The Adventures of Anna Jones – It’s way past my bedtime!

Those of you who follow me on Twitter or Instagram might know that I had a party to go to last night. A surprise party no less! I won’t ramble on about how I was feeling. I’m sure you know by now that I am never without my symptoms. Yet it gave me a huge boost to hear that I looked like the ‘Anna Jones’ of old, and people I’ve only seen a handful of times commented on how much more lively and how much better I looked. (Some people are far from keen to hear people saying that they don’t look sick or that they look well, but I like to take it as a compliment each time because I’d really rather not look as bad as I feel!)

Decisions, decisions… I have no idea what one wears on a Saturday night out anymore!

I ditched my glasses and reacquainted myself with contact lenses. I wore a dress because I don’t get many opportunities to dress up properly these days. I even wore a pair of (low-ish) heels. Sorry legs! I didn’t care that I was so sweaty my make up practically melted off my face and my hair lost it’s straightened smoothness. I loved that I’d been wearing shoes long enough to get blisters. I didn’t mind that my ears were ringing when I got home, or that it took an age to fall asleep after so much stimulation so ‘late’ at night.

Happy 30th Birthday Ross!

I couldn’t ask for a better support network. My parents drove me, offered to iron any clothes beforehand, fed me, waited by the phone incase I needed a lift home NOW. My sister walked me into the pub and ‘handed’ me over to my friend. The girls fetched my drinks for me, found me places to sit, checked I was okay, took me for fresh air every so often, panicked if they lost sight of me(!), walked me out when my dad had arrived to collect me and ‘handed’ me back over. I lasted from 7pm until 10:30pm!

I am so much better than I was when my M.E. journey began. If this is as good as it gets, and I get to have a ‘normal’ few hours like that every six months or so, I will be so chuffed.

I am the luckiest girl in the world.

4 – What do you actually do all day?!

Dressed Days

Dressed days are split into two kinds: a) the days that are identical to pjs days but with lovely, attractive slob clothes (I have many!)

The majority of my days are currently A days.

The majority of my days are A days. I now have many comfy jogging bottoms and oversized tops that  are perfect for these days. Apparently it’s not a good look but I love it! 
b) the days when I look a bit more ‘with it’, I’m clean and my hair gets brushed. These days are the best! I might manage a bit of sewing or reading (my current go-to hobbies) and I’m able to spend time online. On the very best days I might manage a little ten minute drive just to get out and about. I can eat my tea at the table with my family rather than on a tray in the sitting room.  

The best days are when I can actually DO things. They are few and far between but that just makes me appreciate them all the more. 

3 – What do you actually do all day?!

Pyjama Days

PJ days are spent lounging around downstairs with my luxuriant slanket ‘cape’. I don’t tend to watch the tele (until my brothers come back from work after 6pm and I have to endure Sky Sports News on repeat!!!) My mum spends the afternoon with me. We just sit and chat and I switch between Purple Time, staring out of the window and hopping on and off my iPad (no not like that!) Social media has been a godsend! I meet my online pals everyday and together we get very busy doing nothing. 

One must have a very good collection of pyjamas if one is going to be a full-time poorly person. (P.S. I can sit cross-legged now!) 

My view. To keep boredom at bay I alternate which sofa I sit on each day. Simple but effective.

If I can muster that little bit of energy to get dressed then I will. Every time. Pyjama days aren’t a luxury for me but a necessity when the fatigue and exhaustion is just too intense. 

It’s unlikely I’ll manage much more than just sitting on these days. I’ll eat in the spot I’ve been sitting in all day off a tray. There will be no shower or reading or sewing. But I try to make sure I stick my head out of the window/front door to get a blast of much needed fresh air. Many of my days could be viewed as dull, but I’m usually much too busy feeling poorly to notice.