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Keep Hanging in There

Posted Sep 22 2010 11:43am

Dr TL said that I could have gone to Dr Byron Hyde’s lecture last week. My response was going to be “Yes, I could have if I had someone to take me there and push my wheelchair around and find me a place to lie down if I got very unwell during the lecture…”

Instead, I completely lost my voice. It came back once I sat down.

Dr TL asked if I’m allergic to something. Yes, I’m allergic to pollen, dust, flea, grass, and mould. Occasionally, I suddenly lose my voice for no reason. Could it be allergic reaction? But his office is clean.

He asked if my place is damp. My place has mould problem. Although I don’t see them, I smell them behind the walls. And I could tell that the previous resident was a heavy smoker… I know this house is not good for my respiratory function… He suggested to fix the problem or move.

Neither would be easy for me… Cold air is the problem for mould. I cannot afford to keep the whole house heated. As for moving… Last time I moved, level of my disability progressed and it hasn’t been reversed yet. So, I don’t want to risk it anymore. Besides, I cannot afford to find another place. I’m paying the cheapest rent in the cheapest suburb. Yet, my budget is very tight and need to use small savings to pay the difference between pension income and essential living expenses.

He casually asked what I would do if the landlord decide to sell the property. Well, I will be in serious problem and I don’t know what to do. That is the exact situation I worry about happening. I know it’s almost impossible to find another place where I could afford… He sensed my stress and decided not to talk about it.

After some friendly chat, I casually mentioned that I’m struggling very much with my low mood… He asked if I am suicidal. (I like his straightforwardness.) I assured him that I’m not going to end my life. However, I wish I don’t wake up each day or I don’t have to deal with my life. I didn’t tell him, but “Euthanasia” sounds like a magic word at the moment. Unfortunately, not having quality in life cannot be the reason for euthanasia.

I’m grateful that Dr TL didn’t give cliché advice. He understands that my life is not easy and cannot be fixed with those cliché encouragements. I don’t need someone to tell me what to do when I’m doing my absolute best. I just cannot change the unfortunate circumstances.

He reminded me that there would be “cure”. I explained that I’m in such bad place at the moment that I cannot think positively. It surprised Dr TL greatly as “positive outcome” is my signature character. I tell you that I’m not proud of how I feel at the moment. I know it is not me. At the same time, I’m just so fed up with my life; always struggle, extra efforts to get a basic thing done, no fun, no enjoyment, no love, and no escape… Not being able to see any possible improvement or a change in my life frustrate me too much. I need a holiday from my life. I know I’m supposed to be strong. But to be honest, how long a person can stay strong without support or foreseeable hope? I can tell that majority of people cannot cope with my life. I’m still hanging in there.

I know there will be “cure” one day. But judging from the current environment, finding the cause of my ME/CFS and treatment will take very very long time. By the time I can have some treatment, it would be too late for me to start life again. In a meantime, I have to keep going with my miserable existence with massive limitation and isolation day in day out, week in week out, month in month out, year in year out… Why do I have to? It doesn’t make any difference in anybody’s life if I’m here or not. There is just one miserable existence without support, fun, enjoyment, love and every basic needs that human beings need in their lives. If you look at Maslow’s Hierarchy of Needs , there are too many human needs that are missing in my life.

If you make me, I can still make a list of things I should be grateful. But they don’t mean anything to me at the moment. I’m bitter and envy of other people, which I hate seeing inside of me.

Dr TL didn’t judge me of having those ugly feelings. He just listened, which I probably needed to tell someone. These are non productive thoughts. And I know talking about them makes things worse. I need to stay away from those thoughts. They don’t belong to me.

He steered the topic away from my depressive mood. And I went along with him. Anything that I can talk with someone that is nothing to do with my ugly thoughts are helpful.

He asked if I’m angry. I checked and said no I’m not angry anymore. I’m happened to be very unlucky. There is no justice for that. At this moment, I’m not sure if that means I’ve given up or I’ve accepted.

After talking about variety of issues in ME/CFS, he gave me a new assignment. It is to sit in the sun, and read Haiku or Poem. I’m willing to give it a try once this rain stops and start having sunshine again.

It’s not an easy assignment for me. My sleep cycle has been reversed and I’m heavily fatigued or exhausted after I wake up. By the time I could get out of bed and ready to sit in the sun, it’s almost sunset. Sun or bright light also makes me more fatigued. But I will give it a try. When I need to hang on to something, it would be a good idea to have some assignment that someone checks I follow. Although it is not an easy task, I would say it is doable.

In a meantime, my rehabilitation exercise is on hold. I’m physically struggling (and that is the reason for my depression). Dr TL knows I will get back on it once I feel okay enough to resume it.

Magic didn’t happen. But the meeting keeps me hanging in there. Dr TL is my medicine. And that is the reason why he still sees me smile even when I’m depressed and struggling. And I can mean it that I’m grateful to have him.

Taking a day at a time. That is all I can do. Hopefully, flare up will ease eventually, and then, my mood will lift accordingly.

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