Friday, 27 June 2014

Swings and roundabouts

The visual disturbances are worse. I'm struggling to not let it get to me sometimes. Not being able to see properly is very frustrating. It's not my prescription and there is nothing untoward going on that the opticians and doctors can find. Instead it's the good old M.E. reeking havoc I with yet another bodily function. 

It's hard to describe really, as I've mentioned before. It's a bit like looking through a dirty or scratched camera lens (and my glasses are clean thank you very much so it's not that.) It's not quite the same as the aura I get during migraines either although sometimes I take my migraine medication just incase. It's not as simply as just being out of focus but it is as if my brain can't work fast enough to process what my eyes are seeing. There are also squiggly lines (a bit like you used to see on old TV screens when it had lost signal?) that like to dance around at the top and bottom of my peripheral vision. It doesn't seem to be linked to the light sensitivity I get either. I wish I could show you to explain! 

The best example I can give you - even if I have the energy or concentration level to read I have to then overcome this...

In other news, my hair has grown! And without me really realising, which is the best sign because it means I haven't been consciously struggling to wash it myself. That's the only reason I got the chop (back in 2012) in the first place; so I could manage it myself, i.e. I couldn't, so it all had to come off. 

I've even gone so far as to buy myself a hairbrush. Sorry faithful, old, multipack comb. You served me well. And hair actually looks better when you brush it. Who knew?! In the year or two before I got ill I had a bob and I'm well on my way to getting back there. Although I'm sure a style that wouldn't need styling would surely be better with my current energy supply. 

Getting there. I've tamed my hair as best as possible just for you. Aren't you lucky!

My hair seems to grow up and out before it grows down. I have very thick hair that has quite a strong wave to it (what is this a beauty blog!) and so it can look very Afro-esque for a while, much to the amusement of my family. It's almost a year since I 'did a Britney' and shaved me head out of desperation and perhaps boredom or perhaps it was just a moment of madness...Talk about manageable hair! It was great, but it's really not a look I can pull off! 

So I can't really see but soon I'll have luscious, wavy locks again. Let it never be said that I couldn't at least try to see the positives. 

Monday, 23 June 2014

Brain Fog Moments

Brain fog is a symptom of M.E. It's hard to describe which, ironically, could be the brain fog working its usual magic! Basically it means we often can't think straight; feel as if our heads are full of cotton wool; struggle to put the right words into a sentence; have rubbish short term memories...  

A fair few of us on Twitter have been chuckling away at each other's expense by sharing some of our brain fog moments. I thought I'd share some of them here: 

There was the time I made myself a coffee on a plate rather than in a mug 

The time I forgot to put oven gloves on to get something out of the oven

Trying to put a library card in a cash machine 

Putting peas in porridge 

Throwing food in the recycle on bin and putting the cardboard box in the fridge 

Going to put a tea bag in a cereal bowl 

Forgetting your own sister's name so calling her "That girl"

Walking into the lounge with the kettle rather than your mug

Going to wash your hands but forgetting how to turn the taps on

Leaving the gas on after cooking rice...for 6 hours

Putting a dog treat in your mouth instead of the dog's

Putting gravy granules in your cup instead of coffee 

Putting your dinner in the oven but forgetting to turn it on and only realising half an hour later when you went to remove it

Almost taking the dog's medication instead of your own 

Getting in the passenger seat of your car to drive

Putting your clothes on back-to-front

Putting your knickers on over your leggings 

Making a cup of tea without a tea bag

Chatting to relatives on the phone. Completely forgetting about what you were talking about only to find new plans written on your calendar that only you could have written...

Phoning your own number and wonderin why it was engaged

Staring at a pair of knickers with absolutely no idea how to get them on 

Pouring milk or boiling water straight into the coffee or sugar canisters instead of your tea cup

Panicking that you've lost your phone...when you're on the phone to someone 

Forgetting to get a towel out before having a bath and having to do the soggy, cold and naked walk of shame to the airing cupboard afterwards 

Putting orange juice in your coffee instead of milk 

Getting lost on the way to the supermarket despite making the same journey every week 

Getting cross that the landline phone had run out of charge only to be told by your four year old that it was actually the TV remote 

Going to the kitchen for matches. Coming back with the car keys

Turning up to an appointment the day before by accident and telling them you like to be on time

Forgetting how to spell your own name

Forgetting where you'd parked your car and having to ask security for their help

Trying for ages to unlock your car in a car park and getting frustrating that the key wasn't working...only to find it wasn't actually your car

Forgetting your own address when filling in forms and accidentally giving a combination of your last three addresses 

Waking not and panicking that you can't see only to realise you slept with your eye mask on 

Putting the kettle in the fridge

Getting up. Doing your hair. Putting your make-up on. Doing up your sandals. Opening the back door to let to dog out. Realising too late that you had forgotten to put on any pants or trousers! 

Thinking your car had been stolen but realising you'd left it at the shop and walked home

Please feel free to leave anymore you might have in the comments section. We all need a good chuckle! 

Monday, 16 June 2014

Life raft

Sometimes I want to run away. I don't know where I'd go. I just want to hide away from life. I want to run away; to run away from life and myself and my illness. I don't want to be ill and I want to escape this illness.

I want to run away so I'm not a burden and so people don't have to centre their day around babysitting me. My being ill has had such a huge impact on other people's lives. They have to cancel plans, miss weddings, juggle their work day, quit their job... M.E. and I need to be considered constantly, be it with regards to what foods to buy, whether a certain air freshener could trigger a crash, whether or not the heating can be on, which holidays to book... 

Sometimes I feel so pathetic. Like when I'm sitting in the window waiting for a friend to arrive feeling nervous and excited and nauseous and jittery. Or when I get myself in a pickle about what am appropriate outfit would be for a certain outing. I feel so far removed from reality that I don't even know what presents to buy people for their birthdays. 

I feel pathetic when people tell me to butt out of a conversation because it doesn't apply to me. Where does that leave me? Am I to just cease from engaging in any conversation then? Because the only things that applies to me now are related to illness. Not jobs or interviews or mortgages or weddings. My opinion has become invalid because I don't live in the real world. I remember a family gathering a few years ago. Everyone was catching up with each other's latest news and I just crumbled. I had to leave the room. I had nothing to share. Nothing. 

Every fibre, every tendon, every cell in my body is affected by M.E, from nail growth to hair production to white blood cells fighting off a common cold. And I hate the effect that has had on me as a person. I am scared and fearful of the future. But there are positives and I cling on to them. I have learnt to be patient and to not judge a book by its cover. I am learning that I am more than my illness, just as all of us are. I am learning to live for today because good or bad there will be no other day exactly like it. 

I can't run away. And I can't hide either. Sometimes I wonder if this is what it feels like to be drowning; to be so bewildered by the prospect of the long road ahead that it becomes impossible to keep my head above water. So, as advised by a lovely lady via twitter, for now I shall stop trying to swim and just float here for a while letting the... take me in whatever direction it pleases. 

You're my life raft. When my soul takes a battering you all pull me out of the ocean of illness for a breather and a hug and we huddle together in companionable and understanding silence until I'm ready to start the swim again. Even though I'm still so far from dry land you all bob along beside me in the life raft while I get back into my stride, ready for the next time the current gets too strong; ready to fish me out of the water again if I need you to.

We all have our moments and the downs are as essential as the ups. Running or hiding away won't escape anything. So I'm gritting me teeth, leaning on you all and counting my lucky stars that I found you. 

Thursday, 12 June 2014

Blue Sunday - The Upgrade

I still can't quite believe the response I've had for my M.E. Awareness week efforts. Sorry if I sound like a broken record, but I just can't believe it. It almost seems a bit silly and over the top. Are people being serious when they send me such lovely messages or are they having a laugh, at my expense? 

Just as everything was starting to quieten down I got an email. When I saw it was from The M.E. Association I assumed it must be a routine 'Thank you' but as I read it I quickly learnt that it was more than that. In short, The ME Association were asking for my permission to adopt 'Blue Sunday' as their own. A bit like the Marie Curie Cancer Care Blooming Great Tea Party (actually not where I got the idea from) or Invest in M.E's The Big Sleep if you like. They think my idea (which isn't even groundbreaking if you think about it) is good enough to roll out nationally. My little idea. My spur of the moment 'we should do something for M.E. Awareness week this year' idea. (My family and friends have been shocked by this - they thought Blue Sunday was already The ME Association's idea...)

But it didn't stop there. A few emails back and forth and then another surprise. I was being nominated for the JustGiving Awards. Pardon?! I will find out on Friday 20th June if I've been short listed for the Special Recognition award. I imagine I'm up against the likes of Stephen Sutton (google him if you don't know who he is) and so it is an absolute honour to just have been nominated. 

 I'm dumbfounded by all this. 

So my worries about how I'd possibly be able to make 2015's event bigger and better can be forgotten. Within a month of Blue Sunday 2014 it looks like I don't have to worry about next year at all. 

Who knew you could achieve something like this when you suffer so horrendously with a chronic illness?! Gosh if I was healthy I'd be unstoppable! 

Sunday, 1 June 2014

The Year of the Hobby

The year started off okay but then it seemed as if 2014 really had it in for me. Alas, May was much kinder than February, March and April put together! 

For the first time during The M.E. Years I feel I am well enough to actually do something with (some of) my days, other than merely survive until I can go to sleep again. This is good news! 

People are always surprised to hear I don't watch much TV or read many books. I really do spend the majority of my time just sitting. I'm very good at it now and do not get bored with it because I am too busy feeling too poorly to notice. 

But I have tried a few things during The M.E. Years to help keep me sane:
  • Decoupage - I am somehow not all that good at this...
  • Glass painting - I ran out of glass and ideas
  • Baking - well, it's got to the point where everyone just refuses to eat what I've baked because I'm no Nigella
  • Reading - the speed in which I can read a book is gradually getting better 
  • Driving - (sadly this is happening less and less but I am doing other things instead like...)
  • Gardening - I've been pottering around in the garden a fair bit here and there
 And now, sewing! Santa gave me a sewing machine for Christmas (Singer 1409) after seeing how much I enjoyed making my little clouds and completing the craft kits from Clara and Macy.

Thank you Santa!

So after a few unsuccessful attempts I finally managed to start sewing properly on Saturday 24th May! 

I of course have to have rest breaks and the 'exertion' of measuring, cutting and concentrating somehow leaves me feeling as if I've just taken part in some torturous cross country event like I used to have to do at school. Urgh! That's the hardest bit; the measuring and cutting. And then getting the pressure right on the foot peddle as the muscles in my legs are far from their best. 


I cannot tell you how good it feels! I was parading around the house with my makes showing them off to anyone and everyone.

It actually makes my visual disturbances much worse as my eye muscles are getting a workout but I feel I can cope with it. I just have to be careful when cutting things out as the lines like to dance across the material! For some reason I've come to hold my breath while I'm concentrating. I think my brain thinks it'll help with the tremors somehow. So I have to override Mr Brain! It happens when I'm driving though so I've no idea what my brain is playing at.

Of course it makes the nausea worse too; this apparent exertion. But I know my body and that is 'normal'. My symptoms become worse whatever I do (seriously) but I cannot give up on life because of that. If I did, well that would be no life would it? I'm bending over backwards to mould my life around M.E. because that seems to be the only way for me to have some kind of life. 


The trick is to not push too hard or get carried away. Easier said than done. For me the one to watch out for is the 'itchy brain' whacked-on-the-back-of-the-head-with-a-shovel feeling. That's when I know I've gone to far. I'm now rather good at stopping before it gets to that point, if I do say so myself. Yes I am ill 24/7 but I'm ill whether I sew or not. It's the severity that alters. So I choose to take advantage of those small windows of decreased awfulness and sew for a couple of minutes at a time. 

It's balance. And I'm finding it okay at walking the tightrope the moment. *Cue horrendous setback/relapse because I've actually misread my body. Novice! 

In other news :- I have a cold! It's perhaps only my third in nearly four years (I used to have them none-stop when I was a Normal.) It's a good sign in my eyes. It means my immune system is finally stating to lower its defenses to those of a regular human being.