The roller coaster that is M.E.

Make it Stop

Oh no...not again. 6 am. Head excruciating, stomach swollen. A ‘foodover‘. Where are the pain killers? Okay, taken. Will try and meditate and hopefully be lucky enough to get back to sleep. Maybe when I wake up again the pain will have gone. What was it this time? Have no idea. Did have a couple of sips of tonic yesterday, was it that? All these diet restrictions. Still so many reactions. The more I cut out the more sensitive I am. Should never have started.

8.30 am. At least headache has eased but still can’t get up. Limbs plastered to the bed. Hungry, maybe have something to eat. Not enough energy to make something and even if I did, not enough energy to eat. Can’t sleep anymore but can’t move. PLEASE MAKE IT STOP.

More meditation. It might ease. It’s only temporary. It will lift. 10 am. Manage shower. Day could still be okay. Plenty of day left. Will get ready and do a couple of jobs, then have another lie down, then maybe can do something nice later. Jobs done. Breakfast made. On sofa. Oh no...feel awful again. Maybe try some more meditation. It’s only temporary. It will lift. 11.30 am. Try and read a little bit. No can’t manage. Try a bit of TV. No can’t manage. Try some more meditation. PLEASE MAKE IT STOP.

So tired. 2.30 pm. Must have fallen asleep. Never mind. Maybe it’s recharged me. Will have something to eat and then try and go for a walk. Excellent, left overs in fridge, no preparation needed. Will try a bit of TV. Oh no still feel awful. Need to lie down again. Try a bit of reading. No can’t manage that either. Will try some more meditation. PLEASE MAKE IT STOP.

5 pm. The black cloud is lifting. I can manage the TV. The relief. It’s going. I may be okay tomorrow. Hope so, I really hope so.

Make it go on forever

I’m going to see my best friend! I’m going to see my best friend! I’m going to see my best friend...! Focus. 9 am. Get ready using minimum energy. No distractions. Yes, want to look fabulous, obviously. But no do not want to waste precious energy. Saving it. All of it. For fun. For laughing. For escaping. For a magic moment. 10.30 a.m. Rest for a couple of hours. 1 p.m. Meet in town. Look like normal girl, okay woman, on a Saturday. Meet best friend, lots of hugging and laughing. Go to favourite cafe. Don’t care that can only eat dairy/gluten free. Don’t care that can only have 2 small glasses of wine. Don’t care. This is the most precious moment of the week. Can lose myself in the moment. Can almost forget I have so many restrictions. Am going to make the most of this moment. Am going to savour every last second and every last sip of wine. MAKE IT GO ON FOREVER.

We chat, we laugh, we chat, we laugh. It’s wonderful. Talk a bit about M.E. but talk about so many other things too. Put the world to rights. Like we did before. Like we will do after. We are in a bubble. The best friend bubble. Almost like lovers. No one else exists. We are consumed by our gossiping, analysing our tales of woe, laughing at girl on next table, laughing at ourselves, laughing at life. MAKE IT GO ON FOREVER.

We leave a little bit tipsy. Two small glasses of wine is now a lot. We are giggling more than before. 'Shall we just pop in here?' Both buy piece of jewellery we definitely don’t need. But so much fun. They call it ‘Shrinking’. Shopping and Drinking. So much fun. MAKE IT GO ON FOREVER.

Oh no, it can’t be that time already. Time to go and lie down. Time for the bubble to burst. But it was a fantastic bubble...

I wrote this a while ago and you know I think the 'make it stops' are getting shorter and less frequent. I am moving forward, slowly but nevertheless forward. I like forward!

I dedicate this to my best friend for working round my energy timetable and ALWAYS giving me fantastic bubbles. xx