When you are sat in that clinical room and the doctor says 'We are diagnosing you with ME', your first reaction is 'ummm, okay then...so what do we do?' And their response? 'We'll put you on a course that teaches you how to cope with it'. Your mind races...is that it, all they can offer me is how to cope? What about all the other options that are offered to those with cancer, diabetes....don't I get more than just how to cope? It's not until you get home and read the leaflets they gave you and inevitably turn to good ol' google that you realise there are no options! At at that very moment, the one thing you had before you were diagnosed leaves you completely....Hope!
At any age such a diagnosis is difficult but as a child it's unimaginable. (I'm not saying it's harder to bear, just my experience) At fourteen, if there is one thing you have in abundance, it's hope. It's the time in your life where all your plans for your future education become important, where the opportunities to have a career in a job you've wished for all your life start to have significance and yet in that single day that started with a trip to see the specialist, your entire life is blown to pieces and you are left clinging to the straw-like strands of hope that are slowly slipping from your grasp.
It seems the turmoil I went through has faded into just a painful but vague memory now so it's difficult to put into words but I know I cried alot! Insomnia was a major issue for me so on just three hours sleep, I forced myself to school for six hours a day just so I could sit my gcse exams and not be a complete failure and then I would come home and collapse on the sofa or in bed and feel that maybe if my body just gave up the fight, it would be better than this constant battle through hell for just a tiny semblance of normality. When this is your daily existence, it's almost impossible to look beyond it into the future that still holds the possibility of being well again. It's difficult to see how it is humanly possible to take so much pain, fatigue and lack of good sleep and still live!
But as the years drift by, the education plans fall away into forgotten dreams and the initial turmoil you felt when you heard the words 'no cure' becomes a ghost of a memory. I don't remember when I finally accepted this as my life. I know hope didn't factor into it but it was a kind of resignation. There are only so many tears you can cry and so many times that you can punch that poor pillow before you exhaust yourself to the point that you fall into a fitful sleep and at some point, you accept it. You accept that this thing, whatever it is, that they call ME is always going to be there and eventually from somewhere, a little thing called hope comes back to you. It may not be hope for the future you once envisioned as a child but hope that one day you might be well enough to enjoy a day out to the seaside without being confined to bed for months afterwards or complete an evening course in a hobby you once enjoyed so much before the illness came.
It's easy for you well people on the outside to think 'Well her life doesn't look so bad' and I agree hell isn't so bad. Once all the anger and raw emotion drops away, this hell that is my life may be agonising, exhausting, humiliating and depressing but now there will always be that little cloud with it's silver lining hanging above reminding me to never let go of that tiny strand of hope because if I do, everything I have achieved despite this illness will mean absolutely nothing and in the end, I refuse to allow ME to take that away from me.
Quote of the day: 'We must accept finite disappointment but never lose infinite hope - Martin Luther King, Jr'
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