ME/CFS Awareness Day

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Blogging for ME/CFS 2008 Archive: click here to meet people blogged for the awareness

 

To me ME/CFS Awareness Day is also a check out point of my life with ME/CFS.

I usually try to blog about events in my life with ME/CFS. Sometimes, it takes very long until I finally post about it due to bad payback (Post Exertional Malaise) or general unprovoked flare up of the illness.

Today, I would like to talk about how I feel about my life with ME/CFS.

Last year, I contributed my thoughts on loneliness of life with ME/CFS to one of the fellow bloggers living with ME/CFS. I was still riding on the emotional roller coaster fuelled by grieving for lost life, abilities, achievements, goals and future dreams and whatever I believed that made me as Rachel M. I was still emotionally hanging onto my lost career.

During the year, it doesn’t matter to be accountant anymore. Now I can accept that my accountant era is over, and I would not go back to the profession even if I get better enough to work again. If I’m given a chance to try new life and new career, I would like to choose something that I could help people with what I learned from the life with ME/CFS.

Before I got severely ill and disabled, I thought I was a compassionate person. The life with ME/CFS made me realise that I was far from being compassionate. Ironically, I can understand why kind people out there just cannot get it. Only people, who tried everything and desperately hanged onto the world for able people, but had to surrender to stigmatised illnesses/disabilities, can understand how does it feel not being understood or being fallen into second class citizen category. And to understand that illness just happens to anybody and no will power would cure the illness.

Because of my own life with ME/CFS, I can now truly understand how chronically ill and disabled people feel. I treasure this as a gift and feel it is supposed to be used to help others going through the same hardship I had. Although my wish and hope are still trapped in this disabled body, I believe there will be something coming to my way when I am ready for it.

During the year, compassion of strangers touched my heart. They enriched my soul. And the experience made me realise that there are still many people in the world who are going through worse life than mine. My life is in survival mode and there is not much quality in it. But I can appreciate for what I have from bottom of my heart.

 

During the year, I gained better understandings of symptoms, but I got more confused of identifying what ME/CFS is. Many people are still undiagnosed. Many people received this diagnose just because their health care professionals didn’t want to deal with them. For most of the illnesses, diagnose means the beginning of getting better with treatment… Sadly for many people, ME/CFS diagnose means the end of care by health practitioner… Many people with ME/CFS are actually suffering from other serious illnesses, but they cannot get any further investigation or treatment anymore. There are so many different possible causes for each symptom, yet, there is not enough biological research to identify them. Frustration causes disputes and bitterness among those who are disposed into ME/CFS basket…

 

During the year, I found out the reason why the famous nurse, Florence Nightingale’s birthday (12 May) is used for ME/CFS Awareness. There is a theory that she suffered from ME/CFS.

 

During the year, I bought a walking stick, then wheelchair. And slowly two dots of being severely ill and being disabled had connected. I finally accepted that I am now “disabled” and made peace with it.

 

During the year, I accepted that being isolated from everything and everybody is also my benefit. I like to have a few good quality friends around me. I also enjoy chatting with people and interacting with them. This illness left me with only one good long distance friend, and left me in complete isolation and loneliness. However, I must admit that the isolation is better than dealing with negative and arrogant people who refuse to understand how tough the life with ME/CFS is.

 

During the year, I became one of the very lucky ME/CFS patients who has a compassionate doctor. This changed my attitude greatly and I no longer have “sufferer” attitude anymore. It is great to be able to hope again.

 

During the year, there were little improvements.

I feel I am managing better on basic everyday tasks.

I no longer cry in the toilet and stay there for hours because after the huge struggle to walk to the toilet, I just had no more energy left to walk back to my bed. I no longer crash on cold kitchen floor unable to move for hours because I just used the last energy trying to have something to eat. I found couple of online store for fresh food and some groceries. Although they are not perfect, it reduces the burden of shopping at local supermarket. (less things to carry) And when I just cannot go out, I can still get something to eat. With the combination of little online and little offline shopping, I am somehow getting by without any physical support, which I just could not find.

I feel my cognitive function and adoptability of sensory stimuli are better. It is still unreliable, easily gets payback, and is bad ME cognitive function. Yet, I can interact more with people (mainly by email), can read more, and can watch TV rather regularly without getting payback.

Since I hardly see people, I cannot say this for sure. But I could handle face to face communication better than last year. It just has to be only one on one and rather slow interactions.

I made a peace with my ego, and now it is okay if I cannot check my letterbox everyday, or if I cannot take rubbish bin out every week. I am adopting my limitation better without feeling guilty or failure.

There are only two tasks I allow myself to go little over the limit, cleaning and washing my dogs. Although I have to face the consequences, the satisfaction I feel inside is worth the bad payback. Naturally, these tasks need to be carefully planned and plenty of rest (at least two days) before and after are essential. I often have to do only the minimum depending on my condition.

Strictly speaking, I really shouldn’t allow myself to go over the limit. We tend to warn each other, “Pacing!” (Believe or not, most of the times I’m pacing well.) But hey, we are not living in a perfect world. There are many things need to be done for survival. And if I try to keep the perfect pacing model…, nothing will get done. I don’t have anybody to help me. Life goes on. So there is no need for whinging. Sometimes, I squeeze another task before my body completely crashes.

When I start working on big task, my body just cannot rest until it completely uses up all energy and adrenaline. After a day or two, I finally be able to fall into coma like sleep. And it is the beginning of nasty symptoms. I just have to be conscious that I didn’t push myself too far, and cross my fingers that the severer and longer lasting payback is still just payback, not the progress of the illness.

 

I am slowly starting to rebuild Rachel M with severe ME/CFS and disability. Just like the illness itself, the progress is invisible. However, it is an important foundation of my new era. I no longer feel the urge to decollate my life with severe ME/CFS with misery and despair. I’d rather focus on hope and positive.

I admit that I have finally accepted this is my life now. But it is not surrender. I would rather consider this disability is temporary and I will improve my future somehow. It doesn’t have to be today, or next year. But it will happen one day. Behind my coping tricks of “not looking back”, “not worry about the future”, and “try to deal the problem when it actually happens, one at a time and little at a time”, I am thinking what I want to do when I get better. And I know as long as I keep hanging in there, something will come to my way.

 

My life with ME/CFS is a little proof that help will come to us one day. And I hope many people out there living with ME/CFS with insults, ignorance, despair, anger, fear, loneliness and all things that make your heart ache can start hoping again.

During the year, I could start hoping again. When all of us get together with positive energy and attitude, something will change. It is just not today or maybe not next year. But one day, whole world will change their attitude towards ME/CFS, it will bring us research to find cause, effective managements and cure.

Each ME/CFS Awareness Day blog today is one of the molecules invisibly vibration vigorously. I can see the each molecule attracting each other and start gathering together. One day, this amalgamated energy will explode. Then, the world cannot ignore the truth about ME/CFS anymore.

 

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My personal ME/CFS Awareness page. It’s just a collection of link to useful informations.

My contribution to Flickr CFIDS Group. Long Driveway