The deal with M.E is we either accept being shackled to a spot marked X and sit there waiting for our life to end (Watching Eastenders can often produce tha same effect lol!) or we pick up the ball and chain and take M.E with us for as far as the chain will allow us to yank it.
Its not easy by any means, its not normal to go absolutely anywhere when you feel so ill, we wait don’t we…until we’re better?
Now if you haven’t got M.E then imagine a time you’ve been really ill, so ill that you’ve had to have time off work, missed going out with ya friends, and its been really frustrating, but you know in a day or two you’ll be better again…you just know, because that’s what normally happens isn’t it?..thats what we expect.
Now imagine you wait and wait and wait but you never get better ever again…welcome to M.E.
Its been said that to have M.E is to wake up everyday feeling as though you’re dying, and having suffered for 21yrs I can vouch that its true. Sometimes I feel as if I’m still waiting to get better, the realisation of being ill everyday and never getting better again often produces a sudden panic.....
even now all these years down tha line, sometimes it feels like I’m trapped, suffocating and without warning, the realisation and fear rises up, just like the hot bloody flushes i now encounter since my Op in May that meant I was forced to hit instant menopause…….just to add sumthin else to tha list of hinderances.
I, like many M.E sufferers choose to push tha boundaries because sitting shackled to tha spot marked X doesn’t even bear thinking about. But shuffling off with ball and chain in hand is no picnic either, it boils down to tha fact we’re only left with bad choices and we have to choose one.
Moving away from tha spot marked X means there will be consequences, a punishment to our body…there always is. It can be dealt immediately, a couple of hours later or a day or two later, it can be sumthin as simple as climbing the stairs, to going out to see friends, to joining a family party.
So to all those without M.E that maybe mock, or sneer as if we must be okay to be out “enjoying ourselves” You can be sure one thing is certain the punishment will come, usually in the form of severe pain, and an exhaustion that leaves our body feeling as though it’s being pulled down by quicksand, sucking out every last bit of strength with such a force that sudden collapse is common, heart rate alters, theres barely enough energy left to breathe, every muscle, every bone, every inner part of us burns inflamed and raw as if scraped with a razor blade……
how dare we enjoy ourselves…..you don’t see us then, you’ve carried on with your life with an image in your head of us “enjoying ourself “ which must mean theres nuthin really wrong with us?
But you see, I would rather face this punishment..and your ignorance, & I do, daily, because at least I get to taste a little bit of life. If I sit shackled to tha spot, its not going to change the fact I have M.E, its not going to stop me being ill, but I experience nuthin…except illness.
Yesterday 3rd August I went back to tha recording studio for tha first time since my Op. Sure I was scared, because tha Op like everything else has an effect on tha M.E and vice versa, I didn’t know whether I’d cope with tha journey, or even tha walk across tha courtyard into tha studio, never mind actually rapping N singing again. But I wanted to live again, so I nervously wrapped tha ball and chain under my arm and off I went.
Apart from an uncomfortable coughing fit in tha recording booth I survived and it felt a huge achievement to have done it. On tha journey home I already knew I was going to feel tha full force of M.E’s roth, and it didn’t take long ,I’d only been home half an hour when I had another mega coughing fit , and due to my Op it’s a pretty pathetic cough because I cant cough properly, anyhow then I threw up, exhaustion punched me in tha face and my legs went from underneath and I ended up in bed…but I still refused to let M.E wipe tha grin off my face.
See, there are only two choices to accept or not accept, deal or no deal and I refuse to allow M.E to shackle me down so its no deal, I will, for as long as my stubbornness and body allows keep dragging M.E with me. I take M.E with Me, it wont take me.
Stay Blessed :) xxx