My name is Carole and I’ve had M.E. for over 15 years. The first decade I managed pretty well as I would describe myself as having suffered at the mild to moderate end of the scale. I was even able to hold down a part time job working from home and choosing my own hours. But after having suffered from womb cancer at the age of 44 my illness has steadily become worse and far more limitations on my ability to function normally have sadly happened.
I can almost describe my life as being like the Oscars.
We see those stars and celebrities at their very best at that ceremony,
They’ve spent hours and hours on costumes and make-up and hair that their own mothers would barely recognise them to be honest.
They certainly don’t look nor dress that way every day…who could devote that much time and effort!
Well my life is like that in a sense, When I am able to get out into the big wide world, there’s a lot of preparation gone into it and also a lot of recovery time afterwards not unlike those big time stars I imagine too.
To be able to visit family, go to a shop, take a trip to the seaside to watch the waves from my car I need to build up enough energy to be able to do that by resting beforehand. I don’t just mean hours…I mean days sometimes weeks. Then I go out and can almost appear like I have nothing wrong with me to the casual observer. My outward appearance is that of someone who is able to walk a short distance, smile and chat and be friendly for a wee while…but inwardly my body is weighing up how much energy it has right there and then to be able to keep this act up.
This charade…a very delicate act so that I can feel almost normal for a few hours and can interact with friends and loved ones to a degree that helps them feel like it’s just Carole, their friend, sister, daughter etc rather than someone who needs to be pitied or cosseted or thought of as ‘that tired girl’
It’s very important to me, Not only for my own self worth but also because I do have a very caring personality and worry for the feelings of those I’m with.
That I can have these snapshots of normality without having to live in the confines that M.E. imposes upon me for 99% of my life whilst I’m at home mostly in bed or at my best sat on the sofa. Those days are filled with pain, exhaustion, digestive, immune, cardiac, hormonal and neurological problems that anyone with M.E. or their carers or close friends know about all too well.. If I plan it right then all that can be unnoticeable because it’s happening on the inside and I am very adept now at hiding it.
This might not be the right thing to do…it’s certainly not raising awareness for the M.E. cause but to be frank…I do a lot of online campaigning for public awareness into this illness that I really don’t want my ‘fun’ time to be taken up with it too. I’ve included a snapshot of my Mother and me to show that my life really does have joy in it, even though those times are few and far between, they mean the world to me and help me through the days when i am suffering badly.
Sadly there are those who can’t do this act…they are so severely affected that they have no choice but to miss out on all the wonders out there in the world. Their lives are spent confined as not even a jailed prisoner experiences. Their lives are so limited and mostly invisible to the outside world. They never get to go to the Oscars.