seemingly) healthy people milling about. You feel as if you're in the middle a 3D film, the world seems to have an odd sheen to it. You do not feel part of it.
You sit down to meet your friend, so pleased with yourself for making it this far.
"So, what have you been up to this week?" they cheerfully ask.