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Little Relief

Posted Sep 11 2008 5:04pm

During the week, I received fully executed lease renewal agreement. The landlord contacted me and advised that the maintenance job would be attended sometime next week. It seems like I can keep stay here for now. Now I am feeling ashamed of making such a drama out of it.

Different Blue Care nurse knocked on my door on Tuesday morning out of blue when I was weak and almost paralysed. As I was told two weeks ago that I would have the next visit on Wednesday AFTERNOON and she would leave message on my phone the day before to let me know what time the visit would be. None of her word was followed and I had to explain the same thing including about myself all over again to this nurse. If she came when my body has more energy reserve and strength, it wouldn’t be such an effort to keep explain same thing over and over to different nurse every fortnight.

I asked her to cancel the cleaning service as it just happened to be too stressful for me. She was puzzled by my request and asked if I do not need the support anymore. I explained that I NEED all the help I get, but I found it was just too stressful to cope. I also expressed my frustration of finding that the support I could receive from the same organisation is completely different. And I am struggling to find the way to live with severe ME with little help.

Just explaining those facts was struggle. My cognitive function was close to non existence and no words came to my mouth or brain. I broke into tears from the frustration. And I slide onto floor from the chair as my energy reserve was disappearing and as getting exhausted.

She told me that she would type in on office data base that there will be only afternoon visit and make phone call the day before. Then she suggested that she would organise a different cleaning lady for me as she realised that I need support and it seems like the problem may be coming from personality differences. She would also organise a chaplain to come and visit. I said I am not following any religion. But she explained the chaplain service is not for religious purpose, but just to have someone to talk to. (I might ask the chaplain if they can find me a help with grocery shopping, as nobody seems to understand it is an essential support I desperately need.)

She was here for 10 or 15 minutes. By the time she left, my brain cannot recall her name anymore. I knew I should have written it down, but I didn’t have energy to do it, either.

I am grateful that I am getting help. I do not wish to push my way arrogantly and demand the service no matter what. I respect they have rules and regulations that they must follow. I know very well that people who work for community service organisation genuinely want to help other people in needs. Sadly, it is just the fact that the support carefully coordinated by them could do harm than help to my case. It is not their fault that they have no idea about ME. Doctors do not have any idea and still not trying to learn about it, either. And most of the times, only peaceful solution I could have is to stay away from stress. So, I am half prepared to lose Blue Care service all together.

I just started receiving Blue Care service in this area. And the nurse this week encouraged me to be patient little longer as it takes time to have things in right place. I know they are trying to help. So I will wait and see a bit longer.


My friend M came to help me with grocery shopping today (Saturday). As she was on the way to Brisbane for her auntie’s 70’s birthday, I thought she could only have about 1 hour with me. To my delight, she told me the party is actually tomorrow and she is not in hurry. What more surprised me was that I was not too bad today and I actually had strength to brush my teeth and got dressed even before she arrived.

Her support and understanding are just priceless. She always makes me feel so comfortable and she genuinely care and worry about me. With the miracle strength I got today and her support, I decided to go out to the shopping centre with her, instead of waiting for her to do my shopping at home.

I had a huge shopping list, but I always prefer to walk through every aisle as it is easier to remember and pick up things I need. Half way through, I was feeling my energy reserve was getting lower. Then, I started having cognitive problems. I started struggling to respond M’s questions, choose or decide on items I need, and needed to talk to myself to keep my brain functioning. Usually, that is the sign that I have to stop everything and go home. But I felt that I could push bit more as M was there. And I wanted to pick up as much items as I could, so that I don’t have to worry about another grocery shopping trip for another 6 weeks. (I really do not feel comfortable making my friend drive long distance to help me with grocery shopping often.)

Once the energy reserve start going down, it goes down very quickly. I started to feel as if my battery level was close to dangerously low and my cognitive function was coping with shopping anymore. It was a similar panic when my laptop battery becomes low and warns me that I have to save my work immediately and plug my laptop on the wall.

M suggested that we could do bit more grocery shopping on Monday. She had kindly rung Medical Centre near me and organised an appointment with a doctor on Monday. She will come and see me on the way back to Gold Coast on Monday and take me to the doctor. I have no idea how I will be on Monday, especially after the big day like today. But she already adopted “play by ear” attitude for me, which I appreciate so much.

I didn’t get everything I wanted, but I knew my body could not cope anymore. So we queued and waited our turn at the check out. It was a busy time and we had three customers with trolley full of items before us. It was not good for a person with orthostatic problems. My body had enough and I had to sit down. M turned around and asked if I was okay. Then, the lady behind me realised I was in trouble. M suggested me to sit at the chair at the other side of the cashier and she and the lady behind me helped me to get up.

I don’t know why but every time I get close to faint, I cannot keep my tears away. It could be just scientific body reaction, frustration, or fear. M came back couple of times to check if I was okay. I kept my head as low as possible. I realised people originally sat at the bench had all gone and there was only old lady sat the other end of the bench. She asked me “Are you okay, love?” I responded with weak smile and weak voice, “Yes, I’m okay. Please don’t worry.” As much as it was embarrassing, it was also comfort to know that someone actually care. I knew she couldn’t hear my weak voice.

She moved closer to me. After a while, she asked me again. “Are you okay, love? Are you dizzy? I know. It happened to me last week.” All I could do was nod weakly and smile weakly. But I really wanted to chat with this kind old lady. After M came to check up on me second time, the old lady asked if I wanted some water and gave me pat on my shoulder. I weakly explained that all I need now is to lie down. But my voice was too weak. I reached out to her arm and hold it to show my appreciation. M came to pick me up as I needed to pay for my shopping now. I squeezed her arm, looked into her eyes and said thank you again. Her kindness and understanding were so grateful and cannot find the right word for it.

When I come back to the check out, everybody was looking at me. People at the back of the queue were trying to find out what was the hold up for. When the payment was completed, I apologised and thanked to the check out lady and the lady behind me.

I also apologised M for making the scene in the public and thanked her for helping me. She kept cheering me up it wasn’t my fault and I was sick. I know what she is trying to say. And I appreciate that she stuck with me no matter whatever happens. But I could not stop feeling ashamed of myself.

I am in this for a very very long time. I am not in death bed. I am not old age. Obviously, I am not healthy. I am chronically ill, but apparently not sever enough to find the help I need. There is no category in this society where I fit in. I kept telling myself while we were walking to M’s car, “I have to get used it. I just have to get used it. This is my life now and take it as it is…”

I had this conversation with a shop assistant before supermarket.

“So, do you have flu or something?”

“No, I am chronically ill.”

“Is it cancer?”

“No. I wish it were cancer, not this.”

“What is it? (what could be so worse than cancer?)”

“… I have ME.”

“…?”

“Some people call it Chronic Fatigue Syndrome. It’s neurological problem and everything.”

“… (yeah, right…)”

Then, M rescued me saying, “It’s really hard because nobody really understand.”

The shop assistant was nice and trying to be friendly with me. We had to explain the situation that it is not easy for me to return the goods within 14 days if I found it does not do the job I expected.

Apart from those incidents, I had good day. M and I also had quality time. I listened to things concerning her life. I cheered her up. I wished I could be healthy enough to drive and see her often to be there for her. I know how she is feeling and how she is frustrated by her problems. And that is the reason why I just cannot give her text-book-advise, but I expressed how eager I am to help her and support her.

I smiled today. I laughed today. I physically hugged and touched another human today. I don’t have to worry about grocery shopping for a while. I even have chocolate and cookies to keep me smiling for a while. The kindness of M and the old lady I met today are still keeping my heart warm. I was definitely NOT invisible today.

Filed under: Blue Care, Friends, Invisible Disability, Kindness, Life, ME/CFS

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