The side you don’t see

Apologies in advance but I was feeling a bit ‘doom’ today. I just feel so ill and I’m aware of that fact. So it’s not the worst poorliness I’ve experienced because when I’m THAT poorly I’m too ill to notice. I think my blog is turning into a mass of moans so I’m sorry. With chronic illness there is an awful lot to moan about though…

My current inability to stomach certain tones of people’s voices and the hustle and bustle of the Easter holidays is frustrating me because I feel it pushes people away and plunges me into isolation.

I can’t cope with noise but this isn’t even noise! It’s just people being normal…walking around the house normally, and yet their footsteps are too loud for me and it makes me feel so ill. I’ve just ordered some ear protectors because they’re necessary on days like this.

It’s all so loud; the jangle of keys, opening and closing of doors, boiling of the kettle (I have to leave the room when I turn the kettle on to make my own coffee), the ticking clock….

As I got used to the noise sensitivity by mid-afternoon the light sensitivity decided to rear it’s ugly head. So there I was reclined in bed wearing two pairs of sunglasses (see attractive photo!) with the blinds shut. Thankfully I have fewer of these days than I used to but just an hour like this is far too much. You have to try to stay calm and not catastrophise but that requires energy and we don’t have a lot of that…

Sunday turned into an afternoon of laying with my eyes closed but not sleeping. I couldn’t tolerate TV or reading or music. I could only ‘be’. People always ask how I manage to not fall asleep. I’m not sure really, but my tiredness isn’t sleep-tiredness.

I did a little video after the sensory overload had died down a bit and I could sit up again.

Apologies in advance but I’m not looking my best in this clip. Video editing is beyond me too so you get a lovely close up of my face when I turn the camera on and then off.

You might notice my slow, tired-sounding, laboured speech…that’s very normal for days like this. To be able to have the energy to speak is always a plus. For some of you this will be the first time you’ve ever heard my voice. It doesn’t always sound like this! My family find that they can tell what kind of day I’m having by the sound of my voice. The slurred, drunken speech is the most amusing. I’ll try to catch that on camera one time.

I wanted to try a video entry because when you read my posts you might not realise the effort and energy that they require. This video isn’t great and doesn’t accurately portray how awful I was feeling, but it’s a start. I only did it in one take. When you see posts or pictures from me or you get a text to say ‘today isn’t great’ this is the kind of not-great I’m referring to; the constant discomfort, weakness, horrendous nausea and having the room spinning (hence why I lay back half way through.) This is a typical bed day but it is not the worst bed day I’ve had. Far from it. I wouldn’t put you through that…yet. I actually look like I’m moving around okay in the video and I’m able to sit up. That’s what a couple of hours of purple time (complete rest) can achieve, even if it is rather dull.

Anyway, the point I’m trying to get across is that while I may be well enough to blog, or post pictures on Facebook, or tweet, it doesn’t mean all is well. It’s very hard to tell the tone or pace of someone’s posts or how animated a person is by reading something they’ve written.

So here’s the first video post…

M.E. myself and I on YouTube