Saturday, 20 September 2014

Ask me anything!

There are two types of people-  the ones who will ask me a string of questions so long that I feel like I'm on the specialist subject challenge on Mastermind, and the ones who go out of their way not to 'mention the war'. As I grow older I have learnt to accept people the way they are, and so both ways are fine with me. In general though I don't talk about it unless I'm asked, it takes up enough of my life and when I'm with my friends it's fun to act like a normal human being and have a laugh and get some respite away from it all.

By far the most common question I am asked though is "What do you DO all day?"  People are genuinely fascinated by this, which I find quite funny.  But what you must understand is that the reason that a day alone in your house seems like such a long time to fill is that you are imagining it as a well, healthy person. Things are very different for a poorly bod.

When I was first ill I felt absolutely grim all day and mostly just lay in bed, sleeping or maybe doing 5-10 minutes of knitting. Too much made me feel worse again. There was no reading, watching films etc. the days were long and unpleasant, just getting through them was the main target. The most exciting thing to happen would be getting some food brought to me or a cup of tea. But now, with successful pacing and improvement in the condition I am managing to do more with my time. The trick is to intersperse lots of rest breaks and not to plan too much... and to be creative- don't focus on the 'I can't'. If you can't manage something, see if you can adapt it a bit to suit your abilities that day. Try not to be a perfectionist (yeah right) and try not to have such high expectations of yourself (double yeah right!!)

Firstly, you'd be surprised how much you can do lying down! I am writing this blog post lying down, propped up on cushions in my bed. Most people who know me know about how my mum re-taught me to knit while I was unwell. That is all done horizontally. I couldn't manage the long needles at first whilst lying down but that didn't stop me- my dad trimmed them down for me with his saw!  It was also too cognitively challenging- I combated this by doing it in short spurts, and whenever I made myself poorly with it I got a lecture from my mum along the lines of "you've done too much knitting, you've made yourself ill!" (in a cross voice).  Gradually over time I was able to do more, and learnt to follow patterns and then to crochet. I made presents for people and that made me feel more a part of the outside world again. I won't bore you with the knitty-gritty (groan!) but you can read more  here  if you so desire.The important thing is that if I feel like it I do a little, if I don't then it waits for another day. Even a little each day soon builds up!

Snakes in a hospital bed (the sequel to 
snakes on a plane)

Bed guitar. Like air guitar, only cooler. 

(Guitar became too physical, I am trying the mandolin now instead!)

What else do I do all day? Mostly I am unable to move around too much, and now I have a bed downstairs. The plan was to go downstairs in the morning and spend the day there, as my legs and energy levels aren't up to going up and down the stairs. I planned this thinking I could take my craft projects downstairs or watch tv, going to bed when I needed to without having to tackle the stairs. In practise though, I don't make it down the stairs every day. But when I do, I have my lovely cosy bed to retire to!

I try to pad around the house to keep my legs moving a little, although it hurts if I walk too much, it hurts more if they seize up.  I now have a beautiful garden to think about and keep watered and maintained. I find that spending five minutes a time just hosing things down or pruning a plant keeps things moving forward. When it is sunny I love to lie outside in my bed in the shade, enjoying the fresh air. That is my idea of bliss!

Cold day in the garden.....

Hot day in the garden...

I write. I started my blogs-  I write a few sentences at a time and save it as a draft, adding to it as and when I can manage....I have no deadlines to meet. It helps me to feel like a part of the outside world, and may offer support or a smile to someone out there. It gives me something to do and helps me to express some of the ideas and thoughts that are jumbling around in my head. My other blog is here.I write crochet patterns, it's really challenging and each one takes weeks to complete, but it feels like a real achievement. I also write letters to my friends, this takes a long time so I usually spread it over a few days, especially as writing by hand is difficult with the muscles involved. I also write poetry but only when I feel inspired!

 Then there are puzzles- I think it's important to try to do things that work the brain in order to keep the cells working and developing. I count it as a good brain day if I can do a sudoku and get it right. Unfortunately it is rare, and it's frustrating as I used to do the fiendish ones before I was ill!  I have been gifted a collection of jigsaws, which are challenging both cognitively (the concentration makes my head hurt!) and physically (I have to sit up at a table for this and look- my eyes get very tired and sore and I can only sit upright for short times). So jigsaws are a rare challenge, although I just finished one the other day. They sit for weeks on the kitchen table... but a jigsaw in bed would be disastrous I think.

I love to read and can now read actual books again (yay!) but have to limit myself to little bits at a time. I can mostly follow what's going on but can't read anything too intellectually stimulating. If it's a bad brain day I leave reading for a time when I am a bit more switched on. Generally by the time I finish a book I would struggle to tell you the finer points of the plot, but looking on the bright side this means I can read it and enjoy it all over again in the future!  How I missed my books!

And don't forget- things take much longer when you have M.E. Showers take ages and  there is much resting needed afterwards..... getting dressed takes a while.... and when you add these to all the time needed for resting, there really isn't as much time to fill as you might think. 

SoI have given you examples of all the things I can do, but I don't do all of them every day. On poorly days I do NONE of them! But it's not all about doing, there is also being. I enjoy the little things- the sunlight through the french doors, the sound of the birds, a new flower on a plant, a visit from a friend, an unexpected card through the door.  I meditate- I love mindfulness, it makes me feel calm, peaceful and complete the way I am. It has helped me hugely in accepting my illness and my new life, which now includes lots of silence and long periods in my own company.

Today I woke up at 8am and had breakfast. I went back to sleep. I finished off this blog piece and D brought me lunch (I'm still in bed). In the afternoon I will maybe have a bath and by the time I rest it will be dinner time... I think I'll manage to sit at the table tonight (on bad days all my meals are in bed).  Tonight I'll lie on the couch and we might watch a film, with me knitting away while I watch. A day in the life of me. Despite the pain and illness it's not a bad wee life.

And no matter when it happens, getting a cup of tea will always be exciting in my book.


  1. But I couldn't remember why exactly so I had to read your post again. Iove the quote 'Reading is dreaming with your eyes open'. Reading can also be 'Living load of different lives without needing to move from your spot'.
    Oh gosh - what was the other things that made me go 'Yes!'???
    Oh I know - not being able to retain details of book or films plots. To me this is such a great asset to my life as an M.E sufferer - I get to enjoy the same books and films over and over again hee hee xxx

  2. A great post, I do most of crafting and blogging from bed, I downsized to a mandolin a few years ago and I'm now able to play guitar again, all be it a smaller one, all from my comfy bed.
    Clare xx