The disappearance of the tremor – When the treatment is working but you can’t enjoy it

Invisible disabilities are disabilities that are not immediately apparent. For instance, some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contact lenses. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Most people with RSI move in a ‘normal’ and inconspicuous way, and are even encouraged by the medical community to be as active as possible, including playing sports; yet those patients can have dramatic limitations in how much they can type, write or how long they can hold a phone or other objects in their hands. Non-blind people with the circadian rhythm disorder “non-24” are as a rule unemployable and there are no visible signs of that.

Invisible disabilities are chronic illnesses and conditions that significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.[1]

via Wikipedia

I really dislike the term “Invisible” when referring to disability or illness. As real as it is, it feels like a farce for me to call my disabilities and illnesses invisible just because other people cannot identify the symptoms. The very real and disabling symptoms.

Just because you can’t see it, doesn’t mean it isn’t visible. I can see it. I can feel it. I am the one having my life interrupted by it. Yet so many people like me are treated like hypochondriacs, scammers and weirdos because we have assistive technologies, disability parking permits and are placed on welfare payments because pushing us not just to find work, but to be employable is detrimental to our ongoing health.

Even when I’m doing “well” I still have symptoms, they’re just not as obvious as when I’m not doing well. The worst part is, that when I am doing well I feel like I should enjoy it, or take advantage and live life a little more on the wild side, you know, like going to a doctor’s appointment on the train in the city all by myself.

I recently had a visit to the wizard (neurologist – you know how the scarecrow went to the wizard to ask him for a brain… yeah, that), and he felt we’d found a successful combination of medications so, next experiment was to increase the dose.

It was only a few days before I went from needing to be rolled over and helped out of bed to leaping over tall buildings in a single bound. Okay so I’m not quite leaping but when these things are successful it does make you experience a kind of superhero phenomenon. Anyone who has been treated with steroids for a respiratory illness or infection will totally understand what I mean.

My hands haven’t been this steady for almost 10 years. I have no tremor. None. Well until the medication wears off but that has been drastically reduced as well by the new medication regime, however there are still times when I’m late with a dose or I miss it altogether and then boom you’re shaking all over and asking why you keep doing this to yourself. It just becomes tiring searching for water and popping pills every couple of hours. Seems so effortless to people who don’t have to do it but after 5 years of it 365 days a week it is one of the most prosaic activity in your life.

Yet here I am rejoicing in the miracle of modern medicine and I’m afraid to enjoy it. I’ve been through this before. When I went from waiting for diagnosis to successful treatment and my life and capability improved dramatically, and still to this day the accusations of faking it plague me. People who normally don’t give you the time of day, who just look at you as you scoot past on your mobility device as though you’re the most pathetic thing they’ve ever seen, see you without the mobility device and suddenly WHOA! See I knew she was faking it.

No, you’re not allowed to have a good day. You’re not allowed to have success with treatment. When you do, they expect that you can be like that all the time and when you’re not, well, you’re just not trying hard enough.

People see me and say this is the best they’ve seen me in years. Which feels great. For a moment. Then that moment fades because I know I’m on borrowed time. The treatment is not permanent. Parkinson’s Disease is a progressive and degenerative condition. I will get worse again. The dose will no longer be enough, the type of medication will no longer be effective and I will go back to the hour by hour battle to overcome the wretched disease long enough just to cook a meal, or do a load of washing.

I know what I have to look forward to. It’s not exciting. It’s flipping scary. So why do I not feel like I have the right to enjoy whatever the period of good time it is that I’ve been blessed with, without facing the accusations and assumptions? There’s no way of knowing how long this could last, but some people will expect that while I have this physical capacity I should be “earning my keep” and get a job. Make a “real” contribution to society. I did try that in my first early honeymoon period but the added stress caused me to deteriorate so quickly it was only a few months and I had to quit… and that was only working part time.

I haven’t improved on every level though. Physically I feel the improvement. Cognitively I still struggle. I still do random things like put the kettle in the fridge then wonder an hour later where my cup of tea is that I didn’t actually make. Probably the number one reason why I’m not allowed to drive.

It shouldn’t have to be like this. We shouldn’t have to feel obligated to have symptoms even when we don’t have them. Lets rebel against the expectations of society! Stop explaining ourselves and just respond by asking them how long they’ve been living with {Insert relevant disease/illness/disability here}. Oh, you don’t have it? Great then you can’t really tell me what I should expect to be doing under my circumstances…. Kindly fuck off and have a great day.

Live like someone left the gate open!
Live like someone left the gate open!

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