A Morning With ME

Wake up. Stretch out your ankles, try not to scream. Hide under the duvet, assess the pain. How would you rate the pain on a scale of 1 to 10? F*ck off, you can’t give pain a number. Take the painkillers you left on your bedside. The co-codamol not the paracetamol. Scroll through social media as you wait for it to take effect. It does not. Continue scrolling through social media. Realise you should have eaten before taking painkillers. Search bedside drawer for food, eat the half-squashed oat bar hidden there. Scroll through more social media, jealousy about other people’s swanky lifestyles building up within you.

Stand up: you physically cannot wait any longer to complete this step. Push off the side of your bed and let your feet take your weight. Hold back the scream. Where would that fall on the pain scale? Pull open the door, and walk to the bathroom. Despite each step making your feet feel like they’re on fire, you have to keep going. Open the bathroom door. Pull down your pyjama trousers, sit on the toilet, do your business. Reach forward for the toilet roll. Ignore the searing pain in your back. How would you rate your pain? Remain seated until the pain dies down: there is no point trying to stand while your pain is above a 10 on a normal person’s pain scale. Flush, and wash your hands. Dry your hands. Return to your bed. Try not to scream or break down in tears on the way.

Sit on the edge of your bed. Consider going for a shower, dismiss the idea. Spray dry shampoo in your hair for the sixth day in a row. Contemplate getting dressed, pull on a dressing gown instead. Force your legs to take you to the kitchen. Pick up the kettle, put it in the sink. Turn the tap on, and fill with water. Turn off the tap. Realise it is too heavy for you to pick up. How would you rate the pain in your wrist? Stifle a scream. Tip out some of the water. Pick up the kettle. Put it back on the stand without twisting your back. Click the kettle on.

Take the milk out of the fridge. Get a mug from the cupboard. No, there are no mugs in the cupboard because you’ve not washed up. Take a mug off the side and rinse out with water. Put teabag in the mug. Pour in the water and milk. Stir with a knife: there are no available spoons. Put the tea back in the fridge. Shit – no, put the milk back in the fridge, not the tea. Close the fridge.

Scan kitchen for food. Put bread in the toaster. Take plate out of cupboard. F*ck, back pain has seared again. Sit down. There are no chairs in the kitchen: sit on the floor. Your tea is out of reach on the side. How would you rate your pain this morning? Hold back the tears, you don’t want to cry.

Stare into space as you wait for the pain to subside. You wonder if you should call the doctors. You know they’ll dismiss you, so you dismiss the idea. POP! You look round for the noise. You’d forgotten about the toast. Reach out and take hold of a drawer handle. Use this to pull yourself up. Something cracks, it isn’t the drawer. Your knee? Your hip? Your shoulder, perhaps? It all hurts.

Take the butter out of the fridge. Wipe the tea-knife on your shirt and use it to butter the toast. Cut the toast in half. Take tea and toast to the sofa, and sit. Turn on the television. Put on a crappy daytime television show you don’t have to concentrate on, and eat half a slice of toast. Nausea creeps up within you. You look at the remaining toast, and can’t stomach the thought. Put your toast on the coffee table instead.

Open up emails on your phone. Scroll through the junk until you find one from the pharmacy. They have cancelled your prescription. Why? Do not throw your phone across the room. Write a reply to the email. Delete the curse words from the email. Send the reply. Pray they sort it without you needing to phone someone, only for them to put you on hold for two hours before saying “actually you need to call x instead”.

Close your emails, open up your text messages. Read one asking “How are you?” Consider sending an honest reply. Type ‘I’m fine thx’ instead, add some kisses, and press send.

Turn off phone. Watch the mind-numbing breakfast television. Pick up your knitting. Do three stitches. Give in to the pain in your wrists, and return to simply watching television.

Notice pain in a new location. Categorise this pain – nerve pain, muscle pain, no-idea-what-the-hell-this-is pain. It’s the third. Open Google on your phone, search for what it could be. Come up with a myriad options. It is probably just the ME, or the FND, or one of the half-a-dozen other chronic illnesses you already have. On a scale of 1 to 10, what is the likelihood of a doctor taking your new pain seriously? Minus two.

Check the time. Calculate that it is two and a half hours before you can take more painkillers, which haven’t done anything in the first place. Force yourself to get up. Allow yourself a small scream.

Put your heat-up penguin in the microwave for one minute. A hot water bottle requires a full kettle: that isn’t happening. Hold onto the side for balance as the minute passes – a migraine is coming. Take the penguin out of microwave. Return to the sofa, place penguin on the worst area of pain. If you had it on all the areas of severe pain it would need to be the size of an actual penguin.

Watch more television. Healthy rich women chat about how hard their lives are. What a load of crap. Turn over the channel, onto some random antiques programme. You don’t particularly like antiques. You couldn’t care less what an old vase cost. The migraine is coming, though: you can feel the throbbing in your head grow, your vision begins to swim before you, spots of light dance across the room.

Close your eyes. Let the television noise fade into the background, the faint illusion that you’re not completely alone. You won’t sleep, but at least you will get some pain-filled, unrefreshing rest. It’s the best you can hope for.

On a scale of 1 to 10 – how could that system possibly quantify this pain?