There is not a lot out there to help me deal with you. No magic pill that kills you, no soothing remedy, or definite action. You are not a simple illness and therefore there is no simple cure. But there are methods we learn, tools we are given to become stronger.
We have our CBT, where we learn to think more positively, and behave more positively, so our minds no longer weigh us down as much, and we are more equipped to handle you.
As you are aware, this was always an uncomfortable method for me. I put a lot of effort into trying to be positive, it is a very hard for me to let that go enough to let people see the way you have sowed yourself into the rifts of my past. The way you and your friend and sister bloom inside of me. I don’t like anybody see that.
I have learnt during my life to reassure people that I am OK. I am worried about so often, when you drain me of my colour, and make me cry with pain, so I try my best to worry them less. So when somebody was trying to see if there was a break in my positivity, it proved difficult. It gave us more stress to decipher the complexities and to weed out the faults. Because to recondition the mind to think a certain way you much first admit to how it does think, and that was just a Pandora’s Box we didn’t want to open did we M.E?
We’re a stubborn pair, you and I, You never want to let me go, and I don’t want to open up, but I tried my best, and have worked so hard recently to untangle my mind enough to not give you any more power there. And yet still you do not let go? You just seem to dig in deeper, making me a little more hopeless.
Alongside CBT there is GET, as in go get yourself in more trouble because M.E will hate you after this one. GET, stands for graded Exercise Technique.
I understand the theory, which is to slowly ease M.E into exercise. We start with something simple, moving a leg, or an arm, or something. I was told to reach my arm up something like ten times a day, Ohhh M.E you found a way to make that a miserable. You stubbornly refused to be eased into anything, and defiantly refused to ease me into to your reaction.
I have tried so much over the years to make my body stronger despite you. Just a quiet amble, or something. I bought that exercise bike to try and outrun you, but you, M.E win every race, and find a way to convince me to NEVER try that again, unless on rare, special occasions where I’ve made allowances and written in my diary that I’m busy with you for the next week. I can’t do anything without you reminding me that you exist and you hurt, even raising my arm ten times. Even that. So with GET, I never got far, there were too many other things alongside you.
So with GET and CBT there was Pacing. But teaching you and I pacing was teaching us to suck eggs. We had lived together so long by the times they tried to teach us pacing, that I just frowned and said, “I already do that.” By then I’d dropped out of school, I had taught myself to handle you, to monitor and measure you. I knew our boundaries, I knew our borderlines. I knew you by then, so pacing was just giving the method a name, giving it credence, but not giving us anymore help.
Over the years we have wandered down so many avenues of treatment, conventional and otherwise, it’s all rather boring now. And I am so utterly uninterested in trying more, but I do, that is how much I want to be rid of you. Maybe something will work, but all I really hope for these days is something to ease you.
Acupuncture took us so far, helped us to a point. But I was not given an endless M.E fund and as soon as I stopped feeling it working I gave up.
We’ve had ENT’s stick cameras up our nose, and tell me that out of my rather enlarged tonsils there was one rather bigger than the other, which may be a sign to something. He paced and wrote down notes and told me I’d have to return and have the camera stuck up my nose again.
Oh how lovely.
But once we dragged ourselves, you and me, to the hospital again, we met a different ENT specialist, who lazily leant back in his chair flicked through our notes grunted and said that there was really no point to me being there. He never explained to me why he believed that, or why he suddenly deemed my odd tonsils to be inconsequential. But, me and you, didn’t really want the camera up our nose again, so we just agreed, and left.
We had a pain management specialist guy who had a bad cold, do you remember that one? You could tell he had bad headache and really shouldn’t have come to work that day, as he wasn’t managing his pain that well. He too flicked through our notes, asked us the questions we’ve heard a thousand times. He then shrugged, and admitted there wasn’t anything he could teach me that I didn’t already know. I suppose it should be a compliment that I have a talent with dealing with pain, and can be taught no more, but it would have been nice to store another weapon in my arsenal against you. And there is no resume I seen with “rather talented with dealing with pain” written in accomplishments.
The worst thing about seeing so many different doctors, and specialists, the worst thing about it all, was 90% of them crushed our confidence. At 15, when I had a hospital appointment nearly every month, when I thrown around from doctor to doctor, from waiting room to waiting room, and they strip me down to do their tests, and poke and prod at my body which you have claimed, which is large because it cannot move, not because I eat unhealthy, you have made sure I do not eat unhealthily, it is large because you have done something to way it works, to way it should work. And it is weak because it has no energy.
At 15 my mind was not as strong as it is now, it was impressible to their beliefs, and when doctors picked apart my body and found no solid evidence to your existence, they dragged out other things they could blame, food, weight, size, pointless, surface problems, side-effects of your existence. And they throw me to other doctors, dieticians, who frown at me as if I’m some medical mystery and say there was nothing they could do to improve the way I eat. that I eat a healthy balanced diet. So I gladly boasted about that to every other doctor….but they wouldn’t listen.
I still wonder these days, if that is what they meant to do to us, the worst of those doctors, who pulled apart my confidence like a loose hem. Who i still call by nicknames to lighten their effect on me (stalker and the bone man)
Stalker was a paediatrician, she dealt with kids for goodness sake, but she sent me home in tears, she made feel inadequate. she looked at the muscle on my neck, which was then a new development, now seven years dystonia is still one of your worst friends, you and dystonia gang up, you are a horrible pair. Back then, it was stood tight and proud from where it should be, like it still is she saw the way it pulls my head and shoulder, she saw its effect, when most people see it they get that look on their face, that look you get when you see a deep cut or gash, that flash of pity and compassion and disgust, the look of somebody who would not swap places with you. She just shrugged, told me it wasn’t torticollis, because it hasn’t twisted my next to the side, when My mum said she knew that it was Dystonia, we were told not to look stuff up on the internet, and that I’d get over it. Seven years later Dr Stalker, with the dystonia having spread to my thumb, face, and jaw, Is it still something I’ll Just get over.
And the Bone man, who told me my pain didn’t matter because I was fat, and that i should just eat less and it should go way. Yes…I did eat less Bone Man, anything I did eat I then decidedly threw up. Nothing stayed in my stomach for weeks after i saw you.
I wonder if they knew the damage they did to a fifteen year old, if they knew these doctors who are supposed to help people, if they knew the way they made me scared to go to the hospital, I wonder if they knew the power they gave you, M.E, the way you fed off of my stress, and upset. Sometimes I think of them as villains just to make my story a bit more black and white.
So now, at 21 I am apprehensive of any doctors, especially specialists, apart from my own GP (who is great), sceptical of a cure, and tired of hospitals, waiting rooms, x rays, blood tests (which I am a pro at) and questions like “what are your symptoms” because the long list you give me is rather tiresome.
One thing I have found in our years together M.E it is that we both hate hospitals. The smell, the paint, the sterile lacklustre feel, and the bad memories.