How normal do I have to pretend to be today?

Hiya loves.

I just wanted to put some words down about my health (again!)

I got up this morning after 13 hours in bed feeling like I'd been hit by a bus. The combination of Fibromyalgia and CFS mean that even a huge amount of sleep isn't refreshing. I was only awake for 7 hours yesterday then had to go back to bed because I was exhausted. It used to be very rare that I would feel sleepy, rather than just weak, but feeling I can barely keep my eyes open and have to get to bed NOW is happening more and more lately, I can only assume because of the worry of my benefits appeal.

I got up, went to the fridge for some cold water as I was parched and said to myself 'How normal do I have to pretend to be today?' The question took me by surprise because it's so true, and then I thought 'What commitments do I have today? Can I be myself or do I have to put a front on?'

I was trying to think what today brings me as I stared without looking at the contents of the fridge until I remembered what I was there for - water. As I closed the fridge door I saw the form on the door and remembered I have a half hour long phone interview at 2pm to talk about how CBT can best help me.

I don't know what's worse - having to pretend I'm OK or having to talk at length about how things really are. Both are extremely draining.

It's got to the point where I crave my own company. After hubby goes to bed I enjoy the silence. I enjoy not having to answer his questions and not having to be present to fill him in on all the bits of tv he's missed. He plays pc games all night, but expects me to be 100% focussed on whatever's on tv so I can fill him in with the bits he missed when he was off killing monsters. It's an intrusion I could do without, but thankfully we have Sky+ so I can rewind so he can see what he missed. How present am I in anything? Not very. I withdraw into myself more and more and shut off my ears so I don't get overwhelmed. I love science and wildlife shows and can just about concentrate on the more technical stuff (even Brian Cox, whose programmes I love) but combined with James's commentary over the top (he's a total science geek) I just shut off. He knows now to get any conversation out of me the tv needs to be off. It's lovely to be able to think and talk without struggling to remember what I said half a sentence ago.

Having to think for long periods of time physically drains me, as was proved when my mum and step dad came to stay a couple of weekends ago. My mum talks constantly (and I mean without end, unless she's eating, and not always then!) and by 9pm on both nights I was almost crying with fatigue from having to listen to her all day long. It feels like I'm under assault. I can see why my mum talks loads to me - my step-dad is deaf so she has no luck with him! I think she saves it all up for when she sees me :)

Being with one friend at a time I can cope with, so long as there are no distractions - no tv, no music, no laptop in front of me. When there are distractions I lose track of the conversation - both mine and theirs. Being with a lot of friends doesn't tend to happen so much now, but when it does it's an assault on my senses and at some point in the evening I'll have to take some time out to decompress, even if it's only 5 minutes in the loo to rest my brain.

Being outside, in town with a friend, or in the supermarket with my husband drains me. I try to show no signs of weakness or illness when I'm out, and that's a strain in itself, but it's primarily sensory overload which tires me. Loud noises, people moving past me, strong smells - they all add to the mix and make me feel like I want to scream.

It's horrible to admit but my favourite kind of day is where I have the least possible face to face interaction with other humans, no expectations of me and nothing planned. I only feel stress free when I can do things at my own pace without anyone else relying on me or hassling me. If you'd have known me at my bubbly best you'd have never thought I'd end up like this - a stranger to myself, let alone to my loved ones. I used to love being surrounded by people at work and play. I was at my best when bouncing off of lots of different personalities and used to always have a 'more the merrier' outlook on any social event, bringing together a couple of my different sets of friends to make things more fun. There's no point crying over spilt milk - things are what they are. I still enjoy people very much - just in less full on circumstances than my noisy pub-dwelling days of old. I'm probably best at online friendships - I find Twitter and Facebook much less stressful than real life - or a quiet afternoon in a Wetherspoons pub so I can hear myself think and hear people speak. 

Well, it's 45 minutes until this phone chat so I'd better brace myself for it. I'll let you know how it goes.

Thanks for reading.

No comments