Okay, you've all heard it. About how MSers fake their symptoms so they can be accepted into trials. About how neurologists have to judge the story and see if they believe it before treating. About how MSers demand more more more all the time and insist on treatment even when their symptoms don't warrant it.
No?
Well I have heard this from three sources in the past two weeks (two live, one on Memorex), and I don't know quite how to react.
Burning down my neuro's office seems extreme.
Yelling in the privacy of my own home seems ineffectual.
Slapping the person who implied I was malingering is chargable.
So I'm settling for the middle road and writing here.
Okay, I'm mad.
Hmm.
So, you get told you have a chronic incurable debilitating disease. You are told you have to take expensive medications for the rest of your life or risk crippling disability. You are told you have lesions and holes in your brain.
Some of us wallow in self-pity. I did that, for about a year. I figure that's pretty normal. But once I bonded on the idea of a walk in tub, I was fine, really. For the most part, though I can't help grieving some of my losses.
("of all the things I've lost, I miss my mind the most...")
It's hard to be cheerful all the time when you have muscle spasms and numbness and forget where anything is and can no longer do simple math without thinking really hard and have to leave work because few employers would put up with a 2 hour nap every afternoon. But wotthehell, Archie, toujours gai, as Mehitabel the cat would say.
So, if you're me, you give your head a shake and start exercising. You exercise every day. You ignore the fact that this means the rest of the day is a writeoff because you know that if you don't exercise, your balance gets worse, your muscles atrophy, you feel more pain, you get fat(ter). Exercising means that your muscles are capable of walking the dog.
Exercising means that you still can walk, even if some days it takes more concentration than it really should and your feet cramp up afterwards and you notice that that old left leg just isn't swinging forward the way it should. But you plunge on and you do your best because you are fighting the disability, damn it, with all the energy you've got.
BUT you're still numb, you can't see properly, you can kiss sexuality goodbye, you still walk like a drunk when tired and a certain amount of your zest for living vanishes along with your energy.
And then you interact with your doctor.
And he treats you like those things, those smallish things that exist and ruin your life, those smallish things that shine most bright because of all your hard work stretching and moving and exercising even when you are beyond tired and your positive thinking and sense of humour about not being able to feel your lips or having them tango dance every time you go to the dentist - those things that still bother you - he treats them as if they are nothing, as if you should be grateful, as if you are wasting his time.
And in a way, you are. There's nothing that can be done for you in any case. Well, except more drugs. Which cost more money. And have side effects and dubious efficacy.
And then there's the support you need to maintain your status as disabled, that status that means you get an income even though you are too tired to work for one, even though, as an employee, you'd be pretty damn unreliable. And that he holds over your head like a sword of Damocles, in his might, swinging it to and fro, to and fro.
It's no wonder people with MS are telling the tales of their worst days, not their best. Minimize your symptoms at your peril, lest your funding be removed. Minimize your pain, or forget those nights when you couldn't sleep because of spasms, and you get scorn.
It's no wonder people hop on the comet trails of every possible treatment that doesn't involve their neurologist, even if the hope is as ephemeral as those trails, just to avoid that scorn, that feeling of being examined and found wanting as a person and a patient. I'm sure half of the benefits found through CCSVI treatment come from someone listening to the patient, and showing some caring.
I've lived with ongoing pain most of my life. It's from a variety of causes, probably not all MS, but I've lived with it and dealt with it and moved on. I resent like hell being told I malinger, when I ignored the symptoms of MS until I went blind one day (thank heavens, for a short time only) so that I wouldn't bother the medical establishment. I ignored the symptoms of a kidney stone and coped on my own with it so I wouldn't have to go to emergency. If I am saying now that I CAN'T DO IT, then by god, I CAN'T DO IT.
I am reminded of my favourite patient when I was teaching nurses. They were going to give her a bath and they had placed her in a bath chair to raise her up and into a huge tub. She was stark naked, up about five feet in the air, and she was hollering, "Come here! Come here so I can kick you!"
I feel as powerless as she was, and just about as mad.
