To Live with Invisible Disability

I have been trying to adjust my mind to live with ME/CFS. Comparing to the last year, I am less confused and angry about everything. Yet, I cannot feel that being chronically and severely ill is a blessing as some of the fellow bloggers mentioned in their blogs. Obviously, I need much more time to feel that way.

This is about how I am feeling these days. They may change in couple of months or in couple of years. But this is where I am at this very moment. And as always, I am still work in progress.

DISABILITY

I am just getting used to the fact that I am Invisibly Disabled. The title, “disability’ used to belong to someone else who uses wheelchair or someone who lost their sight or sound. I used to get nervous around disabled people because I just didn’t know if they needed help and also feared I might offend them if I offer help. I didn’t know that there is Disability Etiquettes. These days, I look at people in supermarket and wonder if he/she is invisibly disabled like me.

I was thinking about getting a wheelchair for myself, but at the same time, I feel it will not help me much. First of all, I cannot go out much. Second, I believe people wouldn’t like it when they see me getting out from a car with my own legs and then pulling out wheelchair by myself. I would be very offended if someone approaches me and ask, “Excuse me, but what exactly is your diagnosis?” If my opinion, it is my own business if they are not prepared to support me. And last, doing a grocery shopping on wheelchair would be harder than leaning on shopping trolley. I would not be able to push the trolley on wheelchair. And I would not be able to reach stuff on shelves from wheelchair. So, I just walk very slowly and keep my head down (to avoid dizzy spell and extra stimuli from people and advertising signs) as if I’m 100 years old.

I didn’t wonder about what my disability is. I don’t feel weird about I am disabled anymore. I am disabled because I just cannot do basic and simple things that healthy people would do without thinking. If and when I could do these things, it is still a huge task and challenge for me.

“Invisible” is the hardest part I must deal with in public. Because when people cannot see it, they don’t believe it. So that people rather give me harsh attitude and/or the look than offer support and compassion. I don’t wish people to help me as if I am a 4 year old child, but I DO wish they understand what I am going through. I am also worried that someone might complain to Centrelink that I am faking my illness to take advantage of the system. (I’m sure that Australian people can recall some current affair programs that accusing a Disability Support Pensioner that they are having a good life. Well, I know majority of them were welfare fraud, but it sent public message that all Disability Support Pensioners are cheaters.) I AM very grateful that government and fellow Australians are giving me the pension so that I can keep living. But please do not think I am having a luxury life as pension is only for survival. You cannot get anywhere with pension income and I prefer much much more to be healthy and earning my own money and working hard towards my goals.

People give me the look at supermarket aisles and I know they are wondering if I am dangerous or not. I walk very slow, leaning on the trolley rather than pushing them. I spend way too much time determining which brand gives me better value or which brand would not cause trouble to my body. Sometimes making decision is not easy and I spend way too much time choosing one item. I drop shopping list too often, and struggle to pick it up with pains and weakened muscles. Sometimes I need to keep reading out the shopping list for myself because my brain refuses to match the item I’ve written down and actual item. But I am not crazy. While I shop, joint pains get worse and my muscles lose their strength. And my mental RAM is about to crash. Sometimes, I have to leave the supermarket before I get everything I need because I must make sure that I still have enough strength and mental RAM to drive back home safely and put perishable items in fridge.  Not to mention that this simple task will give me post exertional malaise and I would be suffering from extreme fatigue and pains for a while.

I cannot go out to do grocery shopping as I wish. I must rest before hand to save up enough energy to make the trip. Usually, I wait for 10 days, two weeks and sometimes more than three weeks. I need to choose less busy time to go out. Occasionally, I get a spare of moment energy and strength, and then do Kamikaze shopping. In either case, I cannot afford to enjoy window shopping.

When someone asks me if I could do grocery shopping, the answer is “yes”. However, that “yes” is far more different from healthy people’s “yes”.

What is my disability? My disability is severe ME/CFS, the invisible illness. I don’t have ability to do the basic and simple things. And just like people who lost their limbs or sights, I cannot get the ability back.

 CFS Equation

I was fascinated by RachelCreative’s attempt of finding the equation of ME/CFS. She is trying to find a formula that can explain balance between energy, time, tasks done and potentials. So I tried to come up with my own version of ME/CFS formula.

However, it was an impossible task. I felt there would be lots of subtractions and divisions but not much adding.

My first attempt to find the balancing formula would be to trim down everything to the core and absolute essential.

For example…

·         Hope is important to hang on and keep going. But we have to look at them and shave off false hopes and keep only the reasonable and possible hope.

·         Things I want to do need to be my only passion. I need to trim off things such as the things I want to do because it would make me look good or everybody else is doing. I need to stick to the only thing I am passionate about doing, otherwise I would waist lots of energy I don’t have.

·         Things to do list for everyday life also needs to be trimmed down and try not to feel guilty about it. I don’t answer phone calls because they are all telemarketers or rude person calling to the previous owner of my telephone number. When I’m very sick, I don’t even attempt to answer the door because by the time I reach the door, nobody is there waiting for me. I don’t feel bad when I cannot have shower for a day or two. I am trying to get used to dirty dishes piling up for a couple of days. I am trying not to worry when I cannot clean the house for more than a month. And etc…

I am not sure what would be left when I shaved off all non-essential stuff about me and my life. I didn’t renew membership to CPA Australia this year. It was a false hope that I could go back to accounting profession. I am only an accountant on paper now. I shaved off my lifelong slogan “stand up and fight for my principals”. Life is so unfair and I cannot keep wasting my precious energy to prove my principles to people who do not care. I just have to keep the satisfaction of being right and good to myself. I look away from things that upset me rather than challenge them. (It doesn’t mean I don’t care the important issues for fellow human beings.) These were not easy decision to make. However, I am slowly getting used to the process.

Each time, I shake off the thing and belief that used to be very important, I get closer to finding true me. I am hoping that I will find my true passion when I trim off all non essential things.

And when I trim off all non essential things from my life, I may find my own balancing ME/CFS Equation.