Frustrated and Desperate

I am completely exhausted and frustrated. Since I had my challenging phone conversation with Blue Care two days ago, my condition got even worse.

I just don’t know which part of this simple English need time and university degree to understand. “I am very sick and living alone, am house bound and bed ridden and it is getting desperate to get some help.”

I had fantastic support from Blue Care on the Gold Coast for about three months before I moved here. They even got special permission from women’s shelter and supported me physically and emotionally. (Women’s shelter has very strict secrecy policy and nobody is allowed to know its address, not even your own mother. I may make a post about it in the future.) I had no choice but move away form their service to settle into unknown area. They told me that I was able to receive the same support at my new place, and that was the only reason I decided to move away from my friend, not that I had a choice. My file and referral had given to Blue Care in this area in December and I was supposed to receive a phone call from then as soon as they received my file.

It’s been 6 months and I still haven’t heard anything from them. I sent high priority email asking where the transfer process was in February and I had no response. During this period, my now long distance friend M was jumping up and down on the phone trying to speed up the process. The reason why I could not make the phone call by myself was because I was just too sick to do it, not because I was lazy. During this period, I had to move house again without any help, and it destroyed my remaining energy and strength. I haven’t been able to go out for nearly two weeks now and I have no idea when I will be able to do grocery shopping. I had run out of milk. And dog food was about to finish. The only reason I still had some food was because I haven’t been eating much. When M spoke to them last week again, they told her that they were going to get the referral from my old Blue Care and  would have someone to ring me… This was the third time they mentioned about getting referral.

My friends had offered to do grocery shopping for me. But I could not accept their kindness because I feel guilty to make them drive 1 and a half hour just to do my grocery shopping, and another 1 and a half hour to drive back.

I couldn’t bring myself to ask M. She has enough problems of her own. She works five days a week and always very tired. She hates driving long distance. And she already has done so much to help me.

So I pulled all my courage and energy to ring them. I struggled to tell them who I was and the purpose of the phone call. Thank God, the receptionist knew who I was and mentioned my friend M had spoken to her. It saved lots of energy and anxiety. But I could tell that no action had done and there was no intention of doing it.

She was giving me all the funny excuses and told me to ring Community Health and find out what was going on with them. It really upset me. They had no intention of giving me the phone call or sending me courtesy email. The referral went to the Community Health was for Social Worker and I was already told they could not help me in January. So I had to ask her if they (Blue Care in this area) provide housekeeping and grocery shopping assistance, because that is the service I had before and I have been waiting for. She mumbled and told me yes that is the service funded by government and they provide the service from their office. Then she told me that they do not do emergency support as if I was demanding the support right now. I told her that I was not asking for emergency service, but I needed their help sooner because the situation was getting desperate and I had no idea when I could do grocery shopping. I asked how long more am I going to wait, but she didn’t know. She kept telling me that paper work needed to be done before I receive the service as if I was demanding something unreasonable.

She told me that Intake Worker was not in the office that day, so she would mention to the Intake Worker that I called. She also suggested to contact Salvation Army because they have someone to do emergency grocery shopping for me.

I sent email to M to let her know that I spoke with Blue Care. I also mentioned about Salvation Army in the email, but I was going to find more detail the next day, because I was already exhausted from the phone call.  

When she got my email, she rang up Salvation Army to send someone to help me with grocery shopping as Blue Care advised me. First, she was given a wrong phone number by them. Somehow she found out the right office to request the help. She only found out that the emergency help was to give food voucher, not the physical help to do grocery shopping. Because of the wrong information given and misunderstanding between them, she had to have long confusing conversation with the telephone operator. M could not get off the phone as the operator kept asking if somebody could go to the office to pick up the voucher and she was telling over and over to him that was not what she wanted. After the endless questions to each other, she decided to rescue me by herself once again. (When she told me about this ordeal, I was so glad that I didn’t make the phone call by myself. My ME/CFS brain would have been crashed and stopped working half way through the phone call.)

When I got email from her telling me she was leaving her work now to come and help me, I got panicked. It would be about 50 minites drive for her and I just felt massive guilt in me. I sent email back asking her not to come because I was feeling too guilty to make her leave work early and drive the long distance. She didn’t take no for an answer and told me that was what she wanted to do so that she would feel better.  

I just cannot thank enough to her for her extra efforts to help me and still being my friend. I really hope that I will get better one day and pay her kindness back somehow.

The next day, I finally received the phone call from Blue Care that I had been waiting for 6 months. All these time, she had my complete file sent from the old Blue Care and she would know exactly how ill I am and what kind of support I was receiving from the old Blue Care. But I knew it was the first time she opened the file when she was asking me questions to do the “paper work”. I was told that their nurse would come and see me in 16 days and would do the assessment.

***

Sometimes, I get so frustrated. I do not know what other way I can make people to understand that I am very ill and I can not go out, therefore I need help.

When I say, “I cannot go out.”, I cannot go out for fun, I cannot go out to find a doctor, I cannot go out to pick up food voucher, I cannot go out to post mails, and I cannot go out to do grocery shopping.  I just CANNOT go out. I DID NOT wish to be sick. I WISH to live without getting help from other people. And when I say, “I need help.”, I mean I NEED help.

Please do not make me hate existing in this world anymore than necessary.