Tuesday, 4 June 2013

Invisible Illness

Normally I'm not a fan of cameras being pointed in my direction. I tend to be very critical of most photos of myself as a rule, then find myself years later looking back thinking 'I looked pretty darn good then - why did I think I looked awful? I look really awful now!'

It's odd how we don't often appreciate what we've got looks wise until it's gone however every once in a while I will stumble across a photo of myself I really rather like.

So here I am in a photo I took the other week whilst sat in my garden. It is perhaps the best photo of me I have seen for a long while - I am quite picky. Now, you might be wondering why on earth I'm writing this and secretly thinking I'm a bit self-centred to be writing about a good picture of myself, but there's a bit more to it than that. You see, the irony is that when this photo was taken, I was probably at my worst health wise. 

On this particular day, right in the midst of a spectacular ME crash, the weather was lovely. So, despite feeling like utter cack, I dragged myself out of bed and sat in the sun for some much needed vitamin D and fresh air. I lasted about 15 minutes before I started to feel achey, hot, sweaty and downright ill. I spent the next few hours recovering in bed with the blinds down and the windows closed because the light from the sun and the sound of the birds singing were too much for my poor, hurting brain.

My point is that to look at this photo, or to look at me in real life, you would not know how ill I am.  How I spend most of the day resting just for those small snatches of feeling relatively less rubbish.  I look normal - there are no cuts or bruises, no limbs missing, no rubber stamp on my forehead proclaiming my deficiencies. It makes me realise why others have such a hard time understanding what it's like to have ME and other 'invisible' illnesses. 

The term is particularly apt as not only is my illness invisible to the eye, it makes me feel invisible also. So far I have had to resign my job, lose my social life and my independence. I rarely see anyone as having conversations on the phone or in person make my brain hurt. I can only watch tv, read or use the computer for very short periods of time before my brain starts to hurt, then sure enough my limbs will start to ache as well and I'm in for a fun old time in bed for the foreseeable. It really does feel like everything I know and love is slowly being stripped away from me piece by piece.

I think this is why I spend most of what little energy I have online - writing blogs, tweets, posting photos on Instagram. It is a way of proving my existence, of leaving a virtual trail to show I'm still there, still fighting, still the same person I ever was despite being trapped by a horrible, life-changing illness.  And the fact I'm still able to do this, however slowly, means I am still one of the lucky ones. There are people with this illness in far worse condition than me and there is always hope for recovery, even if only partially. Frankly, at this point I'll take any improvement, however miniscule. I may not see my friends or family often but I know they love me and wish me good health and happiness and I am blessed to have a wonderful husband who cares for me without complaint or making me feel this is in any way my fault.  I try my best to stay positive and generally succeed but every now and then I can't help but wonder if there'll be a time I become so invisible that I disappear completely. I sometimes think if that happens, then who's to know I even existed at all.

1 comment:

  1. I totally agree.

    As insecure as I am I also always put a bit of make up on before I leave the house and therefore look pretty normal! In some ways I feel better for doing this but I feel when it comes to judgement people think you are 'okay'!

    The main point here too is you look fab in that picture! :)